Month: November 2021

IBD Motherhood Unplugged: My daughter was diagnosed with Crohn’s as a newborn

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Less than one percent of the world’s population has it. I’m talking about Infantile VEO-IBD, or “Very Early Onset” IBD. What’s that you may wonder? It’s a rare and often fatal subset of Crohn’s disease that impacts children ages two and under. This week we hear from a mom whose daughter Riley was diagnosed with Infantile VEO-IBD as a newborn, she’s now 18 months. During her first year of life, Riley spent 27 weeks in the hospital. Jana Gilkey opens up candidly about what it’s like to be this type of IBD mom, what she wants others to know about her daughter’s patient journey, and how you can best support families with medically complex children.

Clinical characteristics of Infantile IBD are different from those of an adolescent or adult-onset case with features that are more aggressive & rapidly progressive. There is no known treatment plan and no known cure. Much of the treatment and therapies available are considered research and trial based and are not currently approved by the FDA due to the young age of those diagnosed.

Jana says she could tell something was off from the moment Riley was born. At first as an exclusively pumping mama, she thought her daughter had a dairy intolerance, so she cut every common allergen from her diet.

“We saw our first pediatric gastroenterologist when Riley was one month old. As a mom, my intuition was screaming at me that something was terribly wrong. We saw a few different pediatric gastroenterologists and by month two of life, her symptoms had only progressed. By the time she was 3 months old, she was not stable enough to stay home and had completely stopped eating by mouth. What little we could get her to eat, she was unable to keep down. She was diagnosed with failure to thrive and rapidly declining on all accounts.”

Riley was hospitalized for the next three months. Every day brought new symptoms and complications. She had been evaluated for every condition and received her first PICC Line in which she received continuous TPN & Lipids due to not tolerating any kind of substance in her stomach. Riley also received a series of blood, iron, and albumin transfusions. 

Receiving the Infantile VEO-IBD diagnosis

An upper and lower endoscopy revealed lesions throughout Riley’s entire GI Tract. Bingo.

“I began to scour the internet on anything and everything I could find on Infantile VEO-IBD. There was a white board in our hospital room. I wrote down everything I could find on that board. I drew myself diagrams and made notes on doctors to try and connect with. I recorded nearly every second of my daughter’s day those 3 months of our first hospital stay. I ordered books and searched and listened to every podcast I could find on children diagnosed with autoimmune diseases in the first few months of life. I fell asleep most nights watching YouTube videos on nearly every kind topic you can imagine regarding genetics, the immune system, how the body processes monosaccharides, how the brain communicates to the GI tract, and everything else in between I could find to better understand, educate, and advocate for my daughter.”

Like anyone with IBD can relate to—the unpredictability and uniqueness of each person’s experience with IBD makes a diagnosis extremely challenging to cope with.

“While all of my research and studies have been vital to my education and understanding, the very best education (and support) we have received has been from those who also walked a similar journey battling Infantile VEO-IBD.”

How it feels to watch your baby fight a chronic illness

The way Jana describes what it’s like to be a mom watching your child fight an uphill battle against their health had me crying. She explains her experience and perspective so beautifully, yet it’s heart-wrenching to read.

“Most of the time it feels like frantically trying to catch little fireflies that show a glimmer of themselves and then seem to disappear just before jarring them all up. Impossible to fix and yet, aren’t good moms supposed to fix things for their babies? It feels like trying to catch water in the cup of your hands. It just keeps slipping through, no matter how tightly you squeeze. To me, watching my daughter endure such chronic pain and struggle, feels like a constant dance between surrender and war.”

You can feel the pain and the love in her words.

“When Riley was first diagnosed. I was ready to fight, on a mission to find a cure, fly her anywhere, climb the highest mountain, swim to the bottom of the ocean to find that one special pearl that could bring her healing. I believed (and still believe) that the healing remedy for her is out there. However, I have since come to terms that the journey we are on is not a sprint. It is a marathon. I surrender to the things which I cannot control or change. But I will never stop fighting for better. I am willing to run this marathon for the rest of my life so that, Lord willing, my daughter or maybe even those that come after her don’t have to.”

