Category: medication

Diagnosed with IBD? What I want you to know as a veteran Crohn’s patient

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When you’re diagnosed with Crohn’s disease or ulcerative colitis it’s a lot to process. When I started this blog in 2016 and after living with Crohn’s for nearly 19 years, my focus has always been to be the voice I needed to hear upon diagnosis and what it was like to experience young adulthood with a chronic illness. As a 21-year-old, fresh out of college, I had to navigate my career, finding love, and becoming a mom with IBD on my own. The first decade I wasn’t publicly sharing my story and didn’t know there was a patient community to tap into online for support.

The first week I started experiencing Crohn’s symptoms-March 2005, Senior Spring Break in the Bahamas

Often as the years go by and we get beyond the initial shock of hearing the news and what this means for our lives, we tend to forget the challenges we faced to gain our footing. This week on Lights, Camera, Crohn’s I share some tokens of knowledge I’ve gained along the way that I hope will help you on your own journey, no matter where you find yourself at this moment.

Healing—physically, mentally, and emotionally is not linear. We all experience IBD uniquely—some people’s disease course is milder, others have it severe. We all cope differently with knowing and living with a chronic illness. Give yourself grace in the difficult moments. It’s ok to feel resentment or anger. It’s understandable to wonder at times “why me.” It’s “normal” to feel scared and anxious whether you’re a few weeks or a few decades in. Sometimes it’s taking things one hour at a time, other times it’s taking them one day at a time. Because of how quickly a flare up can strike, I try to live in the now and not worry about tomorrow.

You didn’t have control of getting your chronic illness, but you can control how you react and choose to heal from it. It’s easy to feel like you may be to blame if your health takes a turn for the worse. But understand this is not your fault. The unpredictability of IBD makes it feel like we’re often in the passenger seat and spiraling in circles, but this disease cannot control how you react, respond, and choose to heal from it. No matter what, you’re in control of the healing process. Whether it’s finding support through fellow patients and caregivers or through professional therapy, you won’t look back and you’ll be setting yourself up to take this on to the best of your ability.

There is no comparison game. Since the majority of people are diagnosed with IBD in their teens and into their 30s, it can be easy to try and measure your timeline and accomplishments to that of your peers who do not have chronic illness. It can also be tempting to look at people in the patient community who seem to have the world by the tail, when you’re struggling to get out of bed each day. This isn’t a competition of the sickest or a ploy to see who can smile through the pain and get more done. The only person you need to answer to, is who you see looking back in the mirror. You determine what you’re capable of and what you want in life. Your roadmap is yours and you’re right where you’re meant to be.

You set the benchmark for what’s possible. Your IBD is part of you, but it’s not your entire identity. Remember that even patient advocates are posting somewhat of a highlight reel. Even those who are working, in love, and parenting are dealing with their own struggles, too. My best advice would be to think about what you hope for in life (don’t even think of your IBD as part of the equation) and go after it. Yes, your health may cause some detours and roadblocks, but you won’t find your way unless you try.

No one knows your body better than you. I don’t care how many letters someone has after their name, they aren’t living in your body and experiencing what you feel each moment of every day. Be vocal when you need to be. Communicate as much as you can with your care team and paint the clearest picture of your reality. If you keep parts of your struggles to yourself or dumb down the severity of your day-to-day life, the only person you’re hurting is yourself. Learn about nutritional bloodwork and advocate for yourself to be tested for a full iron panel with Ferritin and Vitamin D. Get labs every 3-4 months so you can keep a finger on the pulse of what’s going on with your body. If you feel like your provider is being lackadaisical, don’t hesitate to get a second opinion. Take ownership of your health and find a provider who in your darkest moments you would feel most comfortable by your bedside in the hospital.

Make sure your GI specializes in IBD. There are gastroenterologists and there are gastroenterologists who specialize in Crohn’s and ulcerative colitis. Once you’re diagnosed with IBD, it’s imperative you try to find a GI who is an IBDologist. This can be tricky if you live in a rural area, it may mean you need to travel several hours to find a provider who fits the bill. If you move or are unsure of a good GI to check out, it’s helpful to reach out to your local Crohn’s and Colitis Foundation chapter and often they can help point you in the right direction.

Diet and stress levels matter. Read that again. Any doctor who tells you diet, and stress doesn’t impact your disease process is wrong. There are incredible registered dietitians throughout the US who specialize in IBD, and many of them have IBD themselves! Before you start restricting yourself or your child, make an appointment—most provide virtual options and this will help you get educated on what works best for you. What is a trigger for one person, isn’t necessarily a trigger for another. There isn’t a one-size-fits-all diet or else we would all do it.

Emotions will strike when you least expect them. Even almost 19 years in, I’ll sometimes break down and cry when I think about my Crohn’s or how it makes me feel. Just because you become a veteran patient doesn’t necessarily mean you fully ever heal from the hurt life with a chronic illness causes. It’s ok to have these moments where you may feel like you’re allowing your disease to control your emotions, you’re not. You’re human. It’s healthy to feel frustrated and to get emotional about what your life is like because you have IBD.

You’ve endured more than you give yourself credit for. As chronic illness patients we go through so much that often we don’t even bat an eye over experiences that would be extremely painful or stressful to the average person. Think about what a bad ass you are and how that carries over into each and everything you do in life. If you’re newly diagnosed you will get there—but even those initial weeks and months, you’re enduring more than the people who have their IBD under control and have a good handle on their body. No matter how many surgeries, scopes, scans, and IVs I’ve had, I always get a little teary eyed because it brings me back to 21-year-old me and then all the trauma that comes along with living with Crohn’s for 19 years. While those tears are sad, they also come from the strength of reflecting on what I’ve gone through to bring me to now.

Stay in tune with how your body is speaking to you through symptoms, do not ignore them. It can be challenging to communicate what you’re feeling to someone who does not have IBD. I get that. But by protecting loved ones, friends, and doctors from what you’re experiencing you’re preventing them from stepping in before it’s too late and before you know it your flare has gotten out of control and requires hospitalization. I used to be that person all the time. I would always internalize the pain, silently fighting through each day, doing anything possible to stay out of the hospital until the symptoms were simply unavoidable and required medical intervention. One hospitalization always sticks out in my mind. It was May 2009. I was a 25-year-old morning news anchor in Wisconsin. I was solo producing a 2-hour morning show dealing with horrible abdominal pain that kept making me throw up in the garbage can next to my desk in the newsroom as I struggled to put together the show. Finally, I couldn’t take it anymore and I had to call my co-anchor, who rushed me to the hospital. I was released from the ER hours later after my parents had driven from Chicago in the middle of the night only to return to the hospital that afternoon and have my dad carry me in his arms through the automatic doors. I was finally admitted and given the medical intervention I needed. Take it from me, you’re creating even more of an uphill climb for yourself if you don’t start speaking up when you initially notice something is awry.

The worst moments are just that, moments. When you hit your breaking point, when the pain seems overwhelming, and you can’t see the forest through the trees try to breathe. Go to your happy place. Recognize this is one day, one moment, I always tell myself “This too shall pass.” Go to your happy place mentally. Do mindfulness exercises. Shut out the outside world and focus on your breath. Detach from your body as best you can. Think of people who inspire you and bring you joy. Everything is fleeting. Each flare, each recovery, each prep, procedure, and surgery…it has a start and a finish. One day it will be a memory you talk about.

Pay attention to who is there when you when are quiet and when you’re going through the thick of it. IBD is too big to deal with alone. Lean on people you can trust, who you genuinely feel safe sharing your health woes with. This will be fewer people than you’d ever imagine. Be prepared to realize that many of the people you thought would be front and center to support you will be non-existent. It’s fine to mourn those friendships or relationships, but don’t waste your time or energy on them. Your disease will give you the ability to see who loves you and who wants to be present in not only the good times, but the bad. You can’t change people. Hold on tightly to the people who show up consistently, expecting nothing in return. Those are your people.

Emmanuel Acho shared a reel on Instagram recently that really hit home for me and caused me to reflect a bit on the people in my life and their roles. In the video he explains that friendship is like a house. You have your window, door, and floor friends. Window friends are outside looking in, they don’t know what’s going on in your house. They don’t have intimate access to what’s going on in your life. You can only let so many people into your house. Door friends come in and out of your life depending on the season. When life gets too hard or when your world turns cold, they might exit. Your friends might not be equipped for that season. Floor friends—aren’t going anywhere. You might track mud, but they will last regardless of the season. They are there to catch your tears and hear your fears. Remember—a house has more windows than it has doors and more doors than it does floors…if it has one good floor, you’re set.

Just because you need medication does not mean you’re taking the easy way out. I’ve been where you are. I remember lying helpless in a hospital bed and what it felt like to be told I needed to “break out the big guns” and start a biologic medication back in 2008 when there were only two options on the market for those with IBD. In that moment, we all naturally want to learn about side effects and what this could possibly mean for the long term. But please try and focus on the actual risk versus the benefit. As someone who has been on Humira since July 2008, I’m so grateful for my medication for allowing me to live a full life, bring babies into this world, and be a present, able-bodied, and active mom. It’s not all medicine, or all diet and lifestyle, often for many of us who have moderate to severe IBD we need a mix of both, and that’s ok. You can still thrive and be healthy, despite being on a medication with a black box label.

You are not a burden, and you deserve love. Any romantic partner who makes you feel less than, isn’t present when you need them most, or doesn’t show any empathy or interest in your daily reality isn’t going to stand the test of time. Use your IBD to your advantage to see your partner’s true colors. Be honest and upfront when you start dating and if you ever feel like you need to defend their actions or make excuses consider that a major red flag. Dating and marrying a person with a chronic illness isn’t for everyone, and that’s fine—but when it comes to people like you and me, we need a partner who is willing to take the challenge on beside us every step of the way. Find someone who you feel comfortable communicating openly with, who sees you for more than your disease.

IBD is not a battle to be “won” or “lost.” One of my pet peeves with any health condition or disease is when people say “so and so lost their battle”…they didn’t lose shit. Diseases are not a game. Oftentimes reaching remission is due to luck, disease severity, or surgery. I spent a decade of my life with active disease and have been in remission (thanks to surgery) for almost nine years. I don’t give myself credit for that, I’m not “winning.” It’s because of my efforts to stay diligent with my biologic, vitamins, safety labs, daily decisions, and check-ins with multiple specialists, but I also don’t think I’m at this point because of something special I’m doing compared to someone else. We’re all dealt a different hand of cards in life. Your IBD isn’t a win or lose situation—you’ll celebrate big victories and small ones, too, your disease can rob you at times, it’s a never-ending exchange and game of back and forth. You are not less than because you are flaring. You are not lazy for taking medication or failing because you struggle to follow a strict, regimented diet that may or may not help you. Once you stop thinking of everything as a “fight” it takes a bit of the stress, anger, and onus off your shoulders. IBD is a chronic illness, until there’s a cure, we’re in this situation until the day we die…that’s simply too long to be “fighting” anything.

Get ready to be extra proactive with your health. Due to the nature of our IBD and the medications many of us take, we are at greater risk for additional health problems. It’s important to get annual skin checks at the dermatologist. Make sure whether you have good vision or not that you’re seeing an eye doctor. Get cleanings at the dentist at least every six months. If you’re a female, make sure you get your well woman visits. We are greater risk for cervical cancer because many biologics don’t allow our bodies to fight off HPV, this may mean annual Pap smears. We’re also at an increased risk for breast cancer, so don’t delay your mammogram. Get a bone scan every 3-4 years, get one as close to diagnosis as you can so you have a baseline. Your GI may say it’s not necessary, it is. Steroids put us at risk for osteopenia and osteoporosis from an early age, this may mean you need to see a bone health doctor (yes, those exist). Those of us with IBD are at greater risk for pelvic pain, it can be helpful to see a Pelvic Floor Therapist who addresses those unique needs.

Faith can give you added strength and comfort. I understand faith is very individualized and looks different for each of us, but I can tell you as someone who is Greek Orthodox who has always been a faithful and prayerful person that I rely on my faith to guide me through my IBD each and every day. There’s a sense of comfort and hope that comes with believing God is watching over you through the good, the bad, and everywhere in between. When you’re diagnosed or flaring, it can test your faith. Hold on tightly to what you believe and lean on that (however it looks for you). I truly believe God gives his toughest lessons to his greatest teachers. One of my biggest fears as an IBD mom of 3 is that one of my children will get my disease one day. Each night before bed, I always pray with them and say, “keep my babies healthy, safe, and strong.”

My why. My motivation to push through each and every day.

Family planning takes time and effort. Just because you have IBD does not mean you can’t be a biological mom or dad one day. The journey will look a bit different, but this disease does not necessarily need to rob you of the experience if that’s what you want in your life. Communicate these desires with your GI so they can help prep your body for a baby. This can mean starting a prenatal vitamin and folic acid several months before trying. I had a colonoscopy before every pregnancy so that I could be given the ‘green light’ by my GI that we were cleared to try for a baby. When I was pregnant, my care was overseen by my OB, a maternal fetal medicine OB (high risk), and my GI. Unless you have perianal disease, you can have a vaginal birth, but oftentimes this is a discussion left to you and your care team. I personally chose to have 3 scheduled c-sections, because while I don’t have perianal Crohn’s, I didn’t want to risk tearing or causing a fistula to form. I would make the same choice if I had to do it all over again. I also stayed on my biologic through conception, pregnancy, and breastfeeding. These are all personal choices but there are many, many research studies available that show the safety and efficacy of doing so. If you feel you could have internal scarring due to past surgeries that could hinder your fertility, check in with a fertility specialist and have them help you investigate if there could be issues.

Educate yourself on insurance, prior authorizations, specialty pharmacies, and Pharmacy Benefit Managers (PBMS). Unfortunately, with IBD we are forced to do so much behind-the-scenes work to simply receive treatment and medication. You will waste countless hours and endless energy on the phone as these people give you the run around. Nobody ever seems to want to take ownership. Work with your gastroenterologist if you are denied a medication so they can write an appeal letter to insurance and go to bat for you. Stay on top of everything, don’t worry about annoying anybody. You gotta hustle. You gotta be frank and assertive. It’s not about hurting feelings; it’s about making sure people are doing their jobs and ensuring your course of treatment doesn’t get delayed because someone fumbles some paperwork. Our medications are time sensitive. Light a fire under people’s ass if you’re not getting responses you deserve. One of my friends on social media posted this over the weekend, “Managing specialty medications in January is an annual slap in the face to chronically ill people.” It sure is. This week will mark the first time I’ve ever received my injections late in the mail, due to a misstep in my GI office that I had to follow up on for over a week. Be extra proactive at the start of each year. Make sure your GI informs you about all the patient savings programs available, these can help you not only emotionally, but also financially.

