The Patient Experience: What the IBD Community Says About Remicade

It was the first biologic created to treat Crohn’s disease (and later ulcerative colitis). Remicade (Infliximab) was approved by the FDA in 1998 for Crohn’s and 2005 for UC. The medication set the stage for a new way of treating and targeting IBD. A lot has changed in the last 23 years when it comes to treating IBD with biologics (Crohn’s and Colitis Foundation Biologic Fact Sheet). As patients we’re “lucky” that more options are available, and several medications are on the horizon. But Remicade remains a tried-and-true treatment option for IBD patients.

A few weeks back, I shared an article on my blog entitled, “The Patient Experience: What The IBD Community Says About Entyvio.” The article featured viewpoints, experiences, and tips/tricks from several people with IBD who are currently taking Entyvio or have in the past. That article and this one have NO affiliation or guidance from pharma. This is strictly created from the IBD patient experience.

The discussion on Entyvio was well-received and from there, I decided to do an exposé if you will, about other biologics, too. When I was told I needed to start a biologic while lying in a hospital bed in 2008, my mind was racing. I felt like I had nowhere to turn. There were only two options at the time. I didn’t know what resource to trust or where to go for information. My hope is that these articles help comfort you as you make these important, lifechanging health decisions, and alleviate a bit of the fear associated with being on a biologic drug long-term. Use these candid quotes to serve as your roadmap to navigate the unknown.

Before we dig deep into Remicade from the patient and caregiver perspective—a reminder that much like the way IBD presents and manifests in each of us, each person’s experience with biologics is unique to them. Remember that your experience could be better and could be worse.

What does anti-TNF mean?

Each biologic is associated as a class of drug. Remicade is an anti-TNF, meaning that the medication blocks a protein in your immune system called TNF-alpha. That protein can cause inflammation in your body. People with IBD produce too much TNF-alpha, which can cause our immune systems to mistakenly attack cells in the GI tract. Anti-TNF biologics work to regulate this protein in our bodies.

The Patient Voice

In this article you’ll hear from those who just started Remicade in the last week to someone who has been receiving infusions for 21 years! Thanks to each and every person who offered input, I wasn’t able to feature everyone’s perspective, but your narrative helped guide this piece.

Amanda Rowe started Remicade nine months ago. She was hesitant to start a biologic, but ever since taking the plunge, she hasn’t looked back.

“I haven’t had any issues. I get pre-meds of Benadryl and Solumedrol because I got slightly itchy during one infusion. It’s a nice quiet time to sleep or I bring my phone and earbuds and watch a show. It’s 2 hours where I get a break from hearing, “Mom, I need…” I currently have no active disease after being in a bad flare for two years. I flared that long because I was afraid of starting a biologic. My GI explained everything to me and calmed my fears about possible side effects and I finally agreed. I just wish I would have started Remicade sooner, so I could have felt the way I do now.”

Phylicia Petit has Crohn’s and has been receiving Remicade infusions since she was a teenager 11 years ago, she’s grateful the biologic has worked well for her.

I’ve had a dosage increase and have added mesalamine for better inflammation control. Other than those changes, I’ve been relatively symptom-free, which is a major blessing! I would highly recommend having home health do your infusions. I haven’t had to take off work for my infusions and it’s so nice to be in the comfort of my home…especially with COVID! It’s also cheaper for insurance. I use Janssen Care Path for financial help. It helps to cover your infusion costs. I fortunately have never had any side effects.”

IBD is a family affair for Kara Cady. She has ulcerative colitis; her dad was diagnosed with Crohn’s as a teen and her little sister was recently diagnosed with UC. She just started Remicade last week.

“I’m still on the loading doses. The infusion process is long! It’s about 3 hours for me. I am able to get mine at my GI’s office. I can bring my laptop and work from there. I was super nervous for my initial dose, but my main “issues” are feeling tired, and having a headache and sore throat after. I’m looking forward to getting on my regular Remicade schedule, as I’ve been in flare for about 6 months.”

Laura Steiner is a nurse practitioner with ulcerative colitis who has depended on Remicade for over seven years.

“I have had to increase my dosage and shorten the interval but continue to stay in remission while on it. I’m usually wiped out the day of and the day after. I get my infusions on Fridays, so I have the weekend to recover. The only downside is many major insurance companies are forcing patients to switch to biosimilars, so after 62 doses of Remicade, my next infusion in June will be Inflectra. I’m hoping it will work equally as well.”

Laura is not alone in this fear and dealing with barriers to care and insurance coverage is a reality for many. While working on this article, a social worker from an insurance company reached out to me and said in the last week alone she’s dealt with several cases of people who have had their Remicade denied. She’s helping them through appeals. Until you’re a person who is dependent on a medication for improved quality of life, where timing is of the essence for receiving it, it’s difficult to grasp the magnitude and the pressure of not being able to receive your medication when you need it and risking a flare spiraling out of control or losing your remission.

Meg Bender-Stephanski was on Remicade to treat her Crohn’s for about a year and half. It worked well for her, but she says the infusions were not only inconvenient but costly, so she ended up switching biologics.

I was going to college in Oregon while my main insurance was based in California, and the out of pocket costs the first few infusions in Oregon were around $18,000. It ended up being cheaper for me to fly home every 8 weeks for an infusion than it was to receive it in Oregon! I also really wanted to study abroad, and it was incredibly difficult to figure out the logistics. Remicade did work well for me and sometimes I have regrets for switching off it for personal reasons.”

Advice for Infusion Days

Kelly Dwyer was diagnosed with Crohn’s in 2018, but experienced symptoms for several years prior. She has great advice for gearing up for infusion day and beyond.

  • Take along a caregiver for your first infusion, if you can, just in case you have a reaction.
  • Make sure you make a plan for pre-meds or no pre-meds with your GI before you go to the infusion center, so you don’t get surprised by their policies. Kelly takes Zyrtec the night before, so she doesn’t get drowsy and Tylenol right before the infusion to alleviate the headaches she gets towards the end of an infusion.
  • The first few infusions should be slow infusions, to make sure you don’t have a reaction. Kelly has continued to receive hers at a slow rate (2-2.5 hours) because her blood pressure tends to bottom out when the Remicade is pushed to a higher rate. But for many, a higher rate works and helps the infusion go quicker.
  • Switch arms and spots for your IV. Kelly says she saves her “big veins” for times when the nurses need to do a blood draw before the infusion and have to use a larger gauge needle.
  • Hydrate well the morning of the infusion and bring along a heating pad, as it may help to wrap it around your arm if you’re dehydrated before the IV is started.
  • Openly communicate with your infusion nurses. Let them know if you feel weird or off in any way. Nurses have seen it all and can be very reassuring and helpful, but you need to give them feedback so they can help you and act right away if you’re starting to feel poorly.
  • Your reaction one day may be different the next. Kelly says she doesn’t have consistent reactions each time, so it’s important to be vigilant and always be prepared to expect the unexpected.
  • For Kelly, she doesn’t start to feel the effects of Remicade for a few hours after the infusion. She gradually starts to feel more and more grumpy and tired. She gets a very particular kind of fatigue the day of her infusion. She says it’s a very numbing, all-encompassing, tiring feeling.
  • Be aware of what dosage you’ve been prescribed. Understand there are several variables that your GI can change if the Remicade isn’t working immediately or enough. The interval time between infusions can be shortened, and/or the concentration of the medication can be increased.
  • Remicade is often given with other immunomodulators, like Methotrexate. Talk with your GI about scheduling and timing for the infusions with your other medications.
  • If you’re just getting started on a biologic, your GI will likely tell you to get vaccinated for Shingles and Pneumonia before starting. You’ll also need to do an annual TB test.

Kelly also advises patients to be aware of insurance companies in the United States. Like we touched on at the start of this article, she says many are requiring people to switch from the brand name Remicade to a biosimilar of Infliximab.

“I’m making the switch over at my next infusion in July and my GI and I agreed that we felt confident on the data out of Europe about the efficacy of biosimilars. I recommend everyone with IBD to do their own research and have this conversation with your GI. Be proactive and prepared to discuss options when the time comes with your insurance company.”

Balancing the Logistics of Infusions and Work/Life

Megan Alloway has counted on Remicade to keep her Crohn’s under control for 21 years. She prefers to get her infusions on Friday so she can use the weekends to recoup because it makes her so exhausted.

“While Remicade has been a blessing to me for over two decades, it feels like every time I turn around, it’s time for another infusion.”

An OBGYN with Crohn’s who wished to remain anonymous, has been on Remicade since she was 18. She’s now 35 and still receives her infusions every six weeks. She credits Remicade for giving her a full quality of life and enabling her to stay out of the hospital.

“Since starting Remicade, I have been able to finish college, med school, and residency with my symptoms under control. I’ve stayed out the hospital ever since I started Remicade. My main complaint is how long the infusions take. Different infusion centers have different protocols and requirements, but usually mine take over two hours. It’s annoying to find that kind of time on a weekday and be able to take care of my own patients, but I have to do it for my health.”