How IBD has “given” to Jana’s family more than it’s taken

Jana says Riley’s disease has changed everything about her outlook on health and her overall perspective on life in general.

“I believe it has given to our family more than it has taken. Riley’s battle with Crohn’s Disease may have robbed us of nearly all of her first year of life on what “could have been.’’ However, it has given us as a family the opportunity to choose what is and what can be. We have been given the opportunity to choose joy during uncertainty and at times chaos.”

Through the pain and tears Jana has realized that we do not own our health but steward it.

Photo cred: Alisha Gilkey

She says, “health is not ours to claim but to honor and look after. While it may at times feel as if I have somehow failed my daughter’s health, this is not true. I have honored it with all it has brought. It was never within my control to begin with. I believe the same is true for others within the chronic illness world. There is a lot of room for grace here.”

A life-threatening setback

Riley recently was unable to absorb any nutrients in her GI tract. She started refusing to take anything by mouth and was provided nutrients intravenously through a catheter in her chest the first 10 months after her initial Infantile VEO-IBD diagnosis. The hope—once the right combination of medications was found to wrangle Riley’s disease under control that a gastrostomy tube (g-tube) could be placed.

“One of the many risks of living life with a central line can be infection of the blood. Riley was at high risk for infections due to the medications she was receiving for treatment in addition to being immunocompromised. Unfortunately, Riley developed a blood infection on three different occasions and one put her body in a state of shock.” 

Jana says thanks to the grace of God, Riley recovered and does not have any known organ damage at this time. The last four months she’s been home and started to tolerate food in her GI tract. She’s completely weaned from being fed through her veins!

Photo cred: Alisha Gilkey

“While we are still searching and longing to find remission for her, she is able to finally have a little more freedom to be the toddler she is. We still have some hard days, but we do feel hopeful we are on the path to remission and will soon see her body heal. Each day that she feels better, we see more of her personality. It is so fun to finally get to know her and see her able to explore more of her world!”

Treating and managing Infantile VEO-IBD

In her 18 months of life, Riley has been on a laundry list of medications and treatments and endured countless procedures and surgeries.

Medications/Treatments

Proton Pump Inhibitors

Liquid, Topical, & Inhaled Corticosteroids

Biologics

Chemotherapy Trails

Glycopeptide Antibiotics

Additional Daily Dietary Supplements

TPN & Lipids

Surgeries: 

Multiple Invasive & Non-Invasive Diagnostic Tests and Scopes

Gastronomy Tube Placement 

Catheter Placements & Removals 

Riley becomes a big sis

This past August Riley became a big sister to Josephine. Since Riley’s health has not been stable enough to travel or be around people because of the pandemic, Jana is FINALLY able to travel back home for the holidays with her family of four. Many of their loved ones met both daughters for the first time this past week at Thanksgiving. Jana says while the lows of Crohn’s disease have been really low, it makes the highs feel that much higher. As she juggles life with a medically challenged child and a healthy child alongside her husband, she’s trying her best to enjoy being a “mom” instead of solely a caretaker.

Photo cred: Alisha Gilkey

“While it is very busy, I will say, that in a way my second born has helped us all to take a breather as a family. It’s helped to remind me that I am their mother still and more than a caretaker to both of them. Up until recently, our life has been about keeping Riley here with us. Thankfully, she is in a much better place, and I can also focus on raising her and her baby sister together! This would all be so much more tough without our wonderful support system we have. My husband is unbelievably helpful in addition to my own mother who has been with us every step of the way in this journey.”

Jana says having tangible support is a huge stress relief. By tangible she means, physical help with chores around the house like doing dishes, the laundry, and even having family members learn how to manage a g-tube so her and her husband can take a nap every now and then.

Photo cred: Alisha Gilkey

“None of it is how I envisioned our life going and it sure isn’t perfect, but I would not trade either of my girls for one second. I believe every child comes to the world at the time they are destined to come. I know they are meant to be here at the time they are and together.”

How IBD has impacted motherhood from a parent perspective

Jana says she no longer looks forward to the expectations she may have had for her children. Instead, she looks forward to watching whatever they choose to paint the canvas in front of them.