You get the final say. No one but you gets to say what you do with your body. If a doctor wants you to do an enema before a scope and you don’t want to, don’t. If you don’t feel comfortable with taking a certain medication and your care provider keeps pushing it, they can’t physically make you pop a pill, take an injection, or receive an infusion. You must do your research, educate yourself every day, feel empowered by all you know and be ready to deal with the ramifications if you go against the grain or determine you want to try something differently. There’s not one “right” way to live with IBD. Be honest with your provider. Don’t say you’re taking a medication and then not take it, that’s not helping anyone or anything. Be a compliant patient, but an educated and empowered one at the same time. Measure all the risks and benefits and what your hopes and dreams are for your present life and for your future. Don’t ever feel like someone else can or should dictate what path your journey takes. Just because one biologic is a magic bullet for one person doesn’t mean it will be for you. You never fail treatments, they fail you. If a provider says “oh, you failed Remicade” … please correct them. “No, Remicade failed me.”

I write this as a 40-year-old mom of three—ages 6, 5, and 2.5 years old, married for almost 8 years, who has been on a biologic since 2008, who was diagnosed at age 21 in 2005. So much has changed for the better regarding the patient experience since that time. My perspective has come a long way. I used to be right where you are, so many are living your current reality. Instagram is the bread and butter for the patient community, that’s where you’ll find the most patients and caregivers transparently sharing. Follow the accounts, send a DM, comment on reels and posts, get engaged. Never hestitate to connect and reach out to me–natalieannhayden. Educate yourself through lived experiences and people who have paved the way for you, rather than Google. You don’t need to recreate the wheel, but this is your experience and your story. You get the final word on how you want each chapter to play out. Know each time you fall you will bounce back and that there’s a massive community of support here to catch you and cheer you on every step of the way as you rise once again.

Skin cancer scare: My experience as an IBD mom

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During my annual skin check at the dermatologist in September my doctor biopsied two small marks on my back. In the moment, my doctor expressed that she wasn’t concerned, and neither was I. Fast forward two weeks, and I was about to speak at a health conference for patient advocates in New Jersey when I received a phone call from an unknown number. I answered and was caught off guard when the voice on the other end was a nurse from my dermatologist’s office telling me both spots came back with pre-cancerous spots and that I needed to get excision surgery on both as soon as possible.

Hearing that news was unexpected. I felt unsure and scared. That anxiety built up until I finally was able to schedule the procedure for November 30th. Life as an IBD mom makes these types of health hiccups tricky. I had to keep pushing off the surgery because of different family activities and obligations during this extra busy time of year.

This week on Lights, Camera, Crohn’s I take you on a behind-the-scenes look at my patient experience and discuss skin cancer and IBD and what you need to be aware of.

How I felt going in

Going into the surgery I felt uneasy. I wasn’t sure what the recovery would entail. I’ve only had abdominal surgeries, a bowel resection and three c-sections. One of the spots was on my upper back and the other was right above my bra strap. I was worried about how it was going to feel to lay down, sit back, move my arms, pick up and hug my kids…the list goes on.

As always, I turned to our IBD community for input, intel, and perspective. The experiences and advice shared not only educated me but left me feeling comforted before I went under the knife. Here is some of the feedback I received:

“You only live once and it’s on your back. In my opinion, the only way to wear a scar bad is to wear it with insecurity. Cover it up with confidence, or reveal it with confidence, but if you do either with insecurity, that makes it much more obvious.”

“After surgery when you’re up and about, focus on excellent posture almost to the point of bending backwards. You’ve had a resection and with any abdominal surgery, you hunch over a little bit to keep the incision from pulling. Do the same with the back ones, but you have to kind of have a bend to your back. Move slowly and if it pulls, you’ve pushed too far. With abdominal surgeries, I stay very on top of pain meds, with this, I would make sure you’re in a little bit of discomfort, just so you know when you’ve pushed too far. Not enough to be in actual pain, but enough to be uncomfortable and feel it when it pulls.”

“Be extra careful with what activities you do with it being on your back. I popped stitches on my back once because it’s such a high-tension area. The worst part is having a scar left behind.”

“My doctor gave me an option: stitches vs no stitches. Choose closure with stitches, otherwise healing is long.”

“The local anesthetic stings a little, but nothing worse than a biologic that you’re used to. They’ll tell you to keep the sutures moist with ointment (NOT Neosporin) and covered during the day. Wash gently with your regular soap and water. The sutures on the back are usually in for about two weeks. Make sure the pathology checks margins (so you know all atypical cells were excised). Compared to everything IBD moms endure, this is a piece of cake!”

“Surgery is an easy recovery. I had stitches for two weeks. Make sure you keep the area moist with Aquaphor or Bacitracin. Be careful not to lift anything with the stitches so you don’t pop a stitch or cause further scarring by stretching the open area. It might hurt the first couple of days, but Tylenol will do the trick.”

“My best friend had a pretty good size excision surgery on her back, and everything went smoothly, and it was painless for her. She healed up nicely and the scar is minimal.”

“Recovery was straightforward! Just keep up on any pain meds prescribed and try to take it easy. I had a wide excision on my toe that sucked because walking was hard for a few days. Little movement until your incisions are healed a bit is helpful.”

“Sitting back and laying down might hurt for a couple of days, but you should be fine after that. You don’t want to pop the stitches. You can’t take a bath or submerge the incisions for at least two weeks. Showering is fine after 24 hours, but just be gentle with them. I did derm nursing for many years.”

“I’ve had this (Crohn’s med complication), and it was far less bad than I thought. Briefly painful, but recovery is quick. I found vitamin E cream super useful while it was healing or (La  Roche- Posay Cicaplast) also once healed. Make sure you rub the scar, so it doesn’t ‘tether’.”

“Find out your surgeon’s preferred ointment. Mine okayed Aquaphor. Set pillows so you can sleep comfortably once you find a position that works. The pain is worst at night. Sending you big hugs and wishing you speedy healing with clean margins!”

What excision surgery entailed

Leading up to the excision surgery—especially the week of—my mind started to race a bit when I went to bed at night and started thinking of the procedure and recovery. It was my first time needing something more than a biopsy at the dermatologist, so I wasn’t sure what to expect. The excision surgery process involved so many lidocaine and epinephrine shots that I was in tears by the end. The areas of my back were so sensitive and by the time I had 10-15 shots I could feel, I hit a bit of a breaking point.

One of the nurses brought me an ice pack to grip onto and it really helped stop my anxiety and shaking on the table. The actual surgery on the two spots took an hour. It’s always an odd feeling while you lie awake and know your body is being cut into. I have dissolvable stitches underneath my skin and on top on the incisions.

Here’s a photo of the two incisions. They are larger than I had anticipated, and I’m not thrilled about them, but I know once they’re healed, they won’t look so angry.

Recovery is not linear

The first night of recovery I was able to keep the pain under control for the first 10 hours or so, but I woke up at 4 in the morning in excruciating pain. I felt like my back was on fire and I couldn’t move. It was a horrible feeling. My husband helped me out of bed, and we went downstairs. He propped me up on a ton of pillows and set an alarm for my next pain pill. The first two days were a rougher recovery than I had anticipated, but I’m so grateful my dermatologist caught this when she did.

By day 3 I was doing laundry, cleaning, organizing my son’s room, packing up toys to donate, and making dinner. As I write this, I’m 4 days post-op and I just have slight twinges of pain here and there and itching sensations. The hardest part for me has been not being able to lift or hold my 2-year-old or being able to help my 4-year-old daughter who’s had a club cast on her dominant hand and arm and has needed my help to do everything from getting on the toilet to climbing into her car seat. That being said, my kids have all been incredibly patient and empathetic and my husband has been a rockstar at making sure I don’t overdo and feel supported every step of the way.

My toddler walked up to me when I was in pain and said, “your tummy hurt, mama?” Not this time, buddy. It amazed me that his mind went there when he saw me hurting. With that, he snuggled me on the couch and gently grabbed both my hands and kissed them.

Is there a link to IBD meds and skin cancer?

There is some evidence to suggest a potential association between IBD and an increased risk of skin cancer, particularly non-melanoma skin cancers such as squamous cell carcinoma and basal cell carcinoma. When I asked my surgeon prior to my procedure if being on Humira put me at greater risk for this, she told me there’s not enough conclusive evidence and she did not relate my situation to my medication, but I’m still not convinced. I was told that the pre-cancerous cells would have turned to melanoma if this was not caught.

The relationship between IBD and skin cancer risk is complex and may involve various factors:

Immunosuppressive Medications: Prolonged use of medications, such as corticosteroids or certain biologics, can weaken the immune system, increasing susceptibility to infections and possibly contributing to a higher risk of skin cancer.

Chronic Inflammation: IBD itself is characterized by chronic inflammation in the gastrointestinal tract. Chronic inflammation has been linked to an increased risk of certain cancers, including skin cancer. The inflammatory process may contribute to the development of cancerous cells.

Sun Exposure: Some studies suggest that those with IBD may be at an increased risk of skin cancer due to excessive sun exposure. It’s important to note that certain medications used to treat IBD, like thiopurines (Imuran and Purinethol), make the skin more sensitive to sunlight.

Genetic Factors: There may be genetic factors that contribute to both IBD and an increased risk of skin cancer. Some people have a genetic predisposition that makes them more susceptible to both conditions.

Final thoughts—Get those annual skin checks!

When it comes to skin cancer, we can control our sun exposure and how we protect our skin when outdoors and that should not supersede the importance of taking medication to treat and manage IBD.

Talk with your care team about the frequency you should be screened. Once you have skin cancer or a biopsy, it’s not unusual for bi-annual visits or even every three months. If I can share anything—it’s to get your annual skin check. Skin cancer is nothing to mess around with. Ignorance is not bliss. Give yourself peace of mind and schedule a dermatologist appointment, whether you have IBD or not. My husband and I have both had scares now when it comes to our skin. Be proactive and in the new year I hope you take the appropriate steps to make sure you’re in the clear.

Additional resources on Skin Cancer and IBD

IBD and the Risk of Skin Cancer (verywellhealth.com)

Does IBD Put You at Greater Risk of Developing Skin Cancer (everydayhealth.com)

Inflammatory Bowel Disease and Skin Cancer: An Assessment of Patient Risk Factors, Knowledge, and Skin Practices – PMC (nih.gov)

Risk of Melanoma and Nonmelanoma Skin Cancer Among Patients With Inflammatory Bowel Disease – Gastroenterology (gastrojournal.org)

Inflammatory Bowel Disease Is Associated With an Increased Risk of Melanoma: A Systematic Review and Meta-analysis – Clinical Gastroenterology and Hepatology (cghjournal.org)

The Patient Experience: Understanding Malabsorption in Inflammatory Bowel Disease

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Ever look in the toilet and much to your surprise you see a full pill in your stool? I’ve been there—and so many of us in the IBD community can unfortunately relate. Our unique digestive systems put us at much greater risk for malabsorption problems. For those of us with Crohn’s disease or ulcerative colitis, it can be a challenge to retain nutrients in the small intestine—such as proteins, fats, sugars, vitamins, and minerals and this can also pose issues when it comes to receiving the benefits of medications.

This week on Lights, Camera, Crohn’s we explore the various issues those of us in the IBD community may encounter when trying to absorb medications and the strategies employed to overcome these challenges. I ran an Instagram poll and asked our community: “If you have IBD, have you dealt with issues absorbing nutrients and certain medications?” Of the 175 people who responded, 47% said “yes” they have a problem with malabsorption and 50% had “no idea” if they do.

The reason why

You may be wondering why or if you are at risk of having issues absorbing new or current medications. Let’s look at the reasons why many of us deal with this issue:

Altered Gastrointestinal Transit Time: In IBD, chronic inflammation can lead to changes in the motility of the gastrointestinal tract. Fluctuations in transit time through the digestive system can impact the absorption of medications, as they may not spend sufficient time in the intestines for proper uptake.

Intestinal Mucosal Damage: The inflammation associated with IBD often results in damage to the mucosal lining of the intestines. This compromised barrier can affect the absorption of medications, making it difficult for drugs to pass through the intestinal wall and enter the bloodstream effectively.

Drug Formulation and Coating Issues: Some medications are formulated to release their active ingredients at specific points along the digestive tract. In individuals with IBD, variations in pH levels, inflammation, and mucosal damage may interfere with the intended drug release, reducing the medication’s efficacy.

Nutrient Interference: Medications are sometimes absorbed through the same pathways as essential nutrients. Malabsorption issues in IBD can lead to competition between medications and nutrients for absorption sites, potentially reducing the effectiveness of both.

Impact of Surgical Interventions: For those of us who have undergone surgical procedures, such as bowel resection, ostomy, or Jpouch, the anatomy of our digestive tract is altered. Surgical changes can significantly impact the absorption of medications, requiring adjustments in dosage or alternative administration routes. The small bowel, with its large surface area and high blood flow, is the most important site of drug absorption. Personally, I’ve had 18 inches of my small intestine removed along with my terminal ileum and ileocecal valve. The larger amount of small bowel removed, the greater likelihood you will deal with drug absorption issues.

What IBD patients have to say about malabsorption and medications

One of the many struggles patients face is knowing whether the medications they are on for everything from mental health to fertility are being absorbed into their bodies. Here’s what the patient community had to share about their experiences. All quotes are anonymous to protect patient privacy.

“I found that my Wellbutrin was landing in my bag whole, so my doctor broke the dose up into 4 smaller amounts instead of once daily—I’m not seeing the pill in my bag anymore and I am getting the intended benefits. I also was prescribed an opium tincture to take ahead of those pills to help give them their best chance at dissolving.”

“I had to start taking anti-depressants that were dissolvable. Unfortunately, there’s not a ton of options. When I switched to dissolvable from tablet/capsule oral, it made a huge difference.”

“In the past I was on Wellbutrin which came in an Extended-Release pill, and I would often see the pill come out whole. I mentioned this to my doctor, and she was able to get an Immediate Release version prescribed. If someone is on an Extended-Release med this may be an option for easier absorption. A compound pharmacy may be able to make it if it’s not already available in immediate release form.”

“The only difference was I had to take the immediate release version 3x a day vs. once a day for extended release.”

“I’ve really been struggling, and my psychiatrist suggested an absorption problem and recommended a patch, but my insurance denied it.”