Heather Richter agrees the time an infusion takes can be inconvenient, but she’s learned to make the most of the “me” time as an IBD mom with Crohn’s disease.

I’ve learned to embrace the “alone” time. Be persistent at your infusions and if something seems off to you, speak up and make sure you feel like you’re being listened to. My infusion nurse gives me Benadryl and Tylenol beforehand, so if I have the kids taken care of, I find it helpful to nap and rest afterwards.”

Kristi Reppel has been taking on Crohn’s for 18 years. She received Remicade from December 2005 until August 2011. She switched biologics for a lifestyle change and started Cimzia in September 2016. She ended up back on Remicade in December 2016. She currently received 7.5 mg/k every 4 weeks instead of the typical 6-8 weeks.

This biologic works for me. It gets me in remission and keeps me there. I am a lot less symptomatic, thanks to my medicine. The bad part of all this is my veins are scarring over because I only have a few good ones and those are almost gone. The post infusion exhaustion and headache can also be a lot. As an attorney, finding the time to sit through an infusion and schedule it around court room hearings can be rough. I cannot recommend enough about the importance of hydrating with water that has electrolytes like Smart Water around infusion day. It’s made a big difference for me!”

Linde Joy Parcels says Remicade allowed her to reach remission in high school. She had swollen and painful joints, and after starting the biologic, she experienced a complete transformation.

“Unfortunately, I metabolized Remicade too quickly and had to transition to Humira after one year. I loved getting to take a day off school while on Remicade and spent my infusions relaxing with my mom watching soap operas. That was the silver lining for me!”

The Caregiver Perspective—from a wife to moms of pediatric patients

Remicade has been a lifesaver for Rebecca Kaplan’s husband. Before starting a biologic, she says his Crohn’s was not well-controlled. He was on one medication, going to the bathroom 25-30 times a day. By the time her husband started Remicade, the damage had already been done and was irreversible, so they didn’t see the true impact of the biologic until after he had bowel resection surgery.

He’s been on Remicade for 11 years this summer and in that time, he’s been able to graduate with a master’s degree, work full time, work out, play softball, and attend family functions. He’s also put on close to 45 pounds and gone from malnourished and underweight to thriving.

“Remicade isn’t picture perfect – the few days after his infusion I like to say he becomes a toddler who can’t control their emotions. He’s extremely irritable and says it feels like his brain is on fire. He gets sinus infections more often than before (and apparently that’s not uncommon when you are on a biologic), and he still has some symptoms from time to time. But his last colonoscopy showed that he is in deep remission, and I know that he wouldn’t have achieved that without being on Remicade.”

Rebecca waiting in the car (thanks to COVID) while her husband receives his Remicade infusion.

Alexia Anastasia’s 11-year-old daughter started Remicade in February. The list of side effects and hearing a horror story from a friend who “had a friend who had a stroke” made her a nervous wreck. Ultimately, she looked at the research and the long history of pediatric use of Remicade and felt she was making the right decision alongside her daughter’s GI.

“It’s been a game changer. We learned quickly my daughter needs it every 4 weeks after trying to go for 6 weeks. I’m so grateful it seems to be working. Her fecal calprotectin is almost normal from originally being 3,460. Her inflammatory markers are back to normal. I just hope it keeps working and the side effects remain minimal. It’s been a challenging 5 months with this new diagnosis. Now that I can reflect, I’m grateful my daughter’s GI pushed for us to start a biologic immediately. My daughter was withering away before my eyes and now she is back on track.”

Beth Otto-Stapleton’s daughter Penny started on Remicade when she was diagnosed with Crohn’s disease in January 2017 at age four. She was given two infusions a few days apart while hospitalized during her first flare. Unfortunately, that is when Penny suffered heart damage and was diagnosed with heart failure because of the Remicade.

“She now does Vedolizumab infusions instead because it is a different class of biologic. We are thankful as a pediatric patient, Penny can go to a Children’s Hospital for treatments…it keeps the hard parts of the disease there and keeps our home a safe/comfy space. The great part about the infusions is that we also get blood work done and get instant feedback. I always ask the infusion nurse to give her an extra bag of fluids so she’s well hydrated.”

Dermatological Side Effects

While talking with patients about their Remicade experience, skin issues came up in a few conversations. 

Remicade was the first biologic Dana Drengler tried. She says it worked the best and the longest for her. She was in full remission and lived a normal life while on it. Unfortunately, after about 3 years in, she started to develop red spots on her lower legs. They looked like broken blood vessels at first, but then started to spread and get larger, eventually turning into deep and painful ulcers.

“The ulcers covered my lower legs and became super painful, to the point where I couldn’t walk some days. It stumped my doctors, and they only thing they could think of was that it was a reaction to Remicade. They had me stop taking it and within a few months, my legs started to heal. I still have scars 5 years later!”

Mia Frakes has been using Remicade to control her Crohn’s inflammation since 2017, overall, she feels the medication does the trick, but she has what she calls the “oddest side effect”.

“I’ve been dealing with extremely red, dry, and flaky skin in strange areas like behind my ears and my belly button. My GI says she has seen this dry skin in other patients, too. I have to go to the dermatologist, and they give me topical medication to put on the dry areas, which seems to help.”

Madelynn Jessberger was diagnosed with Crohn’s in 2008, she’s been on Remicade the last three years. She was receiving infusions prior to getting her colon removed and was put back on the biologic after. Aside from some aches and tiredness after infusions, she also developed a rash.

“I developed psoriasis all over my body and my GI is unsure if it’s a side effect, a separate autoimmune disease, or an extra intestinal manifestation of Crohn’s. I manage the rash with thick creams and topical medicine from my dermatologist. Everyone is different, this is just my experience.”

Pregnancy + Motherhood and Remicade

Alyssa Leggett started Remicade in August 2018. At first, she was getting infusions every 8 weeks. Then, in 2019, two weeks before an infusion she started feeling fatigued and was dealing with urgency, pain, and diarrhea. Because of those symptoms, her infusions were moved to every 6 weeks.

After I gave birth, my doctor wanted to switch me to the rapid rate infusion. I’ve been doing those since November 2020. They’re about an hour shorter and I don’t have any side effects from them. I feel like I can have a more stable life. I still get symptoms from time to time, but I attribute that to the food I eat. Thanks to Remicade, I reached remission and had a healthy, full-term pregnancy.”

Allie Heiman is grateful for how Remicade has helped prepare her body for motherhood.

I haven’t had any side effects from Remicade and have found the infusion to be easiest in my hand with only minor bruising the next day or two. I started in March 2020 and was cleared to start trying for pregnancy in December 2020. After 13 years of negative scope results and being told I was not healthy enough for pregnancy, I could not be more thrilled with the outcome. I am hopeful to be a mom in the future, and grateful that Remicade made that a possibility with Crohn’s.”

Tayler Jansen is an IBD mom of two. Remicade has been amazing! Remicade and Imuran have kept me in remission for the past 9 years and enabled me to have two healthy pregnancies.”

Shakila Almirantearena has identical 5-year-old twin girls. She was diagnosed with Crohn’s shortly after they were born and is currently in remission. Along with Remicade, she takes Methotrexate.

 “I take Tylenol and Claritin at the infusion center to prevent any rash, etc. I usually take the whole day off work and really allow my body to rest. I haven’t had any major side effects. I’m usually tired the next few days and sometimes get a headache the day after my infusion, but Tylenol helps alleviate any pain.”

Christine Renee has had Crohn’s for 20 years, she’s a mom of two teens and a teacher.

“Remicade was a game changer for me compared to the previous meds I was on. I eventually developed antibodies to it, and it wasn’t as effective. My tips for those getting started are to not be afraid. I was so nervous about starting a biologic, but after the way I was feeling and the tests that my doctor performed, I knew it was the right thing to do. I started Stelara a few days ago and I’m hoping for similar results.”

IBD Parenthood Project

IBD Moms

Mamas Facing Forward

Pregnancy in Inflammatory Bowel Disease and NeoNatal Outcomes (PIANO) Study

Remicade and Pregnancy (MotherToBaby)

Other Helpful Remicade “Hacks”

  • Bring a phone charger to your infusions.
  • Dress comfortably.
  • Hydrate well the day before, day of, and day after.
  • Remember your headphones or AirPods so you can drown out the noise and watch a movie or show. Noise canceling headphones for the win!
  • Pack games and books to pass the time or your laptop so you can work.
  • Have someone else drive you when possible, in case you are drowsy from the Benadryl.
  • Pack snacks and drinks. Many infusion centers will also have this available for you.
  • Have a sweater or blanket!
    • Lauren Hopkins has been on Remicade well over a decade and receives what’s considered a “double dose” every 5 weeks. She’s found her sweet spot and has been able to maintain remission. She says, “Refrigerated Remicade mixed with room temperature saline feels COLD pumping into your veins. It shouldn’t hurt, so if it does, say something to your nurse so they can fix your IV.”
  • Have the Infusion Nurse run saline before and after your infusion to help with headaches.
  • Be your own best advocate. Speak up to your care team if something feels off, if your symptoms are persisting, or if you’re dealing with side effects that make your life challenging.
  • Remember if a biologic fails—it’s not on you, you didn’t fail anything, the drug failed you.

