The Patient Experience: Living with IBD and additional chronic illnesses

Imagine having a laundry list of medical conditions, along with your IBD. For many, it’s a stark reality. In a poll I recently conducted on Instagram, 64% of our patient community responded that they live with multiple chronic illnesses. This week—we hear from several women about what it’s like to juggle IBD and more.

As someone with Crohn’s disease I learned a lot by interviewing others and hearing about their personal struggles and triumphs as they face the unknown. Whether it’s trying to pinpoint which symptoms pertain to which illness a person is living with to coordinating a care team and living through a nearly 2-year pandemic that has shed light on how the world perceives our community—it’s heavy. It can be discouraging and it’s a lot. At the same time, finally getting answers gives some people hope and a feeling of relief.

As Brooke Abbott so eloquently puts it—it can be a domino effect. She started experiencing IBD symptoms when she was 18, she was diagnosed with ulcerative colitis in 2008 at age 24. Brooke also has IBS-D, Psoriasis, Ankylosing Spondylitis, trigeminal neuralgia, erythema nodosum, and asthma. Being a mom of color with multiple conditions in a world where patients are also “othered” has not been an easy journey. Finding a care team was a challenge for Brooke. She experienced unconscious bias, sexism, and racism when she was newly diagnosed. Not to mention irregular healthcare coverage.

“It reminds me of babysitting multiple children. The one screaming and crying got my initial attention. Once they were settled, I’d move on to the next child that needed my immediate attention. It’s a balancing act and I try to be as flexible with myself and give myself as much grace as possible. A breakthrough flare of one can ignite the flare of the another. Being diagnosed wasn’t the gut punch. It’s the days when my life is paused to cater to another illness after I just finished catering to another.”

Natasha Weinstein was diagnosed with Crohn’s disease in 2004 when she was only 11. Since then, she’s been diagnosed with IBS, Fibromyalgia, Arthritis, Migraines, Asthma, Carpal Tunnel syndrome, Tarsal Tunnel syndrome, Dermatagraphism, Vertigo, Ehlers Danlos Syndrome, Endometriosis, Pelvic Floor Dysfunction, Depression, Anxiety, OCD, and multiple vitamin deficiencies. She says juggling all these health conditions feels like a full-time job that she can never escape.

“It feels like my body is constantly falling apart. I feel like I live at the doctor, but I am grateful to be where I am today. I have an incredible job, a supportive family and understanding friends. My medically complex health has taught me resilience and strength, despite the frustrating and emotionally breaking days. Being chronically ill gives you a unique perspective on life. Add in MULTIPLE conditions and it’s a whole new ball game.”

Rocio Castrillon has been living with Crohn’s disease for 18 years. She also has Anemia, Asthma, Cataracts, Fibromyalgia, Glaucoma, Hypothyroidism, Uterine Fibroids, and Uveitis.

“Having multiple conditions is complicated particularly if one affects the other. I have learned to manage my conditions as best as possible, but my greatest fear is the flare of one of them at any given time, so I feel like I’m always waiting for something to happen. It’s extremely challenging to manage multiple providers, conditions, and medications. And they are all invisible illnesses. So, no one can “see” what I’m going through even though I may be suffering tremendously. That’s one of the hardest things for me…living a life full of chronic disease(s) in silence.”

Sarah Holleman was diagnosed with Crohn’s disease and Antiphospholipid Antibody Syndrome (APS) in 2018. It is also called Lupus Anticoagulant, but you don’t have to have Lupus to get it (although many people with Lupus get APS). Sarah went from being a healthy 28-year-old to having two chronic illnesses and seeing four specialists on a regular basis.

“It is utterly exhausting. Dealing with insurance, waiting rooms and doctors’ appointments is all-consuming. I had a healthy baby boy in May 2021, but going through a pregnancy with two chronic illnesses was challenging. My GI monitored my IBD symptoms, which fortunately stayed in remission. For APS, I had to switch from my oral medications to twice daily self-injections until the last few weeks when it went to three times a day.”

Trying to find balance

Laura Steiner was diagnosed with ulcerative colitis in 2012, she also has IBS, Asthma, hidradenitis suppurativa, IBS, and a few other inflammatory skin conditions.

“It can be confusing and frustrating balancing all of the different symptoms and having all doctors on board with everything. It also sometimes limits the available treatment options because for example, Inflectra that I am on for my UC is also used to treat HS, but since I’m already on it there is not much more the dermatologist can offer me for relief. UC is the only condition that tends to really interfere with work, so that is my #1 priority to manage, the rest I can deal with and manage.”

Meredith Ditty was diagnosed with Crohn’s disease at age 20 in 2011, she later found out she also has Primary Schlerosing Cholangitis (PSC), a liver disease that people with IBD develop. She also has Anemia, Gilbert’s Syndrome, Psoriasis, and Ovarian Cysts.

“I was so young, other people were living a normal life and I was stuck dealing with all of this. Thankfully, I had a great support system and had emotional, physical, and financial help, to get me where I am today.”

Emily Adams has Crohn’s disease and Lupus. She became symptomatic with both in 2020 at 26 years old. Her IBD has been flaring since July 2020. As you can imagine, being diagnosed during the pandemic made the process extra stressful and worrisome. Emily has been hospitalized five times in the last two years without visitors.

“Before I was diagnosed with Crohn’s and Lupus, I was very healthy. I was training to run my third half marathon and I was in my third year of teaching 5th grade science. Since getting sick I have had to stop working and I’m now on disability and I had to move in with my sister, as living alone was too difficult for me. My life went from complete independence to needing my family every day for help. Honestly, getting sick has made me more patient, empathetic, and kind. I’ve had a lot of time to think and reflect because my life is a lot slower these days. I appreciate the small things because now the small things are the big things.”

Alyssa Pinkham was diagnosed with Crohn’s disease in 2020 and was recently diagnosed with Gastroparesis and GERD. She’s dealt with anxiety issues and learning disabilities for more than a decade. She often struggles with knowing which condition is causing her abdominal pain. Alyssa credits coming to the realization that she was experiencing additional health issues to the friends she’s made through the online chronic illness community.

“It is difficult to navigate multiple chronic illnesses of the digestive system. They oftentimes have overlapping symptoms and if one condition is doing poorly, usually the others are doing poorly as well. It is also difficult having multiple gastroenterologists for the different conditions. In my case, they are on opposite sides of the state. It’s a challenge for the gastroenterologists to communicate their specific treatment plans with one another and with me so that they can provide an effective treatment plan that will put my Crohn’s and gastroparesis in remission. The lack of communication is frustrating and exacerbates my anxiety. When my anxiety isn’t being controlled it sets off my Crohn’s and gastroparesis conditions, which leads to more anxiety. It’s a vicious cycle.”

Katie Schimmelpfennig was diagnosed with Crohn’s disease in 2011, she was 21. Then, in 2015, she was diagnosed with nodular scleritis, an inflammatory condition that impacts the white outer coating of the eye. If left untreated, it can cause vision loss.

“It’s hard having two chronic health conditions and continues to be a challenge. I started therapy about a year ago. I wish I started sooner. Talking with someone has helped me. I struggle with feeling like my body is broken. I feel like I’m letting myself (and others) down because I’m sick more times than not. The book, “This Too Shall Last: Finding Grace When Suffering Lingers” by K. J. Ramsey was helpful to me. She writes about how our culture treats suffering like a problem to fix and the shame that comes with that all through a Christian point of view. It brought me comfort, understanding, and even some more acceptance for what I’m living right now. I would highly recommend checking it out.”

Feeling unsupported through the pandemic

Ableism existed long before the pandemic, but it seems that unfortunate mentality and attitude has been exacerbated since the start of these unsettling times.

Rocio explained, “While there have been many accommodations that have been made during the pandemic for the general public (i.e., curbside pickup, free delivery, etc.) I wish this had been the option for us long ago. Working from home is yet another dynamic that has allowed everyone to have the flexibility that many of us with chronic diseases need on a daily basis. It has become acceptable and more of a norm now, yet any previous requests for similar accommodations for us have always been denied or frowned upon. I’ve truly seen who supports and cares about others and who is selfish and out for themselves.”

Mo Lynn was diagnosed with Crohn’s disease in October 2019, when she was 23 years old. She also has Polycystic ovarian syndrome (PCOS), endometriosis, and non-alcoholic fatty liver disease (NAFLD).

“The world, the workplace, and the US health care system are not built for people like me. Throughout the pandemic, it’s been made clear to me that a lot of people find the deaths of people like me with chronic illnesses or disabilities as inevitable and meaningless. Never mind the value I bring to my family, my friends, and society. There will always be people who think that the lives of the chronically ill /disabled are meaningless.”