“It’s actually so much more exciting to not have expectations, just enjoying what I can from each day with them, and on the edge of my seat to cheer them on in whatever they do. They are God’s children, and it is a great honor and challenge for me to be able to steward them well. I trust He will fight for them and will always be with them even when I can’t.”

The journey over the past 18 months has helped Jana gain a better understanding of fellow moms as well.

“What may be best for one family may not be best for the next and that is something to celebrate really – not be judgmental or weary of. Moms have way too much on their backs to place any judgement. The children we have been given were given to each of us as individuals for a reason and no one else. There is no longer room for guilt or judgement here, just grace and support.”

Best ways to support families with medically complex children

When loved ones and friends go through health hardships, we often want to help in some way. But unbeknownst to us some of the ways we approach the conversations can be off-putting without even realizing it. Jana says knowing so many people (many whom they have never met) are praying for Riley, interested in her journey, and supporting them, has been incredibly overwhelming.

“I met so many truly inspiring families and individuals over the last year and a half since Riley’s diagnosis. Sometimes, it can be exhausting to share our story, as there is so much to explain. But, each time I share, I am reminded that we are not alone in this. That is really a huge encouragement when times have felt isolating.”

Photo cred: Alisha Gilkey

Jana has come to realize that when it comes to health and those walking through a medical journey, that what we may know or what they choose to share about their story is often just the tip of the iceberg to what they are going through.

“Offer grace, not judgement. Offer time, not advice. People genuinely mean it when they say, “Let me know how I can help.” These questions are well meaning but they put the ball in the court of the person who may be enduring rather than the one seeking to support. It’s often difficult to understand what your own needs may be when in seasons of crisis.”

Instead seek to understand. While it feels natural to ask questions like, “Are you/they feeling better?, “How was your day?”, or “What can I do to help?” These types of questions can feel broad and difficult to answer in the world of chronic illness.

Jana recommends asking questions to seek understanding. She says asking the right questions can be helpful for those we want to support.

Here are some examples:

  • Can you tell me about your day today?
  • I spent some time researching the diagnosis you shared with me, and I have a few questions…would you mind if I asked you so I can better understand what it looks like for you?
  • I would like to know more about what the days look like for you. Would you like to share?
  • How does your daughter’s diagnosis and patient journey affect you?

Want to do something spontaneous, without asking? Go for it. Deliver a meal, write a letter, offer your time in a way that does not require a friend who may be in crisis to ask things of you. Pain can often feel like a burden and be very isolating. Having someone ask to better understand and invite themselves into our pain helps to lift that burden – just knowing someone else sees.

Mom, Model, and Ostomate: Seeing Life Through the Lens of IBD

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When she’s not on the runway during Fashion Week or gracing magazines, Keyla is doing all she can to be an advocate for IBD. She was diagnosed with ulcerative colitis eight years ago, but this year, she found out she has Crohn’s disease.

“As a child, I always had intense stomach aches, and difficulty going to the restroom. Sometimes I’d even pass out. Doctors always told me it was constipation. It wasn’t until I was at work one day and passed out that my boss convinced me that I needed additional medical attention.”

At that point, Keyla was having 8-10 bloody bowel movements a day. Prior to ulcerative colitis, she was diagnosed with celiac disease and went on a strict gluten free diet. But unfortunately, the symptoms persisted. She got a second opinion and that’s when she was diagnosed with IBD. Keyla recalls that in the beginning moments of her patient journey she struggled to grasp that chronic illness meant her disease was a “lifelong partner” and that IBD would change her life in unimaginable ways.

The journey to an ileostomy

Fast forward two years after her IBD diagnosis and Keyla rushed to the hospital after noticing unexplained bleeding. Turns out she was hemorrhaging from her uterus and was told she had uterine cancer.

“After having a partial hysterectomy and no longer being able to have children, I’m not sure if it was the stress from everything happening but my UC was never able to be controlled after that. From failed medications like Methotrexate and Remicade to looking like Quasimodo from eye swelling caused by Entyvio and having less hair than a toddler from being on Humira. My body and I had enough. My clinical team and I decided it was time to evict my colon.”