Video: What to Expect at a Remicade infusion(Credit: Crohn’s and Colitis Young Adults Network)

Stuff That Works: Insights on Infliximab

59 marathons and counting: How this IBD warrior perseveres despite her disease

When you think of a marathon runner what words come to mind? Grit, resilience, drive, focus, strength…the list goes on. Michelle Ladonne, 34, of Massachusetts, isn’t your typical long-distance runner. Not only was she diagnosed with Crohn’s disease in 2010, but she’s also managed to participate in 59 marathons in 35 states and 3 continents. Yeah. You read that correctly. Incredible, isn’t it?!

Like many of us, Michelle is the first person in her family to be diagnosed with IBD. When she was told she had Crohn’s, she frantically started Googling from her hospital bed. All she remembers hearing the doctor saying are “lifelong” and “no known cure”. She was certain she’d been handed a death sentence. Her life, at age 23, flashed before her eyes.

Going the distance

As time passed, Michelle learned how to listen to her body better. She says she’s become better at determining whether pain is a “routine Crohn’s symptom” or an acute issue that needs immediate medical attention. Finding the balance of when to push through and when to rest has enabled her to feel more in control of her life and her disease.

“I used to think that the ideal was to never let Crohn’s hold me back from reaching my dreams, or to not let Crohn’s become an excuse. But the reality is that I live with a chronic condition, and despite all the determination and effort in the world, sometimes Crohn’s wins, and I need to be ok with backing off, resting, and focusing on my health,” Michelle explains.

She admits—she doesn’t always listen to her body. She’s ran some races while in the middle of a flare or not long after a hospital discharge.

“I think with experience – both with running and managing Crohn’s symptoms – I’ve learned when I can push through the symptoms, or when I will make things worse if I don’t back off. I try to listen to my body and accept that sometimes not running is the safest and healthiest choice – whether that means skipping a training day, missing a race, or twice coming to that realization mid-race and walking off the course.”

A team effort between care team and patient

Michelle recalls her experience running in the 2018 Berlin Marathon while in the middle of a Crohn’s flare, about a month after being hospitalized. She says her GI was not overly excited about the idea of her traveling out of the country to run a full marathon.

“My abdominal pain wasn’t well controlled, and I was underweight after having been on a liquid diet for several weeks. But my GI knew how important it was to me and supported me. I started the race knowing that if I didn’t feel well, I could slow down or walk, and worst case, I would stop. I started at a conservative pace and focused on hydrating and tuning into how my body felt.  I remember seeing my friend cheering at mile 16, and I ran into her arms and exclaimed, “I am doing it!  I’m going to finish this!” 

Crossing that finish line felt like the biggest victory for Michelle. Right after finishing the race, she texted her GI doctor a photo wearing a medal and thanked him for his support. True to form, Michelle’s GI reminded her that beer is a clear liquid, and since she was in Germany, she should have one to celebrate! 

Persevering through Crohn’s and running

Michelle says having the mindset to persevere through life with Crohn’s and running marathons is similar. She says there’s an adage in marathon running, “when your legs can’t run anymore, run with your heart.”

“Miles 20-26.2 of a marathon bring some of the most brutal pain and physical exhaustion imaginable. At that point, you learn to trust that you are strong enough, tough enough, and brave enough to keep moving forward. You learn to push on when you feel like giving up, because forward is the only option,” says Michelle. 

During a recent 22-day hospitalization, she was in more pain than ever before. COVID visitor restrictions left her feeling lonely, anxious, and afraid. She had to draw upon that same reserve of mental strength as at mile 20 of the marathon. She was physically and mentally spent but knew that digging deep and pushing forward was the only option.

“Just like in running marathons, I had to trust in my experience; I had overcome other challenging situations when I wasn’t sure that I could, and this was just one more challenge that I would eventually overcome.”

Michelle’s advice for fellow IBD runners

  • Figure out how nutrition factors into your running – specifically what you eat and drink before you run. It can be different for everyone. Some of it is trial and error. If running a shorter distance, Michelle doesn’t eat 2-3 hours prior. For longer distances, fueling becomes more important, so she’ll eat something soft and “safe”, like white toast with peanut butter and honey.
  • Plan your route in advance and evaluate the bathroom options.  For longer runs, particularly if you are flaring, try to be strategic about running in locations with bathrooms. Think about local parks, gas stations or fast-food places (support those businesses after your run!).  In a pinch, construction porta-potties work, too. 
  • Don’t perseverate on the bad runs. You’ll have them – the days where everything hurts, you are exhausted, and it’s just a miserable kind of slog. Choose to celebrate the victory of having made it out the door. Know that just like Crohn’s, the bad days happen, but so do the really good ones, and that’s what makes it all worthwhile. 

Not allowing Crohn’s to keep her on the sidelines

Michelle is grateful she’s able to run, and do what she loves, despite her disease. She knows not everyone with IBD is able to be physically active. While Crohn’s has sidelined her at times, it’s never completely robbed her of her passion or changed her focus. On the difficult days, Crohn’s has made her even more appreciative of running and the gift that it is to her.

On the days when I don’t feel like running – it’s too cold, too hot, too rainy – I remind myself that I don’t “have” to run, but I “get” to run.  Not everyone is so lucky, and I don’t take that for granted. Having Crohn’s, it is easy for me to think of my body as somehow broken or defective. Running has helped me to appreciate that my body is capable of some amazing things.  Running has taught me to focus less on what my body looks like (the weight fluctuations of flares and steroids can be tough!) and more on what my body is capable of.”

Taking steps to control fatigue

Even though Michelle clearly has magnificent endurance and strength, it doesn’t mean she isn’t familiar with fatigue and that makes even the most basic daily tasks feel insurmountable. If she’s feeling that overwhelming sense of fatigue, she’ll skip a run or lay on the couch with a heating pad and watch Netflix like the rest of us. At the same time, she says it’s important to distinguish between physical fatigue and just not feeling motivated to go for a run. She tries not to let her Crohn’s become an easy out during the long Massachusetts winters, or in the pouring pain, or even after a long day of work.

She currently takes 6MP and is on Entyvio every six weeks to manage her IBD.

Running goals now and in the future

Since 2016, Michelle has been focused on running a marathon in each of the 50 states. COVID put a hold on that goal, but she hopes to get back to traveling soon so she can cross the finish lines in every state.

“During COVID, since I couldn’t travel, I started focusing on running every street in the towns south of Boston. So far, I’ve finished 11 towns and over 4,000 streets. I have enjoyed exploring so many interesting places close to home and seeing all the history in southeastern Massachusetts. I am toying with a goal of running all the streets in Boston – I think that may need to happen!”

Michelle has also been checking off all the Marathon Majors—New York, Chicago, Boston, and Berlin.

She underwent a hemicolectomy—the removal of a portion of her large and small intestines in March 2021 and was readmitted two weeks after surgery with blood clots in her abdomen. At that point, she was diagnosed with a clotting disorder, in addition to endometriosis in her bowel. After 22 days in the hospital, and six weeks off from running so she could heal, she’s started to slowly build her mileage back up as she regains her strength. Michelle ran a 5K a few weeks ago and is running a half marathon later this month. Her main goal—to run the London Marathon in October, and potentially a few other fall marathons. Once she finishes London—she’s planning a trip to Tokyo to complete the Majors.

Michelle enjoys sharing her patient journey—the ups and downs, the blood, sweat, and tears, and everything in between, in hopes her experiences might help others feel less alone and to know that anything is possible.  From weeks in the hospital to completing a 100-mile ultramarathon, she’s done it all, all while living with Crohn’s disease.

Connect with Michelle on Instagram: @run4life262

IBD Motherhood Unplugged: “I have IBD and so does my Mom”

In the spirit of Mother’s Day—today’s article celebrates mother and daughter duos with IBD. Rather than focusing on the hereditary factor of Crohn’s and ulcerative colitis, this story celebrates the camaraderie, bond, and connection created when a parent and child both share the same disease. While the chance of passing on IBD when one parent has Crohn’s and ulcerative is relatively low according to the Crohn’s and Colitis Foundation (between 5% and 20% of people with IBD have a first-degree relative, such as a parent, child, or sibling who has one of the disease), it happens. My hope is that if you dream of being a mom or a dad, you don’t rob yourself of going after that dream because of the fear of passing on your disease to offspring.

As a mom of two (soon to be three!), I am the only one with IBD in my entire extended family. But, I often worry and wonder if my Crohn’s will be passed on to my children. I know this is a common fear many in the community grapple with. Check out these thought-provoking and comforting firsthand accounts from 8 mother-daughter duos that show how families unite in their diagnosis and lift one another up.

Corri Gardner and her mom both have ulcerative colitis. Her mother’s father also had UC. Corri’s mom was diagnosed with IBD while she was pregnant with her. All she knows since being diagnosed herself is having her mom and grandpa to confide in through the ups and downs of the disease.