Katie says, “I choose to believe that most people are good and kind, doing the best they know how to do at the time. But it’s hard, really hard–especially for the chronically ill right now. I don’t want covid. I don’t want mild covid. I don’t want severe covid. I don’t want to give covid to someone else. I don’t want long covid. I know what it’s like to be sick for days, months, and years. When I personally know people who are choosing not to get vaccinated, it hurts. It makes me feel like they don’t care about me. When I see people not wearing a mask, or their nose hanging out, it makes me feel like they don’t care about me or the health of their community. So, my perspective on the world around me: we need to do better. We need to be better.”

Brooke says looking through social media at peoples’ selfishness and carelessness has made her sad and frustrated with the evolution of humanity.

We talk a lot about community and inclusivity on our platforms, but when it’s time to perform action to ensure that all are safe and healthy, we fail to do so if it feels inconvenient for us. Watching people fail their neighbors by simply wearing a mask, stopping the spread of this highly contagious virus is just heartbreaking. It’s also frustrating to watch people waste their health by risking it for a party, or a concert or a bar night.”

Rapid Fire Chronic Illness Tips

  • Having chronic illness equates to a lot of trial and error. From finding your care team to what works best to manage your health—be patient as you find what helps you get your disease(s) under control and recognize that what works for one person won’t necessarily work for you.
  • Seek therapy and don’t look back. When you are constantly at battle with your body and worrying about the what if, it can be overwhelming and all-consuming. Give yourself permission to take time to put your mental well-being first.
  • Keep your GI as the team lead or quarterback of your care. Let them guide the decision-making and set the stage for your care plan. Build your care team around your GI.
  • Rather than focusing on remission, focus on the thing that is ailing you the most and heal that. Once that is settled, move on to the next thing.
  • Try to let go of the guilt and shift your mindset about how your caregivers are sacrificing for you. Instead, think about their genuine care and concern for you despite your illness. They show up day after day because of their unconditional love for you.
  • See all your doctors in the same network so they’re able to share reports and test results easily. Making information accessible to your care team takes the burden off your shoulders to play telephone and relay information back and forth.
  • If you’re being dismissed or feeling unheard by your care team, remember you aren’t married to them. Find a new team. The time and effort are worth it. Ask for referrals.
  • If friendships and relationships feel toxic to you, let them go. Use your medical misfortunes to your advantage. You have an innate superpower to see peoples’ true colors—if they genuinely care, if it’s a relationship of convenience or actual care, and you see who shows up and who disappears to the background.

If you’re tired of being sick and tired, please know you are not alone in feeling this way. There will be days when managing multiple health conditions are extra tough. Anger, frustration, and sadness are all normal and justified. When you live with multiple health conditions—or even *just* IBD it’s like a daily game of Jenga. One wrong move, one decision, can inadvertently cause the tower to come crashing down. It’s a fragile balancing act that comes with its fair share of setbacks and challenges but also provides a unique perspective and appreciation for life and taking on each day without taking anything for granted.

IBD Motherhood Unplugged: I have Crohn’s and COVID

Well, after dodging the son of a bitch since March 2020 and doing all I could to stay well, I have COVID. My husband and I started with symptoms New Year’s Eve. Quite the way to welcome in 2022, let me tell ya. As an IBD mom of three little ones who is immunocompromised from my medication, I, like so many others have been worried about this since the moment the pandemic began. One of my greatest fears became my reality. My husband tested positive the day he was scheduled for his booster. I’m triple vaxxed (since late July!) and that still wasn’t enough to protect me. I do believe the vaccines lightened the load of the illness and I’m grateful we had them.

Like I do with all my blog articles and reporting, I prefer to be transparent and honest about my personal experience in hopes of helping others. I’ve been keeping track of my symptoms daily and monitoring how the illness has manifested in me since it began. In this article, I’ll also share how I was guided by my gastroenterologist and pediatrician in navigating this once my family was exposed and became positive. As of now, miraculously, all three of our children (ages 4 and under), have tested negative and appear healthy.

Discovering I was exposed

So many emotions ran through my mind. Fear. Dread. Anger. Frustration. Disbelief. Shame. Worry. I cried lots of tears. My youngest is not quite 6 months old. Like any parent, I have tried my best to shield him from all types of illness since he entered this world. More than myself I’ve been concerned about how his little body would handle COVID. My family of five was directly exposed for 44 hours straight. We all had the same exposure and the damage had been done. What was supposed to be a time to celebrate with loved ones over the holidays turned into a nightmare real fast. It’s been a waiting game. I’ve felt a lot of emotions since my symptoms creeped up the night we returned home.

Here’s how my COVID has played out:

Friday, December 31st—headache, brain fog

Saturday, January 1—headache, runny nose, fatigue, no appetite

Sunday, January 2—headache, runny nose in the morning only, a dry cough, a little difficulty breathing, no appetite

Monday, January 3—headache, runny nose in the morning only, bad cough with phlegm coming up, congestion, hoarse voice, no appetite

Tuesday, January 4—TESTED POSITIVE (no surprise there) Runny nose like a faucet in the morning only, migraine with auras, no appetite, bad cough with phlegm coming up, hoarse voice.

Wednesday, January 5—Runny nose in the morning only, headache, hoarse voice, same cough. Smell and taste lessened. All three kids tested negative through pediatrician.

Thursday, January 6—Less congested, subtle headache, hoarse voice, same cough, no appetite, fatigue, taste, and smell gone.

Friday, January 7—Can finally breathe through my nose, subtle headache, no taste or smell, no appetite, congestion.

Saturday, January 8—headache, no taste or smell, congestion.

Sunday, January 9—FINALLY no headache, feels like a head cold, no taste or smell. My voice is back to normal, feeling a lot more like myself.

Managing Crohn’s Through COVID

As someone who has lived with IBD for more than 16 years, feeling unwell and juggling unpredictable symptoms doesn’t feel like anything new. But, knowing how to keep the focus on managing my Crohn’s while having “normal people sickness” is often challenging, especially since COVID is so unique in how it presents differently in people and comes in waves. When my gastroenterologist learned I had tested positive she offered up the monoclonal antibody infusion or a 5-day course of Pfizer’s new over the counter pill, Paxlovid. Since I was unable to get tested until day five of symptoms and since my case was mild, I chose not to do either. Personally, the thought of sitting around all the germs in a hospital (even though I’m positive for COVID) didn’t sound appealing to me. There is just so much sickness going around right now. I felt more comfortable taking the illness on myself since it was not severe and have been taking Vitamin D, Vitamin C, Zinc, and my prescription prenatal and folic acid.

One big question many of us in the community have is what to do about biologic therapies when we test positive. I am on Humira, and my next injection is due today (January 10). I was exposed to COVID two days after doing my injection. My gastroenterologist told me I would be fine to stay on schedule since my symptoms were mild and since I did not have a fever. She went on to say that if I am not having pulmonary issues (which I’m not), that I should proceed with my scheduled injection.

Luckily, my Crohn’s felt non-existent the entire time I’ve been sick with COVID. It was almost like my body was solely focused on the upper respiratory issues. Oddly enough, and this may be TMI…but I always tell people in our community nothing is TMI… today (Sunday) I experienced a burning sensation in my abdomen for about 30 minutes, felt some nausea, and had several bathroom trips. It was almost as though the COVID was leaving my body, because the last 10 days I haven’t felt anything like this and now I feel a lot better.

Mom Life with COVID

What’s really made this entire ordeal torturous for me is having to do my typical stay-at-home mom life with a 4.5-year-old, almost 3-year-old, and 5-month-old, while having COVID and Crohn’s disease. Unfortunately, even though my husband was symptomatic and positive he had to work from home, so it’s been me in the trenches, wearing a mask from 6 a.m. til the kids go to bed, and not getting a moment to rest or recuperate.

What anyone with a family and COVID can attest to is how challenging quarantine is when you can’t have your village of support help you with the little ones or get any type of childcare break. Typically, Reid goes to preschool three days a week and Sophia goes twice a week. Even though their school days are short, and I’m used to having everyone home, I’ve grown accustomed to a little bit of downtime with the baby. Between Christmas break and our quarantine, our entire family has been home since December 20th. Even through I’ve been sick and on the struggle bus, my day-to-day actions have not been able to change at all. To say I’m running on E is an understatement. Don’t beat yourself up over screen time and not being able to entertain your kids, it’s survival mode at its finest. As an IBD mom, the fatigue that comes with our illness is nothing new, the only saving grace with COVID is knowing there should be an endpoint. While long COVID exists of course, I’m not sure I’d be able to even tell the difference since I already live with chronic illness.

Breastfeeding with COVID

Ladies, I thought breastfeeding through colonoscopy prep and not eating for the days leading up was intense. This has been a whole different level of effort. To protect the baby, our pediatrician recommended my husband and I wear masks in our house. People complain about wearing a mask to get groceries. Try wearing it in your own home, morning-noon-and-night for 10 days, nursing a baby while your nose is running like a faucet, you feel unwell, and fear you’re going to pass along COVID to your small baby because you’re in such close proximity. At times I’ve felt on the brink of having an anxiety attack because the mask and my breathing made me feel like I was gasping for air while trying to feed him.