In September 2018, Keyla began her 2-phase j-pouch procedure. Unfortunately, the surgeon discovered her colon was much more diseased than he had thought. Keyla’s colon had become fused to her stomach, resulting in part of her stomach to be removed as well.

“For 2 months I felt amazing with my ostomy and was excited for my reversal in December 2018. But shortly after, I began developing chronic pouchitis, could not gain weight, required IV fluids regularly, with a failed midline and then needed a central line. We decided to disconnect my j-pouch and create my end ileostomy in September 2020.”

All was well until January 2021 when Keyla started bleeding from her ileostomy. It was at this point she was diagnosed with Crohn’s disease and started Stelara. After a few hospital stays and some improvement with her symptoms, she began to experience an increase in rectal pain, urgency, and discomfort, so Keyla needed yet another surgery.

October 27th (less than one month ago!) she had her j-pouch removed with a proctectomy and officially made her stoma permanent. She’s recovering from this surgery as we speak.

How Modeling Came into Play

After reading that challenging medical history, you may wonder how Keyla finds the time to focus on a profession. Modeling is something Keyla always wanted to do when she was younger, but she was too embarrassed to tell anyone. She sort of stumbled into it. Keyla had done a fun photoshoot with a friend and those photos were shown to another friend who works in the fashion industry. Before she knew it, Keyla was a published model!

“Sometimes I still can’t believe I’m living my dream despite having health issues. I had the honor to walk at London Fashion Week this year and have been published in magazines out of the US, UK, and Canada.”

SURREAL Lifestyle Magazine and 4 Seasons Magazine have been her favorite features thus far because the publications have allowed her to speak about her IBD advocacy work. Modeling serves as the perfect platform for spreading awareness to others about ostomies and life with Crohn’s. 

“I always try to take the time for myself and make sure I am doing the things my mental health needs to stay focused and feel well. I also try to own those feelings. If I’m symptomatic, I try to accept it and openly communicate my struggles with others.”

Keyla says having an ileostomy can make modeling a bit more complicated, especially if she has to wear form fitting or tight clothing. If that’s the case, she ends up having to empty her bag more times than she really needs to. She’s grateful her modeling gigs have followed strict COVID guidelines, which helps her feel more at ease during these uncertain times.

When a project allows, she especially enjoys getting to show her ostomy in photos or on the runway. She chalks that up as her biggest career win of all!

A model mother

Keyla’s main focus whether she’s modeling or fighting a flare in the hospital is her family. She has an 11-year-old son who inspires and motivates her to push through the difficult days.

“IBD has made motherhood challenging. Without chronic illness motherhood can be difficult as it is, adding health issues on top of it makes it more complicated. I constantly question whether I’m making the right choices. But I also tell myself all I can do is try and hope that I’m being a good role model for him.”

It pains her to see how her son gets anxious about her IBD and healthcare. He’s been by her side every step of the way since she was diagnosed after he was born. Despite the highs and lows, Keyla feels her son is stronger because of her illness and has an innate sense of empathy and understanding for others.

If her IBD has taught her anything it’s that good days give us happiness and bad days give us experience. Modeling has enabled Keyla to be comfortable in her own skin and live the life she imagined long before Crohn’s was ever a part of who she was.

Connect with Keyla:

Instagram: Keyla.ic

Twitter: @keyla.ic

My thoughts on a colonoscopy pill prep as a first timer

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

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

Thoughts on doing a pill prep

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

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

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

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

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

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

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

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

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

The best news

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

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

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

Moments that helped me get through

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“CDC recommends individuals should get a third vaccine if:

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

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

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

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

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

The reason for this is multifold:

-Antibody tests are not validated.

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

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

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

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

Vaccinated diverse people presenting shoulder

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

Key Reminders as We Head into the Holidays

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

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

What are the studies saying about the IBD Community

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

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

Closing Thoughts

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

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

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

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

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

Additional Resources

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

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

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

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

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

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

Dr. Bewtra: @DrsMeena

Dr. Rubin: @IBDMD

Dr. Kinnucan: @ibdgijami

Dr. Higgins: @ibddoctor

7 Tips for Keeping IBD at Bay on Big Days

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

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

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

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

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

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

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

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

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

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

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

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