“My mom has always been there to validate my fears and feelings on such a deep level since she knows exactly what I’m going through. When I was diagnosed, she expressed how guilty she felt over and over again. I always assure her that I would much rather be on this earth, living with UC, than to not be here at all. If someone is hesitant about having children due to their IBD, I would urge them to not make life decisions based on fear.”

Camryn Asham and her mom both have Crohn’s. She says having a parent with IBD helped her feel less lonely and more understood when she was diagnosed. Like anyone with a chronic illness she’s gone through a range of emotions on her patient journey—everything from anger to grief.

“I’ve had the “why me” feeling, but deep down I know it’s not my mom’s fault and there is no one to blame. I know my mom has felt guilty watching me go through traumatic moments and all the ups and downs. I’ve been able to witness my mom get through the highs and lows of IBD, and that reassures me I can get through any flare up or procedure, too. I know I can always count on my mom for help and support when I don’t feel heard or understood.”

Rachel Martin and her mom both have Crohn’s disease. Her mom was diagnosed at age 14, she found out she had the same disease when she was 22. While the diagnosis was devastating for both, Rachel says she finds comfort in knowing that she has someone close to her who can relate.

“I do feel as though my mom feels guilty for passing Crohn’s. I have a twin sister who does not have Crohn’s and it has been hard seeing her live her life without going through everything that I have gone through. Never in my life would I wish this upon anyone, especially my sister, however I wish that I never had to go through this. I never exactly blamed my mom, but I have spent a lot of time wishing I “lucked out” like my sister did. I know that my mom feels bad that I have had a really hard time coping and accepting that I also have a chronic disease.”

Diagnosed prior to a parent

Mary Catherine Kirchgraber was diagnosed with Crohn’s when she was 10 in 2000. Her mom was diagnosed during a routine colonoscopy when she was 50-year-old in 2013. Since her mom served as her caregiver and advocate since she was a pediatric patient, it’s made for a unique journey and perspective. They both seek medical care through the same GI practice and have been on the same medications. Mary says it’s nice to have someone to commiserate with about frustrations with insurance, feeling poorly, side effects, and more.

“My mom is the toughest person I know and never complains, so she inspires me in a million different ways. I wish she didn’t have to struggle the way I have, but it’s nice to have someone to lean on and ask questions to. My mom has always been my advocate and greatest support. She fought for accommodations at school, taken me to Mayo Clinic, dealt with insurance, and taken me to every doctor appointment and specialist I’ve ever needed. She created binders of medical records for me and often reminds me of my own health history when I don’t remember things from when I was a kid. I am so lucky to have her on my team.”

Sharan Kaur was diagnosed with Crohn’s in 2002, her mom found out she had ulcerative colitis in 2017. She says prior to her mom’s diagnosis she felt alone dealing with the day to day struggles of IBD. Sharan says because of her knowledge and experience living with IBD, when her mom began to experience symptoms, she was able to push for their general practitioner to take action immediately and reach a diagnosis. She is grateful to have another family member who can grasp the severity of the disease and who understands how easy it is to go from feeling perfectly fine one day, to barely managing to get out of bed the next.

“I think we find strength in one another. For years, my mom supported me through my worst days and although she didn’t completely understand how things were before her diagnosis, the support was always there. Finding out she had UC broke my heart because she’s always been so active, truly a supermom. I realized then that this would have to change for her as she would probably go onto face the same daily struggles that I do with fatigue. As an adult I’m sure this change in lifestyle is much harder to accept than it was for me.”

Mary McCarthy was also diagnosed with Crohn’s at age 12 in 1995, her mom didn’t discover she had Crohn’s until 2015 when she was 62 (and her dad has UC!). IBD was foreign to the McCarthy family when Mary was diagnosed though. She says her mom had a difficult time coping with having a child with a chronic illness. Even though her mom was well-versed on IBD by the time of her own diagnosis, hearing the news was still difficult for her.

“We deal with it mostly through empathy and humor. Being able to talk openly about the emotional and physical aspects of the disease helps. My parents and I joke about how we are colonoscopy experts and have seen every gastroenterologist in the city of Chicago. My mom knows exactly what I need before colonoscopies, which is often to get some alone time and get in the zone. We laugh about it now. “Mom, I love you, but I gotta get in zone. You can wait in the waiting room now.” My mom has been there for ALL important moments in my IBD journey. We sometimes reminisce about the complete chaos we went through when I was 12. We may have IBD, but we know life must go on.”

Michelle Schienle and her mom were both diagnosed with Crohn’s in 2015, she was 23 her mom was 52. Michelle’s diagnosis was the catalyst for her mom to seek additional treatment from a new gastroenterologist. As we all know it can be challenging to articulate IBD symptoms to those who haven’t experienced them. Michelle knows she can always count on her mom no matter what she’s going through. Even though she doesn’t blame her mom for passing on IBD to her, she did get frustrated that she didn’t recognize the suffering earlier as a child because that was her mom’s “normal”, too.

“Since she was living her life that way, she thought my problems were “normal”, so I had to wait until I was old enough to advocate for myself to get the answers I needed. I wish she wouldn’t feel guilty for passing it on to me, because it’s not her fault. Seeing my mom push through gives me strength. I’ve seen firsthand how she’s successfully raised a family, had a great career, and traveled the world (all things I aspire to do!) and done it with IBD. It’s a relief not to have to explain the pain and worry in detail because we just know what the other is going through. As unfortunate as it is that we both are going through this, having my mom understand what I am feeling both physically and emotionally helps to validate it. If my children are to ever get IBD, I am now confident that I am in the best position to take care of them because I know what to watch out for and how to be proactive about treatment.”

History repeating itself

Both Ellen Jenkins and her mom were diagnosed with Crohn’s when they were 18 and freshman in college at the same school! Ellen says her mom still feels responsible for her being sick, even though she has never blamed her for IBD.

“Growing up and watching my mom live a normal life despite her IBD comforted me when I was diagnosed. I am so thankful to have someone who understands firsthand what I go through. Although no parent would choose to pass Crohn’s on to their child, IBD has made us closer. I have never been upset that I got it from my mom. Instead, I’m thankful to always have her as an advocate in my corner who truly understands the struggles.”

A heartfelt thank you

As an IBD mom, hearing these experiences and perspectives really puts my mind and heart at ease. As you can see, there’s a common thread throughout. Rather than blame their parent for passing on IBD, these young adults look to their parents as a pillar of strength, a source of understanding, and as partners in taking on their illness. Through the pain and suffering there is also gratitude, clarity, and unbelievable resilience. Just how you have grown and evolved as a person after your diagnosis and throughout your patient journey, your child will do the same.

Special thanks to everyone who made this story possible. Your words, your raw emotions, and your candidness are sure to help many and shed light on the incredible dynamic that is created when a parent and a child both battle IBD…no matter what age their diagnosis comes about.

Digital Dating Tips for IBD’ers: How I Met My Husband and What I Learned

Before the dating world was about swiping right or left, I met my husband online. It’s something I was a little embarrassed about sharing for a long time, especially while being a morning news anchor. The year was 2013, while online dating was becoming more common, it was still a little taboo. At the time, my Crohn’s disease was a secret from the public. Much like the backstory of my health, I wanted to keep my love story under wraps much of the same way.

So, when I signed up for eHarmony on a whim after attending my co-anchor’s wedding, rather than putting my location as Springfield, IL (where I lived and did the news), I told a little white lie on my profile and said I lived in St. Louis. I know, I know…a little shady! But hear me out. I chose to do this to disguise my identity and vowed to myself that I’d be upfront and honest with whoever I spoke with about where I lived from the initial conversation. I also told myself I’d hold off on sharing that I had Crohn’s until I met someone worth my time and deserving of my energy. It wasn’t something I would share over email or on the phone prior to meeting.

Finding Love in Three Days

I was on eHarmony three days before I met Bobby. Yes, three days. I feel incredibly fortunate that after years of dating and not finding the right person that all it took was a couple emails and some phone calls. As soon as Bobby and I started talking I gave him an “out” and said I understood if he wasn’t interested in long distance (90 miles apart), but he said he didn’t care and wanted to meet me. He drove to Springfield on a Wednesday after his workday and took me to dinner. Little did we know that would be our last first date.

From there he visited me the following week and we went out for Mexican. Two dates in, I didn’t feel ready to disclose I had IBD. But as the days turned to weeks and I started feeling closer to him, I knew it was something I had to get off my chest.

Disclosing to My Boyfriend (now husband) That I Have Crohn’s

On our third date (almost a month of talking/hanging out) we went to a boathouse and had lunch outside on a gorgeous St. Louis August afternoon. I was nervous, but at this point in my patient journey (8 years in) I felt confident about my IBD elevator speech. After the appetizer arrived, I let him know I had Crohn’s disease. I explained what it was, how it had affected me, the medication I was on, but more so than what I was saying, I was paying more attention to his verbal and non-verbal cues. I had been with guys in the past who ghosted me in times of major health emergencies. I had been made to feel like my chronic illness was a joke or an excuse. And I wasn’t going to put up with any of that bs again or be made to feel like a burden.

Photo taken after I told Bobby I had Crohn’s.