“I’m a med student in the UK with Crohn’s. If you look up your selected antidepressant (amitriptyline, sertraline, etc.) on the British National Formulary, there’s usually a bunch of different formulations of the drug, either in pill form, patch, depot injection, liquid suspension, etc. If the desired delivery method is not available for that specific drug (like not for fluoxetine, but you still want an SSRI), you can scroll down to other drugs in class, check for interactions with current meds, guidance also for hepatic or renal impairment, pregnancy, the works. It’s entirely free and very user friendly.”

“I had trouble with absorption this summer when I was waiting to get my hiatal hernia fixed and acid was eroding my esophagus and medication before it could make it into my digestive tract, but I have surgery in July and continue to fail antidepressants and have other health issues that are unexplainable (exhausted and starving all the time for example) so hearing this input is so helpful to me.”

“I switched from Effexor capsules to tablets and I wasn’t digesting them at all. I frequently saw them in the toilet bowl and had to switch back to capsules and just take two.”

“I’m on an antidepressant and it just rips me up. I have absorption issues with everything.”

“I’ve always been on liquid anti-depressants just to make sure I am absorbing all of it with my ostomy.”

“I haven’t had any issues with my Zoloft!”

“I am currently on Celexa and occasional Xanax, no issues.”

“I’ve always had a slight suspicion about whether my Crohn’s is the reason my antidepressants don’t work.”

“I take an antidepressant that is dissolved on the tongue. Lamictal. It’s a mood stabilizer also used to treat anxiety and depression. Just started it, so far so good. Everything else went right through me. It’s been a struggle finding the right fit. SSRIs are awful and with an ostomy (at least in my experience).”

“On occasion during more severe flares I’ve noticed undissolved pills that I’ve mentioned to my GI. The advice was to keep an eye on it and if I continued seeing them, we’d need to reassess but thankfully those episodes were intermittent. I am, however, going to bring this up to my shrink because my response to meds is usually very suboptimal. Don’t think there are other forms available other than pills, but something to keep in mind.”

“Sublinguals are another good option for IBD patients for better absorption. I take a few of my supplements sublingually and my levels have been maintained well!”

“Not sure about anti-depressants. But I take the liquid form of many nutritional supplements for better absorption like Vitamin D and Vit B-12. I find I absorb it better that way. Of course, injecting is even better in terms of absorption, and I have occasionally had B-12 injections.”

“A good time for a reminder to always look at your poo. If you see what you think is a pill, make a note and if you see it more than once, contact your doctor. Some pills I may split for more surface area or open capsule (maracas) into spoon of applesauce, if it doesn’t compromise the med.”

“When I was in the hospital, docs would give everything they could IV because of the concern about absorption. It’s never come up outpatient for me though.”

Added concerns and considerations for Ostomates, JPouches, and Short Gut

According to The Ostomy Files: The Issue of Oral Medication and a Fecal Ostomy, “Because portions of the intestinal tract have been removed or bypassed, people with an ileostomy or colostomy may experience difficulty in absorbing and, therefore, gaining maximum benefit from oral medications. The shorter the length of the remaining bowel, the greater the problem of absorption, particularly in the ileum.”

Generally, people with descending or sigmoid colostomies absorb medications as well as people who do not have an ostomy. However, “enteric-coated tablets, time-release products, or large tablets” are designed for gradual absorption along the entire intestine (the ileum AND the colon).

The article goes on to share a helpful trick to do at home, “Place the tablet in a glass of water and record the amount of time it takes for the tablet to begin to dissolve. If the tablet begins to dissolve in 30 minutes, most likely it can be adequately absorbed in the body. Patients should be instructed not to crush tablets without first checking with the pharmacist because the practice may expose the medication to gastric fluids, which could cause gastric upset or inactivate the drug.”

Amalia Karlin, MS, RDN, Owner of the Ostomy Dietitian, says, “When a portion of the bowel is removed, psychiatric medications have less time in the gastrointestinal tract to be fully absorbed. This may lead to medications coming out in the ostomy bag still intact. Fast transit time amongst the ostomy population in combination with having an ileostomy, specifically, are additional risks for pill remnants ending up in the bag. Troubleshooting this issue may require changing the timing of the medication and the foods with which the medication is taken to slow down and thicken ostomy output and give the medication the best chance of being fully absorbed. Ostomates should share these concerns with the physician managing their psychiatric medication.”

Amalia urges patients to ask the following questions:

  • What is the release action of the medication?
  • Is the pill a tablet, capsule, etc.?
  • Are you seeing pill remnants in your bag?
  • What foods are you eating them with (we want to slow output when taking these drugs)

Ostomates I spoke with say liquid iron helps them more than capsules for boosting hemoglobin levels.

“I have trouble with absorption due to my ileostomy. My anti-depressants had to be changed because I could not absorb Long Acting or Extended-Release meds. They are too hard and did not break down. I also need to get B12 injections every three weeks because of deficiencies.”

Medications that don’t dissolve quickly may be absorbed inadequately, making some medications ineffective. According to an article entitled, “Medication Considerations for People with an Ostomy,” Medications that may not be absorbed adequately include certain antimicrobial agents, digoxin, mesalamine, levothyroxine, and oral contraceptives. Enteric-coated or extended-release medications should be avoided by those with an ileostomy because the medication is absorbed or partially absorbed in the colon.”

It’s advised that prior to ostomy or extensive bowel resection surgery, patients and caregivers discuss how surgery will impact the way medication is absorbed moving forward. Ostomates and those with short gut syndrome should monitor output and look for undissolved pills or capsules. If you see your medication intact after it’s been ingested, make sure to alert your care team. Having care providers (especially those outside of the GI space), who are knowledgeable and understand how those with IBD often have unique bowel integrity, makes all the difference.

To assure proper absorption medications can be prescribed in the following ways:

  • Liquid
  • Soluble tablet
  • Transdermal patch (an adhesive patch that delivers medication into the blood stream)
  • Sublingual (under the tongue)
  • Buccal (placing medication between gum and cheek)
  • Parenteral (means “beyond the intestine”—an injection)

If you are receiving medications in one of these formats and still not reaching the therapeutic range, it’s not unusual to be prescribed above the recommended dose. It’s important as patients we understand that our prior surgeries can effect not only prescriptions, but over-the-counter medications, too.

According to this study, “the effectiveness of oral contraceptives might potentially be reduced in women with Crohn’s disease who have small-bowel involvement and malabsorption. Due to the nature of how family planning goes with IBD, it’s imperative women with IBD communicate openly with their OB and GI to avoid unintended pregnancy, as timing and trying to get pregnant while in a remission state is optimal for both mom and baby.

Strategies to Overcome Medication Absorption Challenges

Individualized Treatment Plans: Tailoring medication regimens to the specific needs of each patient is crucial. Healthcare providers must consider the severity and location of inflammation, as well as any surgical history, to optimize drug absorption.

Alternative Administration Routes: For individuals with severe absorption challenges, alternative routes of administration, such as intravenous or subcutaneous injections, may be considered. These routes bypass the gastrointestinal tract, ensuring direct delivery of medications into the bloodstream.

Monitoring and Adjusting Dosages: Regular monitoring of medication levels in the blood allows healthcare providers to adjust dosages as needed. This personalized approach ensures that therapeutic levels are maintained despite potential absorption difficulties.

Final Thoughts

Medication absorption issues for those of us with IBD poses a significant hurdle. By recognizing the unique challenges, we face, healthcare providers can develop personalized treatment plans that address absorption issues and optimize therapeutic outcomes. Ongoing research and advancements in drug delivery technology continue to contribute to the development of innovative solutions, offering hope for improved medication management for the IBD community.

The Patient Experience: What the IBD community has to say about Rinvoq

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When you have IBD and need a biologic, it used to be all infusions or self-injections. But starting in March 2022 (for ulcerative colitis) and May 2023 (for Crohn’s) a daily pill known as Rinvoq (Upadacitinib), entered the game. Rinvoq is the first approved oral product to treat Crohn’s. This once-daily pill is prescribed for those with moderately to severely active IBD who have had a lackluster response or an intolerance to one more TNF blockers (such as Humira and/or Remicade). Rinvoq is also prescribed for rheumatology and dermatology conditions, such as rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, non-radiographic axial spondylarthritis.

Doses range from 15 mg, 30 mg, or 45 mg. According to AbbVie’s website, “Rinvoq is a selective JAK inhibitor based on enzymatic and cellular assays. Rinvoq works with your body to fight the inflammation that can lead to IBD symptoms. Rinvoq stops the activity of some inflammatory proteins known as Janus kinase (JAK) to help reduce inflammation.

This week on Lights, Camera, Crohn’s we talk with 29 IBD patients about their personal experience on Rinvoq, along with Dr. Uma Mahadevan about key information for those in the family planning stages of their lives.

What patients have to say about the induction dose and the quick improvement in symptoms

Rinvoq is the first JAK inhibitor medication that Brooke tried and she didn’t know what to expect. She started Rinvoq in July and says her body has done a complete 180.

“All of my immediate issues have healed, and my long-standing symptoms have begun to fade. In the beginning during the loading dose, I felt a bit more tired. But after two weeks, I had more energy and have experienced less symptoms. Most of my extraintestinal manifestations have cleared up.”

Brooke says she has caught two colds since being on it, so she’s still masking and being diligent around crowded spaces, especially during flu season. She advises fellow patients to talk to their physicians about the dosage they need.

“Because of how much I’ve been flaring, I’m on a higher dose longer than I may have been if I started in a healthier place. Make sure you and your care team agree on a dosage that is not only good for you, but also that you agree with.”

Brooke sets alarms to take her meds because she is used to an infusion or subcutaneous injection, and it’s important not to miss a dose of Rinvoq.

Tonya: I’m only two weeks in, so still on the induction dose, but this is the first time my symptoms have been somewhat controlled in four years.”

Sarah: “I just started Rinvoq and it’s helping me come out of a flare up.”

Melissa: “My 17-year-old son has been on Rinvoq for about six months after Xeljanz failed him. He’s doing great on it and it’s super easy since it’s a pill once a day. He has also been on Humira and Entyvio in the past. Rinvoq has been the easiest transition so far.

Jennifer L.: “I went on Rinvoq after Remicade failed me and then went on Cyclosporine to bridge the gap before I could switch to Rinvoq. I started it in December of last year and this has been the one drug that has subsided a lot of the symptoms. No nocturnal bowel movements, the only major side effects I’ve had is some acne, but I would say it’s hardly noticeable. I did have to come off hormonal birth control as a side effect can also be blood clots, so you can’t have two drugs that increase your risk of that together. I’m single and wasn’t really thinking about dating coming out of a huge flare, so it was a no brainer for me there. If you’re looking to get pregnant, I’ve heard you can’t be on it because studies have shown birth defects, so that’s a concern potentially for some women or for contraceptive options given that you’re only limited to non-hormonal options while on this.”

Krista: “My fiancé just started Rinvoq and after one day he was feeling better. His energy is up, he has an appetite again, and is showing significantly less signs of inflammation. We still have a journey, but it’s been a miracle drug for him.”

Lizzie: “I have been on this now for 3 months after Humira and Stelara stopped working. So far, my Crohn’s symptoms have subsided. I’m no longer flaring. I would say since taking Rinvoq, I feel more fatigued, but apart from that, I feel really good.”

Marla: “I started Rinvoq 24 days ago, so I don’t have a lot to tell you. I don’t think it’s anything bad. It’s hard to tell if the medication is working yet. I do blood work in November.”

Lauren: “I’ve been on Rinvoq for about one year now. Didn’t work at first, but found out I simultaneously had C-diff. I was on vancomycin and Rinvoq for about 4 months and was scoped for the first time in 4 years because I was in remission. I ended vancomycin and flared again. I will be transitioning to Skyrizi soon, but even though I’m not in remission, Rinvoq has been the only thing that has gotten me in the best place I’ve been in 4 years. I love the ease of one pill a day, no infusions, no shots, etc.”

The main reason Lauren can’t stay on Rinvoq is that it’s not safe for pregnancy and she hopes to have another child. She’s bummed this medication is the only thing that’s shown her improvements and that she needs to switch.

Amber: “I just started Rinvoq last week, so perhaps it’s too early. I am adding Rinvoq to Entyvio for fistulizing Crohn’s. The one thing we are trying to figure out is how it works with an ileostomy. I tend to have a fast track and has passed pills in the past and Rinvoq is an extended release.”

Dana: “I’m currently on Rinvoq! Although I’ve only been on it for 3 weeks, I don’t have any real side effects so far.”

Lindsay: “I’ve only been on Rinvoq for about 3 weeks. I was hoping for a more dramatic change based on things I have read. My fevers have gone away, and I feel like I have more energy, but I still go to the bathroom just as much and the urgency has not changed. I also had to give up breastfeeding to start Rinvoq, so that was hard!”

Sarah: “I started Rinvoq after Humira was not putting me in remission after 1.5 years on it (even with methotrexate added to help). I saw an immediate improvement in my stools. I might have a few pimples as a side effect. It’s only been 3 weeks, but so far, so good!”

Erica: “I’ve been on Rinvoq since May. I haven’t had any improvement. I was hoping when I started that it would work for me. I heard so many people call it their miracle drug. I was scared to try it at first because of all the warnings, but once I started it, I was hopeful. Unfortunately, it was not my miracle drug and I had to add Skyrizi to it…I’m still not better.”

Denise: “I’ve been on Rinvoq for about 7 years. I’ve been part of a clinical trial. I don’t think I have anything bad to say about it. I was so sick with few options, so I took a risk, and it fixed me. I don’t think I’ve had any side effects. I still get scoped annually as part of the study and my intestines have looked great. Sure, I still have tummy troubles, but not the main Crohn’s ones! I get blood work done every 3 months and everything has been normal there as well.”

Abigail was prescribed Rinvoq in late August 2022. At the time, she was hospitalized with the worst flare she’s ever had and was admitted 3 separate times for a 37 day stay. She was facing steroid and Remicade failure and running out of time before requiring emergency surgery. Abigail was given the option of trying Rinvoq for 2 weeks. If it didn’t work, surgery would be required to remove her colon. Her care team got insurance to approve it and she started it right away. Abigail took a double loading dose. Usually, you do 45 mg for 8 weeks, but she did it for 16 weeks instead.

“This medication not only saved my colon, but arguably my life, as I had faced death twice during that hospitalization. I was able to get off steroids. I now take 30 mg of Rinvoq daily and I’m in clinical remission. My next colonoscopy is at the end of this month, so it may show even further remission. I was nervous to start Rinvoq, since it is so new, but given the circumstances, I agreed to it. I am honestly so glad I did. The only side effect I have experienced is high cholesterol. My care team will be addressing this after my colonoscopy. I am forever grateful to Rinvoq for giving me my life back. I choose to do medication and therapeutic diet (SCD). For me, this combination has really helped.”

