Category: Caregiving & IBD

The Patient Experience: What the IBD Community Says About Stelara

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Starting on a biologic and finding one that helps manage your IBD can be challenging physically, mentally, and emotionally. Nearly 13 years ago (July 14, 2008) I sat in my GI’s office like a fish out of water petrified of injecting myself with four Humira shots. I remember how daunting and overwhelming taking the plunge into life on a biologic was and know I would have given anything to hear firsthand experiences from fellow IBD patients. This inspired me to launch a special series on Lights, Camera, Crohn’s hearing firsthand accounts from people like you and me, living life on biologics. So far, I’ve covered Remicade and Entyvio.

This week—we tackle Stelara (ustekinumab). Stelara is categorized as a human interleukin-12 and -23 antagonist. Patients receive a one-hour loading dose infusion and follow up with an injection every 8 weeks. As you’ll read, some patients receive their injection every 6 weeks, others every 4. Stelara is indicated for Crohn’s disease, ulcerative colitis, severe plaque psoriasis, and active psoriatic arthritis. As a biologic, it joined the IBD game in September 2016 for Crohn’s disease and October 2019 for Ulcerative Colitis.

“I’ve been on Stelara for almost 5 years. I started taking it right when the FDA approved it for Crohn’s disease. I have only good things to say, because it’s keeping me in remission. It’s easy to administer and doesn’t burn like Humira used to (prior to the Citrate-free formula). I stayed on Stelara throughout both my pregnancies. My GI had me skip my last dose both times I was pregnant, and I re-started my injections once the babies were here,” said Ashley Miller.

Patient Advocate and Co-Founder of IBD Desis, Tina Aswani Omprakash, joined a clinical trial for Stelara to treat her Crohn’s disease. She says it took months to work, but it was the first time in a decade of having IBD and enduring more than 20 surgeries that she was able to achieve remission.

“At that juncture, I thought my life would always be in shambles and that I would never be able to rise from the ashes of this disease. But here I am today pursuing advocacy work and going to graduate school part-time. Modern medicine is nothing short of a miracle and I can’t help but count my blessings every single day to have been given another chance at life again. Thank you, Stelara, for making me whole again.”

Click here to learn more about Tina’s clinical trial experience with Stelara.

Making the Switch

Lauren Gregory is an IBD mom and a pediatric hospitalist. Even as a physician herself, she was nervous about switching biologics. Prior to starting on Stelara, she took Humira injections for 8 years. Unfortunately, the Humira induced numerous medication related side effects that really affected her quality of life.

“I was worried that Stelara wouldn’t work and that I would feel even worse. Switching medications ended up being the best decision. I have been in remission since starting Stelara four years ago and feel better than I have since diagnosis. Stelara also allowed me to have a healthy pregnancy and baby!”

Jenna Ferrara recently made the switch from Remicade to Stelara. Last week, she did her first self-injection and says Janssen was beyond helpful throughout the process. Click here to learn about the Nurse Navigator Program. The program provides a registered nurse (in-person) to help support you as you learn to give yourself injections. 

“Between the nurse navigator and sending a training nurse to my house, they made it so easy. I was nervous before my first shot, but thanks to the nurse, it was great!! I’m still waiting to see results, but things have been slowly getting better after only two doses.”

“I tried Stelara after Humira failed me and it never helped or worked from the start, but regardless it was sold to me as the best option. My attending at the time even said it was his top choice for patients and would have put me on it from the start if he had been my GI who diagnosed me. I was super disappointed it failed, but now I’m on Remicade and feeling better than ever,” said Julie Mueller.

Erin O’Keefe was diagnosed with ulcerative colitis in 2017 and initially was able to control her IBD with mesalamine. She started Humira in January 2020 and had what was believed to be a drug-related reaction that landed her in the hospital for 2 weeks and the ICU for 3 days.

“After I was discharged, I was started on Stelara, and I couldn’t be happier with the results. My symptoms are minimal, and I have even been able to re-introduce foods that I tended to stay away from. The injection is easy and I’m so happy not to be taking pills daily. Fingers crossed I can stay on Stelara for many years to come!”

“My 15-year-old son started Stelara last fall after a Humira fail (he was on Humira for 4 months when he developed psoriasis). It seems to be working as his markers and symptoms have slowly subsided. He has also put on some much-needed weight. Therefore, his doctors have recommended that he step up to the adult dose. Their aim to fully eradicate the inflammation—his calprotectin is still elevated. While Stelara is approved for pediatric use for psoriasis, it’s not yet approved for Crohn’s…so there have not been any studies.”-Michelle Boas

Hayley Weiss had to switch to Stelara after Humira caused her to get Psoriasis on the bottom on her feet and the palms of her hands. She just celebrated two years of being on Stelara. The 8-week dosing wasn’t doing enough to keep her IBD under control, so she was switched to every 6 weeks.

“I was doing well for awhile on the 6-week injections, but then at about 5 weeks I was getting symptomatic, so my doctor decided to actually give me another loading dose and I kept on with the 6 weeks for a little while until September of last year. At that time, my doctor approved me for every 4 weeks and that is what I have been doing.”

“I switched to Stelara from Humira in February 2019. I feel the best I’ve ever felt in a long time. A lot less breakthrough flares, energy levels are back, and inflammation numbers are lower than when I was on Humira. I haven’t had any negative reactions and have zero complaints!”- Erin Forman Carmiel

Martin R. was on Humira for about a decade. During that time, he calls the drug a “game changer” for bringing stability to his life when it came to managing his Crohn’s disease and reducing the need for steroids and antibiotics.

“After the regular blood tests for the azathioprine which I’ve been taking since 1992, I showed I had developed antibodies to Humira. I chose Stelara two years ago and it seems to have taken over where Humira left off. I don’t have additional side effects and a longer interval between injections, so that’s a bonus.”

After two years of remission, special education teacher, Jasmine Edwards, started flaring, despite being on Entyvio. Previously, Humira and Remicade gave her drug-induced lupus. Now, after just receiving her first dose of Stelara, she’s hoping the fourth biologic is a charm.

“I’m looking forward to the freedom of not having to get monthly infusions at the doctor’s office. I really hope Stelara puts me in LASTING remission so I can get back to a better quality of life. I’ve been feeling well since my loading dose infusion, but I’m also on prednisone. The only side effect I had after the infusion was feeling tired. In four weeks, I will administer my first at-home injection. I’m nervous about giving myself a shot because with Humira I used the pen, but I’m READY for remission, so I’ll try anything!”

Amanda Hart has had two doses of Stelara so far. Unfortunately, her MRI still shows new inflammation.

“I’ve been increased to once every 4 weeks. If there is no improvement in three months with the higher dosage, I’ll be looking for a new approach. I was originally on Humira, but switched due to my symptoms. Sadly, the symptoms on Stelara have been worse and my diet is more restricted then when Humira was not considered effective anymore.”

Alli Butler was previously on Humira, she finds Stelara makes her feel similarly.

“I’m currently taking Stelara, it has worked great for me and got me through my third pregnancy. Hoping it continues to work well through my postpartum experience.”

Tips for Self-Injecting Stelara

Lori Plung has battled Crohn’s disease for more than 40 years. Since that time, she’s been on four different biologics. She credits Stelara as her easiest patient experience.