In that moment, Bobby made me feel comfortable and he didn’t seem phased by what I had shared. Not in a dismissive way, but in a way that made me feel like just with the distance, my disease wasn’t reason enough in his eyes to explore other options.

Advice for Navigating Online Dating with IBD

  1. Don’t make your IBD the headline on your profile. While your IBD is a big part of who you are, it’s not your whole identity. It’s not necessary to include you have a chronic illness on your dating profile unless you feel so inclined. Personally, I wouldn’t give someone the privilege of knowing that side of you unless you feel they are worthy. At the same time, if you have an ostomy and you prefer to share photos of yourself like that on your profile—more power to you!
  2. The cliff notes version of your health story will do. When you decide to share that you have IBD with your partner, don’t be doomsday. Don’t go on…and on…and on…about how debilitating and horrible it’s been and how miserable you are. Give a high-level elevator speech that “dumbs it down” a bit. You don’t need to downplay how hard it is but allow your partner to take some initiative and educate themselves and ask questions when they have them. How you share and present your illness to someone who may have never heard of IBD will have a lasting impact.
  3. Don’t settle. Trust your gut. If a partner is making you feel uneasy or unhappy, don’t make excuses for them. Read between the lines on a person’s dating profile—see if you think their personality traits and interests will compliment you and your needs. Not everyone is nurturing and empathetic. If you see red flags that your partner lacks in those areas, think about whether it’s going to be a healthy relationship for you to be a part of.
  4. No need to be shy! When we’re battling our health, often the thought of being vulnerable and open with a stranger can seem overwhelming. IBD is complicated and the stress of a new love interest can make us feel a bit out of control. But it can also be an exciting, sweet distraction from health challenges. Love gives a sense of normalcy. Just because you have IBD doesn’t make you unworthy of deserving love. Think about the type of partner you want holding your hand as you battle a flare from a hospital bed.
  5. Love doesn’t need to stop because of the pandemic. I’m an old married woman now (ha), going on eight years since I was on eHarmony and matched with Bobby, but I wouldn’t have it any other way. There are so many sites and apps these days, I don’t even know all it entails. Gone are the days of only eHarmony, Match, and Plenty of Fish. 😊 If you’re feeling lonely and isolated like so many of us during this pandemic, and you’re single with IBD, don’t feel like you have to press pause on finding a connection or your person.

What IBD’ers Have to Say About Finding Their Match

Erica: “My husband and I met on Coffee Meets Bagel in 2017. We texted three weeks before meeting. I told him I had Crohn’s after texting a couple of weeks before we met. I had to reschedule our first date because of a health issue and didn’t want him to think it was because of him. I also felt like he should know what he was getting into.”

Michelle: “I met my husband in 2015 when Hinge came out! I was having a flare and threw up on our first date! I met him when I was going through getting diagnosed and he was so supportive through it all.”

Christine: “Disclose early on! I disclosed at about two months of dating with my fiancé and I felt like things could go further. I think it’s something the other person should be aware of. Not everyone is ready for that you need to know that you will be supported through that journey! We connected through Facebook! Sounds crazy, but here we are!”

Sarah: “Dating/meeting people is so hard nowadays and then throw in a chronic illness and it doesn’t make things easier! Personally, I prefer to be up front about my UC because if the person is going to like me or if this is going to work out, they are going to have to be on board with my UC, too! Whether I like it or not, it’s a part of who I am.”

Ryann: “I met my husband in 2017 and I told him on our second date. Our friend set us up and she had already shared that I had IBD with him. Previously, I had told other guys on our first or second date. One guy came back and apologized for being so weak and not contacting me again after that date. I didn’t reply, more because I didn’t blame him, but also because I found him to be incredibly dull! This was back in the beginning days of Tinder!”

Natasha: “I like to share early (in or around the first date) about my health so I don’t develop an attachment if they aren’t comfortable with chronic illness. Usually, it leads to a good conversation either way. Recently, I shared about my Crohn’s over text message and the guy was very inquisitive and only wanted to learn more, about me and about Crohn’s! I also have a pic of me with my ostomy in my dating app profile. It’s subtle, but if you know it’s there or know what an ostomy is, you’ll know immediately what I have.”

Payge: “My Tinder profile pictures had me with my bag and my current boyfriend googled what it was before he messaged me. He told me when he knew what it was, he instantly thought ‘I want to take care of this girl’…that’s how it went for me!”

Allison: “You don’t have to share any more than you’re comfortable with—if you want to disclose in your profile, great! If you wait until date number five, that’s okay, too! There are no hard fast rules for when or how you should share your story with someone. It’s YOUR story and every situation is different. Anyone who responds negatively or acts as if your illness will be a burden is NOT worth your time. The right person won’t care. Remember—nobody is perfect. Your vulnerability might allow the other person to share something they’re also trying to figure out the right time for. I’ve been online dating for five years now, met my current boyfriend on Hinge in September.”

The mental health burden of IBD and coping through community and therapy

When you live with chronic illness, you experience a wide range of emotions and personal experiences that shape you. Life can feel like an uncertain rollercoaster ride, you never know when the next twist or turn is going to happen. This week on Lights, Camera, Crohn’s, 21-year-old Parsa Iranmahboub, candidly shares the mental health burden that IBD brings upon a patient. Diagnosed with Crohn’s when he was only eight years old, Parsa shares the perspective of what it’s like to be a pediatric patient who has grown into adulthood. He’s currently a student at UCLA and the Education Chair for the Crohn’s and Colitis Foundation’s National Council of College Students.

Parsa explains the psychosocial component of life with Crohn’s disease and ulcerative colitis by breaking it down to anxiety, embarrassment, guilt, and loneliness. He recently spoke about this at the Crohn’s and Colitis Congress as well as on IBD Patient Insider and his powerful words resonated with me and I know they will with you, too. Here’s Parsa’s breakdown of the IBD patient experience:

Anxiety: Being a bathroom disease, there is often the anxiety of whether a patient has easy accessibility to a restroom when they are out. But there can also be anxiety related to a patient’s diet. When I was younger, I was placed on a low sodium diet due to one of my medications. If I wanted to eat out with family or friends, there would be this anxiety of whether I could even eat anything from the restaurant. There’s also the anxiety that stems from extra-intestinal manifestations. I have a history of developing fistulas. And during my sophomore year of college, my labs were not looking too good, I was flaring a little bit, and I began to worry if this meant I would develop another fistula. I began to wonder how I would deal with a fistula as a college student. How would another flare up affect my grades and my ability to get my work done? I lived in a communal style dorm, so how would a sitz bath even work? Essentially, with anxiety there can be this fear of the disease taking over my life and how can I constantly accommodate it.

Embarrassment: Embarrassment can arise in numerous forms. For one, there’s the poo taboo. But there can also be embarrassment from when you are flaring. From when you are losing weight, when you no longer look healthy, when you now look “sick.” There are the side effects from medications. From when you begin to gain weight, develop acne, and now have that dreaded moon face. Let’s not forget the impact of extra-intestinal manifestations. In 6th grade, I had surgery for a perianal fistula. After the surgery, I had to wear tighty whities with a maxi pad to help absorb the pus. It would be an understatement to describe how much I began to despise physical education. Not because I had to exercise and run around. No, I was always too active of a kid to hate PE. But because we had to change into our uniforms during the beginning of class. And I was embarrassed to be in the locker room. I was embarrassed that everyone else would look cool with their boxers, but here I was with my tighty whities and a maxi pad. And it might sound ridiculous, almost like a scene taken from the “Diary of the Wimpy Kid”, but to my sixth-grade self, looking cool and being like everyone else mattered.

Guilt: There is often the guilt of feeling like a burden for others. That others have to not only be flexible with you but that they need to make accommodations because of you. “Oh, you all want to go hiking, well I can’t because there’s no accessible bathroom.” “Oh, you all want to eat at this place, actually can we go somewhere else where I can better tolerate the food?” There can even be instances where you feel guilt for believing that you no longer are a good friend. That since you have to refuse to hang out with friends because of fatigue or pain, your friends probably think you simply don’t enjoy hanging out with them. But there can also be guilt from a non-compliant label. When I was younger, I would receive weekly injections. Soon, I began to throw up after every injection. My doctor switched me to the pill version, but it would still make me feel incredibly nauseous. So much so, that I would refuse to touch the pills. Instead, I would take the pill container, open the lid, slowly pour the pills into the lid, pour too many, attempt to pour the extra pills from the lid back to the container, and once again pour too many pills back. It was a whole process. But I simply refused to touch the pills.

Well, it shouldn’t be a surprise that eventually I became non-compliant. Consequently, I switched medications and soon developed acute pancreatitis. At the onset of my symptoms, I was out of the house and had to call my dad to pick me up because I was continuing to throw up blood. And in the car, I told him “Dad, I think I’m going to die.” Thankfully, it was an over exaggeration. But at that moment, it wasn’t.

Parsa with his parents.