The visible side effects

Jessie started on Rinvoq to treat her Crohn’s before it was FDA approved because of a flare she couldn’t get under control. She was put on the 45 mg dose for 2 months and saw quick improvements in how she was feeling. After years and years of being poked and prodded for infusions and labs she says she’s so grateful to give her body a rest and just take a daily pill.

“Rinvoq has been like a miracle drug for me. Despite the side effects of weight gain, constipation, and acne on my face and body, I don’t even care because it’s the best I’ve felt in more than 5 years. I’ll take the acne and backne any day.”

Jessie spent hundreds of dollars on skin products and through patient support groups she was recommended CeraVe Moisturizing Cream with Salicylic Acid and CeraVe Body Wash with Salicylic Acid and has noticed a huge improvement. Both products are available over the counter.

Madison: “I am on Rinvoq and I hate it. Let’s say first, it works fast. Within 48 hours, my symptoms were gone, and it’s done a great job at keeping my UC in check. However, the side effects are awful. Acne is the most common side effect and I have it everywhere. My face used to be dry, but now it’s VERY oily. My cholesterol has gone up, which is a known side effect and doctors are keeping close tabs on it. Lastly, weight gain. Weight gain was recently acknowledged as a side effect and I’ve had that, too. The first-generation JAK inhibitors were notorious for weight gain, so I’m not sure why it wasn’t acknowledged in this second generation.”

Madison adds that it’s hard to acknowledge that Rinvoq is working well, but it comes with its fair share of side effects. While the side effects are annoying, she says they are not as bad as a flare.

Alexandra: “I took Rinvoq for 5 months. It did absolutely nothing for my UC, but it gave me horrible acne.”

Lisa: “I was on 45 mg for 3 months. I hated it. I had some sort of infection the entire time and had bruises everywhere. I started Skyrizi three days ago.”

Elizabeth: “I’ve had great results on Rinvoq, I take 30 mg along with Entyvio. My only complaint with Rinvoq is the acne.”

Jenna: “I just stopped Rinvoq. I had a horrible face rash as a side effect. It seemed like an acne flare when it started back in early August and no matter what I tried, it got worse and worse. My dermatologist and doctors both believed it was some sort of rash caused by being on immunosuppressant drugs and stopped my Rinvoq. I took an anti-parasitic and the acne is mostly cleared up.”

Kelly: “I started Rinvoq and only completed 6 weeks (the loading dose and start of the treatment). Insurance issues were part of the reason why I stopped taking it. I also knew that I wanted another child. If I was able to…and there were minimal to no studies for a safe pregnancy. The only symptoms I had were small rashes on my hands and feet, kind of pimple like, not painful or concerning…just something I noticed.”

Jennifer V.: “On Rinvoq and love it!! It’s a pill so it’s easy and it has put me mostly into a therapeutic remission. The cons: weight gain, fatigue, elevated liver enzymes, and anemia. All in all, if you are not having any more children, I would highly recommend this medication. I would need to see more time and research if I were to recommend it prior to pregnancy.”

Jennifer V. had to go off Rinvoq last week while she was taking Paxlovid to clear up Covid and she lost weight for the first time in ages. Now she says she’s back on Rinvoq and the weight is coming right back.

Emily: “I have had Crohn’s and lupus since 2020 and I took the highest dosage of Rinvoq, and it didn’t do much to help me. While I was on it, I thought I saw some improvements, but as soon as I went off it, I realized it wasn’t doing much good. It made my skin break out really bad. I often would pass the pill whole when going to the bathroom. It’s a big pill, easy to see. I’m on Skyrizi now and hoping to reach remission.”

Kendall: “I’ve been on Rinvoq about 3 months. My symptoms have improved, but I’m surprised at how many of the side effects I have experienced: styes, mouth sores, cold sores, and acne. I’m planning to stay on it. My IBD is not stable yet, but I’m hopeful Rinvoq will get me there. Afterwards, I’ll see if diet and lifestyle can maintain remission. It’s nice that you can start and stop Rinvoq!”

Implications for pregnancy and breastfeeding to consider

Sarah: “I just started Rinvoq and it’s helping me come out of a flare up. I am wrapping up my third month. I started to feel improvement after two weeks. It’s such a relief to take a pill after self-injecting for the past 15 years. So far, I don’t have any bad side effects. The only thing that stresses me out is that you can’t be pregnant while taking it, so as a 34-year-old, ready to have a second child, it’s in the back of my mind—how am I going to get off (and back on this), how will I keep my Crohn’s under control when I’m pregnant next? But, in the meantime, I’m grateful that it’s helped me get control over a bad flare that caused me to take a medical leave from my job.”

Allie: “I feel like I had a good experience on Rinvoq. I would say the good is that it works very fast. I was starting to feel better from my flare within 3 days. I was able to get off prednisone because it worked so quickly. The bad is that Rinvoq made me gain weight that I haven’t been able to lose, but my doctors won’t confirm it’s related to the medication. I also felt very bloated all the time. I did not like having to take a pill every day (going from being on Entyvio), so I would sometimes forget to take it. The last thing for me is that I’m still hoping to have another child and it’s not safe for pregnancy, so it was not a long-term option for me, even though it helped me achieve healing from a flare.”

Carmen started taking Rinvoq in February after multiple biologics and non-biologics failed to treat and manage her ulcerative colitis. So far, she says her experience has been very positive. She went into clinical remission within the first month of being prescribed 45 mg.

“I’ve since been tapered down to 15 mg and it’s still looking very positive. Bloods, calprotectin, and how I generally feel has massively improved, along with my quality of life. The negatives I’ve experienced so far have been some mild skin issues, mainly rashes on my face, chest, and upper back, this is currently controlled by over-the-counter salicylic acid face and body wash. I’ve also picked up a few fungal infections and have lost my big toenail because of one of the infections that required antibiotics. For me, these are minor issues and outweigh the overall treatment plan. My GI believes as we’ve decreased the dose to 15 mg, that these minor side effects will disperse over time.”

Carmen says taking a once daily pill is much simpler than some of the other biologic drugs that require visiting an infusion center and taking multiple other medications either intravenously or orally. The cost for me is relatively high for Rinvoq at $150 a month, but this will depend on what medical insurance and copay you have. All in all, Carmen says Rinvoq has been a positive experience and has done what other medications have failed to do.

Important Considerations Regarding Family Planning While on Rinvoq

Dr. Uma Mahadevan, MD, Director of Colitis and Crohn’s Disease Center at University of California San Francisco and lead investigator of the Pregnancy in IBD and Neonatal Outcomes study (PIANO) says when it comes to Rinvoq, the medication has been associated with birth defects in animals at the same dose as given to humans (30 mg), so she avoids prescribing this in pregnancy.

“I do not prescribe Rinvoq to someone who is about to get pregnant. However, Rinvoq is generally given to people who have not responded to anti-TNF, so if Rinvoq is the best medicine for them, I do not hold the fact that they are a woman of child-bearing age against them and give them the therapy to best put them in remission.”

Dr. Mahadevan says if a woman is on Rinvoq and becomes pregnant she has successfully transitioned patients to Skyrizi. This can be more challenging with UC as there are fewer options. The PIANO study is currently researching the safety and efficacy of these drugs. There are several Skyrizi patients being monitored right now and 2 Rinvoq patients so far. You can learn more about being a part of PIANO here. I participated in PIANO with my youngest child as an IBD mom who is on Humira. Being a part of this research is invaluable for our community and helps current and future families.

It’s believed that Rinvoq crosses into breastmilk, so you should avoid feeding your baby that way if you are taking this medication.

Rinvoq Complete Patient Support

Much like other biologics, there are patient support services in place that you want to be aware of. RINVOQ Complete provides personalized patient support when you need it. With RINVOQ Complete, you get 1-to-1 assistance with finding potential ways to save on the cost of your prescription and more. I use Humira Complete for my prescription needs.

You can also get help making sense of your insurance and finding ways to fit Rinvoq into your everyday routine.

If you have commercial insurance, you may be eligible to pay as little as $5 a month for your prescription with the RINVOQ Complete Savings Card. Click here to sign up for your RINVOQ Complete savings card.

Final thoughts

It’s important to remember that just because someone has a miraculous experience or a terrible one with a specific drug, does not mean that you will. I will say, with all the biologics that I’ve covered on Lights, Camera, Crohn’s the visible side effects (weight gain and acne specifically) were the most widespread and common among the patient population. So many of you said you felt guilty feeling “vain” about not wanting to be on a drug because of that, and I want you to know those feelings are valid and matter. At the end of the day, we all must measure risk vs. benefit and what matters most when it comes to keeping our IBD in check.

You can check out other Patient Experience articles that I’ve covered here:

Humira

Remicade

Entyvio

Stelara

Skyrizi

Puberty and IBD

Trauma and Worry Surrounding Blood Draws and IVs

Living with IBD and Additional Chronic Illnesses

Biosimilars: What Leading GIs want you to know

My J-Pouch changed my life

Project Crohn’s: On a mission to help young adults take on IBD

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There’s no doubt life with IBD brings on financial, social, and emotional pressure. These constant looming stressors can contribute to flares and unpleasant symptoms. This is where Project Crohn’s comes in. It’s a ministry that supports young adults with Crohn’s disease and ulcerative colitis. The main mission of this 501(c)3 non-profit, which launched in 2022, is to offer free access to mental health counseling, financial planning, and 1-1 mentoring. Anyone with IBD ages 18-30 is invited to apply for support programs that are possible thanks to generous donors.

This week on Light’s, Camera, Crohn’s we hear from the creator of Project Crohn’s and learn more about his mission to make a difference in the IBD community.

How Project Crohn’s came to be

Two weeks after John Christian Kuehnert’s 18th birthday, he started to experience intense gastrointestinal pains.

“It culminated in me passing out and being rushed to the hospital. A surgeon performed an emergency bowel resection, after finding a mass the size of a grapefruit on my intestines,” said John. “My surgeon saved my life, and I spent the next week in the hospital recovering. It took another eight months of slow recovery and meeting with gastroenterologists to discover I had Crohn’s disease.”

For the next 7-8 years, during college and after, John dealt with chronic pain that disrupted almost every aspect of his life. In recent years, he’s reached remission, but it took him a long time to get to where he is today.

“In college I started to see a clear connection between highly stressful situations and flare-ups of my disease. Sometimes, the internal pain would start less than a minute after being put in a stressful situation. Humira and 6MP have been crucial for me reaching remission. However, learning how to manage the primary stressors in my life has had a major impact on me reaching remission. I created Project Crohn’s to help others manage their stress and flare-ups more effectively,” said John.

The debilitating and unpredictable pain from IBD can lead to depression and anxiety and cause college students and young adults to have difficulty managing stressful coursework, while trying to juggle the debt from medical bills and college combined. John is determined to help ensure that no college students with IBD in the US face IBD alone. Project Crohn’s was created to provide the support his younger self could have benefited from.

Putting Mental Health and Financial Literacy in the Spotlight

Mental health is the primary focus of Project Crohn’s. The mind-to-gut connection is strong. This year, Project Crohn’s goal is to raise $100,000 to cover program costs for 25 young adults in the United States who are taking on IBD. Every penny from every dollar donated to Project Crohn’s is given to program recipients. By reducing stress and helping those with IBD learn to navigate life while managing their mental and emotional health, Project Crohn’s focuses on providing counseling and therapy services, while also building other helpful resources.

Here’s a look at the three main pillars of support that Project Crohn’s provides:

  • Personal mentoring: Ask helpful career-specific questions to help process challenging situations, while putting life’s crossroads in a positive perspective.
  • Financial advising: 1:1 virtual meetings to discuss your current and future financial situation, explore options, and suggest changes.
  • Counseling therapy: Promotes positive attitudes and develops effective coping strategies.

How to get involved and apply for assistance

You can apply for support directly on the Project Crohn’s website. It takes about 60 seconds. John wants people in our community to apply ASAP. Everyone who is accepted receives a scholarship, but currently, there are a limited number of scholarships available.

“We’re building a world where every young adult with IBD has full and free access to the secondary health resources they need to reach remission,” said John.

Connect with Project Crohn’s

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The Patient Experience: Reflections on IBD and Body Image

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One of the worst aspects of life with IBD (in my opinion) are the side effects of the devil’s tic tacs aka steroids and what they do to your outward appearance. It’s a shock to the system to go from looking malnourished and thin to having a moon face and an insatiable appetite coupled with irritability, the shakes, acne, and insomnia. The weight fluctuations patients endure throughout their journey is a rollercoaster of unexpected twists and turns. Our bodies transform from being thin and sickly to healthy and in remission with weight we’re not used to. While IBD is called an “invisible” illness, our outward appearances take a hit more often than most might think. Those around us often compliment us when we’re “skinny” and stay silent when we’re a normal weight—this is detrimental because there is SO much more than meets the eye.

These photos are three months apart. Pre-diagnosis and on 22 pills a day (60 mg of prednisone).

This week on Lights, Camera, Crohn’s we peel back the layers of complexity regarding body image and self-esteem with IBD. Hear the candid commentary and often heartbreaking reality from 27 patients and caregivers.

The steroid struggle

I always know that after 3 weeks of prednisone my face and looks change dramatically. I went from someone with aspirations to work in TV news, on camera every day, to not letting my mom take pictures of me. I started in the TV business as a producer and once I was off prednisone and well managed, I got promoted to an on-air role, talk about messing with your head. I used to dread being a morning show anchor and returning to the news desk after being out for weeks. Nobody knew I had IBD or what my health struggles were, but they could see something was up. The calls to the newsroom and the comments were mortifying. I used to chew gum all day long while on prednisone to try and curb my appetite. My former GI told me to be careful doing that because the ingredient Sorbitol can cause stomach upset and diarrhea.

Katie: “The moon face with prednisone really did a number on my body image. I was in seventh grade and the kids and teachers would ask me what happened and why my face was like that. My school nurse, after I was out for two weeks because of a flare, came up to me and said, “Glad to see you, but honey, you look like crap.” I was in middle school when this happened, so I always just associated having Crohn’s with being ugly and that has been a long and hard battle. When you’re relapsing and you lose a lot of weight, people tell you that you look great, but when you’re healthy and in remission and you’ve gained weight back, people stop commenting about how good you look.”