“Remicade and Entyvio are obviously infusions—they took time and planning to organize appointments at infusion centers and waiting there while being infused. I was on Humira which was nice to have the freedom to inject at home, but I didn’t like the pen model of injecting. I haven’t had any problems with Stelara. I started my loading dose infusion in April 2019 and give myself the injection every 8 weeks. I love that it’s a pre-filled syringe and that I can do the injection in my home.”

Lori found this helpful tutorial on YouTube that offered great tips for injecting Stelara.

Claire Paschall recommends taking the injection out of the fridge so it can warmup to minimize the burn.

“The automatic needle pullback jolts if you take your thumb off once done and it can hurt (so slowly take your thumb off). I feel like it took longer to build up in my system than Remicade and Humira, however I haven’t had any side effects to report. I have been flaring with my rectal disease, but my small intestine disease is in remission.”

Plea for a Pen-Style Injection

Courtney Meyer started Stelara in March and immediately saw improvement with her symptoms. Previously, she had tried Remicade, Humira, and Entyvio.

“It’s so nice not to have to get an IV after the loading dose. The only downside is that it doesn’t come in a pen option like Humira, and I have difficulty with needles, so I get it administered by a nurse in my GI office every 8 weeks. They inject it in the back of my arm, so I don’t have to deal with the usual stomach or thigh injection sites. It’s the most convenient and easiest treatment of Crohn’s that I’ve been on in 15 years! I was able to stop other medications and I’m just on Stelara. No side effects so far.”

Julianne Bossert was diagnosed with Crohn’s more than 25 years ago. She was on Humira for almost 5 years and says it worked great, until it didn’t. She started Stelara in February and is gearing up for her fourth dose next week.

“I feel like I’m on the cusp of getting better, but not quite there yet. I’m about two weeks out of being off steroids that I have been on for a year. So, my crutch is now gone, and we will really begin to see if Stelara is working. My two biggest complaints are the shot itself. It’s not a pen like Humira, which was way easier to administer. The syringe is way scarier, and they show you how to inject it once and then off you go! Awful anxiety. The other complaint is how different the relief is. When I was due for my Humira about two to three days leading up to I was in bad shape…very sick. But I’d get the injection and feel better within an hour. Leading up to Stelara, I feel awful, get the shot, and still feel awful for days. The turnaround time isn’t as quick for me.”

Emily Beaman is an IBD mom of two who initially started on Humira and was switched to Stelara two years ago.

“I will say the only thing I don’t like is the injection. I prefer the Humira pen-style. I have yet to be able to give myself the injection which means I have to rely on my husband to do it. I find it hurts more than the original Humira did for me (the Citrate-free version wasn’t available while I was on it) I really wish they would come out with a pen-style injection. I worry about if I ever had to give it to myself…that I wouldn’t be able to.”

Stelara Tips for the IBDMom (or Dad!)

Brooke Abbott is a patient advocate, single mom, and co-founder of IBD Moms. She shares helpful tips for administering the injection whether at home or at your doctor’s office.

If injecting at home:

  • Keep an injecting kit. Have a small kit prepped with alcohol wipes, band-aids, and cotton balls or pads.
  • Prep the night before. Hydrate as much as possible and make sure you have your kit ready and prepped.
  • Injection day. Make it a relaxing event. Have your injection before a family movie night so you can get some cuddles in after injecting yourself or being injected.
  • Normalize your treatment. “Practice” with your little ones with a play doctor’s kit. I used to always play doctor and do fake injections, to normalize living like a patient for my little one.

If injecting at the doctor’s office:

  • Book Appointments to include self-care time. I try to book appointments for my injections early in the day so I can have time after to do something for me. Whether it’s going to grab a coffee and read, meet with a friend, or have a nice lunch.
  • Take the LO (little one) with you. I am all about including my LO in my patient life. I want him to be able to ask questions and voice concerns. So sometimes when he is out of school, I will take him with me. It’s good for him to hear the progression of the treatment and to see mommy being brave and getting an injection.
  • Multitask. Try and take all your blood tests and everything at one time. That way you don’t have to make any unnecessary trips to the doctor’s office.

Let’s Talk Side Effects

Overall, the consensus from patients was little to no side effects—which is a HUGE win. Of course, each person’s experience with IBD and with biologics is unique.

Stelara is the first biologic for Shanna Quinn. She started on it in July 2020 following bowel resection surgery. She found starting off with an infusion was a bit “scary” and much preferred giving herself a shot which she says is “so easy.” In her opinion, making the decision to start a biologic was the biggest hurdle, rather than choosing one.

“It doesn’t hurt, although you do have to go slow or else the medication will sting a bit. One drawback is that I get tired afterwards. I’ve learned to take the day and relax and sleep, if needed. I do my shots on the weekend to allow for that. My GI and I discussed a few options before choosing Stelara. I took a test that asked questions about priorities, risks, concerns, etc. The results gave me details about how each biologic stacked up against your concerns and priorities. Take the “IBD&Me” test for yourself here. Knowing you may need to be on a medication for life or knowing it may fail you is hard to wrap your brain around. I hope IBD will get way more targeted and specific regarding treatment options.”

A patient who wishes to remain anonymous has found the side effects of Stelara to be more draining than Remicade, but not as bad as Entyvio. He says the first three days after the injection he needs considerable rest.

“I have also noticed systemic night sweats as far out as five weeks after the injection. For me, this is unique to Stelara in terms of my individual experience. The silver lining is that Stelara seems to have generated more stability and normalcy from an IBD symptom perspective. My level of disease is quite severe and to date, Stelara has had the best outcome. One drawback however is that insurance companies are less willing to grant physicians discretion to prescribe more frequent injections. My GI has said he faces greater pushback on Stelara specifically.”

Paula Hepburn has been on Stelara for 1.5 years, it’s the only biologic she’s been on thus far. She feels like it’s working well to control her Crohn’s disease.

“The first infusion gave me crazy fatigue for four days and I often get tired after each injection. Sometimes it only lasts a few hours, sometimes into the next day. I feel fortunate to have access to this medication because it helps control my IBD so well.”

Madison Morgan has been on Stelara for 2 years. She started it following an ileocecal resection that involved the removal of 8 inches of intestine. Madison finds the injections to be easy. She does experience some side effects though.

“I get a headache immediately after the injection that lasts about 15 minutes, the worst side effect I’ve had is yeast infections and UTI’s, I’ve never had them until Stelara and have had 6-7 yeast infections in the last two years and 2 UTI’s. A couple weeks before my Stelara injection (once every 8 weeks, 95 mg), my arthritis from my Crohn’s gets pretty bad, but seems to get better after my injection.”

“Stelara has been amazing! Aside from the infusion loading dose, it’s quick and easy and fairly pain free. I have minimal side effects other than sometimes feeling sleepy after my injection, but other times I have crazy energy. Overall, this is the only biologic that has worked for me for more than a couple of years.”-Bethany Lowe

“I’ve found the injections to be almost painless and I’m a huge wimp with shots. It took a few tries to find the right timing and frequency for my shots, but I do them every 4 weeks and approximately 1-3 days before each shot, I start to get some IBD symptoms…so I know it’s working!”-Danielle Fries

Olivia L. was diagnosed with ulcerative colitis 20 years ago. She’s an IBD mom of 3. Lucky for her, she was able to get through the first 18 years of living with IBD without being on a biologic. Unfortunately, she experienced a postpartum flare two years ago that is still wreaking havoc on her life.