That being said, I’ve never felt more grateful or fortunate to be breastfeeding my son. It does my heart good to know he’s getting my antibodies in real-time as my body fights COVID. While breastmilk of infected mothers does not contain COVID-19, it contains antibodies against it.

I found promising articles and research about the benefits of COVID-positive moms continue to breastfeed their children:

Can Mother’s Milk Help Fight COVID? New Evidence Suggests ‘Yes’

Liquid Gold: How Breast Milk Could Pass Along COVID-19 Immunity

FAQ on COVID-19: Breastfeeding safety for mothers

Luckily, thus far, my baby hasn’t shown any symptoms and continues to thrive beautifully as we gear up for him turning 6 months this week. I’ve prayed hard over him daily and I’m hopeful I’m nourishing him and providing him with the best protection possible by nursing him through this pandemic.

Recommendations Moving Forward

As I write this it’s 9 pm on Sunday night. I’m much more at ease and honestly since I’ve been sick since New Year’s Eve, the entire start of 2022 has been a blur. I’m sitting on the couch, fire going, taking a deep breath, and trying to relax. Now that hindsight is 20/20 here’s what I wish I did before and what my recommendations are:

  • Order rapid tests proactively: Part of the reason we were exposed initially was because my loved ones could only get their hands on one test (which was negative). We made the trip home only to find out two days later that my dad had been positive the entire time. I ordered four tests on 12/30 and they just arrived yesterday. Prior to all this, my kids and I had never been tested. It’s much smarter to have tests ready to go at home so you aren’t scrambling and forced to make a judgment call that could put you in the line of fire.
  • Get 3-ply surgical masks for little ones: My kids have worn cloth masks up until all this, but when they return to school later this month, I plan to send them in surgical masks for added protection. I don’t expect my little ones to wear N95s. Not only are surgical masks more convenient than constantly having to wash them, if they lose their masks or misplace them in the wash, I don’t have to run around trying to find a mask that’s clean and ready to go as we are rushing out the door.
  • Connect with your care team when symptoms start: If you have a chronic illness and especially if you’re on heavy duty medications (like biologics) I can’t stress enough how important it is to stay in open communication with your care team so they are aware of the situation and can guide you through it. COVID is nothing to mess around with. It’s not *just a cold*, trust me. I spoke with my GI and my pediatrician almost daily this week through the patient portals.
  • Don’t take unnecessary risks and let your guard down: We are all exhausted from this nightmare, and I get how we all want to enjoy life and not live in fear. But one risky decision—something as simple as going out to dinner or seeing family that you miss, can end up with a great deal of sickness that you’ll quickly realize wasn’t worth it. Get vaccinated, get boosted. We’ve lost two family friends this week alone who were unvaccinated and died of COVID. It’s beyond heartbreaking.
  • If you lose your taste and smell like me, I’ve been told the sooner you start smell training the better: My friend recommended I order four essential oil scents off Amazon—Clove, Lemon, Eucalyptus, and Rose. They arrive to me on Wednesday. I have also been told by multiple people to eat Hot Tamales Candy and spicy, potent foods to get taste buds reactivated and to drink celery juice. Smelling perfume, cologne, garlic, dish detergent, and candles several times a day for 20-second increments is also a way to help bring it back.
  • Chart your symptoms each day: It’s helpful to keep track of your symptoms each day in the “Notes” section of your phone, otherwise it’s hard to remember what you’ve dealt with. It takes out the guesswork when talking with your doctors and helps you see how you’re improving or getting worse.
  • Disposable everything: We’ve been using plastic Red Solo Cups and writing our names on them, paper plates, paper towels, you name it. Get the germs out of your house and avoid using shared hand towels, toothpaste, etc. with those you live with.

A Switch in Specialty Pharmacies? How to Handle the Transition

Coordinating medication through specialty pharmacies is somewhat of an artform for chronic illness patients. Unless you deal with managing this monthly, you may be unaware of the endless time and energy that goes into making sure all the ducks are in a row to keep everything on schedule with your gastroenterologist, insurance, and pharmacy.

A few weeks back, I received a letter in the mail explaining that beginning January 1, 2022, my Humira would be handled through a different specialty pharmacy. As soon as I saw the letter my first gut reaction was that I was being switched to a biosimilar. Upon further reading, I learned that Alliance RX Walgreens, my specialty pharmacy, will now be Accredo (through Express Scripts).

Letter I received from my previous specialty pharmacy.

What now?

As a patient who has been on Humira since July 2008, this is the fifth time I have had to switch specialty pharmacies. Previously, it was because I switched employers and had different insurance. This time around my husband’s insurance switched specialty pharmacies. And even though this is far from my first rodeo—as a person who depends on a biologic every 2 weeks, I worry about a lapse in my medication, so I’m being proactive by communicating the change with my care team.

The letter stating the change said everything for my Humira would automatically be switched over, as long as there were refills remaining. I wasn’t sure if I had refills.

Communicating with your care team

With the New Year holiday being this past week, I went ahead and wrote my GI on the Patient Portal. Here’s the correspondence so you see how it all played out from the back end (no pun intended!)

Hi Dr. G and team,

Wanted to give you a heads up that I received a letter that beginning Jan. 1 my specialty pharmacy that I go through for my Humira prescription will switch from Alliance RX Walgreens to Accredo (Express Scripts).

The letter states that my prescription will transfer automatically as long as I had refills on file with Alliance. I just wanted to make sure that was the case and that there was nothing we needed to do on our end to ensure a smooth transfer.

My next Humira injection is Monday, Jan 10–so I’ll be scheduling a delivery next week.

Thanks!

Natalie

Good morning, Natalie,

I updated your chart (removed Alliance Rx and put in Accredo) as your specialty pharmacy. I did send in a new prescription for your Humira to Accredo this morning that way they would have it. It does look like your prior authorization previously expired. I have notified Lori so that she is aware that a new auth may be required. I did want to verify with you that your insurance coverage will remain the same going into the new year?

Thank you for the heads up, we always appreciate it.

Thanks SO much. Yes, my insurance coverage is the same (has not changed). Appreciate your follow up!

Natalie

You’re very welcome. That sounds great, I have notified Lori so that she is aware that your insurance will remain the same, that way she can work on that new prior auth if it’s needed.

Perfect, thanks so much! Do you know if Accredo will contact me next week to schedule delivery or if I contact them the first go-around?

Natalie,

I would suggest contacting them. Lori is aware that we will likely need a new prior auth but you contacting them to schedule delivery will also initiate that process (if needed).

Will do– that’s helpful to know. I’ll plan to call them on Monday to get the ball rolling. Thanks for all your help, have a Happy New Year!

When someone receives medication from a specialty pharmacy know they are on the phone coordinating delivery every month, making sure prior authorizations, insurance, and drug savings cards are all in check. It’s like a never-ending homework assignment that’s constantly looming. Many specialty pharmacies have apps to help “simplify” the process for patients, but I’ve found that the times I’ve tried to use apps in the past, I still receive a phone call about ordering my Humira and never know if my online order even went through. Call me “old school” but I still prefer to order my medication over the phone each month for the past 13-plus years. Find what works best for you and stick with it!

As you can see, it’s helpful to have a care team that responds promptly on the Patient Portal and helps you navigate the ins and outs of ordering your biologic. Rather than being unsure and worried about when and how I’ll receive my next Humira delivery, I now feel confident that it will be a seamless transition. I highly recommend grabbing the reins and checking so you don’t end up in a situation where you’re scrambling to get your medicine on time. Being proactive saves everyone involved a lot of headaches.

Holiday Reflections: Thoughts from an IBD mom as we bid farewell to 2021

Tis the season for reflecting on the year past and all we’ve experienced and endured—both the beautiful moments, the hardships, and even the mundane. As an IBD mom, 2021 was a big year for my family. We moved to our forever home in June when I was 35 weeks pregnant with our third child and welcomed Connor to our family in July. While there aren’t many milestones more amazing in life, they also come with their fair share of stress. I don’t know about you, but stress often triggers my Crohn’s. It goes without saying the holiday season alone can be complicated to navigate with chronic illness, especially in the middle of an ongoing pandemic.

My best advice—listen to your body. If you feel like you’re being stretched thin and your symptoms are trying to speak to you, take time to listen. While chronic illness is always inconvenient when it’s flaring, ignoring an issue that is presenting only delays the inevitable and could set you up for an even bigger setback. I hope this week between Christmas and the New Year that you take time for YOU. Breathe. Relax. Reset. It’s something I struggle with and hope to improve on in 2022, so I’m right there with you!

COVID Every Where You Turn

I don’t know about you, but the pandemic has been creeping closer to my doorstep with each day that passes. Close friends had Christmas plans canceled. IBD friends near and far are sick with COVID right now. My family on both sides have dealt with being exposed, also re-shaping how our holidays ended up this year. I hosted Christmas for the first time in my life! Only 10 people (including my fam of 5), but hey, you gotta start somewhere! And moving forward, I think I’m going to host the holiday from now on!