Now that I reflect on the moment, not only do I feel guilty for putting myself through that situation, but for also putting my family through that. I can’t imagine being a father and hearing your son tell you those words. And all of this happened because I couldn’t get myself to take those stupid pills. So, not only was I labeled as a non-compliant patient, a patient who was too immature to take his medications, but I was now also a patient who had “hurt” his family.

Loneliness: IBD is an invisible disease. You might look at a person and not realize they are living with a chronic illness. The invisibility is both the disease’s blessing and curse. There have been so many instances where I’ve been happy to have the ability to put on a mask and pretend that everything is okay. That my friends and peers do not have to associate me with a “disease,” a connotation that I despise so much that I often introduce my chronic illness as Crohn’s and not Crohn’s disease. However, because of the invisibility, the disease can feel extremely isolating. You might not know anyone else who can relate to your experiences/feelings. In fact, despite being diagnosed at a young age, for almost a decade I refused to share my story with friends and those close to me. It wasn’t until I met an IBD patient for the first time who was my age that I began to realize the importance of a shared community.

Dr. Tiffany Taft , PsyD, MIS, a Research Assistant Professor at Northwestern University Feinberg School of Medicine, spoke alongside Parsa during that Crohn’s and Colitis panel about Mental Health as it relates to IBD. As a Crohn’s patient of 19 years herself, she offers a unique perspective for her patients. I asked her when an IBD patient expresses these feelings of anxiety, embarrassment, guilt, and loneliness how she helps people deal with the struggles.

“The first thing I do is simply listen and reflect to the person my understanding without advice or judgement. It’s important to let someone tell their story before interjecting with any sort of interpretation or the like. Then, I start with some education about how our thoughts affect how we feel and how we behave. And that these thoughts are often on autopilot or may feel like they’re on an infinite loop and impossible to turn off,” explained Dr. Taft. “My goal is to help the patient understand their thinking and learn to slow it down and take a step back from their thoughts to be able to evaluate them, and maybe either change them or not let them have as much power.”

She went on to say that from there her and her patients tie their thoughts into other symptoms like anxiety, shame, or guilt, to see patterns and opportunities for change.

“It’s not an easy process, but most people can succeed. Loneliness has been harder during the pandemic. Social distancing has created a lot of isolation without an easy solution. I encourage staying connected via video chat, texting, and social media (so long as it’s not stressful!) People say that online interactions aren’t as fulfilling, and that’s probably true. But if I shift my thoughts from this negative lens to a more positive perspective, then it can help offset some of that loneliness until we can all be together again.”

The Decision to Open Up

It takes time and patience for many of us to come to terms with our diagnosis and decide how we want to present our experience to the world. For both Parsa and me, it took us a decade to take off our proverbial masks and share our reality with those around us. Parsa says he decided to share his patient journey at the end of freshman year of college after he joined a research lab at the UCLA Center for Inflammatory Bowel Diseases. He met someone for the first time who was his age and had IBD.

“When I was talking with her, this sort of light bulb just sparked. I realized I could connect with this person in a way I couldn’t have connected with anyone else before. She truly understood the challenges I was facing or had faced. Not from a scientific or “oh, I see” perspective, but from a “oh, I know cause you’re not alone” perspective. This connection was essentially my first exposure to the IBD community, and slowly, I began to become more involved in the community.”

The Power of Connecting with the IBD Community

Parsa went from forming his first spin4 team to joining the National Council of College Leaders to becoming more involved with his local chapter in California. He then started a local support network for college students on the UCLA campus. His advice for patients and caregivers—find a support network within the IBD community.

Foundation of National Council of College Leaders (NCCL)—this group of college students from across the United States volunteers with the Foundation to provide a distinct voice for young adults with IBD. Members also connect on how IBD affects them as students, athletes, and partners in a relationship, the intersectionality that stems from a patient’s identity, and tips for having an ostomy bag, reducing stress through coping mechanisms, and applying for accommodations at school.

Parsa also co-founded IBDetermined at UCLA, a student organization geared towards providing a support network and advocacy-centered space for UCLA students with IBD.

“Even though there are some amazing national and local support groups, we noticed that there was a gap for local resources that focused specifically on the intersection between being a college student and an IBD patient. Hence, we wanted to create that more local space, where individuals could address their specific questions/concerns/thoughts relating to being an IBD college student at UCLA. It’s a space where our members can learn about accommodations that are available through our university’s Center for Accessible Education, can exchange tips and advice for navigating schoolwork and college life with IBD, can express their frustrations about the disease or the lack of university resources, and can share where the best and cleanest bathrooms are located on campus.”

Parsa says growing up with Crohn’s made him responsible at a young age. He learned about resilience. He learned to embrace the obstacles he has hurdled and to keep on pushing through even when he couldn’t immediately see the light at the end of the tunnel. Parsa says he learned to appreciate the time he felt healthy enough to live life not controlled by a chronic illness. Through the years he’s realized you can still be fortunate through a misfortune. This belief has given him a strong appreciation to make the most of the opportunities that come his way and refuse to take the easy way out.

Register NOW: IBD Insider Patient Education Program (January 30)

Calling all IBD patients and caretakers, the IBD Insider Patient Education Program is this Saturday (January 30) at 11 am CT. The virtual symposium will include IBD clinicians along with patient moderators. I’m excited to share I am one of three patients who will be speaking and sharing my experience during the live event.

The discussion will include updates from the Crohn’s and Colitis Congress, and we’ll talk about the following topics:

  • Getting the most out of your healthcare visit
  • Future therapies in IBD
  • Holistic Approach to IBD Care
  • Management of IBD Care during the COVID-19 pandemic

I’ll be teaming up with Dr. Brigid Boland, MD, Assistant Professor of Medicine, University of California, San Diego to talk about the future treatment of IBD. As someone who was diagnosed with Crohn’s nearly 16 years ago, it’s been extremely comforting to see how many therapies have become available since 2005 and all that is on the horizon. Below is a chart that was shared during the Crohn’s and Colitis Congress that shows all the therapies currently in research and clinical trials. When I started my biologic in 2008, I had two options. With each year that passes, we get closer to a cure and get more and more options to manage our disease if our current therapies fail us.

“I love the idea of designing a program with patient advocates where we are communicating to patients and their families about the latest breakthroughs in research and patient care. There’s never enough time in visits to talk about all the research going on that will impact their care now and in the future.  Ultimately, all the research and future therapies that are being studied are ways to improve patients quality of life and provide a lot of hope for everyone affected by IBD (patients, caregivers and providers),” said Dr. Boland.

As people living with a disease for which there is no cure, it’s in our best interest to stay up to date on all the latest happenings and developments. IBD can feel like a beast of a disease to be up against day after day. When you participate in learning opportunities like this that are right at the touch of your fingertips you empower yourself as you make decisions and grow through your patient journey. It’s like the education saying, “The More You Know.” As you make decisions about how you manage your Crohn’s and ulcerative colitis, as you take on flares from a hospital bed, as you navigate life milestones like career and family planning, having resources like this in your arsenal of knowledge will only help you advocate for yourself and collaborate with your care team.

It’s not too late to register! Click here to sign up and can’t wait to “see” you Saturday!

My wishes for the IBD community in 2021

It’s no surprise 2020 was a dumpster fire for many reasons. It was a year of challenges, struggles, worries, frustrations, loneliness, and sadness for many. I don’t expect things to drastically change in 2021, as we’re still in the thick of the pandemic, but I do have some wishes for the IBD community as a whole as we look to the future and beyond. 

I hope you…

*Live in the moment. Rather than get lost in the past and the way things used to be or where you could be or what could happen, focus on the now and the beauty that is still around us.

*Advocate for yourself. Use your voice and speak up about how IBD impacts your health, what changes need to be made in your care, and what you need to thrive. 

*Don’t use social media as a crutch. While social media can be an incredible connector, especially as we stay home and remain socially distant, try not to base your reality off of it. It’s a highlight reel. You know which accounts and which posts cause you to feel a certain way. Protect your mental health and overall well-being by limiting the amount of time you spend on social channels.

*Go after that job, love interest, dream of having a child. Stop thinking you don’t deserve or aren’t capable of achieving your goals because of your chronic illness. The path to reaching the goal may have some detours or look different to you than expected, but go for the gusto. 

*Be proactive with managing your health. Stay on top of all medical appointments, despite the pandemic. As chronic illness patients it’s imperative we manage our care and make it a priority. Leave no stone unturned. Give yourself peace of mind by knowing you did all you could to give yourself the best quality of life.

*Have the hard conversations. Confrontation and difficult talks aren’t anyone’s favorite, but the longer you let something stew, the worse it’s going to be on everyone involved. Internalized stress will only exacerbate your symptoms.

*Celebrate the small victories. These are difficult times, make sure you stop to realize all you are doing and all you’re going through. You may feel stagnant or like you’re not accomplishing much, but each day you’re learning something, growing,  and brightening someone’s day without even knowing it. 

*Get outside more. Fresh air does a world of good. Even in the winter months, when it’s cold, bundle up and try and go for a short walk for a change of scenery. Clear your mind and take in your surroundings. 