“I started Stelara about a year ago. It’s super easy to use. The only side effects I’ve felt are being tired for a day or two after the injection. I feel quite lucky that I was able to start Stelara, rather than other options. It’s easy to take because you do it at home, and the side effects are non-existent for me. Unfortunately, it hasn’t been as effective as we had hoped. I do my injection every 4 weeks instead of 8. From a tolerance and side effect standpoint, Stelara has been a good medication for me, but it still frightens me to be on a biologic. I know everybody manages this dance in their own way.”

Krista Cherrix has been on Stelara for one year. She prefers the syringe injection over the Humira pen but has unfortunately dealt with weight issues since starting it.

“I have gained a TON of weight on it and can’t seem to get it to budge even with diet and exercise. I also have not been able to get pregnant so far, which isn’t necessarily the drug, but I got pregnant with my first (pre-diagnosis) without trying.”

“I took Stelara monthly for nearly 2 years and had no side effects. My diarrhea was still frequent and after having an MRI and a colonoscopy, the results showed that I still have significant inflammation in my small bowel. I am going to be starting Humira in hopes of healing the inflammation.”-Marsha Gagnon

Dealing with Insurance and Cost

Shawn Bethea is an IBD patient advocate and author of “My Tummy Really Hurts”. Overall, she considers her experience on Stelara to be good, but wants others to know there have been some hurdles to cross along the way.

“At first, I truly didn’t think the medication would work for me. I was placed on the standard dosing and scheduled to receive my injection every 8 weeks. During the initial weeks I’d feel great! I had more energy and didn’t feel the sharp pains as I usually did (in my stomach area). I wasn’t going to the bathroom as often and even my Eczema seemed to be clearing up.”

However, after those first initial weeks, she noticed a decline. Her energy decreased, her Eczema became bothersome, and her joints would ache. She communicated her concerns with her GI who prescribed injections every four weeks.

“With any high dollar medication comes unique challenges to those of us who don’t live on a Beyonce budget. Between my insurance, the patient assistance program, and copay, the drug was running about $20,000 monthly. When you have insurance and nothing changes like a lapse of coverage or a job change, this is something you can possibly juggle (depending on the level of coverage/assistance, but mine was pretty good). The problem came in when I changed jobs, lost insurance, and had to wait for new insurance to take effect – which was delayed, of course.”

Shawn stopped taking Stelara, due to lack of insurance coverage, everything was impacted. She began to experience joint pain, became extremely tired, and was using the bathroom more—even experiencing extreme constipation.

“Overall, I love Stelara, but I hate the way our healthcare system operates. No drug should run half of someone’s salary monthly. But I subscribe to the system because I simply want to live and be healthy like everyone else.”

Jacquie Persson has been on Stelara since 2019. She started off with the recommended dosage of injecting every 8 weeks, but after 6 months, she was moved to every 4 weeks.

“Since starting Stelara, my Crohn’s disease has been well-managed I haven’t had to take prednisone since 2018, after depending on steroids on and off from 2016-2018. Financially, being on this drug is a little anxiety inducing. The list price is over $20,000 per injection and I’m constantly on edge wondering when or if my insurance will decide to stop covering it. My copay is over $200. I currently have copay assist which brings my out of pocket down to $5, but what if that program were to go away?”

“I started Stelara in December 2016 after Remicade failed me. I had success with small flares here and there. In March of 2021 I had a big flare—my first in about 5 years and was out of work for 2 months. My GI wanted to increase my Stelara from every 6 weeks to every 4, but my insurance repeatedly denied it and just finally approved it about a month ago, thankfully in time for me to be feeling better.” – Mary Fordham

“The dosing is wild! I started at 8 weeks and now I’m moving to six…and I know some people on every 4 weeks. Insurance has a really hard time approving more frequent injections.”-Catalina Berenblum

Click here to learn more about Janssen’s CarePath Savings Program for Stelara.

Success Stories on Stelara

“Stelara has been a Godsend for me. I had an ileocolic resection nearly five years ago and have maintained remission with Stelara and azathioprine since my surgery. The side effects have been minimal. For me, it’s been one of the easier injections I’ve used. It doesn’t sting or burn like Humira did prior to the release of the Citrate-free version. I take Stelara every four weeks instead of the typical eight.”-Jennifer Ryan Carmichael

Amanda Pennwell was diagnosed with Crohn’s when she was 8 years old. She’s now a mom of 3 and due with her fourth baby this October. She’s been on almost every drug approved for Crohn’s disease. She says she can honestly say Stelara has changed the severity of her Crohn’s the most significantly, with the least amount of side effects and the biggest improvement to her day-to-day life. She started Stelara in April 2019 after flaring with her twins. She was able to get pregnant, have a smooth postpartum experience and breastfeed her third baby while on it.

“Stelara helped me get my life back. This is something I never dreamed my broken body would ever be capable of doing. I’m so thankful that Stelara is continuing to work for me. I have been healthier than ever. I work out all the time and my body feels strong. I haven’t experienced abdominal pain more than a dozen times in the past two years. It’s truly remarkable. Stelara has enabled my husband and I to chase our dreams while raising our babies! I work part-time while staying home with the kids. We our building our dream home and I know I couldn’t keep up with it all if I felt the way I did two years ago. I’m thankful for research and better IBD drugs like Stelara.”

Patient Advocate, Founder & President of Patient Authentic, Lilly Stairs, credits Stelara for saving her life.

“I have been in medically controlled remission for nearly 8 years from all three of my autoimmune diseases – Crohn’s Disease, Psoriatic Arthritis, & Psoriasis. I went from bleeding ulcers in my small intestine and total body arthritis that left me paralyzed in pain to living symptom free and thriving as a solopreneur. I am so grateful for this brilliant medical innovation and only hope that someday all autoimmune patients can have this type of experience on a medication.”

Check out previous biologics that have been featured on Lights, Camera, Crohn’s. These articles have NO affiliation or guidance from pharma. All content was created thanks to countless IBD patients sharing their personal patient journeys with the hope of helping others.

The Patient Experience: What the IBD Community Says about Remicade

The Patient Experience: What the IBD Community Says About Entyvio

Coming up next: Humira (adalimumab)

“My dad and husband are both GI’s and I have Crohn’s disease”

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Imagine having a dad who’s a gastroenterologist and a husband who is a GI fellow… and having Crohn’s disease. For 32-year-old, Lauren Gregory, that’s her reality. She was diagnosed with Crohn’s in 2008. Lauren is also a doctor herself and an IBD mom! When she’s not taking care of pediatric patients in the hospital, she’s enjoying time at home with her husband, Martin, and 6-month-old son, Connor. In light of Father’s Day, this week on Lights, Camera, Crohn’s, we share about how the most important men in Lauren’s life have helped her cope and overcome challenges IBD has presented along the way.

Through the eyes of Lauren’s dad

Late one night during Lauren’s college sophomore Christmas vacation from college, her mom called her dad with words he will never forget. She said, “Lauren is having terrible abdominal pain and is on the floor.” After a quick exam and seeing how tender and distended her abdomen were, he knew it was time to head to the closest emergency room. A CT scan showed massive gastric dilation and small bowel thickening. The surgeon was called, and he agreed it was likely Crohn’s.

Lauren was discharged home on a liquid diet with outpatient GI follow up after New Year’s. Unfortunately, her concerning symptoms persisted and her dad called a friend who was a gastroenterologist. He directly admitted her.

