Raise your hand if you were told ‘diet doesn’t matter’ when you were diagnosed with IBD? Personally, the dietitian who visited me while I was hospitalized after my initial Crohn’s disease diagnosis in 2005, scared the bejesus out of me. I’ll never forget her sitting by my bedside with a clip board rattling off all the foods I would never be able to eat. Fruits, vegetables, anything raw, fried foods, wheat…the list goes on. I felt incredibly overwhelmed and defeated in that moment. Even though it was nearly 18 years ago, it’s a moment in my patient journey that is still upsetting to think about.
When Brittany Rogers, MS, RDN, CPT was diagnosed with ulcerative colitis in high school after suffering in silence for five years, she was 20 pounds underweight, exhausted, in pain, and experiencing frequent and urgent trips to the bathroom. She was put on medication and given little to no direction in the way of diet. Inspired by a nutrition class she took in high school and coupled with her own experience with trigger foods, Brittany pursued a degree in nutrition and became a registered dietitian. She strongly believes that learning about nutrition in college and applying that information to how she managed her IBD drastically changed the trajectory of her disease and quality of life.
Brittany as a teenager after her ulcerative colitis diagnosis.
The driving force behind Romanwell
Managing diet when you have IBD is complex and dietitians treating people with IBD need to be well versed in the latest research to provide safe and effective care. If you’re lucky enough to live near an IBD center, you may be able to see an IBD dietitian for a few visits through your doctor’s office. However, most people don’t have access to these centers of excellence and need more than one or two appointments per year to come up with a personalized nutrition plan to reduce their symptoms, improve their quality of life, and restore their relationship with food. Brittany’s practice, Romanwell, is tackling this issue head on by making expert IBD dietitians accessible to anyone, no matter where they live or work.
“I started Romanwell to be able to provide an exceptional level of care to people all over the country. I don’t want anyone else to suffer with symptoms the way I did for so long. Nutrition and lifestyle factors, such as stress, play a huge role in the symptoms we experience as patients. Unfortunately, people often don’t get the guidance they need to help them feel better,” said Brittany.
Diet research is quickly evolving and more and more providers are acknowledging the role of diet in managing IBD. However, there’s still a long way to go before GI’s everywhere start to refer patients to IBD dietitians routinely.
“If someone’s provider doesn’t have a referral for them, the Crohn’s and Colitis Foundation has a directory of IBD providers including a number of dietitians that they can search for and reach out to. The American Gastroenterological Association (AGA) is also putting together a directory of dietitians that will make finding a GI-specific dietitian much easier. Patients can also always reach out to me and I am happy to point them in the right direction if our practice can’t meet their needs,” she explained.
The unique support of an IBD dietitian
In an ideal world, patients would get support from an IBD-focused registered dietitian starting the day they’re diagnosed. Examples of where it would be helpful to work with an IBD focused RD include:
At diagnosis, IBD dietitians can help answer questions around what they can eat, talk about the definitions of trigger foods, pro-inflammatory foods, & anti-inflammatory foods, and examples of each. They can talk about foods associated with an increased risk for active disease, foods associated with increasing the risk for colorectal cancer, and what to eat during active disease & in remission.
If someone needs IBD-related surgery, dietitians can help them optimize their nutrition before & after surgery to reduce the risk for postoperative complications.
If they’ve lost weight without trying or have a decreased appetite, they’re at risk for malnutrition and would benefit from working with an IBD focused registered dietitian.
Anytime they’re having symptoms- dietitians can help manipulate their diet to reduce symptoms & improve overall quality of life
If someone want to improve their relationship with food, or have a history or active eating disorder, Romanwell can help them expand their diet, include more cultural foods in their diet, and use non-diet evidence-based approaches to reduce symptoms. Dietitians can also help people work on improving their relationship with food, their body, and their food-related quality of life
And, anytime someone has questions about their diet, or are worried about their nutrient intake, they should have access to an IBD-focused dietitian.
“We offer programs rather than individual sessions in our practice which gives us the time to help our clients make sustainable changes to their diet and lifestyle that will last them a lifetime. We build relationships with our clients, take the time to understand their needs, cultural influences on food, food preferences, and implement 100% personalized programs that work for them in their life. 95% of our clients work with us for 12 sessions, which we typically run over 3-6 months. In the beginning of a client’s program, we deep dive into their medical history, labs, supplements, labs, diet and their relationship with food and their body, and then set goals for the end of the program. We meet weekly or bi-weekly to make progress towards the clients goals, and are available via messaging throughout the client’s program to answer any and every question that comes up in the moments when they arise.”
Those of us in the IBD community know how isolating and upsetting it is when you’re in the middle of a flare. Brittany’s goal is to ensure that every client seen at Romanwell feels seen and understood and realizes that they’re not alone in this.
“I want patients to feel as though they’re our only patient and that they’re not alone in this. We believe all patients deserve that level of responsiveness and empathetic care. We want them to feel and know that we care about them and want the best for them,” she said.