On a serious note, these are troubling times. Almost two years in and it feels like we’re in a dark, never-ending tunnel, with no light. But, just like life with IBD, try not to allow the looming darkness to dull the beauty that still resides around you. I found myself crying happy tears many times on Christmas day. Despite the ongoing burden and hardship of the pandemic, I felt incredible amounts of gratitude for my family and getting to be a mom to three children. Seeing Christmas through their eyes was beyond magical and feeling well the entire day was the cherry on top.

As much as we’re all “over” the pandemic, it’s not a time to throw caution to the wind as we gear up for 2022. Stay vigilant. Use your voice. Speak up if you’re not comfortable, rather than being a people-pleaser. Set boundaries and don’t feel like you need to explain yourself to anyone. Think about the risk vs. the benefits, just as you do when making decisions about your body with IBD. Have ongoing dialogue with your care team and the doctors who treat you rather than from acquaintances on social media who have no medical background whatsoever.

Spread Holiday Cheer, Not COVID

I’ll leave you with my family’s Christmas card and a thank you for following our journey, offering support, love, and prayers along the way. The IBD family is so special to me. I honestly don’t know how I went the first 10 years of my disease without connecting with our community. Since I started sharing my story and opening myself up for support, taking on Crohn’s feels a lot less overwhelming. You inspire me to write, to share, to collaborate, and to do all I can to make a difference. Once you’re a journalist, you’re always a journalist…and I find it so rewarding to be a trusted resource in our community for insight about diagnosis to career, to finding love, having babies, being a mom, you name it. Thank you for listening and for reading. Excited to see what 2022 has in store!

Paying It Forward with IBD

When you hear the term “pay it forward” you may envision someone in a drive thru line surprising the person behind them by covering their order. Those words have held a different meaning for me as a person with IBD. When I had bowel resection surgery, I’ll always remember how my husband’s cousin and wife surprised us and showed up to the hospital with coolers of food and drink for my immediate family. It was an act of kindness and generosity that meant so much. That was six years ago, and we still talk about it.

Fast forward to present day and a friend of mine locally who has battled Crohn’s disease for decades had surgery. He’s a husband, a father of four, a successful businessperson, and leads our local Crohn’s and Colitis chapter as President of the Board. Through the years my husband and I have connected with him and his wife at Foundation events.

Staying connected through the pandemic

He recently posted on Facebook that he would be having his 8th Crohn’s-related surgery. He’s taken on Crohn’s with resilience and grit since being diagnosed more than 21 years ago. Thanks to the pandemic, the last time we had seen him, and his wife, was at the Crohn’s and Colitis Foundation Gala in November 2019. Despite two years passing without seeing one another in person, there’s something special about the IBD community and the family feel it creates.

When you’re knocked down by a disease over and over again and you’ve had surgery, you’re able to relate to the struggle, while also understanding how beautifully amazing recovery can be when you get a fresh start. While surgery is not a cure, it affords many of us with the opportunity to stay ahead of our disease and take out the portion of our intestine that is diseased and causing us problems.

A call to help

After I saw the social media post giving friends and family a heads up of the surgery happening in two weeks I grabbed my day planner and marked my calendar so I could be reminded of when to reach out to my friend in the days ahead, to pray, and to start thinking of how I could help his family of six during this uncertain and challenging time.

I immediately thought about his sweet wife trying to steer the proverbial ship for the family for months on end. Four young mouths to feed. I texted them both and said I would be bringing over a homemade meal. My text may have seemed out of left field, but I wanted them to feel supported and help in a way that doesn’t seem like a big deal, but has a lasting impact. Rather than asking how you can help, if you can help, or that “you are there if they need anything,” just come right out and say what you are going to do.

We picked a day for me to stop by with a homemade dinner and when we saw one another and were able to chat for a few minutes in person it warmed my heart. I could tell the gesture was so appreciated and that it brightened their day as much as it did mine. We all know how monotonous recovery can be, so having someone stop by—even for a few minutes—helps break up the boredom.

Hanging out at the Crohn’s and Colitis Foundation Gala in 2019. As my friend endures his recovery and now another surgery on the horizon, it’s friendships like this that deserve extra thought and care.

Passing along the appreciation

Fast forward to this week and while I was feeding my baby, an email popped up on my phone from a friend of mine in the patient advocacy space. She wrote:

“Dear Natalie,

Thank you for your tireless dedication to the patient community that you serve. I am deeply grateful for the opportunity to work with you, and always appreciate your willingness to jump in and help my clients transform healthcare. Patient Authentic wouldn’t run without you! Please accept this gift as a small token of my appreciation for your commitment to making the world a better place and your support throughout this past year. Wishing you a wonderful holiday season and a joyful new year!”

This was such a sweet surprise and brought me back to this notion of “paying it forward” in the patient community and going out of your way to brighten someone’s day. When you live with chronic illness, and never know what the day will bring, it’s wonderful to have moments of reprieve where you feel thought about, appreciated, and seen for all that you endure and all that you go through.

Paying it forward to someone with IBD this holiday season and beyond

It’s not about the monetary value, but rather the effort and thought.

  • Send a card expressing how you are thinking or praying for someone, rooting them on, supporting them through the ups and downs their disease creates.
  • Offer to help watch the kids so they can have an hour to take a walk, run an errand, or just relax.
  • Ask if you can join them for a doctor appointment, to get lab work, go to an infusion, be there at their home when they do an injection—anything to be there as a source of support. I recognize with COVID you may not always be allowed, but it’s worth an ask. By doing a “ride-a-long” with a friend or family member, you’ll get a small taste of what their reality is like. It’s often the drive to and from appointments and procedures that makes our minds race and can get emotional.
  • A simple “tell me about how your Crohn’s has been?” or “how has Crohn’s been impacting your day to day?”…or “what is it like to live with Crohn’s?” means a lot…don’t waste your breath only asking “how are you?”…because most people with chronic illness take this as an opportunity to downplay their struggles or sugarcoat the reality. Dig deeper and ask empathic questions that show you really care.
  • Share content of fellow advocates on social media—whether it’s a blog, a podcast, a reel, a post on Instagram—being a patient advocate takes a lot of time and effort, it’s rewarding when you see your words and your work reach more people and even better when you learn how a story you wrote or a post you shared touched another person’s life and impacted them in a positive way.

Over the weekend a fellow IBD mom friend of mine was hospitalized from a flare and faced with the need to start a biologic. When she got home with her family last night, she sent me an email with an update and ended it by saying “thank you” for being a mentor/friend/support in her corner. It’s moments like this that validate why I do, what I do.

IBD Motherhood Unplugged: My son has Crohn’s and I published a book about our experience

Overwhelmed. Terrified. Unsure. When Heather Hausenblas’ son, Tommy, was diagnosed with Crohn’s disease December 6, 2018 at age 16, she didn’t even know what IBD stood for. She knew she had a lot to learn and was on a mission to get her son healthy. Fast forward three years and now she’s a published author on the topic.

“Invisible Illness” chronicles how it feels from a parent’s perspective when your teenage child is diagnosed with a chronic illness for which there is no cure. The book provides an inside look at a mother struggling to find her way forward and how she turned despair into hope not only for herself, but for her entire family.

Heather Hausenblas, PhD, is a mother of three boys, health psychology expert, and award-winning researcher. She says when her eldest son was diagnosed with Crohn’s, her personal and professional roles collided. Not only was she going to battle for her child, but she also began her mission to help those with chronic illness eliminate the overwhelm and (re)discover health.

Dealing with the words chronic and incurable

“I kept hearing there was no cure, no known cause, no one treatment, and no one symptom. No. No. No. No. He will always have it. It’s never going away,” writes Hausenblas in her book.

Chronic and incurable-these two words were exploding in Heather’s mind on repeat. Tommy went from being on the high school baseball team, with lots of friends, doing well in school, and being very active…to living with a complicated and often debilitating disease. Everything in their life came to an abrupt halt. She explains how the illusion of youthful invincibility began to fade. Something anyone in our community can relate to. Health is often taken for granted until it is robbed away from you.

Feeling helpless through the struggles

She writes, “I could hear the pain in Tommy’s voice. But I was helpless. To put his excruciating pain in perspective, one Crohn’s patient described it as, “I’ve given birth without an epidural twice in my life, and the pain of Crohn’s disease was far worse than that.” “Tommy’s physical agony was accompanied by the unending frustration involved in trying to diagnose this complex disease. His symptoms and complaints had been overlooked—even dismissed.”

When a child or parent is diagnosed with IBD it impacts not only the person with Crohn’s or ulcerative colitis, but each family member in a unique way. It’s often said that IBD is a “family” disease.

“Torture was seeing my child wasting away to a skeleton, dropping nearly twenty pounds on his already lean frame, constantly running to the bathroom, and having excruciating pain. Torture was watching him leave the house only to run back seconds later for the bathroom while his friends went to the party.”