Katie’s awful experience as a middle schooler inspired her to go into education. She is now a high school teacher. She says half the reason she went into teaching was to make sure students who have chronic illnesses, or who were absent, had someone who could empathize with them and just try to make sure that the experience never happens to anyone.

Danielle: “Prednisone destroyed my body image. When you look in the mirror and don’t recognize yourself, it’s really an emotional experience. In so many ways, prednisone is amazing, it got me out of my flare, but it turns my face into a swollen balloon. I can’t look at pictures of myself during that time. I am always so self-conscious when I’m on prednisone and feel like everyone can see it. IBD does many things, one of which is controls how you look which is a difficult part of the disease. I just got married and am in a minor flare and I delayed starting budesonide because I didn’t want to risk any moon face.”

Ross: “For me, what’s had the biggest negative impact is the side effects of steroid use, specifically back acne. This developed the first time I took steroids for my Crohn’s six years ago and it still has never gone away. It has had such a negative impact on my body image even though it’s not something anyone would really see. It has stopped me from taking my shirt off during summer months in public, or I’m self-conscious of having my top off at the gym changing room or even around friends or anyone I was dating. It’s something that I would almost always be conscious of these last six years. Even now, when it’s not too active, the scars and pigmentation and redness would stop me from taking my shirt off or make me very self-conscious around other people. I don’t think it will ever go away. It used to get me so down when I was already struggling with flare ups, etc.”

Laura: “Long-term steroid use was the most damaging for me. I was unrecognizable to myself and to others. I never found much support for those body changes and the mental health impact from ‘roids.”

Chanel: “I have struggled much more with weight gain from steroids and other medications than I ever have with the weight loss that is oftentimes common in IBD. Many informational graphics and articles out there about IBD always mention weight loss, but never the issue with weight gain. I’ve always had an unhealthy relationship with my body image because of the constant weight fluctuations due to medication.”

The fluctuations from being thin to gaining weight

I’ll never forget back in 2012 noticing that I was getting thinner and thinner by not eating any differently or increasing my physical activity. I was a morning news anchor at the time in Springfield, IL and I remember weighing myself each morning and seeing 1-2 pounds drop off each day…for weeks. At the time I wasn’t very well informed about IBD and didn’t realize that was a sign I was flaring. I was in my late twenties and gearing up for a trip to the Dominican for a childhood friend’s wedding. To be honest, I was happy, and I liked how my sickly body looked.

Fast forward to 2015, I was engaged and had bowel resection surgery. I had never weighed more than 127 pounds in my life and had dropped to the teens when I was unwell. My first post-op appointment with a new GI I gained seven pounds, and I wasn’t happy about it. My GI said, “this is what happens when you’re healthy and finally absorbing nutrients.” When you’re planning a wedding, healthy weight gain hits a bit differently.

Ever since then, I’ve been in remission and I’m so grateful for that, but my weight has been something I think about now—not only because of my IBD being in check, but after having three kids. My self-confidence and how I feel about my reflection in the mirror has taken a blow as the years have gone on.

Madison: “ When I was in a severe flare in 2020 after being diagnosed, I dropped 20 pounds unintentionally. I was normally around 127 pounds and during my worst flare I was down to 107 pounds. It was absolutely horrifying. I was devastated. I remember going to American Eagle to buy shorts in a 00 size because none of my clothes fit me. I felt sick and looked sick, which made everything 10 times worse. Not being able to eat food and constantly running to the bathroom in pain led me to be malnourished. I remember being at my GI appointment when we were trying to figure out a treatment plan and my nurse said after taking my blood pressure, “Madison are you eating?” I started to cry to her and said “everything hurts me. I can’t eat.”

While Madison was growing up, she always thought being thin was attractive. After being so severely sick, she now personally affiliates being thin with being sick.

“Being on prednisone to help was both a blessing and a curse as it helped get my flare under control, but also led to unwanted weight gain in my face, which makes me super self-conscious, especially in pictures. I know that side effects are temporary, but it can really hurt someone’s self-esteem.”

Fast forward to now—three years later, Madison is on a treatment plan that works for her and she’s proud of her body. She says she looks forward to being weighed at the doctor and at infusions appointments just to see a healthy weight.

“Weight and IBD is very fluid, and I constantly remind myself to give my body grace. When you’re losing weight on top of being sick, it can be detrimental to your mental health. You look in the mirror and see someone you don’t recognize.”

Ashley: “I’ve kept three different sized sets of clothes with my ulcerative colitis. My normal size, a smaller size for when I’m extremely sick, and a larger size for when I’m on prednisone. I’ve always been super self-conscious about my body size because a lot of time it’s out of my control. I also feel self-conscious when I’m so sick and lose weight and people comment about how good I look. I’ve felt guilty because I didn’t work out to “earn” that body. Then, I’ve felt frustrated because it made me mad that to look a certain way that got me compliments, I had to be extremely sick and unhealthy. Now, I have a permanent ileostomy. I am more confident in my body than I have ever been. I think that’s mainly because I’m so healthy now and I have more control over my body and life.”

Danielle: “So many things come to mind. I was 14 when I was diagnosed, and while I was sick prior to being diagnosed, I was judged for being too thin and accused of being anorexic or bulimic. Then upon diagnosis, I gained 30 pounds in 2 weeks from prednisone. At 14 years old, I was swollen and chubby and self-conscious. Since being diagnosed, I haven’t struggled with being “too thin” again, but with weight gain from prednisone and other medications. I’ve been told far too many times that “anyone can lose weight by eating right and exercising” but it’s not that easy with a chronic condition. Some mornings, I’m so fatigued and achy, I can’t get out of bed, and it takes my energy to get ready for work. My diet is extremely limited as I had a bowel resection and I’m allergic to dairy products. So, I live off protein and carbs which are not ideal for weight loss or even maintenance.”

Amber: “I have been on Stelara and have reached remission, but the thing people don’t talk about is after being in constant flares, you have no idea how much weight you might gain because of not flaring. It is a great thing and I’m so happy to be in remission, but now I must learn how to work on the nutrition aspect of it all. To be honest, all these years of being sick, I never had to worry about weight gain. I had to worry how much weight loss affected me and most people do more posting about that. Not the up sides of remission, but also what we do now to get onto a new lifestyle change. We have to learn a whole new way of nourishing our bodies.”

Stephanie: “I have found that when I’m flaring at my worst, I lose weight from not being able to eat and my body not retaining anything that I eat. I get so many compliments about the weight loss, but it breaks my heart because I might look good to others, but I’m at my sickest.”

Jennifer: “It’s crazy to know how jarring it can be to see your weight fluctuate so much so fast. Diagnosed with UC about a year ago and went through a huge flare, lost like 35 pounds. I hated looking at my body because I was under 100 pounds as an adult woman. Fast forward to now and I’m back to my “normal” weight, but still have issues with how my body looks as weight came back. It’s softer and less toned than before. I’m sure it’ll get back to the place where I was, but what if it doesn’t? Our bodies can go through so much and I’m thankful for its resilience, but the mental toll the fluctuations can be a lot to try and manage and reflect on as we navigate this journey.”

Louise: “I’m newly diagnosed and dealing with my second flare. I worry about the impact it has on me mentally because I am happier with my body when I’m very ill, and unhappy with it when I’m on steroids and feeling better. It can’t be good for us. Negative comments (from my mother!) when my face gets chubby on steroids and compliments from people when I’m not eating and very unwell are difficult to process. I get angry when they compliment me on how well I look just because I’m skinny, because I feel like it minimizes how bad things are and how unwell I am. I also like it because I like being slimmer. It is so messed up! When I get my appetite back, I try to fight the cravings and then binge and then feel awful for it. I have never been this way pre-IBD. I was always fit and healthy and in control of my relationship with food. There’s also a weird part of me that wants to look thinner because it’s an invisible illness, I want people to see how unwell I’ve been, so they don’t think I’m lying.”

Louise said it felt good to let it all out and that she’s never said any of this. Coping with big health issues comes first, but this annoys her during quiet moments. Her sentiments ring true for so many of us.

Myisha: “I struggle with body image a lot. I’m naturally 127 pounds, but with prednisone I got to 210 pounds and no longer recognized the person I was staring at in the mirror. I cried for weeks unable to recognize myself. I still cry now and I’m down to 139. My clothes still don’t fit, and I still have clothes that are a size 12-14 because I know that prednisone is an ongoing possibility and that I might get back to that size if I have a bad flare.”

Jessie: “The constant weight fluctuations have always made me self-conscious. It messes with your head too because when you lose weight from a flare, people say “oh my gosh you’re so skinny you look great, what did you do?”…but then when you gain weight (from medications not from becoming healthier) no one comments and you’re just self-conscious about it.”

Celia: “Before I was diagnosed, I was happy with losing weight. I was 13 and hated my body. I remember I had my diagnostic colonoscopy and the day after I took a picture of my stomach, it was as flat as it’s ever been. I felt good about how I looked, but keep in mind I was barely 100 pounds and 5’5’. I felt awful and I was tired all the time. As I started Humira and was gaining weight, I missed my old (very unhealthy) body. I constantly am reminded by loved ones that this weight gain is good. I just returned to the weight I was pre-symptoms almost 4 years later and I feel good overall! I still struggle with how I look and have developed a connection between food, weight gain and loss, and pain from Crohn’s that I still need to work on, but I’m doing my best. As a 17-year-old, we all tend to struggle with how we look, and I need to remember all my body has been through and done for me.”

Kindra: “Along with IBD, I also have Primary sclerosing cholangitis (PSC), so when I flare or I’m unwell, I lose weight and I can’t do anything to keep it on. I will eat all day long and you can count my ribs and see all my chest bones sticking out. I get compliments from people who don’t know me well about how thin I am/how they wished they could eat like me, and I never quite know what to say. When I am healthy and can gain weight and I have to shop for bigger clothes, I get a complex thanks to years of the American media diet culture.”

Leah: “I feel like weight gain after a flare has been challenging. All the body yo-yo and knowing the weight coming back on is so healthy and just what your body needs, but I believe it can be tough at times.”

Kelly: “I’m scared to go below a certain weight in fears of having a flare, but on the backside, I feel unattractive for my partner and fight with self-image.”

Bloating is a bitch

Even in remission, bloating is one of my main IBD symptoms. I often tell my husband, friends, and family, “you can physically see my pain right now. Feel how hard my stomach is. I look like I’m 5 months pregnant.” The reaction is always one of shock, raised eyebrows, and a bit of sympathy. Because of this I usually wear elastic waistbands or dresses. You’ll rarely ever see me wearing pants or shorts with a button. When I used to work in corporate America, my Crohn’s was out of control, and I would repeatedly have to unbutton my pants in the board room and lean back in my chair during meetings with co-workers. It was humiliating, but I always tried to make light of it. It’s amazing how we can wake up with a flat stomach and have a distended belly that truly looks like there’s a pregnancy going on by dinner.

Courtney: “Being emaciated from poor nutrient absorption, but bloated from gas and inflammation at the same time can lead to a confusing relationship with food. I don’t think it’s quite the same psychology as an eating disorder, but when eating causes you pain, or makes you literally change your pant size pre and post meal, it can be easy to want to postpone meals if you have plans, eat little in social situations, and can create an unhealthy relationship with food. Food is not the enemy, it’s a necessity—it’s all about finding the proper treatment and lifestyle to manage your IBD.”

Courtney adds that living with an ostomy is a huge adjustment with major impacts on how you perceive your body and appearance.

“My first ostomy was such a shock to the system. It feels almost surreal to see a piece of your intestine outside your body. If you have no control over output timing, which can leave you feeling broken and helpless during bag changes. It wasn’t until my second ostomy that I was able to recognize and be grateful for the benefits it affords me. I now live a healthy, active, pain-free life and couldn’t be more grateful.”

Patti: “My everyday bloated belly is like a giant dark cloud that blankets my self-image. I really try to embrace the rest of my healthy body and be grateful that I’m able to leave the house and do some functional activities and can sometimes hide my ugly belly if I’m completely emptied out, but my typical mantra is that I look disgusting because of my belly. I know this is negative thinking and messes with my mental health, but after dealing with Crohn’s for the past 51 years, I’m not sure I can ever stop that thinking.”

Alyson: “Bloat makes a girl feel AWFUL. Add in intestinal dysmotility with Crohn’s and I literally start the week at a size 8 and end in a size 10. Then we just switch to those wide leg pants with the elastic. Prior to my diagnosis, I never had to unbutton pants before or after eating. Now, it’s the first move the second we get in the car to leave because, ouch. It really makes you feel cute.”

Alannah: “For me weight fluctuation is my biggest struggle. One week I’m slim with minimal bloating then the next I’m bigger and bloating more. My partner has always struggled with confidence with his stoma due to weight gain even though he’s perfect as he is. He will never go without a top off ever.”

Naima: “Bloating is the worst. I am getting married in three weeks and I’m so worried about being bloated or gassy or having a minor flare. It’s hard to feel pretty when you can’t control how your body is feeling. Some days I feel strong and look lean—other times I hate how I look.”

Post surgery swelling, scars, and ostomies

Sabrina: “I’ve struggled with my body image after being diagnosed and going through three surgeries in a matter of two years. Seeing myself with a bag was hard and the changes that came with post-surgery swelling, scars, and fluid buildup. Body image and my new body will always be something I struggle being comfortable with.”

Mark: “I’ve had Crohn’s for more than 37 years and in that time multiple operations. I have many scars, but they are a part of my life and badges of honor in my constant battle with this disease. My IBD has thrown everything at me including short bowel syndrome, liver failure, osteoporosis, broken vertebrae, septicemia, lymphoma, coma, hepatic encephalopathy, and the list keeps growing. When I see my scars, it reminds me to keep fighting. Crohn’s will not win or stop me from living a full life. If someone asks me about them, I don’t hide. I tell them it’s battle scars. Body image is important to me, and it reflects how strong I am, and no one can take that away. I’ve worked all my life and traveled the world. This year (one year after coming out of a coma) I’ve been on a Pole-to-Pole journey.”

Martin says body image is both how you feel and how you look to others, as well as yourself in the mirror. In his early days post-diagnosis, as a young adult starting a career, he felt anxious and angry, but looked normal.

“Post surgery and with time came the additional stress of looking and behaving differently and additional comorbidities that accompany IBD. This included dental and bone issues. I was hugely lucky to have found my lifetime soul mate before my Crohn’s became active, illness and surgery haven’t changed anything for us. I have been various shades of ill with Crohn’s all my adult life and it hasn’t helped self-love, including self-image on any level. I survived and thrived because of my family’s support and very little real-world commentary on my body from others, although I sometimes preempt this by joking about looking like Homer Simpson these days. I now face further life changing surgery and I worry about the impact of my quality of life on my family. I no longer care about how others see me.”