“When Lauren was admitted to Barnes Jewish Hospital in St. Louis while in college at Wash U, her then boyfriend (now husband) sat by her bedside for days as she underwent scopes and a small bowel series. We knew he was a keeper then. As parents we always worry about our children. As a gastroenterologist, we may worry more when our children have GI issues. We are fortunate to have connections in GI which allowed Lauren to have prompt evaluation and ultimately a great outcome,” said Dr. Bruce Waldholtz.

Navigating love and IBD

Lauren met Martin in college. At the time, he knew he wanted to be a doctor, but he did not know what he wanted to specialize in. During internal medicine residency, Martin was torn between cardiology and gastroenterology. He ended up choosing GI and is about to start a one-year fellowship to get extra training in IBD and nutrition. (Small World Fun Fact: He is part of the same GI practice I go to in St. Louis!)

Martin says Lauren inspired him to choose gastroenterology and specifically focus on inflammatory bowel disease.

“Watching her go through what she did at such an important time in her life was inspiring. I was so grateful to her doctors taking such good care of her. I wanted to be like them.  I wanted to help people like her succeed in living a rich, enjoyable, and rewarding life. “

Lauren feels incredibly lucky to have found someone as supportive as her husband. A month after they started dating, she was hospitalized with a partial small bowel obstruction. The fact he didn’t leave her side throughout that vulnerable and scary experience meant a lot to her.

When Lauren was hospitalized for one week during her fourth year of medical school, Martin was going through his second year of internal medicine residency. They were married, but in a long-distance relationship at the time.

“During residency you can’t just take days off, and it is challenging to find coverage. Because of this I did not expect him to be able to visit, but he somehow did. This flare occurred as I was transitioning from Humira to Stelara. I have been extremely fortunate to have stayed in remission since then (2017).

How personal life impacts professional life

“Without question Lauren makes me a better doctor, especially with taking care of IBD patients. I can understand the anxiety behind the questions they have about medications and what to expect because we went through the same thing as a family,” said Martin.

Lauren says her IBD has given her a unique outlook in how she cares for patients as well.

“My experiences with Crohn’s have made me more empathetic towards my patients, and now that I am a mom, I have much for empathy for my patients’ parents. Spending extra time with patients is not always easy given that I work mostly in the emergency room, but I make a point to take the time to listen to my patients and their parents’ concerns and provide reassurance when appropriate. In my marriage, my husband answers my medical questions and has a realistic perspective of what patients go through.”

Gratitude for her dad and husband

“I realize how fortunate I am to have a father (and now a husband too) who is a gastroenterologist who can answer my questions and to help me navigate our healthcare system, especially insurance! When my gastroenterologist decided I needed to start a biologic, and recommended Remicade, my dad pushed for Humira so that I wouldn’t have to worry about scheduling infusions around my college class schedule or worrying about transportation when I didn’t have a car. At the time I had no understanding of how having a chronic disease would affect my life.”

The Patient Experience: What the IBD Community Says About Remicade

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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

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

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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.

45 years with Ulcerative Colitis: What a former pediatric patient wants you to know

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Being diagnosed with IBD as a pediatric patient looked different in the 1970’s. For 54-year-old Brett L., the start of his patient journey began when he was only nine. The year was 1976. He started experiencing fevers, bloody diarrhea, vomiting, and abdominal pain. As he puts it—the symptoms started a year-long quest to find an answer. A quest that involved frustratingly long waits at doctor offices, endless tests, and medical trials. He was ultimately diagnosed with acute ulcerative colitis at the age of 10. Now, in 2021, Brett has unique insight and perspective to share with our community.

Patient “Number 1”

As you can imagine, Brett spent many years on high dose steroid and sulfur pills. The side effects of the steroids (moon face, weight gain, bloating, mood swings, and ravenous hunger, etc.) added insult to injury. From 7th through 9th grade, Brett missed nearly 60 days of school each year due to severe flare ups and hospitalizations. By the time he was 13, Brett’s parents were desperate for a cure as his condition worsened. With no relief from traditional medicine, they sought out additional care from holistic doctors, nutritionists, even an angel healer at one point! Nothing helped to manage Brett’s IBD.

“In 1981, I was 14. I’d been battling debilitating and severe flare ups that made me so weak I had to crawl to the bathroom or walk doubled over in pain. Each hospitalization was taking its toll. Over the years, though I was growing, I had lost 30 pounds. It was at this point that my doctor proposed something that had never been performed on a pediatric IBD patient—a total colectomy and “pull through” operation that would leave me fully reconnected and waiting for the ileostomy closure…allowing me to eventually go the bathroom normally again after a recovery period of a year or so.  It was risky surgery back then. But not having it was a risk too.  I agreed, and we went ahead with the surgery.” said Brett.

Brett was deemed “patient number 1” for this pediatric procedure and his case study was published in medical journals. To this day he remembers waking up from surgery in the pediatric ICU at Westchester County Medical Center in Valhalla, NY. He recalls counting 18 tubes and lines connected to his body and thinking that he couldn’t believe he chose to do this to himself. The surgery lasted 14.5 hours and the incision ran from his pubic bone to his sternum—the entire length of his abdomen.

Living with an ileostomy as a teen

“I learned to manage the ileostomy with some upsetting and messy mishaps at the very beginning. And in class sometimes the stoma would make embarrassing sounds. I learned to feel it coming and cover it with my hand to quiet it. But without a colon, I was now a healthy 14-year-old. The doctors said that upon examining what was left of my colon, they estimated I had about two weeks left before a fatal perforation,” said Brett.

A year later his ileostomy was reversed, and he was able to go to the bathroom “normally”, again. While he’s grateful for this—it hasn’t been all sunshine and rainbows. Brett says he initially had an abscess at the closure of the stoma. Ever since, he has gone to the bathroom more than normal people. In recent years Brett developed a challenging case of chronic pouchitis that at its worst caused pain and had him going 20-30 times a night.

The good news is that “after about 4 years of this, I finally seem to have treated and solved it myself, with psyllium husk powder at breakfast and lunch times, and 3 Lomotil pills with dinner. I’ve also reduced fluid intake during meals and become more careful about not overeating. I learned some of this in my online research about immediate post-op colectomy patients. The doctors had a hard time helping me with this, but I seem to have resolved it myself.” 

From past to present

Today, Brett is a healthy 54-year-old man and his pouchitis has never been more under control. Through all the ups and downs with IBD, he’s lived a fulfilling life as a professional singer, and as an executive of multiple companies. 

“In my career I’ve been an investigator, a head of marketing and sales, I’ve grown startup companies, and have traveled the world for business and pleasure. I’ve earned an advanced degree from an ivy league school, and I have an amazing 16-year-old daughter who is a gifted, performing singer-songwriter in her own right.”

Brett believes his ulcerative colitis has made him more appreciative of life and the little things.

“I have always been that person who lingers over sunsets, gazes at the moon, and stops and notices the teeny flowers poking through the cracks in the sidewalk, or street art, and the coincidental things one comes across as noteworthy or remarkable. I notice and really drink in the happy, good moments because I know what it’s like to not be able to be out and experience these things. I know I am fortunate to be here to tell my story.” 