As a mom with Crohn’s myself, reading Heather’s perspective as the parent watching her son endure pain and hardships struck a chord with me because when you’re a young patient and are diagnosed before becoming a parent yourself, you often don’t take the time to think about how your disease and struggles are impacting the people who love you most. Not out of disregard, but simply because you are dealing with so much internally and externally it can be difficult to think outside of yourself.

Healing with food

While Heather shares a great deal of insight about the importance of diet and nutrition as it relates to IBD throughout the book, she also talks about the challenges Crohn’s presents since each person tolerates food differently. She explains how it’s impossible to find a one-size-fits-all diet but advises patients to journal everything from what they eat to how often they go to the bathroom to try and tailor a personal diet that works for you. Discovering your own triggers and knowing which foods are risky or tend to cause pain is a huge step in managing your illness.

“After a few weeks of strictly following the SCD (Specific Carbohydrate) diet, Tommy said that gluten wasn’t his issue. He somehow knew. He knew his body. He now eats gluten when he wants…Tommy’s liberalization of the SCD highlights the practical concern of adhering to a very restrictive diet.”

“Invisible Illness” includes 30 pages of helpful inflammation-fighting recipes. Throughout the book Heather talks about how she “detoxed and decluttered” her home and the cathartic effect journaling had on her coping process then and now.

Now, as a sophomore at Clemson University studying engineering, Tommy is in remission and does not take medication. He manages his Crohn’s by eating a healthy diet made up of organic, whole food, has an active lifestyle, and says his Crohn’s disease does not define who he is.

Forming connections and offering hope

Heather hopes that by candidly sharing her family’s journey with IBD that she opens the door for connections between other parents and families living the same reality. She recommends fellow parents to get involved with local organizations, so you recognize from the get-go that you are not alone.

Her main goal with publishing “Invisible Illness” was to “to help others navigate through the storm of medical and health information to figure out the right wellness path.”

How to purchase “Invisible Illness”

You can get your hands on a book by ordering a copy on Amazon.

Connect with Heather

Facebook

Instagram

LinkedIn: Heather Hausenblas

Email: hhausen@ju.edu

Join Heather’s email list via her website to receive recipes, weekly health tips, much more.

Website: www.heatherhausenblas.com  

My thoughts on a colonoscopy pill prep as a first timer

‘Hello darkness, my old friend. I’ve come to talk with you again’. Ahh, the dreaded annual, routine, colonoscopy. I got a little spoiled because my last scope was July 2019. I decided to hold off in the thick of the pandemic out of safety concerns and did a fecal calprotectin test instead. Then, I got pregnant…so I had quite the enjoyable hiatus.

This time around, I decided to try SUTAB, a 24-pill prep + Magnesium citrate, rather than my typical Miralax-Dulcolax-Magnesium citrate. Without insurance and utilizing the patient savings card that’s online, SUTAB can be costly. I went here and printed out a coupon, I was able to get it from the CVS Pharmacy in Target for $50. While it’s more expensive than most preps, to me, it was worth the try.

Thoughts on doing a pill prep

So, this entire experience was a bit complicated for me. The night before my scope, I was miserable from the Magnesium citrate and the initial 12 pills. First off, I’ve come to learn that most GI’s do not make you take magnesium citrate on top of the typical prep. I’m just one of the lucky ones. Magnesium Citrate has always made me vomit, even if I take Zofran before. Prior to this prep, I always did the lemon flavor. I switched to the cherry flavor this time, GAME CHANGER. I had no problem getting it down…but it only stayed down for about an hour or so.

I threw up an unbelievable amount multiple times and never had a bowel movement. After not eating a solid meal for three days I was anxious and worried that I wouldn’t be cleaned out enough and that I was going through this hell for nothing. Sadly, Reid and Sophia witnessed it all go down and it broke my heart that they had to see me so sick and weak on the bathroom floor.

I relied on many members of the IBD community and medical professionals on social media to help guide me through the unknown. I took a Zofran and went to bed. I never woke to use the bathroom. I set my alarm for 3 a.m., took another Zofran, did NOT take the second 10 ounces of Magnesium citrate, and timed the remaining 12 pills every 3 minutes (rather than taking them back-to-back). I found that tip on Twitter and it made a huge difference! I decided not to take the second bottle of Magnesium citrate because in the medical instructions from the SUTAB box it says *not* to take any additional laxatives.

My scope was scheduled for 8:30 in the morning. I finished the pill prep at 4 a.m. and between then and 6:45 a.m. when we got on the road to hospital, I got completely cleaned out. I didn’t get nauseas, and everything fell into place. Now, I credit this with the fact I barely had anything in my body, which makes the prep much easier in my opinion.

If you would have asked me my thoughts on SUTAB vs. my typical go-to, Miralax + Dulcolax + Magnesium citrate the eve of the scope, I would have told you I would never do a pill prep, again. But once I took the Zofran, didn’t take the Magnesium citrate, and timed out the pills, only having to chase with pure water was amazing and very simple. All you have to do is drink 16 ounces of water with the 12 pills, and then an additional 32 ounces of water spaced out after. You can have more water if you want it.

My mom was laughing because she was watching me do multiple loads of laundry, make my son’s school lunch, pump milk for my 4-month-old, shower and get dressed…all on 4 hours of sleep, while in the middle of colonoscopy prep. As an IBD mom, I felt empowered in that moment of all I was capable of doing in the midst of what previously had been a nightmare.

Unfortunately, what is generally the “easy” part of the process—the hospital portion and the actual scope was very emotional and painful for me. My GI had ordered my usual routine labs to be drawn through my IV (to try and save me a trip) but I was so dehydrated from the prep and breastfeeding that the nurses could not get any blood. It took sticking me 8 different times. I felt like a human pin cushion. The IV was placed in a very tiny vein in my hand and the Propofol burned SO badly going in that I almost couldn’t handle it.

I kept asking for my husband Bobby to be allowed in recovery and felt like no one was listening to me. The nurse was gruff and kept poking me, even after I told her I would just go to a lab this week once I was hydrated. The blood pressure cuff even bruised my arm. I cried a lot of tears and the experience brought me back to a traumatic 2008 hospitalization for an abscess in my small intestine that involved 8 tries to get an IV.

My recommendation—do NOT allow labs to be drawn after you are done prepping for a scope. Save yourself the pain and the prodding. I overhead the nurses talking (outside the curtain) of my “room” saying they refuse to ever do this again to a patient and that we should all just go to labs to get bloodwork, rather than trying to get it done when we’re all terribly dehydrated. I had so many band-aids and gauze all over both my hands and arms, the nurses even sent me home with more gauze and band-aids in case I bled in the car. Fun times.

The best news

Luckily, the heaviness of this entire ordeal lifted a bit when my GI walked into the recovery room and said, “your small bowel and colon could not be more gorgeous. It was so pretty in there!” Best compliment you can give a gal with IBD!

She said even my anastomosis site (where my large and small intestine were reattached in 2015) …looked perfect. She explained how ulcers develop and indicate lack of blood flow. No ulcers, mucosal healing, and no biopsies needed. I feel incredibly fortunate that I have been lucky enough to hold onto my remission that came about because of my bowel resection surgery in August 2015.

I understand that “remission” is a complicated term in the IBD world. It doesn’t mean symptom-free, it doesn’t mean a cure…to me, it means I have many more days that I feel well than when I don’t. It means my Crohn’s disease doesn’t have to dictate or rule my life and that I’m able to be present for my family and for myself. It’s knowing that remission can go away in the blink of an eye. It’s happened to me before, and I know it will happen again. But for now, I’ll take a deep breath and enjoy this reprieve from the havoc I know my disease is capable of causing and continue to do all I can to stay well by staying on my biologic, keeping tabs on my lab work, and checking in with my GI whenever I feel like something may be starting to go awry. Remission is not something to be taken for granted. I often get asked what I do to “stay” in remission, I honestly don’t feel like I deserve much of the credit other than being a compliant patient and being very in-tune to how my body speaks to me through symptoms.

Moments that helped me get through

When my kids kept bringing me play food to help me feel better when they realized I couldn’t eat “real food” all week.

How my mom flew in from Chicago to help with the kids and to be an added support (like she does for every scope, procedure, and hospitalization).

When my husband, Bobby, came home late from work and rather than sitting at the kitchen table to eat, I caught him standing at the sink with his dinner plate and back turned so he wouldn’t be eating in front of me.

Knowing I was going to have a breakfast date with Bobby at our favorite spot and keeping my eye on the prize after going so many days without eating solid food.

Using my frozen breastmilk stash the day before and day-of the procedure to ease the burden of having to use energy and my body to feed Connor.

Reading all the comments on Instagram and hearing from friends and family near and far over text message and through phone calls really helped lift my spirits and conquer this as an exclusively breastfeeding mama.