From a caregiver perspective

Cindy: “My daughter is so deeply at war with her body, and I know thanks to chronic illness it’s so much more complex than simple teenage-girl-in-the-age-of-Insta feelings of “I don’t like my shoulders” or “I should watch my calories” (both of which are things she thinks). It is rooted in a real fear of and discomfort with her body and what it puts her through. She has so many years to live in her body and I wish more than anything I could give her peace with it…the same relative peace and confidence I have always had with my body. I just can’t relate.”

Keyla and her teenage son have IBD: “The struggle is real. Not only do we have a condition that there is stigma about, then we have constant weight issues, scars, bruising, and so much more that leaves us with body image issues. Our bodies have been through enough and done so much for us. Let’s care for it, nourish it, nurture it, and be kind to it.”

Taking on body image one day at a time

Focus on strength and resilience. Recognize your ability to navigate through challenges and adapt to changing circumstances. Once you’ve been through the flare and recovery process once, you know what to expect. Find comfort in knowing you’ve done this before and know most of the unpleasant side effects are temporary.

Seek support. Surround yourself with a strong support system of family, friends, or support groups who understand and empathize with your experiences. Sharing your thoughts, concerns, and emotions with others who have similar experiences (hello online IBD fam!) can help you feel heard and supported. Surround yourself with people and media that promote positive body image and self-acceptance. Be selective in the content you consume, ensuring it supports a healthy perspective and challenges unrealistic beauty standards.

Educate yourself. Learn more about IBD and its impact on the body. Understanding the reasons behind changes in your body and recognizing that they are a result of the disease, not a reflection of your worth, can assist in developing a more positive body image.

Practice self-care. Engage in activities that promote self-care and boost your self-confidence. This can include hobbies, exercise, meditation, or anything that brings you joy and helps you connect with your body in a positive way. Oftentimes our fatigue can hinder what type of daily activity we feel capable of, take everything in stride and don’t overdo. Start with a 10-minute walk and build up from there. The fresh air and simple movement will do wonders.

Focus on what your body can do. Shift the focus from how your body looks to what it can do. Appreciate the functionality of your body, such as its ability to heal, fight illness, and carry you through daily activities.

Reece was diagnosed with Crohn’s disease in 2014. Since then, he’s endured countless surgeries, flares, and setbacks, but chooses to focus on the beauty his life still bestows despite the challenges.

“I’m a shell of my former self, but I am okay with it. I’m grateful for my life. I have people who love me and care for me. When I look in the mirror, I see a fighter. All of the marks and scars are just evidence of my battles. It was not easy to get here, but here I am. I will never be the person I was before Crohn’s, but my disease has taught me so much about myself and life.”

Communicate with your healthcare team. Discuss any concerns or insecurities related to body image with your healthcare team. They can provide guidance and offer resources to support you in addressing these concerns. Therapy may help you cope with these struggles and provide helpful tools for living with the uncertainties and challenges.

Remember, your worth is not defined by the physical changes caused by IBD. Surround yourself with positivity, celebrate your strengths, and prioritize self-care to foster a positive body image and improve overall well-being. Most importantly, after reading this I hope you feel seen and realize that your struggles and insecurities are not unique to you.

There’s not a magic bullet for helping us cope with these insecurities, I know it can be a daily challenge. I truly believe we are our own toughest critics. If family members or friends compliment you when you’re unintentionally thin, respond by saying it’s because your IBD is out of whack. Speak up and inform those who have no idea what’s going on in your mind, with your body, when you look in the mirror, get on a scale, or have to think about how your outfit choice could impact your physical symptoms every day…it’s a lot. You are beautiful. You are strong. You are capable. There’s no one like you in the world. Your body, no matter the size, is working overtime with IBD, please take a moment to show yourself and it, some love.

The Patient Experience: What the IBD Community has to say about Home Infusions

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To receive biologic infusions at home or within a medical setting? That is the question. As an IBD mom of three who has done self-injections for 15-plus years, it’s intrigued me to see how many people in the IBD community now receive at-home infusions. This inspired me to dig deeper and hear firsthand what fellow patients have to say about their experience. When polled on Instagram—out of 260 votes, 55% of IBD patients prefer at home infusions compared to 45% who would like to receive their medication in a medical setting. This week on Lights, Camera, Crohn’s hear advice, guidance, the role insurance plays in all of this, and perspective on treating your IBD at home versus at an infusion clinic or hospital. I learned a lot and I think you will, too!

Discussing Home Infusions with your Care Team

If receiving your infusion at home interests you, here’s what you can do to get the ball rolling on making it happen.

  • Talk with your GI about whether home infusions are an option in your area and if they feel comfortable with you doing so. Discuss the risks and benefits. Your GI will need to write a prescription.
  • Call your insurance and make sure home infusions are covered in your health plan.

Amanda has been doing Remicade infusions at home since the pandemic started and she says it’s been much better for her. Being able to receive her medication at home and cuddle with her 4-year-old daughter and dog are big wins for her. Recently, she also receives daily IV fluids, and thanks to her Port and home health, she’s been able to do it herself.

Amanda: “Home infusions have changed the game for me. They make me feel safer as someone whose immune compromised. I almost always have the same nurse, and I don’t have to commute before or after. How grateful am I!”

She says how you coordinate setting up home infusions is dependent on your insurance. Personally, after talking with her insurance she found a list of home health agencies within 30 miles of her house and called and spoke with a few.

“Some did not administer my medication, some charged separately for nursing fee, and some were not taking new patients. Once I found a good option for my family, the home health company reaches out to your GI doctor, who then sends the script to the Specialty Pharmacy, rather than to an infusion center.”

When Bad Veins and IV issues Set You Back

One of the main reasons I chose to do a self-injection rather than an infusion was because of how horrible my veins are. When I was told I needed to start a biologic during a hospitalization in July 2008, it was the same hospitalization where it took three people and eight tries to start an IV on me. To this day, I’m still a bit fearful of getting IVs because of that traumatic situation. Several people wrote to me with the same concerns—this is something to consider if you typically need a Vein Finder for hospital visits and procedures.

Olivia: “I initially loved the idea of doing infusions at home. My first one went smoothly, the nurse had a bit of trouble finding a vein and drawing blood, but no problems after that. The ability to do my infusion in my bed or on my couch was so much more comfortable than the hospital! But then, the next two infusions, the nurse had trouble getting a vein and one had to be rescheduled because of hospital policy. That infusion took over an hour to find a vein. After that, we spent a month trying to convince insurance to let me go back to the hospital so I could use the ultrasound to get IVs placed. Ever since, I’ve been doing infusions at the hospital. The idea of doing infusions at home was nice, but it didn’t work for my situation.”

Meredith: “I get my Entyvio infusion at home. I don’t love it. It is more convenient than having to go to the hospital/office, but nurses often have trouble starting IVs on me and at home they are the only option. There is no backup and I’ve had a few bad experiences. Things have gotten better because I now have in my profile that I need pediatric needles, but they aren’t the standard, so those types of needles are not always supplied. The insurance decided for me that I would receive my infusions at home because it’s cheaper and since I’ve never had allergic reaction. The service by me is different, but there is no future scheduling. You know around the date that your next infusion is and then you’re contacted one day beforehand with a time. I’m too high strung to be comfortable with that, but it is what it is.”

Much like Amanda, Meredith loves having her dog there for support. When she initially started getting home infusions her dog needed to stay outside the room because she was too interested in what was going on, but now she’s used to the process and equipment and can snuggle.

Heidi: “My insurance made me switch to home infusions. At first, I was nervous because I’m a hard stick and always require a vein finder. I also just felt safer in a hospital setting. But, I’ve been doing home infusions for three years and I love it. I have my “old faithful” vein and I like being in my own home with my own bathroom and other comforts. I also have wonderful nurses whom I look forward to seeing each time. Everything is so much more personal this way.”

Melissa: “Sadly my veins are awful, and I wouldn’t want to chance the one person who comes not being able to get an IV started.”

Concerns from the Community Regarding Home Infusions

Ashley: “With my ulcerative colitis, comes other chronic illnesses. Which is true for a lot of people in our community. I have POTS, so having my infusions done in a healthcare setting is more reassuring for me because there’s more safety nets in place.”

Emilie: “I don’t get my infusions at home anymore (I used to!) because I hated it. The nurse was always texting me to reschedule, I was always having to deal with CVS trying to get my medication delivered on time, and I had to store all the stuff. It also made me feel like a “patient” in my own home. Mentally it was incredibly stressful organizing and coordinating everything and feeling like I was constantly sick because the medical equipment was always around. I much prefer going to an infusion center, where I just show up and they have everything ready to go. Just another perspective—I know a lot of people love getting infusions at home and I’m in the minority, but there are cons to consider.”

Mary: “I don’t currently do an infusion medication, but I have in the past with Remicade. My GI office set home infusions up for me after I did the first few in the office. It was more convenient for me due to the office being about 1.5 hours away from where I live. I was provided with an IV pole to keep at home among other supplies and a nurse came to my house to do the infusion. It was awkward at first, but after a few times it got better. Unfortunately, during one infusion, I had an allergic reaction unexpectedly, during which the nurse had to give me Benadryl and another medication. After that happened, I couldn’t do them at home anymore and had to go to the office. After two more infusions, my GI discovered I wasn’t responding to Remicade anymore and I had to switch to Stelara. The cons are the risk of something happening and not being in a medical setting. Luckily, I had a great nurse who knew what to do.”

Adam: “I prefer the clinic and the reason is, when I was on Humira and had to self-inject, I always worried I didn’t get it in the right spot or the full injection and miss some of my medication. For me, it’s a piece of mind that my infusion is done properly.”

IBD Moms Experience

Miranda was diagnosed with Crohn’s during the height of the pandemic. When she started Entyvio it was in an infusion center, and she felt like she was putting herself and her family at risk each time she went in. By receiving infusions at home, you can potentially be exposed to fewer hospital-acquired infections. This is especially important for individuals with compromised immune systems, as it helps minimize the risk of additional health complications.

“I saw a few ladies (connections on Instagram) who were receiving home infusions, so I asked my doctor about it. He said it would be no problem to connect me with a company in Dallas that handles nursing and medications for in-home infusions. My only obstacle was seeing if my insurance company would approve home nursing. After calling them to go over benefits, my insurance informed me I could receive in-home nursing. I did have to escalate the call to get it pushed through. At the end of the day home infusions were approved. The same company that ships my meds provides nursing. I do have to make a phone call every January to make sure coverage is good, but other than that it’s a flawless process. The nurse and I are close friends.”

Christina: “I specifically told my GI I don’t want to get infusions at home because I like my “me” time in the infusion clinic. Two hours to read my Kindle in peace! I also decline the accelerated rate…perspective changes when you have kids. My nurse jokes they’re my spa days!”

Krista: “I moved to home infusions once I had my daughter. It was more convenient because I didn’t have to find someone to watch my daughter (I had nobody to help or to ask) so that I could attend my infusions. I had a pleasant experience, and the nurse was fantastic. Being able to do infusions in the comfort of my home was fantastic, especially needing an infusion only 2 weeks postpartum, while recovering from a c-section.”

Getting adjusted to receiving medication without support from fellow patients in the room

Kristi has been receiving Remicade at home monthly since January. Her GI office stopped doing infusions at their office due to staffing issues. After a time or two at the hospital-run infusion center, her insurance company called her to see if she’d be interested in home infusions. Since she had been driving an hour each way for years, she jumped at the chance!

“The idea of not having to worry about getting my infusion during a winter storm was enough for me. My doctor’s office was hesitant at first. I was always on board with the idea, and I was shocked to see the cost was similar to my doctor’s office but significantly less than an infusion center. Home infusions have allowed me more flexibility in scheduling. I also feel like my resting period post-infusion is much easier since I’m already home. While I love home infusions, there are some downsides. I don’t think I would have wanted this back years ago when I started infusions. There’s a lot to be said about the community and the support I received just by being in an infusion room with similar patients. It was also nice to be in my doctor’s office monthly, where I could easily report any symptoms, I was having health wise. I am the person that needs to have my house looking perfect before company comes over, so that adds an extra level of stress during an infusion week. It’s also a bit odd to have the nurse here for so many hours. However, I’ve had two nurses so far and they’ve always been very good and very respectful in my home and if I wanted quiet time. Overall, I don’t think I could go back to going somewhere.”

Kristi says now that she doesn’t have the infusion room support, she relies even more on the social media community and the IBD family online. She also loves getting to snuggle with her dog and use him as a heating blanket while she receives her infusion.

Final Thoughts

Balancing the risks vs. benefits. As you’ve read, home infusions are not a one-size-fits-all approach. What works for one person, doesn’t for another. While the benefit of being at home is a big one, having to worry about the sole nurse at your house finding a vein and not knowing if you’re going to have a bad reaction are just some of the cons that can make the experience worrisome for people.

The convenience of home. Home infusions offer the convenience of receiving treatment in the comfort of your own home. This eliminates the need to travel to a medical facility and allows you to maintain your daily routine more easily. For IBD parents and caregivers it alleviates the need of finding childcare. By fitting infusions into your daily life, it helps to reduce the disruption that may come with hospital or infusion center visits. So many of us deal with medical PTSD and having the comfort and familiarity of home can help to ease that burden a bit.

Kat: “I received home infusions for years for UC. My doctor’s office got them set up because I live in a rural area. The pros were the convenience and being in the comfort of my home. The cons were having a stranger in my home for over an hour. Dealing with the company’s billing department was also horrendous.”

A more personalized treatment experience. You can have a dedicated healthcare professional who gets to know you and your specific needs, creating a customized care plan to address your individual symptoms and concerns. Many IBD people I speak with have a close bond with the nurse who visits their home and feel supported during the process.

Jill started on Humira and was later switched to Remicade infusions. She started receiving infusions at the hospital and then her GI recommended she try home infusions to limit exposure to germs.

“My GI’s office took care of the paperwork and I had the choice between two home health companies. This has been a game changer for any guilt I felt around missing work, because the nurse comes to my home and I can continue working on my laptop, if needed. Or I schedule infusions to begin at the end of my work day. I have a great relationship with my home health nurse and she knows me and my veins so well now. I value the relationship and level of care as well as the flexibility I have found with this option. It’s a win for my mental health as well.

Matt received home infusions for seven years. If he could pass along any advice, he says to be even more proactive about your health.