Here are some helpful nuggets of knowledge Brett would like both those with IBD and their caregivers to know:

  • Don’t let fear of IBD stop you from living your life and having fun, or asking that person out, or going out with friends, when you are feeling well. As soon as I was feeling well enough to get back out there after a flare up, I lived life to the fullest and played like every other kid. You deserve to be there just as much as every other kid, teen, or adult does. When you are feeling well, try to make the most of that wellness, and not let the fear of what might happen stop you from living.
  • You are not “less than”, because you have an illness. In fact, you may even have an added level of maturity because of your illness that others do not, because of your need to contend with it, and interact more with adults and medical professionals and present your situation to them in a coherent and meaningful way. Look for the silver linings in everything. Notice the small pleasures, they help you get through the down times.
  • To parents—your child is a survivor. It takes a lot to keep them down. They will have ups and downs with their IBD. But 2021 is the best time ever to have to live with this diagnosis. Current treatments and even surgeries have changed the game and the patient experience, for the better and the future is even more promising. IBD can be traumatic. Children and adults can benefit from seeing a therapist to help cope with the lifelong nature and complications of the disease.

Working from home is more than a job perk for those with IBD

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The COVID-19 pandemic has normalized talking about chronic illness in the workplace and shed light on not only what it means to be immunocompromised and how it impacts one’s quality of life, but also the benefits and possibilities that working from home provides for everyone involved.

Prior to the pandemic, asking to work from home or setting up accommodations with your boss looked different. It could feel a bit taboo. Maybe you worried how the rest of your team would perceive you as possibly getting special treatment. Maybe you didn’t want to appear as if you couldn’t keep up or do what was expected of everyone else. But one of the positives to come out of this crazy time is that the way we work and how we work has shifted.

I’ve been a freelancer/blogger and stay at home mom since I became a mom in March 2017. That being said I worked full-time in the TV news industry, at a PR agency, and in corporate America at a natural gas utility the first 12 years I had Crohn’s disease. I am well-versed in how to navigate those difficult conversations with your boss, how to balance your health and well-being with your career, and what it means to thrive professionally while making sure your health doesn’t take a hit.

An opportunity for change

If the past 13-plus months have shown us anything, it’s how adaptable and flexible work can be. Businesses and organizations have real-life intel now that can help guide what the future of working looks like, and how employees can best be supported, engaged, and accommodated.

The chronic illness community can use this time as a springboard into the future and communicate their needs and hopes moving forward. According to the CDC, nearly 60% of adults in the U.S. live with at least one chronic illness. Even though that’s a huge percentage, many leaders still don’t know how to properly support employees who fall into this category and those of us who live with a disease such as IBD often question our own abilities and what we’re able to bring to the table compared to our healthy co-workers and counterparts. Working from home through the pandemic has evened out that playing field.

Having the flexibility to work from your couch or run to your bathroom in the comfort of your home versus in the middle of a big work meeting with your peers makes a huge difference. Knowing that you can schedule meetings and availability around blood draws, appointments with specialists, scopes, infusions, etc. offers great flexibility in managing your illness and getting the job done without feeling guilty for taking care of yourself.

How to better understand and support employees

From a chronic illness perspective, we push ourselves in all aspects of life, even when we’re running on empty because we constantly fear being viewed as less than. There are many ways business leaders can better support employees who are taking on a disease like Crohn’s or ulcerative colitis.

As people with IBD we worry about how we’re perceived by others because of the stigma that surrounds chronic illness. There’s guilt. There’s fear of being considered lazy. There’s the worry about coworkers judging you and thinking you’re a complainer or weak, when in fact they may not be aware of your whole back story.

So how can we improve the support of our managers?

–Initiate communication: Ask your boss about setting up a 15-minute monthly one-on-one touch base to discuss how you are feeling and if you need additional support. Talk about what the next month looks like as far as doctor’s appointments, labs, tests, etc. I personally always felt better supported and understood by sharing my health struggles with my coworkers—whether it was my co-anchor and meteorologist or the communications team at the company I worked at. When I was hospitalized (which happened on multiple occasions) or needed surgery, I would email the entire team and give them a heads up about what was going on, so they heard it from the “horse’s mouth” and not through office hearsay or gossip. By articulating your patient experience you give others a chance to be empathetic.

–Make the invisible—visible: It can be easy for us to downplay our pain or put on a smile when we’re flaring to protect ourselves, even on Zoom calls! The unpredictability of IBD makes work-life a challenge because you can start the workday feeling energized and ready to take on the world and after lunch feel like you can’t even stand up straight and need to lie down. The constant uncertainty of when symptoms are going to strike can be debilitating in and of itself. By being open and transparent in these moments of struggle you help paint a clearer picture of what you’re experiencing for those who don’t live our reality. In corporate America, I used to sit in the boardroom and start a meeting by casually saying “I just want to let you know my Crohn’s is acting up. I’m in a lot of pain. It’s hard for me to sit up straight so I’m going to slouch a bit and I even had to undo my pants!” I approached those moments with humor, but moreso to take off my “mask of wellness” and be transparent that there was much more going on in my mind and body than just the presentation I was giving or listening to. I feel being honest like this made my co-workers helped us build a stronger relationship and rapport.

-Come up with a hybrid schedule: As the world starts to open and companies discuss what the future will look like as far as working from home or in the office, consider what it may look like to work a couple days a week doing each and finding balance. Working from home hasn’t been a detriment to productivity, if anything this time has proved how flexible we can all be in the face of adversity. By creating a space of support and understanding, everyone can be successful. Talk about the options available, your comfort level with returning to work in the office (especially if you’re immunocompromised or haven’t had a chance to be vaccinated), and what the expectations are moving forward.

–Improve inclusiveness: When a business or organization makes employees feel embraced, regardless of their health struggles, it speaks volumes. Even those who are completely healthy should see this as a valued characteristic of their working environment—whether in person or virtual. Nobody knows when their life could take a turn for the worse or when an unforeseen health issue could pop up. For many in the chronic illness community, we went from being healthy to waking up with a disease that will be a part of us, always. It’s on leadership and Human Resources to ensure those with chronic illness are provided with the support they need.

–Stop celebrating overwork: Touting the employee who works around the clock and answers emails at 2 a.m. sends the wrong message. Instead, find ways to commend employees for different reasons. There isn’t one set of parameters that makes someone a great employee. Having work-life balance and recognizing the importance of having time to decompress, put health first, and spend quality time with family, matters and says a great deal about leadership style. The number of hours worked doesn’t equate to the quality of work or one’s competence. The onus is often on the boss or leader to speak up and set these expectations. Being able to manage your team’s energy will keep morale in check and make employees feel appreciated and more invested in doing their best, because they have the energy to do so and aren’t ready to tap out at any given moment.

Remote work is more than a job perk

COVID has forced the conversation and illuminated the challenges those of us with chronic illness are up against when trying to balance our health, providing for ourselves and our families, and being an invaluable employee. Thanks to the pandemic, employers are now looking to re-evaluate what sick leave and disability policies look like, especially as they relate to working from home. Those of us with a chronic illness may finally feel like we’re on an equal playing field when it comes to job opportunities and not having to worry as much about our bodies cooperating so that we’re able to do it all.

IBD is Not Your Fault

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You did nothing to cause your diagnosis or your disease. Read that again. It’s not your fault. No matter what you may see on social media or hear from friends or family, those of us with Inflammatory Bowel Disease did not live “incorrectly” or do anything damaging that “sparked” our chronic, autoimmune issues to come to life.