*Stop feeling guilty for saying no. This entire pandemic our community has had to feel like the “bad guys” by saying “no” to social gatherings and functions. If you have to second guess something or if a decision doesn’t sit well with you, trust your gut. Don’t worry about disappointing anyone but yourself. Your health and well-being comes first. If someone wants to judge how you manage your safety, let them.

*Are mindful of what gives you energy and what zaps it from you. Focus on the people and activities in your life that make you feel refreshed, alive, and at home. Not everyone is going to love you, not everyone is going to mesh with you, don’t force it. Love the people who love you hard and don’t worry about the rest. 

*Stop the comparison game and focus on all you bring to the world as an individual, despite your illness. Rather than feel like peers have what you need whether relationship wise, lifestyle wise, etc…know that nobody’s life is perfect. Everyone has their own struggles. Chances are you just don’t know about them. Practice gratitude and mindfulness exercises to keep yourself grounded. 

In many ways our IBD has prepared us for coping with and handling with much of this pandemic. Despite the unknown before us, have confidence better times are ahead. With the vaccine available, hope is on the horizon.

Building Body Composition and Maintaining Weight While Battling IBD

For many of us, when we’re initially diagnosed with IBD or when we flare, we experience weight fluctuations. The number on the scale may plummet during times when eating anything hurts or seems to make symptoms worse. The number on the scale may skyrocket when we’re on prednisone and not only retaining fluid, but also wanting to eat everything in sight.

Andrew Jagim, PhD, CSCS*D, CISSN was diagnosed with ulcerative colitis in 2014 after being infected with an intestinal parasite (Giardia). He managed to remain in remission for a few years until things went downhill quickly at the end of 2016. He dropped 50 pounds over the course of 3-4 months, was going to the bathroom 15-plus times a day, was running constant fevers, severely fatigued, anemic, and had little appetite. In the spring of 2017, after two weeks on TPN and several days in the hospital, he decided that a sub-total colectomy was his best option at the time. Since then, Andrew’s battle has been a rollercoaster of ups and downs, resulting in 12 colorectal surgeries.

Sports and fitness have always been a huge part of Andrew’s life—so much so, that he made a career out of it. He has a doctorate in exercise physiology, is a certified strength & conditioning specialist and a certified sports nutritionist, so he has an extensive background when it comes to understanding the important roles of exercise and nutrition for health and performance.

“Throughout my life, a large part of my identity has always been tied to my physical appearance. I’ve always been known as someone who is athletic, big, and strong with a high state of fitness. I struggled immensely during my flares and surgery recoveries when I couldn’t work out, when I looked sick or couldn’t stop losing weight. It was like I was losing a sense of who I was and who I identified with. When I looked it the mirror, it pained me to see my hard-earned muscle just “falling off” when I was too sick or weak to workout. However, I have always been determined to rebuild my body and regain what I lost.”

This week on Lights, Camera, Crohn’s—a look at the impact disease flares and surgeries can have on body composition, and how you can try and counteract the changes through diet and exercise.

A cornerstone of the disease itself is a high state of inflammation – most of which is centralized to the gut; however, this can also have systemic effects thereby resulting in widespread joint pain, fatigue and even a state of anabolic resistance within muscle tissue. Essentially, this makes it challenging to maintain or increase muscle mass during a period of high disease activity. This can be coupled with a reduction in appetite which can exacerbate body weight loss and muscle loss.

Surgeries can range from minimally invasive procedures to treat a fistula to much larger and complex operations such as removal of sections of the bowel and placement of a stoma for an ostomy. Depending on the magnitude of the surgery, patients often must modify diet and physical activity based on the recommendations of the surgeon.

These modifications will likely lead to decrements in body weight, muscle, strength, and endurance in the short-term; especially individuals who may have been highly active prior to the surgery. However, in patients who may be extremely ill at the time of surgery, the procedure may help them regain lost weight and strength as their body may finally be able to heal and recover from the inflammatory cascade brought on by IBD.

The Case Study Andrew Conducted

A year and a half after Andrew’s colectomy, he decided to schedule the second step for the J-pouch procedure. However, prior to, he decided to take advantage of this unique opportunity and conduct a case study on himself to document the changes in body composition and performance throughout the recovery process. He was curious how a surgery like that would impact someone with his fitness state as most of the literature focused on smaller or more sedentary individuals. Leading up to surgery, he had been able to resume his regular fitness routine and got his weight close to where it had been for most of his adult life.

“As seen in the figure below from my published case study, there were significant declines in body weight (-10.5%), lean body mass (-9.9%) and endurance (-40.3%) 4-weeks post-surgery. At 16 weeks postoperatively, most parameters were near their baseline levels (within 1–7%), with the exception of my peak endurance, which was still 20.4% below baseline. Thankfully, I was able to leverage my educational background and expertise in exercise physiology and nutrition to use targeted exercise and nutritional strategies to retrain my body and build my physique back up,” explained Andrew.

The balancing act of trial and error

As many IBD patients know, there are a lot of nuances, misconceptions, and unknowns regarding how diet impacts disease. For Andrew, it has been a lot trial and error to find foods that worked for him and helped him achieve his goals.

“Early in the recovery stage, just getting my appetite back and trying to eat more while not interfering with any post-operative dietary recommendations was always my goal. For me, this meant trying to eat about 2,500 – 2,750 calories and 150-170 grams of protein per day. In my opinion, these are the two most important dietary goals when it comes to regaining any weight (especially muscle mass) following surgery or during a flare. It will also help support the tissue and incision recovery following surgery”

Regarding exercise, strength training, is the most effective form of exercise to regain lean body mass following surgery. However, most colorectal surgeons (for good reasons) impose a lifting restriction of no more than ~10-15 lbs. for about 6 weeks following surgery to allow the incisions to heal and avoid the risk of hernia.

“For my larger surgeries, this was easy to abide by as I was in so much pain and was so fatigued that it was a struggle to just get dressed and ready for the day, so there was no temptation to get back in the weight room any time soon. But for the smaller surgeries, as I got closer to the 6-week mark, I was anxious to get back to my old routine. I took a very conservative approach and used a lot of alternative training techniques (i.e. blood flow restriction training, isometrics, resistance bands, etc.) to elicit an adequate training stimulus while not having to lift heavy weights and to avoid injury,” said Andrew.

Andrew’s main piece of advice about life with IBD? “Be prepared for a rollercoaster of changes to both your body composition and physical abilities throughout battles with IBD – especially during a flare or following surgery. Unfortunately this also will likely take a toll on your mental health as well, or at least it certainly did for me. However, just know that you can always get it back in time and more often than not, come back even stronger. Be patient and give your body rest when needed but otherwise keep grinding.”

Everyone has their own battles they are fighting

“I think my experience with IBD has taught me that everyone has their own battles they are fighting – even if they don’t show it. Additionally, it is also a reminder that not all disabilities are visible as a lot of people are probably unaware that I live with a permanent ostomy. I have chosen to keep a lot of my health struggles private and I think a lot of people will be surprised when they hear what I’ve endured over the past five years as I have still managed to have a successful career and not miss much work – despite all the surgeries and time spent feeling very ill.”

Andrew’s IBD journey also shifted his research focus a bit and challenged him to apply my knowledge of how to increase performance, strength and muscle mass in athletes towards a more clinical application.

“A lot of the strategies that work well with athletes can be modified and used in clinical settings as several of the benefits (i.e. increased muscle, strength, endurance, energy, etc.) may also help improve quality of life in patients will a chronic illness, those who are critically ill, or those recovering from surgery. It’s just a matter of making the appropriate modifications and fitting them to the current need,” said Andrew.

Here’s how you can connect with Andrew:

  • Facebook: Andrew Jagim
  • Twitter: @Ajagim
  • Instagram: Sports Science/Performance Nutrition Focused: @andrewjagim
  • Instagram: IBD/Ostomy Focused: @the_chronic_comeback

IBD and Adoption: Insight from a Crohn’s mom about the journey

When you have IBD, the path to motherhood can look different for many. There is added stress about whether your body can create and sustain a new life successfully. There’s worries about flare ups and medications and how to stay well-managed while keeping the health of your unborn child in mind…just to name a few. For 30-year-old, Audrey Bolton, of North Carolina, adoption had been a calling in her life since high school when she stood at the airport and watched a family friend bring home their daughter from Guatemala.

She knew from that day forward, she would adopt one day. What she didn’t know is that she would be diagnosed with Crohn’s disease 10 months after getting married and struggle to conceive. This week on Lights, Camera, Crohn’s, Audrey shares her journey of becoming an IBD mom through adoption and what she wants others to know about the process.

NH: Many women with IBD fear their bodies are incapable of carrying a child/or are told they aren’t well enough. What would you like to say to them?

AB: “I would tell them that every journey to parenthood looks different, but at the end of the day, we are all moms. I think it depends on everyone’s situation and it’s a conversation they need to have with their doctor(s) and their spouse. For me, I was sick at the time my husband Crawford and I wanted to have a baby. I was not sick enough to where I wouldn’t be able to parent, but I do not think my body at that time could have been healthy enough to carry a child without problems. With that said, I’m nearing remission so I do still hope that one day we can have a biological child. If a person wants to be a mom, I fully believe that there are many different avenues a person can take to be a mother.”