Long story short—Aside from checking with your GI and getting a prescription for SUTAB, I would recommend trying the pill prep and from a patient perspective remind you to do the following:

  • Have your GI provide you with a prescription of Zofran (if you don’t have one already).
  • Take Zofran 30 minutes prior to taking the pills.
  • Set a timer on your phone and take one pill every three minutes.
  • While the pills are large, they are no bigger than a Prenatal vitamin and are doable.
  • For my self-imposed liquid diet this is how I plan it out for a Friday morning scope:
    • Last solid meal Monday evening
    • Tuesday-Wednesday full liquids
    • Thursday-Friday am clear liquids…and don’t forget my favorite tip of all…GUMMY BEARS! They are considered clear liquids, just steer clear from the red and purple ones.

What the IBD Community Needs to Know about Getting an Additional Dose of the COVID-19 Vaccine

Over the weekend (Saturday, November 6) I received my third dose of the Pfizer vaccine. When I had my second vaccine on August 11, I never dreamed I would be getting another jab so soon. But here we are. In talking with several IBDologists and patients I felt the need to expound on this topic, as misinformation is driving quite a bit of confusion about what additional doses and boosters mean for the IBD community and how we can best sort through all the information being thrown our way.

What’s the difference between an additional dose (3-part vaccine series) vs. a booster?

Dr. Meenakshi Bewtra, MD, MPH, PhD, Penn Medicine, helped me better understand this by explaining, “a 3rd dose implies that you had a less-than ok response to two doses and need a “3-dose regimen” to get the same response that someone else would get with two doses.”

The 3-dose regimen caters to those who are severely immunocompromised—those on chemotherapy and organ transplant recipients.

“Most IBD patients do NOT have this problem. Some small studies have shown varying responses; the largest is PREVENT-COVID which was over 3,000 patients. The study found that those on monotherapy TNF had similar response to the COVID vaccines as the general population. It was only in the setting of combination therapy (anti-TNF plus azathioprine or methotrexate) that you had a blunted antibody response (again–this was a research study),” said Dr. Bewtra.

She went on to say she has not been recommending that all her patients get a 3rd dose—rather, reserving that for patients who are on combination therapies. At the same time, this is a very fluid discussion, and the decision needs to be made on a case-by-case basis between each patient and their physician.

A booster is if you had an adequate response to the first 2 doses and are now 6 months past your primary series and fall into the recommended categories (over 65 years old or age 50+ with high-risk medical conditions), if you are part of a younger age group with high-risk medical conditions, or for those who work in occupations that put them at high risk for COVID. Booster shots are most effective 6 months after your initial series for Pfizer and Moderna and 2+ months after J&J, although the data really supports waiting until at least 6 months for best response. Age is the biggest determinant of needing a booster, whether you have IBD or not.

Dr. Peter Higgins, MD, PhD, M.Sc., University of Michigan Health, explained this clearly on Twitter. He tweeted, “It is a catch-up dose for folks who for various reasons (anti-TNF’s, steroids, chemo) will not have a great response to two doses. To catch-up to everyone else. Then a booster dose later to keep pace.”

I’m *only* 38 years old. I’m *only* on Humira. Why am I getting a 3rd dose two months after my 2nd vaccine?

I saw my gastroenterologist for a check up last week and she ordered a SARS-Cov-Z Antibody (IgG) Spike Semi Quantitative test at Quest Labs. My results came back and from a range of 0-20, I was at 4.42. My GI was surprised my response had dwindled so quickly and recommended I receive a third dose to help mount a more robust response.

Dr. David Rubin, MD, Professor of Medicine, University of Chicago, and Chair of the National Scientific Advisory Committee of the Crohn’s & Colitis Foundation told me that multiple studies on antibody response in patients with IBD have shown that after two doses the titers are similar to that of the general population. So, my result, is an aberrancy compared to the data. He said getting a 3rd dose seems right for me, given my personal results.

“We have suggested the booster for everyone and think of the COVID vaccines as part of a 3-dose series. When it comes to true protection from the infection, memory B cells (cellular immunity) are more important than antibodies. There is not a commercial test for that yet, but we are studying it.”

In a recent talk Dr. Rubin gave about COVID, vaccines, and the updated recommendations for additional doses and boosters, he discussed how IBD is a condition of an abnormal immune response. Therapies to manage IBD are predominately immune-based and immune-modifying. The information shared by the CDC and FDA is not specific to IBD and is confusing (for everyone).

“CDC recommends individuals should get a third vaccine if:

  1. Previously received two doses of an mRNA vaccine
    1. Currently taking select therapies, including anti-TNF and anti-metabolites
    1. “Other biologic agents that are immunosuppressive or immunomodulatory”
    1. High dose steroids (prednisone ≥20 mg/d or equivalent for ≥2 weeks)

All other individuals are recommended to get a booster 6-8 months after second mRNA vaccination.”

But wait, what’s the recommendation on antibody tests? Are they valid?!

This is where I get confused too, folks. Prior to receiving my antibody test and following my doctor’s orders I was not aware that the FDA and CDC both strongly recommend NOT checking or acting on antibody levels, as the tests outside of research studies are unreliable and unvalidated. Antibody tests do not paint a full picture of our immune system.

“There are strong recommendations from the CDC, FDA and ACIP (Advisory Committee on Immunization Practices) that patients NOT check antibodies nor use them in decision making. The only time they should be used is in the setting of research studies,” said Dr. Bewtra.

The reason for this is multifold:

-Antibody tests are not validated.

-Since they are not validated, there is no comparison for values. For example, my 4.42 on one test may be completely different in a different test.

-We know that antibodies are testing only one aspect of the immune system—there is a LOT more to immunity than an antibody level.

Dr. Jami Kinnucan, MD, University of Michigan Health advises all her IBD patients to receive a third dose, or a booster vaccination based on their risk factors and immunosuppression medications.

Dr. Kinnucan says, “Overall the current recommendations are to get a dose #3 on certain immunosuppressive therapy, which is different than a true booster dose. In addition, it is hard right now to understand what the true threshold of immunity is with antibody testing so I would not put too much into antibody test results. I do not recommend that patient’s routinely have their antibody status checked (unless they are involved in current studies). I would recommend getting dose #3 or booster dose for IBD patients.”

Vaccinated diverse people presenting shoulder

During the holidays we should all continue to follow CDC recommendations when it comes to social gatherings, social distancing, wearing masks, and properly washing our hands. Everyone that you spend time with should be fully vaccinated so the only thing being spread is holiday cheer. If you plan to spend time with anyone who is not from your immediate bubble, it’s recommended they take a rapid test before coming over.

Key Reminders as We Head into the Holidays

Vaccines are not 100% protective and Dr. Bewtra says “no one is fully vaccinated.”

“No one should think that just because they’ve had two vaccines, or 3 or 4, that they are safe. Protection is a function of the community: when community levels are high, even if you just got​ your vaccine, you need to wear a mask and practice all the recommendations from the CDC.”

What are the studies saying about the IBD Community

The data from science is highly variable. Studies looking at Rheumatoid Arthritis are not translatable to IBD, even when patients are on the same drugs. We have the real-world data from IBD, and it shows that the vast majority of IBD patients respond to vaccines appropriately. So not everyone needs to rush out to get a 3rd dose.

“We are doing a lot of vaccinating “the worried well” in this country. That may be fine because we are in a rich enough place to do that over and over, but it should not infer a feeling of false protection​ and it may be unnecessary,” said Dr. Bewtra.

Closing Thoughts

On the fence about receiving a 3rd dose and/or a booster dose? Have a discussion with your physician who specializes in caring for your IBD and prescribes your medications. Much like how IBD and COVID manifest differently in each person, it’s not fair to make blanket decisions about the entire patient population.

Dr. Rubin wants to reassure those with IBD that they are not at increased risk of bad COVID outcomes (but not at decreased risk either). He says most patients with IBD on therapy beyond 5-ASA or budesonide are eligible to get a third dose now. For patients on combination therapy with anti-TNF and thiopurine, methotrexate or high dose steroids, it’s reasonable to get the third dose/booster early.

Stay tuned for the evolving research. As the months go by and more research studies are completed, we’ll have a clearer picture of how to tackle this as well as additional guidance.

Save the Date: Facebook Live Event on Global Perspectives on COVID + IBD

The South Asian IBD Alliance (SAIA) is hosting a Facebook Live event Saturday, November 20 at 10 am EST. Patients and physicians will share their perspectives on COVID from the United States, United Kingdom, and India. Doctors will explain study data on serocoversion (development of specific antibodies in blood serum as a result of infection or immunization) in IBD patients and what their thoughts are on boosters and a 3-dose regimen, along with their viewpoints on mixing and matching vaccines. Patients will share their experiences from each respective country and discuss the challenges the pandemic has caused in terms of care.

Additional Resources

Crohn’s and Colitis Foundation: COVID-19 Vaccine Additional Dose Position Statement 

COVID-19 Vaccines and IBD: What patients need to know (article by Dr. David Rubin)

Third doses of SARS-CoV-2 vaccines in immunocompromised patients with inflammatory bowel disease (The Lancet)

Podcast: IBD Drive Time: Does my Patient Need A COVID-19 Vaccine Booster?