I was incredibly disheartened recently by a post on Instagram that in so many words claimed that bad habits in life led to a man’s Crohn’s disease. He made blanket statements about how medication and surgery are not necessary and that it just takes a long time and reflection to reverse the damage he caused on himself after years of smoking, binge drinking, etc. The post was not only on his own feed, but also shared by a community IBD page with more than 8,000 followers. After days of endless comments from those angered by his assertions and claims, the post was taken down and the patient “advocate” made his Instagram private, but the damage was already done.

Hold up—what’s with the blame game?!

You may wonder why patient advocates like me get their feathers ruffled by claims like this. I can tell you why. I, along with so many of my counterparts in the IBD community, work tirelessly to educate and inform not only those with Crohn’s and ulcerative colitis about the patient journey, but also caregivers and friends. When misinformation is disseminated it sets the clock back, bigtime. It further stigmatizes our illness, especially when the false statements are said by someone who lives with IBD. Not only does it hurt those grieving and trying to come to terms with their lifelong diagnosis, but it’s a direct attack on those diagnosed as pediatrics and those who did everything by the book (ate well, exercised, got lots of sleep, managed stress, etc.) and STILL got IBD.

If there was a magic bullet or diet that helped “cure” or manage all of us, we would do it. If there was a way to prevent IBD, people would do it. Crohn’s and ulcerative colitis aren’t like lung cancer, which is sometimes caused by smoking or diabetes which is sometimes caused by being overweight or liver disease which can be caused by excessive drinking. IBD is complicated and mysterious. There is not a behavior or habit that is associated with possibly “getting it” one day. The two known factors—hereditary and environmental—leave much to the imagination. I personally have no family history. I was a picture of health until the two months leading up to my Crohn’s diagnosis in July 2005. It felt as though a light switch went off and my world went from being healthy and able-bodied to being chronically ill.

You did nothing wrong

If you’re reading this and wondering what you did to cause your disease, the answer is nothing. If you’re reading this as a parent and feel as though you could have fed your child less processed food or breastfed them instead of giving formula or shouldn’t have had your child vaccinated, please stop believing that. I know we all want a reason. We all want answers and some clarity as to the why—but, at the end of the day, does it really matter? Focusing on the why doesn’t help us focus on the how. HOW are we going to get through this? HOW are we going to manage our disease and live a full life? HOW are we going to cope during flares and periods of remission? HOW are we going to navigate the unknown and thrive? HOW are we going to find the right treatment plan? HOW are we going to target our triggers and learn what to avoid? Focus on what you can tangibly do to improve your patient journey and less on the coulda, shoulda, woulda’s, because just like each case of IBD is unique, so is each back story.

Here I am as a little girl. Long before being diagnosed at age 21. This little girl did nothing to deserve or cause Crohn’s disease.

Stop the finger pointing and the blame game. Stop making the medical community out to be the bad guys and the adversary. Stop acting as though those who depend on medication and need surgery failed in any way.

Start collaborating with your care team and finding physicians who listen and genuinely care about the approach you wish to take to manage and treat your disease, while also understanding that a holistic and “med-free” approach may not be feasible for your type of disease process. Start getting involved and educating yourself about how IBD manifests and the complicated nature of not only Crohn’s and ulcerative colitis, but also the extraintestinal manifestations and mental health aspect that are often not talked about. Even if you’re on medication or have had surgery you can still take whatever measures make you feel better in a complementary way. It’s not all black and white. There’s so much gray area. You can be on a biologic and still try any “elimination diet” you’d like. It’s just a matter of doing what works best for you, without pointing the finger or demeaning others in our community. Start connecting with those who live your reality and lift you up, rather than make you feel like you’re taking the easy way out.

This is 21-year-old me. There were moments where I felt very sick while on this Spring Break trip my senior year of college in March 2005. I attributed the abdominal pain to traveling and eating different food in the Bahamas. Little did I know four short months later I’d receive my Crohn’s diagnosis.

I know that if my 21-year-old self came across posts on social media claiming I caused my Crohn’s and that I could “heal my gut” on my own, I may have believed it. I can tell you nearly 16 years into this, I know without a doubt that is not the case. I am not a failure for taking medication, needing surgery, or trusting my physicians. I credit my 5.5 years of remission to being a compliant, proactive patient who believes in science, educating myself on the facts, and realizing that this disease is bigger than me and a constant learning process. I don’t need to know my why because I’ve done a damn good job of discovering my how’s and you can, too.

IBD Motherhood Unplugged: Exploring Natural Procreative Technology

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Chronic illness can feel all-consuming, especially while you’re trying to balance work and your personal life. According to 32-year-old Allison Wade of Texas, living with ulcerative colitis since 2008 prepared her for the struggle of infertility after living through a four-year flare. Yes, you read that right. Allison was hopeful her and her husband, Nick, could begin their journey to growing their family. Unfortunately, just as she felt the relief of getting her IBD under control, she found out she would be dealing with another condition where there is not a “one size fits all solution.”

This edition of IBD Motherhood Unplugged looks at juggling the mental and emotional struggle of coping with and mourning your body failing you not only with ulcerative colitis, but also infertility, while also being your own advocate for your care plan. As Allison says the question of “WHY” she’s unable to achieve something that women have been doing forever, haunts her.

Allison is a healthcare worker. Her world came crashing down during the pandemic when she found out bringing a baby into this world would be more complicated than she ever thought.

“When I received news that I was in remission after the four-year flare, I was told we needed to get pregnant right away to capitalize on my IBD finally being under control. I underwent an HSG procedure to make sure that I didn’t have any adhesions or blockages in my fallopian tubes due to the chronic inflammation in my colon. We were told everything was normal,” explains Allison. “I also had blood work completed to ensure that I was truly ovulating and that was also normal. We tried for a year and were not successful.”

Allison and her husband met with a fertility specialist in April 2020. The nearest fertility specialist was two hours away, so they set up a telemedicine visit. During the initial consultation they were told it sounded like they were dealing with unexplained infertility.

“My cycles were like clockwork, I was getting positive ovulation tests, my hormone levels after ovulation suggested that I was truly ovulating, there was no reason as to why I had never seen two lines on a pregnancy test.”

The fertility game plan

Allison and Nick set up a game plan with their fertility team that involved three rounds of Intrauterine Insemination (IUI) plus Clomid. If she was not pregnant after that, the next step was IVF. Allison says she felt overwhelmed but was confident that they were going to be pregnant after the first month. Looking back, she says she was naïve to think that way.

“Emotionally, each month is a roller coaster that comes and goes quickly. Each month that passes you feel the gravity of emotions that come with each negative pregnancy test. Financially, it has been difficult because insurance does not cover my fertility treatments and rarely covers my medications. Let me just tell you that every ultrasound and every blood draw adds up. I have to remind myself regularly of how it will all be worthwhile in the end.”

Keeping stress in check

As anyone with IBD knows, managing stress is imperative for helping to keep symptoms at bay. Along with the worry about getting pregnant, Allison has the fear of flaring with her ulcerative colitis.

She explains, “The biggest area of stress has been managing all the appointments and arranging my work schedule on the days I have to unexpectedly drive to Houston for a 15-minute ultrasound. I am very lucky that my job has been understanding through this time.”

Not to mention she also has to take time away from work to receive her Remicade infusion.