NH: What are some of the struggles/challenges about adoptions that you wish other families knew?

AB: “Adoption comes from a place of brokenness, so while it is so beautiful that our son Camden made me a mother, it is not lost on me that his birth mother made a huge sacrifice that left a piece of her heart missing. It can be beautiful and heartbreaking at the same time.”

NH: Was the fact you had IBD ever an issue with adoption agencies?

AB: “Not at all! I love this question because I wasn’t sure what to expect when we started the process back in 2017. For all adoptions, you must complete a home study which includes health questionnaires, a physical, and several meetings with a social worker. In those meetings, we talked about my Crohn’s disease and how I was working with my doctor to treat it. If a person is well enough to parent and take care of a child, there are not any issues with having IBD and being eligible for adoption.”

NH: What are your tips for navigating the adoption journey with a partner/spouse?

AB: I could write a book on this one, but the truth is, Crawford has been my rock. He had no idea when he married me that I would be facing a chronic disease that would land me in the hospital multiple times a year for days on end. He has truly stuck by his vows “in sickness and in health.” I think the best tip I have for navigating Crohn’s with a partner/spouse is to communicate. Crawford knows when I’m not feeling well, the best thing for me is to rest and he makes it happen. He also is my voice of reason and tells me if I’m doing too much or if I need to say no to some obligations so that I can properly rest. Communication is key!

NH: What was it like when you first met your son Camden?

AB: “I always envisioned the moment we laid eyes on our son to be beautiful and the best moment of my life. When we arrived at the hospital, we had not slept in 24 hours and had driven straight through the night. We thought we would be meeting our son, but we were told he was being transferred to a Children’s hospital for further testing on his heart. He was hooked up to all kinds of wires and it was one of the scariest moments of my life. We only got to see him for about an hour before the ambulance came and took him to the Children’s hospital. It was whirlwind of a day, but God saw us through it and the next day, he passed all of his tests with flying colors and I was able to bond with my baby for the first time and have my “beautiful moment.”

NH: What’s been the most magical aspect of being an adoptive parent?

AB: “Most days, I forget that Camden is adopted. He looks just like Crawford and he’s been with us from his second day of life, so he belongs with us. Every now and then, I will have a moment and remember that he has another mom somewhere out in the world. I always say that she is my hero because she chose life for her baby boy and I would say that has been the most magical part for me. Knowing that I owe everything to a woman that I have never met. I pray that she has peace in knowing how loved he is on a daily basis.”

NH: If someone is on the fence about adoption–what would you tell them?

AB: “Pray, pray, and pray some more. If it is God’s will, he will give you that peace. I receive messages every day asking how the process works and people are scared about the cost. If it’s meant to be, don’t let the cost stop you! There are so many ways that it CAN be done.”

NH: You recently announced you’ll be adopting baby number two in 2021, you must be so excited! Did that process differ at all from Camden’s?

AB: “We are extremely excited. So far, it is the exact same because we are going through the same agency. I’m sure there will be some bumps along the way, but we are so excited to bring home baby #2.”

NH: How has already being an adoptive parent helped you through the experience this time around?

AB: “I know what to expect this time, so I am better prepared for the timeline and the traveling that is involved. With that said, our adoption with Camden was extremely quick. I was at work one minute, waiting for the phone call to meet a birth mom and the next I’m told that there is a baby waiting for us to come get him. There was no time to think or for anything to really go wrong. That makes me a little more nervous this time, as I know that it doesn’t normally happen that fast. I’m just praying that everything happens the way it should in the Lord’s timing.”

NH: How has faith played a role in how you navigate your IBD and motherhood?

AB: “I would be lying if I said I never questioned why God would allow a 25-year-old newlywed to be diagnosed with a chronic disease with no cure. It has been a tough journey, but I think God has shown me a glimpse of how strong I can be in tough situations and it ultimately prepared me to be a mother. Not long after we brought Camden home, I had a full circle moment one night while rocking him to sleep. I realized that Camden would not be in my life if it had not been for all the trials I faced with my health and months and years of seeing only one line on a pregnancy stick. While the journey was really difficult in the moment, it is the privilege of a lifetime to know God handpicked me to be Camden’s mother and that He was with me through all of the really low times.”

Connect with Audrey on Instagram: @audreyabolton

Click here to check out her blog.

Four Things People with IBD Wish Healthy People Knew

If you live with chronic illness, you may often find you sugarcoat your struggles. For 26-year-old Marissa Spratley of Maryland, this is nothing new. She battles Crohn’s disease, psoriatic arthritis, ankylosing spondylitis, and interstitial cystitis. She manages her conditions with Stelara and sulfasalazine. This week she openly shares what she wishes healthy people knew about life with IBD. I’ll let her take it away.

In the chronic illness community we all know how incredibly difficult it is to have Inflammatory Bowel Disease (IBD), or any other chronic illness. We know what it feels like to get hit with a wave of fatigue so hard you have to lay down immediately. We know what it feels like when our gut is on fire from something we ate. We know what it feels like to have nausea so badly all we can do is curl up in a ball on the bathroom floor and cry. We know these things, yet when we communicate with a healthy able-bodied person, we downplay our struggles and pain. 

Why are we afraid to be honest about how much pain we’re in on a daily basis? Is it because we don’t want to make others feel bad for us? Is it because we don’t want to show weakness? Or maybe it’s because we feel like by explaining how much we suffer on a regular basis, people might know the truth about us. That even though we are incredibly resilient, we live a hard life. We struggle and we cry and we ache and there are days where we wish IBD didn’t exist at all.

The truth is, hell yeah we are strong. But we are also weak, and we are tired. We are exhausted from always having to be strong in the face of pain. We are sick of having to downplay our symptoms and our suffering to make the healthy, able-bodied people around us feel less uncomfortable. We are tired of saying, “I’m good,” when someone asks how we’re doing and we really want to say “I feel like death.” 

So, in the spirit of honesty and opening up to the very ableist world around us about what it’s like to live with IBD, here are four things people with IBD wish healthy people knew.

  1. There are days when it hurts just to breathe. 

No, I am not being overdramatic. Yes, IBD affects more than just your gut. There are days when we wake up and everything about us aches. The way I describe it, is that I feel like I just got hit by a bus. My whole body aches deep in my bones, and it can take me an hour just to get out of bed and stand up straight. Those days are some of the hardest because on the outside we look perfectly normal. Please remember that not all illnesses are visible to the eye.

  1. Good intent doesn’t always mean good impact.

We know you’re just trying to help when you make suggestions about things we could do to try to feel better. But the truth is, we know our bodies better than anyone else, and trust us when we say — if there was something we could do to make us feel better, we’d do it. When you comment about things we should try (like juicing or yoga or going paleo), it makes us feel like you think we aren’t doing enough to feel better. Our healing and health are our business, and while we know you care, if we want your help or advice, we’ll ask for it. We appreciate you understanding this.

  1. Having a chronic illness is really hard on our mental health.

IBD is hard, period. Folks with chronic illnesses not only have to struggle with our physical health, but IBD also has a huge impact on our mental health. Being chronically ill makes you question a lot about yourself — Am I a burden to those around me? Am I worthy if I can’t work? Does my chronic illness make me hard to love? It also makes you question a lot about your worth — Am I lesser than because I can’t work as long as healthy people? Will employers not want to hire me? Do I bring enough to a relationship? These are all real questions I’ve asked myself at one time or another, and I can guarantee they are things other chronically ill folks have thought about as well. The way that IBD can affect your mental health is one of the most challenging parts of being chronically ill, because it is not talked about. So, what can you do to help us with our mental health? You can remind us we are inherently worthy, no matter how “productive” we are. You can remind us that you love us for who we are in our hearts, and not what we can do with our bodies. That means more to us than we can even put into words.

  1. Ableism affects the chronically ill, too.

Many people with IBD and chronic illnesses struggle to claim themselves as disabled, and this is something I could go on a tangent about. But here’s what you need to know: IBD affects our bodies in ways that make us less able, or disabled. The truth is, in the able-bodied centric society we live in, we believe it is offensive to call someone disabled because it means they can’t do something. However, to the actual disabled folks in our community, it is not offensive at all. We own the fact that we can’t use non-handicapped restroom stalls or walk up stairs. We are not afraid to say that there are tasks we cannot do as chronically ill, disabled individuals. It is our ableist society who thinks the term disabled is offensive. It is the ableist mindset that believes by saying someone can’t do something, we are being hurtful. Because to the chronically ill and disabled community, we know that our disabilities do not affect our worth. We know that our health does not affect our worth. But now we need you to know that, too.

To all my IBD and chronic illness folks: I see you, and I hear you. I hope that the next time you have a conversation with someone and you want to be real about how much it truly sucks sometimes, you can send them this article.

To the healthy, able-bodied folks reading this article, thank you for showing up and reading to the end. I hope you learned something new about how to better support your loved ones with IBD or chronic illness.

Connect with Marissa on Instagram: @mindbodycrohns