Creating evidence-based research that’s digestible for patients
When Brittany started Romanwell, she noticed that no one was talking about the research around diet and IBD on social media and translating that research and know-how into approachable and actionable content that people could easily learn from and implement in their daily lives. You may hear the term “medical nutrition therapy”—this is evidence-based diet and nutrition treatment for a specific medical condition(s) provided by a registered dietitian.
“I started publishing research summaries and tips on my Instagram pages (@weareromanwell; @brittanyb_therd) and people seem to really resonate with the content. Reading research articles is intimidating! It’s hard enough for someone with a scientific or medical background to stay on top of all the findings, let alone someone from a non-healthcare background. I try to create content that summarizes what we know (and acknowledges what we don’t) from the research and always try to find a way that someone could get immediate actionable value out of the content – be that by tips or recipes or swaps for trigger foods, etc.”
When working with clients, Brittany finds it helpful to know that oftentimes education on diet is insufficient in encouraging behavior change- instead, she’s found is that people also need help applying that information to their life.
“For instance, research suggests Crohn’s disease patients who consume the most fruit and vegetables were actually 40% less likely to flare than those who consume the least. Patients we work with often have already seen a dietitian or have received a handout on what to eat that may include this recommendation of eating lots of fruits and vegetables. And although this is great information to share with Crohn’s disease patients, sometimes it’s not very helpful because they often want to consume more fruits & vegetables, but don’t feel safe doing so because it triggers symptoms, or they’re afraid of causing a blockage,” Brittany said.
When implementing this recommendation with her clients, she shares the study, but then looks at a person’s individual diet, asks them which fruits and vegetables they enjoy, and makes a plan together with the client to slowly add in more servings week by week in a methodical manner, sometimes adjusting the texture or amount of what they are eating.
“By the end of the program, most patients are consuming at or above the recommended fruit and vegetable intake and have a huge list of meal/snack ideas they enjoy and that are tolerated so they feel confident the diet is sustainable.”
Working to improve access for patients
The key to helping as many patients as possible get access to the care they deserve is getting their GI providers to refer patients to IBD dietitians and getting health insurers to cover the cost of those services so that patients can make meaningful and sustainable changes that will benefit them for a lifetime.
“I think there’s enormous potential for providers to help their patients have better outcomes by working closely with IBD dietitians and for health insurers to lower their costs by equipping patients with the tools and resources they need to stay out of the hospital. We’re trying to make this a reality by showing that our clients do in fact have better health outcomes after completing our program. We collaborate with every client’s existing GI care team to make sure the patient is getting the support and guidance they need.”
Romanwell is also measuring their clients’ outcomes and recently presented a poster at the Crohn’s and Colitis Congress showing some preliminary results. They’re hoping to submit the results to a peer-reviewed journal later this year.
“Our goal long term is for every patient with IBD to have access to an IBD registered dietitian and for programs like ours to be covered by insurance so everyone can access them,” said Brittany.
Counseling on the complimentary role of diet and lifestyle alongside medication
There’s a tremendous amount of information out there about the pros/cons of certain medications and/or alternative approaches to treatment that can be really confusing, misleading, and scary when you’ve just been diagnosed with a lifelong chronic condition. Some people worry about the side effects of medication and want to “heal their gut” using diet alone.
“We would never judge people based on the information they’ve read or the opinions they’ve formed about what’s best for their care, but we want them to know the evidence-based information so that they can make the best decision for themselves. We want patients to feel as good as they possibly can for as long as possible, so we love it when patients use nutrition along with medication and lifestyle factors to help them feel their best. We don’t believe it has to be either diet or medication, they work beautifully together!”
Looking to the future
Romanwell recently hired a second dietitian and has plans to hire more this year and next year.
“Our goal is to be able to thoroughly train dietitians in how to deliver exceptional care in a way that really helps patients achieve their goals. Unlike the training one might receive to practice inpatient or outpatient dietetics, our training program includes aspects of health coaching, counseling, motivational interviewing, intuitive eating and a weight-neutral approach to health. Since we’re a telehealth practice, we’re able to see clients on their terms and schedule, but that also means we can hire dietitians anywhere around the country which gives us access to much more talent than we’d be able to find locally.”
Romanwell pays for dietitians to pursue licensure in a number of states, so they can see as many patients as possible.
“I can’t even describe in words how incredibly fulfilling it is to get to help others with IBD. It’s been such an honor to help IBD patients get the care they deserve. I’m so grateful I get to do this for my job!”
It’s considered the most common surgical procedure for ulcerative colitis patients when medication fails to keep IBD under control. The ileal pouch anal-anastomosis (IPAA) or j-pouch, is created after a surgeon removes your colon and rectum and uses the end of your small intestine to form an internal pouch, which looks like the shape of J.
This week on Lights, Camera, Crohn’s we hear from a colorectal surgeon and IBD patient himself, along with several women with j-pouches about their experience, what they’ve learned along the way, and what they hope others know who are living similar realities.
What does the j-pouch procedure entail?
Before we dig deeper, a short “lesson” on what the j-pouch procedure involves. It’s typically a one, two, or three stage process.