“I would advise other IBD women to find ways to manage all the stress and emotions that come along with infertility and chronic illness. I highly recommend seeking counseling services. It is nice to have someone to talk to who is not emotionally involved in the outcome. It is a difficult time for all women, however when you also have IBD, I feel like you are now adding all these supplements, medications, and appointments to your existing list of treatments for your IBD. Find a way to organize everything so that you’re able to manage everything without getting too overwhelmed.”

Utilizing Natural Procreative Technology instead of IVF 

After two failed IUIs, Allison knew IVF was on the horizon. She didn’t feel as though all her concerns were being addressed or that her needs fit into the typical cookie cutter approach.

“I felt like we were being rushed to IVF without any real answers as to why my body was unable to conceive. My husband and I were not emotionally or financially prepared to begin the process of IVF, so we decided to get a second opinion and look at other options.”

This is where Natural Procreative Technology or NaPro comes into play. Allison liked that NaPro doctors look to diagnose the root cause of what is causing your infertility, in hopes that you can conceive naturally without the use of IUI or IVF. The success rates are comparable and often exceed those of IVF, without the increased risk of multiple pregnancies or birth defects.

The Creighton Model of FertilityCare System™(CrMS) is the method of observing and charting important biomarkers in the female cycle. The charting and observational work is the basis of evaluation and treatment in NaPro Technology. Allison has been charting her cycles for the last six months. 

“When I went to my first NaPro appointment, the doctor spent an hour talking to me in the office and my husband on Facetime. She answered every question and explained that she would be as aggressive as we wanted her to be,” says Allison. “She wanted me to chart my cycles and to get extensive blood work completed after ovulation to look at my hormone levels. She also spoke to me about diet, stress, activity levels, and she started me on several supplements. When I left that appointment, I was so happy because I felt like she was treating me holistically and was going to find the cause of my infertility.”

Keeping her eyes focused on the future

Allison is going to have exploratory surgery next month to look for scar tissue or adhesions that may be the result of chronic inflammation from her IBD, which could be contributing to her struggle to get pregnant. She is due for her Remicade the same week as her surgery, so she must push her infusion back until her incisions are healed. As a woman with IBD, going through infertility, this is the reality that is often not discussed or thought about.

“While I try to remain as optimistic as possible about creating a baby that is genetically ours and that I can carry, our hearts would definitely be open to both surrogacy and adoption. My dream has always been to be a mother and I will do everything that is possible to achieve that dream.”

Connect with Allison on Instagram: @al_avawade

IBD Motherhood Unplugged: Taking on the trials of Crohn’s, infertility, and adoption

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When Megan Cape of Georgia was diagnosed with Crohn’s disease in January 2004 at the age of 14, she didn’t know what the future would hold in terms of pregnancy and motherhood. After years of doctors dismissing her excruciating pain as a stomach bug or a reaction to stress, she finally received an answer. During her initial hospitalization, she had an abscess the size of a softball in her abdomen that was pushing on her spine. She was also going septic. She was rushed to surgery where surgeons removed the abscess and part of her intestine, ultimately saving her life.

Fast forward to her college years and Megan met the love of her life and future husband, Colton. She studied to be a Child Life Specialist, a career near and dear to her heart since she spent so much time in and out of the hospital growing up. One of her worst flares happened on graduation day. She was able to muster up the strength to walk across the stage and grab her diploma, but then had to be carried to the car. That week—CT scans shows she had five strictures (narrowing in the intestine which doesn’t allow food to pass through). At this point, her wedding was less than a month away. Her care team delayed surgery so that she would be able to walk down the aisle. 

“On the day of my wedding, I couldn’t even take a bite of food because the pain was so intense. After our wedding and honeymoon, my health declined quickly and got to the point where I couldn’t keep water down. I was throwing up all day and night and my family was taking turns staying up with me. I had at least one ER visit a week, but, somehow, the doctors kept missing how bad things were and would send me home,” said Megan.

She ultimately landed in the hospital for five weeks, as a 23-year-old newlywed. At the time, she wasn’t thinking about children. Megan was focused on getting better and placed faith in God’s hands that when the time would be right, she would be a mom. That was until she went into her GI doctor following the hospitalization and her second surgery. There, she was told she would never have children. Megan was devastated, as you can imagine. This week’s IBD Motherhood Unplugged sheds light on navigating this heartbreaking realization and how adoption changed Megan and her husband’s lives in the most beautiful way.

The unforeseen miracles in the making

Much to Megan’s surprise, three years into their marriage, she got pregnant the first month her and her husband started trying. Unfortunately, they lost that baby. Heartbroken as they were, they were hopeful they’d get their rainbow baby. Each time, getting pregnant happened easily, but time after time, they miscarried.

“Interestingly, God laid adoption on my heart at such a young age. I always knew I wanted to be a wife and a mom, and I always saw myself adopting. But I still felt so many emotions, wondering if and when it would ever be my turn to carry a baby.”

After four miscarriages, they decided to seek guidance from fertility specialists. It was determined that because of Megan’s Crohn’s and past surgeries, the embryos weren’t attaching correctly to her uterus and blood clots were forming, causing her to miscarry. Her physicians believed IVF was her only option, and she was ready to jump in with both feet. Megan and Colton went through all the testing and blood work, but everything came to halt when her doctor conveyed his worries about complications with egg retrieval and such in Crohn’s patients. Megan said the unknown of how her body would respond to IVF in addition to the daunting cost of it all, caused them to re-think their approach to family planning.

Preparing their hearts for something bigger

While in waiting, Megan feels God kept bringing amazing adoption stories in front of her. Stories that reminded her of when she was a little girl and told herself that would be part of her family one day.

“After years of TTC (trying to conceive) and miscarriages, I approached my husband and brought up adoption. I was truly shocked by his response because, without any hesitation, he said, “Let’s do it!” We both had an amazing peace about it and quickly began the adoption process. We had no idea what all goes into adoption and, woah, it’s a lot!”

Megan says adoption was the best and hardest thing they’ve ever done. She credits much of their “success story” to their amazing support system of family and friends who rallied around them to help raise money, to encourage them through the journey, to let them cry on hard days, and celebrate the exciting milestones.

“Nine months into the adoption process, and a month after being an ‘active’ waiting family, we got the call. A birth mom had picked us! She fell in love with us, our story, and our family after looking at our profile book. We were going to have a daughter in 3 short months!” Megan did not include that she had Crohn’s in their adoption profile book, but shared she was unable to have children. 

The blessing of Vivian Rose

Megan and her Colton’s daughter, Vivian Rose, was born October 14th, 2019. She is the answer to years and years of prayer, their miracle baby, and the light of their lives.

“Managing a chronic illness when you’re a mom is definitely hard at times! Thankfully, my Crohn’s has been under control since Viv was born and I’ve just had a few bad days here and there. Because of COVID-19, my husband has been working from home for the last year. So, on my hard days, he will take Vivian for a few hours to run errands and such so I can rest,” says Megan. “I definitely think it takes a village to raise kids in general, but, even more so, when you have IBD.”

Since becoming a mom, Megan has taken her health more seriously.

“I don’t ever want Viv to say, “Ugh. My mom is sick again.” And I don’t ever want to miss out on her day-to-day life because I’m not feeling well – as unrealistic as that may be! I have been much more intentional about eating foods that make me feel well and give me energy. I also make sure to listen to my body more and I try not to push myself as much as I always have!”