“I had to always coordinate shipments, supplies, and the infusion schedule. The pros are the flexibility and comfort, but the cons are not being at an infusion center where you can unplug and be in your own thoughts.

It’s important to discuss the option of home infusions with your healthcare team to determine if it’s a suitable choice for you. Your care team can address any concerns or questions you may have, educate you on the process, and help you make an informed decision. Remember, you have options and support to manage your IBD effectively, even when it comes to receiving necessary infusions.

The Patient Experience: What the IBD Community Has to Say About Skyrizi

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When you hear the word “Skyrizi,” you may think people are referring to an up-and-coming rapper or something fun, but in case you didn’t know, Skyrizi (risankizumab-rzaa) is a biologic drug that was approved to treat Crohn’s disease in June 2022. With the medication only being around for IBD less than 13 months, finding patient experiences wasn’t as “easy” as previous articles I have covered on Lights, Camera, Crohn’s about biologics, but I learned a lot writing this and I think you will gain a better understanding of Skyrizi after reading this, too.

Some background on Skyrizi

Skyrizi was previously approved for moderate to severe plaque psoriasis and active psoriatic arthritis. It’s worth noting that Skyrizi is the first treatment for Crohn’s that targets the interleukin-23 (IL-23) protein, which is responsible for inflammation in our bodies. By going after IL-23, Skyrizi helps reduce inflammation that can contribute to Crohn’s symptoms.

When it comes to dosing, patients receive an intravenous (IV) infusion that lasts about an hour at week 0, week 4, and week 8, followed by a self-administered subcutaneous injection with an on-body injector (OBI) at week 12 and every 8 weeks after that. This whole OBI situation is incredibly intriguing to me. I’ve been doing Humira injections for 15 years (!) this week, so I’m used to self-injecting, but knowing technology like the OBI exists gives hope to people who are fearful of needles and having to give themselves a shot. We’ll get into more about the OBI and what fellow patients have to say later in the article.

As far as safety, prior to starting Skyrizi, it’s advised that your GI order lab work that looks at your liver function. If results come back abnormal, this may not be the right drug for you. If you are in the family planning stages, pregnant, or breastfeeding, speak to your doctor. You can also enroll in the ongoing PIANO study, which looks at the safety and efficacy of IBD medications during pregnancy and beyond. Since Skyrizi is so new to the game, research is needed to help pave the way for IBD moms and their children.

Let’s hear from the patient perspective

Prior to starting Skyrizi in February (2023), Stelara failed Stéphane. I’m always careful with how I word this—and I wish all patients and healthcare providers would be conscious of not saying “the patient failed” anything—at the end of the day, it’s the drug that fails us. Stéphane says he didn’t start feeling a response until this month (July)—just before his second OBI (on-body injection). Although his calprotectin started to respond positively in May.

“The good is that I’ve responded and feel better. The bad is that we don’t know how long my response will last or how much it’ll stop inflammation and the formation of strictures. I’ve responded to Remicade, Entyvio, Stelara, but I’ve also developed strictures and had surgeries on all of them. I can hope that Skyrizi won’t continue this dire and disappointing record.”

Megan says before she started Skyrizi she was on the path to an ostomy. Entyvio had failed her, and she was experiencing perianal Crohn’s symptoms that were keeping her from being the mom, wife, and employee she wanted to be.

“My medical team and I decided to start Skyrizi and plan for a temporary ostomy to help my symptoms while we waited for the medication to take effect. After my second Skyrizi infusion, I noticed significant improvement in my symptoms! My bowel movements were more regular, there was a decrease in drainage from my setons, and I had less pain overall. Given my positive response to the medication, we were able to table ostomy surgery. I was extremely relieved and grateful that I had such a quick response to Skyrizi.”

Maha went on Skyrizi after the biologic she was on failed her after six years. As she was reeling from the reality that the biologic that had put her into clinical remission could suddenly not work anymore, she was hesitant and nervous about how to decide the next treatment options.

“After reviewing all of my options with my doctor, I chose Skyrizi based on data and evidence, and also on a gut feeling that this might be the right next step. I’m happy to report that I was right, and in the time that I’ve been on Skyrizi, I’ve achieved a state of remission I could only dream of, with no side effects!”

Elizabeth was in the clinical trial for Skyrizi. She says the biologic “changed her life.” After fighting a Crohn’s flare for seven years, it’s been the only medication that’s wrangled her disease under control.

Kelly started to flare last Fall, because of a loss of response to Remicade (infliximab). Her gastroenterologist suggested Skyrizi as an option that aligned with her drug priorities: namely safety and efficacy.

“The drug has very good data behind it, and she had heard of excellent response in the clinical trials. But it was very new to GIs across the US. It was a gamble, but one that we both thought was worth trying.”

Unfortunately, Kelly dealt with significant problems and delays with her prior authorization and needed to use the AbbVie Bridge Program to get her first infusion dose covered.

“My insurance company used my participation in the Bridge Program as a reason to deny my coverage for the drug. But AbbVie anticipated this issue and has several support programs that cover longer use of the drug and help with deductibles until insurance companies change their policies about drug coverage. I strongly believe that the months of stress and anxiety and daily hours-long phone calls to try to get this drug covered and delivered seriously exacerbated my flare symptoms,” said Kelly.

This cat and mouse game is something far too many of us can relate to. It’s sickening and ridiculous what chronic illness patients have to go through month after month, just to receive medication on time. Kelly was constantly anxious and worried about whether her Skyrizi would be covered.

Kelly tells me her first two infusions were easy and that she had almost zero side effects aside from very mild fatigue, like her normal Crohn’s baseline.

Kelly’s final Skyrizi induction infusion

“My third infusion was a little heavier hitting, like how Remicade infusions felt: a pronounced bit of fatigue, headache and brain fog that lasted less than a day. It was very tolerable. I didn’t have to premedicate before the infusions either, although my doctor had started me on budesonide to try to control the inflammation and keep the flare from getting worse while we waited for the Skyrizi to kick in.”

Cassandra says this is her third biologic and the whole experience in and of itself has been a bit nerve wracking. She lives in Canada and was the first to receive Skyrizi in her city.

“I didn’t love being the first, having the nurses learn on me, not knowing what to expect was difficult as I typically try finding online forums where others share their experiences. So far, I feel ok with it. Skyrizi hasn’t gotten me into remission, but we will see how it goes!”

The OBI (On-Body Injector)

Like anything new, getting used to a new medication and the mode of delivery can have a bit of an adjustment period. You wear the device on your thigh or abdomen for 5 minutes while the medication gets into your skin.

Kelly – “The neat thing about Skyrizi is the Obi, or on-body injector. It’s a brand-new device that is halfway between an infusion and an injection. It’s a small rectangular device with adhesive on the whole back that sticks to your leg. The needle in the device is tiny and I had zero sensation or pain. The button to trigger the needle is large and doesn’t have the same kind of chunky CLICK that the Humira pens do, which was nice and felt less aggressive and intimidating. Because the device infuses the medication into your body over several minutes, it uses an electronic pump. This means you cannot wear your fitness device or Apple watch or have your phone anywhere near it while you’re doing the injection.”

Kelly says she expected to have difficulty with the adhesive since it covered such a large area of skin and was strong. Other than mild discomfort while peeling it off (like taking off a band-aid), her skin didn’t have any other reaction.

Stéphane-“The written instructions for Skyrizi make the self-administering with the on-body injection unnecessarily complicated. I counted 33 warnings of what not to do, something that just generates anxiety. In fact, it’s simple and easy and the Skyrizi video they provide on the website is far more confidence-inspiring and useful.”

Stéphane says it’s helpful to watch the video after reading the instructions. He says the video is good at stripping the process down to essentials and showing that the injection process is in fact easy.

“The front of the thigh is simpler than the stomach because it naturally offers the flat, smooth, easily accessible space you need to place the injector. You clean the small end of the vial, stick it into the injector so it clicks, close injector door, clean area of skin, take the two strips off the back (top first), place it on your thigh and press down the adhesive, then press forcefully on button of injector,” he said.

Jessica made the switch to Skyrizi after being on Stelara. So far, she hasn’t experienced side effects and the medication has kept her Crohn’s in remission.

“The new on-body injector technology is weird and takes some getting used, but overall, it’s painless. It’s just been a little complicated to learn. If there’s a lump on your skin after you take the injector off. She says it goes away. While the needle doesn’t hurt, Jessica feels as the medicine goes into your system you start to feel more pressure.”

So far, Megan has completed two OBIs at home. She says the OBI is extremely easy to use. She’s done Humira, Stelara, Cimzia, and methotrexate in the past and says the OBI for Skyrizi is the easiest and least painful.

“I like to head to a secluded area, so I don’t chance my son trying to wrestle or play and accidentally knock it out of place. (IBD mom hack!) While I still have hard days and I’m not symptom-free, my hard days are much less frequent than before starting Skyrizi!”

Cassandra-“The OBI is amazing. I have been getting IVs monthly/every other month for 9 years, so to not have to get an IV has been wonderful. I have grown to really hate them and have had some bad experiences getting IVs so to not have to face that has made a world of difference. The OBI is so simple, so quick, and relatively painless (though I have felt some slight pinching/stinging). All in all, it’s very simple and I find the mechanism very innovative and cool! I haven’t had any side effects yet, aside from injection site swelling and redness the day of.”

Maha-“The best part is the ease with which I can do my Skyrizi injections via the on-body injector: it’s painless, quick, and honestly I forget that I have to do them until my next injection rolls around.”

Benefits of utilizing the Nurse Ambassador Program
Much like other biologics on the market, patients can tap into the free Nurse Ambassadors on hand to help ease the transition to Skyrizi. These nurses provide invaluable guidance and comfort every step of the way. Not only is utilizing these programs beneficial for patients, but also caregivers who may be helping to administer medication.

Kelly-“The device is so new, and the instructions can be long and a little complicated, but AbbVie has a nurse ambassador program that is free for all patients. I cannot recommend the program enough. My nurse ambassador came to my house before I even received the first infusion dose and answered all my hundreds of questions about the expected side effects, the rate of response, and showed me a demonstration with the OBI. It was helpful to get comfortable with the training device. My nurse ambassador also showed up to my house for my first injection and walked me through each step and was excellent at providing support.”

Natalie started Skyrizi infusions in May, 2 infusions down, 1 more to go before she starts with the OBI. She says while she hasn’t experienced huge benefits yet, she’s still hopeful. This is her first biologic and she’s appreciative of how helpful the AbbVie nurse has been through the process.

“I am still pretty new to this myself, but talking with the Skyrizi nurse has helped a great deal, especially getting their co-pay program and just having someone to check in on you.”

Jessica– “AbbVie has an amazing support system, and you can always have a nurse ambassador visit you in person or Facetime you. When I FaceTime the nurse, she guides me through it. Just talking to her while the injector is on for five minutes has made a difference.”

Cassandra-“I live in Canada, so things may be different elsewhere, but Skyrizi is the first biologic where I was sent a “Welcome package” which had a little health/wellness goal setter, appointment tracking sheets, a large needle disposable cartridge for my used injectors, and a mini cooler with reusable ice packs. I was super impressed, and it was fun and cute to receive. I have used the nurse ambassador a few times, especially at the beginning. It’s nice to ask questions or voice concerns with them. Having a nurse ambassador gives me peace of mind.”

Maha-“I really appreciate AbbVie’s commitment to patient education and support through their Skyrizi Hub which provides insurance specialists, nurse ambassadors, and an on-call line to help with any medical or financial concerns! My nurse ambassador walked me through my first injection and has followed up with me regularly to check on my progress both in terms of clinical symptoms and also quality of life!”

Struggling with the “newness” of being a biologic the first year it’s approved for IBD

Kelly ended up flaring badly between her third induction infusions and the fourth dose (her first at home injection). She met with her GI several times, discussing what to do. Since Skyrizi is such a new IBD drug, there really isn’t any extensive anecdotal evidence or patient stories about whether it be worth it to continue the drug, or if she would be considered a “primary non-responder.”

“We struggled with what criteria to use to determine if I just needed to wait longer or if I needed to switch drugs. My GI reached out to the Skyrizi sales rep for their practice and was told not to give up on the drug before 24-26 weeks because clinical trials did show that a non-trivial number of outliers did capture response to the drug later than the expected 8-12 weeks that was seen with most primary responders. At 14 weeks, I could tell that I wasn’t seeing any response to the drug because I was tracking my symptoms, daily bowel movements and pain. It was helpful to have that data to show us in black and white that I wasn’t doing well.”

Looking at the reality of the data and watching her symptoms escalate and her inflammation creep higher and higher despite the steroids and Skyrizi, Kelly and her care team made the decision to discontinue Skyrizi and move to another drug.

“It’s hard to hear from so many medical professionals that a drug with only about a 40% response rate is considered a raving success in the GI community. For me, that’s an enormous number of people who did not respond to this drug. I wish very much I had been one of them, because it’s scary and upsetting when you burn through a drug and cannot go back to it in the future because of possible antibody development.” says Kelly.

Ultimately, the decision to try a medication is a highly personal decision, one that should be made well-informed and jointly with your GI healthcare provider.

Maha says, “My experience with Skyrizi has affirmed that there is hope in all the new therapeutic modalities that are coming out, and that they can offer patients a strong quality of life while delivering treatment as minimally invasive as possible.”

Interested in reading previous Light’s Camera Crohn’s Patient Experience articles about other biologics?

Read them here:

Humira

Remicade

Entyvio

Stelara

Click here to check out the Skyrizi website.

Wearable Devices and IBD: Hear one woman’s experience as a citizen scientist

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Raise your hand if you’ve ever been blindsided by an IBD flare. My Crohn’s has landed me in the hospital with zero warning on several occasions. The unpredictability of IBD is a huge challenge we all face. But what if a wearable device could signal when our disease course is going off the tracks? What if we had warnings long before we were face to face with our next flare?

An ongoing “Stress in Crohn’s” study out of Mt. Sinai’s IBD Center in New York and The John Radcliffe Infirmary/Oxford University in the United Kingdom has been investigating this since February 2021, with the help of 200 participants. The study wrapped up in June 2022 and was conducted in partnership with 4YouandMe and funded by a grant from The Leona M. and Harry B. Helmsley Charitable Trust to 4YouandMe.

The goal? To empower those with Crohn’s to monitor stress responses and early signs of impending illness worsening in between clinic visits, while providing a means to navigate life and mitigate the consequences stress has on our disease journey. While stress has long been known to somehow affect our IBD, the details of the relationship are poorly understood.