Studies about how IBD patients are responding to COVID-19 vaccines:

If you don’t do so already, be sure to follow these experts on Twitter for up to the moment information:

Dr. Bewtra: @DrsMeena

Dr. Rubin: @IBDMD

Dr. Kinnucan: @ibdgijami

Dr. Higgins: @ibddoctor

7 Tips for Keeping IBD at Bay on Big Days

Whether it’s a holiday like Halloween or a wedding weekend (both of which I experienced the past few days), it’s important to stay ahead of IBD symptoms and be proactive in how you approach the big moments and the big days in your life so you can enjoy them. The unpredictability of Crohn’s disease and ulcerative colitis can feel suffocating when you are hoping and praying your body doesn’t betray you on the big days.

Here’s how I mentally and physically prepare so I can stay ahead of my Crohn’s and be in the moment with family and friends.

Be extra cautious with what you drink and your diet. Caffeine and alcohol are triggers for me…and for many people with IBD. The day of my brother’s wedding I refrained from drinking coffee and alcohol so I didn’t have to worry about needing to run to the bathroom in my bridesmaid dress or have to think about how bloated I could get from the abdominal pain a few drinks can cause. My Crohn’s felt non-existent the entire day, thank you Jesus!

When I am traveling and away from home, I am extra mindful of what I eat and keep it on the safe side, especially if I’m going on a road trip with my family or flying the friendly skies. You know your triggers, try to steer clear from them as much as you can. If I am celebrating a holiday at home or at my parent’s house, I tend to be a little “riskier” because of the comfort level I have using the bathroom there, resting, etc.

Be choosy about your shapewear. I don’t know about you, but ever since my Crohn’s diagnosis I’ve never liked Spanx, belts, or anything restrictive around my waist. I rarely ever wear jeans with a button. For my brother’s wedding I wore Spanx that were biker shorts that went up to the bottom of my bra and it was a game changer, especially being 3 months postpartum! I didn’t have any stomach or bloating issues. Highly recommend the Spanx High-Waisted Power Short.

Pack pain medication and maintenance meds. Just because you’re away from home celebrating a holiday or a wedding, doesn’t mean it’s time to be flippant about managing your disease. When I’m packing, I always take more than I need when it comes to pain medication, even if I haven’t needed it or used it for months. Bring extra strength Tylenol and any prescription pain medication you may need along with your “typical” medication (if you take it). Be mindful of how long you are traveling and if you could face delays, etc. If you are flying, always keep medication on you, so it’s right where you need it and so you don’t chance anyone taking it out of your luggage.

With my Humira I look ahead when I have a big event and plan accordingly. For my wedding for instance, my injection was due two days after I tied the knot. My GI had me move up my dose to the day of the rehearsal dinner so I could have some extra coverage.

Try and get as much rest as possible. With IBD we all know fatigue is one of our most difficult symptoms to handle. Throw in travel and being out of your normal surroundings and life can really feel like an uphill battle. Allow for downtime and breaks throughout the day if you’re able so you can give your body time to adjust to the hustle and bustle.

Practice deep breathing and mindfulness. If you feel symptoms creeping in try and take deep breaths and ground yourself. Lay down and gently put one hand on your chest and your other hand on your belly. Feel your stomach slowly rise and be present in the moment. Close your eyes—remind yourself that pain is fleeting and go to your happy place. Diaphragmatic Breathing, also known as deep breathing or belly breathing, helps to manage stress.

Don’t suffer in silence. This is the hardest part of all. I always struggle articulating when I’m not feeling well on the “big” days. I never want to damper the mood or make people worry so I internalize my pain and put on a smile. As a mom of three little ones, especially on holidays like Halloween and Christmas I never want to allow my disease to take away from the special, memorable moments. But this can make the struggle even worse. I find quietly telling my husband or my mom that my “Crohn’s is acting up” that it takes some of the weight off my shoulders so they at least know why I may need help, may not be as talkative, or may not seem to be acting myself.

Use these times as a “teachable” moment. Before I started sharing my story publicly, you’d never hear me tell someone I barely knew I had Crohn’s disease. But now, I find it extremely helpful to drop that line whenever I can. You’ll find making others aware can bring about much needed support, understanding, and even intrigue. Telling others I have Crohn’s disease feels like a normal, casual part of conversation now for me. At my brother’s wedding my IBD came up several times in conversation—with the hair and make up people, to my cousins coming up to me and saying, “I have co-workers with Crohn’s, and I tell them all about your blog.”

While IBD is not our identity, it’s a large part of who we are and impacts many of the decisions we make each day that can influence everything from what we eat or drink at a party or social gathering to how we participate in milestones and festivities. Taking the guesswork out for others takes a bit of the pressure off and can make you feel less overwhelmed and more comfortable and at ease.

The Patient Experience: Biosimilars & What Leading GI’s Want You to Know

Biosimilars. When you hear the word how does it make you feel? Maybe a little skeptical. Maybe a little uncertain. Maybe a little leery. If so, you’re not alone. I’ve been on my current biologic more than 13 years and when I think about having to possibly make a switch in the future it makes me nervous, too. That’s why I called on IBD specialists and gurus Dr. Miguel Regueiro, Professor and Chair of the Digestive Disease and Surgery Institute at the Cleveland Clinic and Dr. Christina Ha, MD, FACG, AGAF, Cedars-Sinai to help educate the patient community and put falsehoods and myths to rest. Biosimilars are here to stay so it’s imperative we get comfortable with the uncomfortable.

What is a biosimilar?

First things first, let’s get the definition out of the way so you know what we’re working with here. Biosimilars are not the generic version of the biologics many of us are accustomed to. A biosimilar is a product, usually a medication, that is formulated in a fashion that is similar to the “reference” product, also known as the “originator” medication. Think Infliximab (Remicade) and Adalimumab (Humira).

I love the way Dr. Ha explained this, “It’s like identical twins sharing the same DNA but having different fingerprints. With biosimilars, dosing, administration, optimization, monitoring, and plan of care is the same, nothing changes except the Infliximab is now Inflixilmab-dyyb, for example.”

How You’re Told You Need to Switch

You may be wondering how this conversation and discussion even starts and how it translates over to the patient experience.

“The physician and patient are contacted by the insurance company indicating that the patient must switch to a biosimilar. This allows for some discussion between the physician and the patient. Although this should be the fashion in which it occurs, I know that this is not always the case and sometimes the notification is last minute or done in a way that leaves little time for education and discussion between the administration of the next dose of biologic and notification by the insurance,” said Dr. Regueiro.

Cost Savings and Access to Patients

I want to preface this by saying the cost savings varies from patient to patient and is largely dependent on a patient’s insurance company or health plan that covers the payment of their medication.

Dr. Regueiro says, “To provide a simple overview, each insurance company/health plan will contract with a pharmaceutical company for a certain medication. Much of this is dependent on getting the best price for the insurance company. A biosimilar is typically cheaper than the original (originator/reference) medication and the insurance company will then list the biosimilar as its preferred biologic for that condition, e.g., Inflectra or Renflexis for Crohn’s disease or ulcerative colitis. This makes the approval of that biosimilar “easier” for the patient and therefore access better. The question of where the savings are realized is another matter. Even cheaper drugs do not translate to savings directly to the patient.”

If you’ve been on a biologic “originator” successfully and are told you suddenly must make the switch, it’s not uncommon. Dr. Regueiro says he has many patients who have found themselves in this position. His advice? Speak to your healthcare team, but also go to trusted resources for education, e.g., the Crohn’s and Colitis Foundation website has some useful information for patients about biosimilars.

Addressing patient hesitancy

It’s no surprise this can be an emotional discussion. I try and envision myself being told that I had to switch after more than 13 years, and I know I would be crying because of the comfort and confidence I have had with my current therapy.

“The idea of switching to a biosimilar is fraught with concern. I typically acknowledge their concern, but then explain the data. There have been many studies that have shown that switching from a biologic to a biosimilar is well tolerated, is equally efficacious, and does not incur any different safety risk. I tell the patient that we technically cannot say that the biosimilar is the “same” as the biologic, but in essence it is. I also explain that I have had hundreds of my own patients switch and I have not seen a problem. In fact, in some patients I may get a drug level of the biologic before switching and then the same drug level of the biosimilar after switching and see no difference,” explained Dr. Regueiro.

For example, there is a blood assay for Remicade (Infliximab) that measures the Infliximab level and antibodies to Infliximab. When Dr. Regueiro has had patients switch from Remicade to a biosimilar, e.g., Renflexis or Inflectra, and then measure the same exact drug assay, the results of the Infliximab level and antibodies to Infliximab are the same. The biosimilar works in an identical fashion to the original biologic, and the blood assays show the same results. The body “cannot tell” the original biologic from the biosimilar.