The main IBD-related symptom Megan has struggled with recently is fatigue—the kind of fatigue where you feel like you could sleep for two weeks straight and still wake up tired. 

“I get frustrated with myself, sometimes, because I don’t have the amount of energy other mamas do, but I do my best and I know that’s all I can do.”

The role of faith through IBD and infertility

Megan says she never questioned God’s plans for her life when she was diagnosed with Crohn’s during her teenage years, but infertility made her do so.

“It was, truly, the loneliest and darkest point of my entire life. I had a constant ache in my heart and the sadness I felt was unreal. As one friend after another told me they were pregnant, I felt like I couldn’t breathe. I was so happy for everyone around me, but it did make it that much harder. I felt so left out and so alone. I remember, so clearly, God speaking two things to me during this time: The age 29 and the thought that I wasn’t going to be left out.”

Megan wishes she could go back in time and tell her 26-year-old self what she knows now. 

“I wish I could tell her that everything is going to be okay. I wish I could tell her that 29 is the age she will become a mama to the most perfect baby girl. I wish I could tell her that God has big plans for her family, and he has not forgotten about her, but that His timing is perfect.”

Megan’s advice for IBD mamas in waiting

Megan’s best advice—do not give up. Lean into your spouse because they are not only serving as a caregiver for your IBD, but they are also hurting about the struggle to have a family. If you become an adoptive family, you’ll see that your child is handpicked for you and that the make-up of your family will be knit exactly how it was meant to be.

“We would love to give Viv a sibling, but, at this point, we are just enjoying our girl and soaking up every minute with her! Adoption doesn’t cure infertility – meaning that it is still hard sometimes that we can’t just decide to give Viv a sibling and do so easily! And I will never have a big belly or carry a baby to term. But that’s okay! If God calls us to adopt again, we will do so. We may even go the surrogacy route or Vivi may be an only child. I know, if God wants us to grow our family, it will be made obvious and we will trust Him and follow His lead.”

Megan says she refuses to allow her Crohn’s disease to define her, even though it’s dictated and shaped much of her life journey. Her IBD is the reason she can’t have kids. The reason adoption was laid on her heart at a young age. The reason she’s mom to Vivian Rose. The reason she’s disciplined. The reason she chose her college major. The reason her faith and her marriage are so strong. And the reason she has the perspective and maturity to understand that despite the setbacks and trials placed before her, she still lives a blessed life that she is grateful for.

Connect with Megan on Instagram: @mrsmeggcape

How a physician with Crohn’s in Ethiopia is helping others with IBD cope

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She’s a physician in Ethiopia looking to pave the way for those with IBD. She understands the need because she was diagnosed with Crohn’s in August 2017 at age 22 while she was a fourth-year medical student. After suffering from debilitating symptoms for eight months, she finally received a diagnosis. Dr. Fasika Shimeles Teferra says in her home country and in developing countries, she had always been taught that inflammatory bowel disease was non-existent. She felt isolated and alone as she embarked on her journey with chronic illness. There were no resources. No support. She had no clue where to turn when it came to being understood and knowing how to navigate nutrition.

In her school of medicine, an IBD diagnosis was morbid. She was told if she continued to learn about her illness, she’d die from the stress.

“Despite my medical background, I expected death to be imminent. The breaking point which later turned out to be a turning point for me, was when I was suffering from ovarian cyst torsion, explained Dr. Teferra. “Even though I was in remission at the time, every OBGYN who saw me in the ER refused to operate on me. One doctor refused to operate on me because I’m a “complicated patient with IBD”. He wanted to wait to see if pain meds will help solve it.”

Luckily, one doctor decided to operate on her, but unfortunately, she lost her left fallopian tube and ovary in the process. At age 23, she lost half her chance of being able to conceive a child. Her Crohn’s relapsed a few weeks later and depression set in. (Note: Luckily, she is due with her first child in June!)

“I went to my doctor and told him I was quitting med school (I was 5th year at the time and just starting my medical internship). But what he said changed me forever and made me feel less alone. He told me he was treating multiple IBD cases and that my disease was much more common in Ethiopia than most thought. He also told me Crohn’s was manageable with medication.”

Holding onto new hope

With a renewed sense of hope, Dr. Teferra started advocating for herself and looking for local support groups to connect with others who lived with IBD. The problem—she couldn’t find any! She joined a Facebook group based in the United States and recognized the need for support in Ethiopia.

“I reached out to a couple of gastroenterologists here in Addis and told them I wanted to start a support group in Amharic focusing on sharing experiences, supporting one another. My hope was to help others who were struggling with coping with their diagnosis. I thought sharing my story would make a difference in someone’s life.”

Launching Crohn’s and Colitis Ethiopia to make a difference

After speaking with multiple doctors, Dr. Teferra decided to start an organization that would not only focus on support groups, but also advocacy work for policy makers. The last published data on IBD in Ethiopia dates back to 1990s! She recognized this lapse in research led to major gaps in treatment for IBD patients. This inspired her to launch Crohn’s and Colitis Organization Ethiopia in January 2020. When the COVID-19 pandemic hit in March 2020, it put everything on hold as the world stood at a standstill.

Even though the organization exists, Dr. Teferra is struggling to garner participation in support groups, because sadly the stigma of IBD leaves many in Ethiopia to suffer in silence and shame. She says fellow IBD patients prefer to communicate directly with her, so she has taken it upon herself to meet them and their families to better explain their condition and how to live a full life with it.

“I try and explain to the patient and their family how they can best take care of themselves and how family members can offer compassionate and empathetic support along the way,” said Dr. Teferra. “Many people discontinue their medication the moment they experience a side effect. I’m also passionate about discussing family planning and breastfeeding. Because of my medical background, I am able to give reliable information about IBD and I am able to use my story to guide the narrative.”

Dr. Teferra also has a registered dietitian who serves as a board member for Crohn’s and Colitis Organization Ethiopia. The nutritionist can provide guidance about how to enjoy Ethiopian cuisine and manage diet in the context of cultural foods.

But Dr. Teferra is only one person and can’t address the growing need for support and care. Even though local gastroenterologists have her contact information, and she tries to meet with as many people as possible, as you can imagine, it gets to be a lot.

Bringing IBD to Prime Time in Ethiopia

During an interview about COVID-19 on national television in Ethiopia, Dr. Teferra took it upon herself to also speak about IBD.

“Since it was Primetime, I was able to reach multiple people at once and I was able to send out the message that those with IBD are not alone. I plan to use such platforms to continue to share facts about IBD and that it does exist in Addis. In the meantime, I am working hard to find a researcher who can work on this with us. We cannot challenge policy makers without evidence, and we cannot change the minds of the medical community without research.”

Dr. Teferra says gastroenterologists in Ethiopia can testify that IBD cases are increasing daily. There is lack of medicine, lack of education, and lack of understanding. Many patients struggle to afford medication and choose to discontinue it because of lack of availability.

Overall, Dr. Teferra main mission with Crohn’s and Colitis Organization Ethiopia is to improve the quality of life and health literacy of people living with IBD in Ethiopia and provide the patient community with a better understanding of their condition by empowering them to take charge of their own health.

Connect with Dr. Fasika Shimeles Teferra on Twitter: @DrFasika.

Email: fasikateferramd@gmail.com