This week on Lights, Camera, Crohn’s we hear from an IBD mom and educator who recently participated in the Stress in Crohn’s study in hopes of taking action to help advance our knowledge of diseases like Crohn’s and ulcerative colitis.

The mission of the Stress in Crohn’s study

Wearables such as smart rings, smart watches, and smart scales, along with our phones, can collect information emanating from us. They can record our physiology and our routines that we are learning to weave together into “clinical symptoms”- such as fatigue, sleep, and stress.

“The main mission of 4YouandMe (nonprofit) is to empower individuals to navigate their own health by using wearables and apps while sharing their own health related data and insights for the benefit of all. This desire was birthed after working at Apple on their Special Projects team and grew out of asking “why can’t the data that emanates from each of us come back and help each person improve their health on a daily basis”,” said Stephen Friend, President 4YouandMe(nonprofit) , Visiting Professor of Connected Medicine, Oxford University.

Tina Aswani-Omprakash, MPH, Wearables Research Coordinator at Mount Sinai’s Susan & Leonard Feinstein IBD Center & Patient Advocate/Founder of the blog ‘Own Your Crohn’s’ says the promise of wearable devices in the prediction of IBD flares and drug response is real and something she’s excited about.

“As we know, IBD can be a progressive disease and it is important to shut down inflammation quickly to prevent complications. The wearable studies at Mount Sinai’s Susan & Leonard Feinstein IBD Center are looking to develop algorithms using measures such as heart rate variability, sleep duration & quality, essentially autonomic/ parasympathetic nervous system fluctuations via data collected through wearable devices. The hope is to help predict IBD flares and showcase drug response utilizing wearable device signatures,” said Tina.

Meet Nicole, Stress in Crohn’s study participant

Nicole Pavlin became a patient at the Mount Sinai IBD Center in New York and received an official diagnosis of Crohn’s disease of the ileum and jejunum in 2021, but her symptoms began more than 16 years prior. At the time Nicole was just beginning her teaching career and she was focused on raising her family. Once Nicole received her IBD diagnosis, she would often search GI research publications to better understand Crohn’s, along with the treatments and procedures available to patients.

“By educating myself about the disease, I’ve been able to communicate more efficiently with my healthcare team and advocate for my needs. The opportunity to participate in IBD research is always exciting to me, especially since the results could potentially help patients in the future,” said Nicole.

Nicole chose to participate in the “Stress in Crohn’s Study” from July 2021 to May 2022, which captured a period of time when her IBD symptoms took a turn for the worse. Nicole had bowel resection surgery that involved the removal of 6 inches of her ileum, including her Meckel’s diverticulum.

Getting recruited for the Stress in Crohn’s study

You may be wondering how Nicole got involved with this study. A Clinical Research Coordinator from the Mt. Sinai IBD Center reached out to Nicole to see if she’d be interested in participating. The researcher told her digital devices were being used to learn the relationship between Crohn’s disease symptoms and stress to try and predict the onset of flares.

“I was given detailed information about the study and instructions on downloading the app. The researchers provided me with an Oura ring, an Empatica EMBRACE wristband, and a Bodyport scale. I completed various surveys and tasks within the Stress Study app each day. Whenever I had a bowel movement, I would note the characteristics of the stool on the Pooply app based on the Bristol stool scale. The Rescue Time app was optional, and I chose not to use that one,” Nicole explained.

Daily points were awarded for wearing the Oura ring and Empatica wristband, using the Bodyport scale, answering survey questions, and completing tasks on the study app. Nicole received extra “boost points” for using the devices multiple days in a row.

“Every two weeks I gained points for completing a video diary and a cognition task. About five times during the study, I completed a Calprotectin stool sample at home through the IBDoc app. I had a support team and check-in calls each month to answer questions about my mental health and medications. There was also a study visit every three months to complete additional surveys about my health and Crohn’s disease.”

By the end of the study, Nicole earned more than 20,000 points for completing these tasks and eventually received 5 stars for being a “Groundbreaking Contributor” to science. She says the point system was a big motivator and a fun challenge. The study lasted 9 months. Nicole was compensated $400, and she got to keep the Oura ring.

Wearables provide a “new voice of objective data”

Up till now, those with chronic diseases have had to use their memory and feelings to convey their diseases. The wearables offer a new voice of objective data for themselves and for their physicians about what precisely occurred.

“In this study of Crohn’s disease, we were more interested in unlocking the link between stress and flares in Crohn’s. This is part of a larger set of feasibility studies to build for individuals a “Stress Load Navigator” for we note a tight connection between not just inflammatory bowel disease, but also diseases as diverse as diabetes, heart attacks, arthritis and even Alzheimer’s,” said Dr. Friend.

Marco Altini, Founder of HRV4Training, advisor at Oura, and Guest Lecturer at VU Amsterdam, says recent advancements in wearable technology are making it possible to move away from the lab and monitor our physiology continuously, in real life, when and where it really matters.

“In the context of many chronic conditions, the ability to monitor our own, individual changes in resting physiology over long periods of time, and in relation to symptoms or other makers, could finally help us better manage our health,” said Marco.Devices such as the Oura ring can monitor accurately resting heart rate and heart rate variability over time. These signals are tightly coupled to our stress response, which is often an important part of the picture when managing our health.

Participating in research as an IBD mom

Since there is a genetic component to IBD, Nicole says she worries that her children could show signs of the disease in the future. She’s been very open with her children about the challenges she’s faced with the disease.

“I want to model resilience for them so they can see how to navigate difficult situations. By participating in research, I want to show them that we have a chance to use these challenges to help others and make a difference in the future.”

Nicole says it’s encouraging that wearable devices could potentially predict the onset of flares, which might offer faster treatment to prevent the escalation of inflammation and disease progression.

The importance of contributing to IBD research

Nicole’s hope is that by sharing her experience, it will inspire others to participate in IBD research and encourage more funding for these types of initiatives.

“Our research contributions as chronic illness patients have so much potential to benefit others in the future.  This study was fascinating, and it was truly a pleasure to participate in the research.”

She says by taking the daily surveys and performing the tasks, it made her feel like someone was paying attention to her struggles.

“It gave me an incentive to be strong, thinking that my challenges could be helpful to IBD research!”

Nicole’s final thoughts on wearable devices

  • Wearable devices present a great opportunity for patients to monitor their health and provide feedback to healthcare professionals. “Since the study, I’ve continued to wear the Oura ring, and it’s been especially helpful to follow my progress as I rebuild and strengthen my body. Each morning I can check my readiness level to see how my heart has recovered from various activity levels. My sleep analysis has also been helpful for establishing a healthy sleep routine.”
  • The Oura ring has captured periods of strain on my body, and I can often tell when I’m getting sick with slight elevations in body temperature and resting heart rate.  “During my Covid infection, the ring app even showed a fever spike along with elevated heart rate. I’ve also been able to monitor episodes of tachycardia with the help of the Oura ring and a KardiaMobile device, which is a single-lead portable EKG connected to a phone app. In addition, we have a pulse oximeter at home to monitor heart rate and oxygen saturation.”
  • With so much information to collect on our health, these devices can be overwhelming and anxiety provoking. “During the study, I was constantly monitoring my symptoms which led to a hyperfocus on my disease. Weighing myself each day also contributed to anxiety. Each time my weight dropped a little bit, I got worried and discouraged. The constant focus on weight can also contribute to issues with body image, and I’ve since decided to just weigh myself at medical appointments. For anyone considering wearable devices, it’s very important to keep moderation in mind.”

When we step out into the world, we need navigation tools. The same goes with wearable technologies. Soon, we’ll be able to use the data taken directly from our own bodies, during our day-to-day lives, to follow what is happening and help us to better navigate our own health paths. According to Dr. Friend, last year almost half of American adults were wearing some form of smart watch, and as of Spring 2022 more than 90% of smart watch users state they use health related apps to follow their health. 

Interested in becoming a citizen scientist like Nicole? Learn about additional research opportunities:

Wearable devices:

Current IBD Forecast research (ehive studies) 

Other Opportunities:

Crohn’s & Colitis Foundation

Contact a Clinical Research Coordinator at a Hospital, University, or IBD Center

Patient-Centered Outcomes Research Institute (PCORI)

In the future, Nicole plans to contribute to the Mount Sinai Million Health Discoveries Program which aims to understand how to treat different diseases in patients of all races, ages, and genders.  She has also been invited to collaborate with Nutritional Therapy for IBD whose mission is to improve the lives and outcomes of patients with Crohn’s disease and ulcerative colitis through evidence-based nutrition.

Closing thoughts

The information collected from wearables can be a gamechanger for us as patients. Many of us call our doctors or go to the ER based on symptoms, but if we have remote monitoring via such devices, we could perhaps prevent this disease from spiraling. Kudos to Nicole and the many other research participants who are helping to push the needle and change the future of what it means to live with IBD.

“To me, that’s not just hope. That’s the future of managing this disease better and truly owning our Crohn’s or ulcerative colitis,” said Tina.

Connect with Nicole on Instagram: @nicolepavlin2

Connect with Tina on Instagram: @ownyourcrohns

Concluding a 5-year Mother To Baby IBD Study: The Latest Results

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I remember the first phone call when I was pregnant with my oldest as a soon-to-be IBD mom. A researcher from Mother to Baby called me when I was newly pregnant and leaving work—I sat in my car in a parking lot, as she asked me several questions about my health, well-being, medication, and pregnancy thus far. That was Fall of 2016. Fast forward to now—and my oldest, Reid, just graduated from kindergarten. When I was diagnosed with Crohn’s disease at age 21 in 2005, one of my biggest fears was whether my chronic illness was going to rob me of motherhood. Back then, I was nowhere near ready to settle down, but the worry was always in the back of my mind.

When my husband and I got married in June 2016 and I was 10 months into surgical remission, we knew we needed to capitalize on my IBD finally being under control. Luckily, we got pregnant one month after getting married. Shortly thereafter, I started researching pregnancy studies for IBD moms. Lights, Camera, Crohn’s launched two days before I received a positive pregnancy test. I was fresh into my advocacy and had never been pregnant before. I didn’t have a community of IBD moms to lean on for questions or support as I navigated the unknown.

I came across information about Mother to Baby online and ended up being a part of their pregnancy studies for my first two children. The studies were different, but I had such a positive experience with Reid, that I decided to participate again with my daughter, Sophia. Reid’s study was a 5-year look at how Humira impacts babies in utero through kindergarten. When I was initially pregnant with him, this felt light years away. And here we are. Over the course of his pregnancy and until November 2022, I completed surveys, did phone interviews, had an in-person meeting with a doctor who came to my home and looked him over in front of me for any health anomalies, and most recently did an in-person cognitive neurobehavioral assessment at a nearby hotel with researchers.

We just got the results. While it’s rewarding to participate in IBD studies and interesting to learn, there’s always a part of you that worries about the findings and if mom guilt will ensue. It’s been reassuring and comforting to see my healthy kids, who were exposed to Humira in utero through the 3rd trimester, thrive and excel with milestones and in school.

The findings of the study

In November 2022, Reid and I met up at a nearby hotel with two researchers who provided neurodevelopmental behavioral evaluations for both of us. Reid’s assessment used a series of questions, games, and puzzles to help researchers determine his development of language ability, memory skills, and problem-solving abilities. The tests were selected to provide an evaluation of general mental ability and to describe specific abilities in areas of verbal knowledge and reasoning and visual-perceptual reasoning and organization. The tests were intense, I was proud of him for how he handled himself during the process.

Reid and I waiting to do our assessment with research administrators

According to Mother To Baby, “this battery of tests is best suited to examine the similarities and differences among groups of children. While it was not adapted for Reid’s individual characteristics, it can highlight general strengths and weaknesses in a child’s cognitive profile and indicate potential concerns when present.”

Behavioral Observations: “Reid was personable and interacted with both administrators on his arrival. He had a very positive attitude toward testing and quickly became comfortable with administration. He was engaged and attentive to the materials, listened attentively to the examiner and provided effortful responses even as questions became more difficult. Reid demonstrated good cooperation and attitude by following instructions and requiring minimal to no redirection from the administrators of his mother. He was focused and friendly for the full duration of testing.”

Summary of Assessment Results: “Tests were administered in a single testing session with one short break. The Wechsler Preschool and Primary Scale of Intelligence (WPPSI-IV) was selected to provide an evaluation of Reid’s general mental ability and to describe specific abilities in areas of verbal knowledge and reasoning and visual-perceptual reasoning and organization. This battery of tests is best suited to examine the similarities and differences in ability among similarly aged groups of children. While it was not adapted for Reid’s individual characteristics, it can highlight general strengths and weaknesses as well as potential concerns when present.”

The intelligence test was comprised of 10 subtests which measured a variety of verbal and nonverbal skills. Reid achieved a composite score in the average range. In the working memory category and spatial working memory, Reid performed in the high average range, which required him to remember and identify pictures that had previously been shown to him. On tasks that measured visual-spatial abilities, Reid scored below average. These tasks required him to synthesize visual stimuli to recreate block design.

“Reid was highly focused while processing visual stimuli. Overall, Reid is a bright and enthusiastic child. He was a pleasure to work with.”

Along with Reid’s assessment, I was also interviewed and performed tasks with an examiner on the other side of the room. I was assessed in the adjustment and life context. Tests included the Center for Epidemiological Studies Depression Scale and Parent Stress Index. My scores were within normal limits and my general mental ability also scored in the average range. Not gonna lie, the testing was challenging!

Reflecting on my experience

As an IBD mom of a 6-year-old, 4-year-old, and 22-month-old, who participated in pregnancy research during each of my pregnancies, I can’t begin to tell you how incredibly rewarding it is to know that your personal experience is helping to drive the future of care for women in our community who have hopes of one day being a mother. Sure, it takes a little bit of time and effort, but the data and research to show the safety and efficacy of medications while pregnant and breastfeeding is so needed. It’s comforting to know Reid is right where he needs to be cognitively and healthy physically, despite my high-risk pregnancy and exposure to Humira until 39 weeks gestation. We need more women to willingly step up to the plate and share their journeys to help guide the future of IBD motherhood and show all that’s possible despite our disease.

Opportunities to participate in research

Many people need to take medication during pregnancy to manage and treat their IBD. Yet, according to the Mother To Baby website, fewer than 10% of medications have enough information to determine their safety for use in pregnancy.

Do you have Crohn’s disease? Are you currently pregnant? If you answered “yes” to both questions, you may be able to help Mother To Baby advance the knowledge of how managing IBD in pregnancy impacts a developing baby. Click here to learn about how you can impact the health of future families by joining the Crohn’s Disease and Pregnancy Study.