Let’s read that sentence again. The body “cannot tell” the original biologic from the biosimilar.

Dr. Hasays, “The key here is to understand that you are being switched to an equivalent not inferior agent. Biosimilars are rigorously studied for safety, effectiveness, antibody formation with a lengthier, more involved FDA approval process than generics.”

Why Biosimilars are NOT generics

A generic medication has the same active ingredient as the brand name medication. An example would be the generic medication mesalamine for the brand name medication Asacol. Asacol’s “active ingredient” is mesalamine and the generic is simply formulated as mesalamine. The “packaging” of Asacol makes it Asacol, but its active ingredient is mesalamine and is identical to the generic formulation of mesalamine.

Dr. Ha explains why biosimilars are not generics.

“Generics are chemical compounds where exact replicas of the active ingredient are possible. However, biosimilars are biologic agents, complex protein structures constructed from living cells. Exact replicas aren’t possible but nearly identical structures can be manufactured – remember, these are very sensitive compounds. That’s why these medications need to be refrigerated and handled differently than a generic.”

I asked Dr. Reguiero if there’s ever a situation where he advises against a patient being switched to a biosimilar. He said generally, no.

“The only main question will be if a patient has already been on a biosimilar after the originator biologic and then needs to switch to another biosimilar. This would be a “multiple switch” rather than a single switch from the original biologic to biosimilar. Based on the limited data to date, and similarity between all of the biosimilars and original biologic, I do not even see this as a problem, but we need more research to make a final conclusion onto multiple switches.”

“Delaying treatment to stay on a version of a medication that really is not meaningfully different than the biosimilar may lead to far worse consequences than staying on schedule by switching to a biosimilar. Remember, delaying anti-TNF schedules may increase risks of antibody formation, infusion/injection reactions, and flares. I am far more concerned about staying on schedule and not missing doses than I am the biosimilar vs reference,” said Dr. Ha.

What if a biosimilar fails?

If a biosimilar fails, Dr. Regueiro looks at it the exact same way as if an original biologic fails. For example, let’s take the case of biosimilar Inflectra for Remicade.

“If a patient is started on Inflectra as their first biologic ever and it stops working, I generally check blood levels to determine if the patient has developed antibodies to Inflectra and that this is the reason for failure. If they have developed antibodies, and the Inflectra has worked well for a long time, then I would switch to another anti-TNF, but not another biosimilar to Remicade. The reason for this is that if a patient develops antibodies to the biosimilar, they will form antibodies to the original biologic or another biosimilar of that same biologic. However, I would switch this patient from Inflectra to Adalimumab (Humira) or one of the other anti-TNFs if needed. I would do the exact same thing if the first biologic I used was Remicade and it failed due to antibody formation.”

I went on to ask Dr. Regueiro when he would switch a patient to a biologic medication from a “different class.”

“Let’s take the example of Inflectra or Remicade. If a patient is started on Infectra or Remicade and they have no response from the beginning, and their drug levels of Inflectra or Remicade are good (and they have not had antibodies again) this means it should be working and it is not – this is a primary failure of that medication. In that case, not only would I not switch to another biosimilar or back to the original biologic, but I would also completely switch away from the class of anti-TNF, e.g., Humira, Cimzia, Simponi, as the patient is likely a non-responder to all anti-TNFs. In this case, I’d move onto something like Entyvio, Stelara, Xeljanz, or Zeposia (depending on whether it’s ulcerative colitis or Crohn’s disease).”

What’s coming down the pipeline for patients?

With all the biosimilars on the market and many more on the way—Dr. Regueiro and Dr. Ha say it’s quite likely all patients can expect to be switched off their current biologic at some point as insurance companies are able to get the biosimilar as a cheaper cost.

As far as savings programs, many of us are accustomed to with our biologics (I pay $5 a month for two injections), this would be dependent on what the company that makes the biosimilars offers and may look quite different to the originator biologic’s savings programs.  However, I would anticipate the patient would not pay more for the biosimilar.  There would either be a cost savings program with the pharmaceutical company that makes the biosimilar, or, more likely, the insurance company would keep the out of pocket cost the same for the patient.

Biosimilars are administered in an identical fashion to the originator biologic. So, you won’t be forced to go from doing a self-injection to getting an infusion. I asked Dr. Reguiero about Humira’s biosimilar in the future, and he anticipates that it will be citrate-free, just as the originator is now in the States.

Pediatrics and Biosimilars

As biosimilars come to market, the indications should be the same for the originator biologic. That is, if there is an approved indication in pediatrics for the originator biologic, the same should be true for the biosimilar. However, the FDA will make final guidance on the indications for a biosimilar and they could vary slightly on which diseases are approved and which age of patient approved.

What Patients Have to Say

Christina received a letter from her insurance company in June letting her know that Remicade was no longer approved and that she would be switching over to Inflectra in July. The insurance company reached out to her directly and had not informed her GI. She was five months pregnant and was stressed and anxious about switching medications in the middle of pregnancy.

“I have been on Remicade since September 2013 and it’s working really well for me. My GI was super supportive with my desire to stay on Remicade through pregnancy and agreed that I should not switch medications. In part of the letter for my insurance company there was an appeal process, which my GI did on my behalf. A few weeks later I got a letter in the mail from my insurance company that my appeal was denied. I contacted my G.I.’s office and she had someone in her office do a follow up appeal. The insurance company finally agreed to approve me for Remicade through my due date, October 23rd.”

Christina’s baby was born October 11th, so she’ll be making the switch this week while she’s postpartum.

Vern lives in Canada and the government there forced him to make the switch.

“The cost is partially covered by the government. I was pissed to say the least. They kept telling me it was safe, but I wanted to see evidence it was safe to switch to a biosimilar after someone had been on a biologic long term. I never got an answer. Luckily, I’m doing fine, and I have not noticed a difference.”

Lizzy highlights the emotional struggle biosimilars burden patients with.

“Even though I don’t see an uptick in symptoms and my remissions has been maintained, emotionally the switch was really difficult. My insurance forced me to switch. I was extremely sick for a long time before starting Remicade while I was hospitalized. So, I was really afraid of the switch making me sick and of course it was horrible not to have a choice in my healthcare.”

Kelly attests to the emotional struggle and disappointment. She says she spoke extensively with her GI prior to making the switch and did her on own research.

“When I received the letter from my health insurance company telling me I would be forced to switch to a biosimilar I was disappointed. I had been on Remicade for more than two years and it had only recently put me into remission. But I knew the switch was coming, having heard from many people in the IBD community that they were being forced as well. I had already done research on the data from Europe and Canada showing that biosimilars of Infliximab had the same efficacy and safety profiles as Infliximab.

She’s now had two Inflectra infusions and hasn’t noticed any difference in the way her body handles the medication. Kelly is crossing her fingers for a continued great experience and hopefully no more frustrating insurance shenanigans.

Madelynn was on Remicade prior to being switched to Inflectra. Unfortunately, her care team and her insurance failed to communicate the change to her. She shockingly discovered the switch was made after proactively reading medicine notes on the patient portal.

“I was nervous about it, and a bit upset. Who wouldn’t be after being in remission with a medicine then having it randomly changed? I ended up researching quite a bit about it, which helped calm my nerves. I also asked more questions of my medical team. I was worried about the biosimilar not working and causing a flare and of possible side effects. Keep in mind, I have Remicade induced side effects already. Could Inflectra make them worse? When a medicine keeps you in remission, that is something you want to hold onto for as long as you can. If you are taking any medicine, never be afraid to ask questions, research, and advocate for yourself. If something does not work, speak up!”

Madelynn has only received one infusion of Inflectra, but so far, she feels well and notices no changes with her IBD.

A Word from the Crohn’s and Colitis Foundation

Laura Wingate, Executive Vice President of Education, Support, & Advocacy for the Crohn’s & Colitis Foundation encourages patients to learn as much as thy can about not just biosimilars but all treatment options available so we can be active and informed partners in making decisions with our healthcare teams.

 “If you are informed you need to switch from a biologic to a biosimilar, you might be worried and that’s normal. But remember that biosimilars are just as safe and effective as your original therapy. Don’t be afraid to ask questions of your healthcare providers about the switch and why it’s happening and share any concerns you have with them. You can also contact the Crohn’s & Colitis Foundation for additional information, education on biosimilars, and support.”

Helpful Resources on Biosimilars

If you have questions about biosimilars– talk to your health care team. The more education, resources, and support they can provide you with to bolster your confidence that the biosimilars are an important part of IBD treatment, the better. I know personally as someone who depends on a biologic to maintain my remission, that doing the research for this article has made me feel a lot more confident and comfortable about biosimilars and what they mean for the patient community.

There are a several great resources about biosimilars to check out:

Crohn’s and Colitis Foundation: Biosimilars What You Should Know

Crohn’s and Colitis Foundation Biosimilar Webinar from September 2021: MyIBD Learning: Understanding biosimilars: What IBD patients and caregivers need to know

American Gastroenterological Association

FDA