According to the Crohn’s and Colitis Foundation:
The first surgery removes your colon and rectum and preserves your anus and anal sphincter muscles. The ileum is made into a j-shaped pouch and connected to the top of your anal canal.
A temporary ileostomy is typically created to give your newly formed pouch a chance to heal. A loop of your small intestine will be pulled through an opening in your abdomen, called a stoma, to allow waste to exit your body into an ostomy bag.
During this time, you will need to always wear an ostomy bag, and it will need to be emptied several times a day.
You will have your second surgery eight to 12 weeks later, once the pouch has healed.
The second surgery will reverse the temporary ileostomy and reconnect your small intestine. Your internal pouch will then collect waste and allow stool to pass through your anus in a bowel movement.
Some surgeons choose to perform this surgery in just one stage, in which the pouch is created and joined to the anus without a temporary ileostomy. This is done less often than the two-stage procedure because of an increased risk of infection.
This topic resonates with Dr. Stefan D. Holubar, MD, MS, FASCRS, FACS, IBD Surgery Section Chief & Director of Research for the Department of Colorectal Surgery at Cleveland Clinic, for many reasons. He was diagnosed with Crohn’s colitis when he was 7 years old and was on and off steroids (the only treatment at the time) for many years.
“I had learned to live with chronic embarrassing urgent incontinence, as well as being small and skinny, and with a swollen face from the steroids. I was offered an end ileostomy as a teenager (not a J-pouch as it was Crohn’s) and was lucky to get a second opinion with the famous Dr. Daniel Present (RIP) at Mount Sinai. I went on NPO and TPN for one year which helped get me into remission and grow about a foot in one year. Somehow, I made it through college and got into medical school, but it turned out I hadn’t had a colonoscopy in about a decade.”
Over Christmas 1999, Dr. Holubar had a colonoscopy and received a call a few days later while he was skiing that he had colon cancer.
“That same day, the tumor swelled from the biopsies, and I developed a large bowel obstruction. I had emergency subtotal colectomy w ileosigmoid anastomosis without an ileostomy. After chemotherapy and completing medical school, I needed the rectum removed (due to risk of rectal cancer) and underwent a modified 2-stage J-pouch without ileostomy one month before surgical residency. I’ve been great ever since, not perfect as I have had some complications over the years, but great, with three kids, the best job and wife in the world.”
During the second half of medical school, Dr. Holubar was considering going into GI or Medical Oncology and learned that colorectal surgery was a specialty.
“Once I learned Colorectal was a specialty and they are the IBD experts, my future path was set in stone. It’s rare to know that you want to be a colorectal surgeon that early in training. I’m blessed to share my successful story and give patients with complicated IBD like me hope every single day of my life. My experiences have also influenced me to do clinical research to try to change care more broadly and ideally, globally. My IBD history is a source of endless inspiration for our innovative work.”
I asked Dr. Holubar what advice he has for patients who are on the fence about getting a J-pouch. His most important advice—is to seek expertise.
“I would recommend looking for surgeons who specialize in IBD. J-pouch surgery is a niche these days (hence “IBD Surgeons”), and your care team should be expert in taking care of the complications that may develop. A majority (>90%) of patients with a pouch would do it again and/or recommend it to a friend or family member.” (Fazio et al., Annals of Surgery, 2013, PMID: 23299522).
Dr. Holubar wants to highlight a couple important points in terms of this article:
Only about 10% of people who are deemed candidates for a pouch choose not to have it, for personal reasons such as work, or lifestyle-related reasons such as lack of access to a toilet for many hours at a time, or those who prefer a one-and-done approach (Holubar, Inflamm Bowel Dis, 2009, PMID: 19266572). We have a new article on this, but it has only been published as an abstract so far (Total Proctocolectomy with End-Ileostomy Versus Ileoanal Pouch for Ulcerative Colitis: Who Doesn’t Pouch, And How Do They Do? Dis Colon Rectum 64;5; Meeting AbstractPOD169)
On the other hand, the overall long-term pouch survival is about 90-95% which is very high (in other words, it works out most of the time, but not always) (Fazio et al., Annals of Surgery, 2013, PMID: 23299522).
In the current digital era, we are blessed to have support groups on social media and active discussions on #SoMe4IBD. That said, it’s important to know that not everyone who has a pouch – whether the experience is great, or they have complications – is vocal on social media. It’s important to check with your care team to discuss the best treatment options for you.
When it comes to the risk and benefits of having a J-pouch, Dr. Holubar says each patient needs to chart out the pros and cons of end ileostomy (or rarely a continence ileostomy aka Kock pouch) vs. IPAA as the risk-benefit profiles are quite different.
“The main benefit is that a patient can maintain transanal defecation and avoid a permanent ileostomy and care of the ileostomy. An added “benefit” of having a pouch is that you can almost always go back to an ileostomy if it doesn’t work, or you are not satisfied with the function. Going back into the belly is of course with some risk of further surgical complications,” he explained.
The j-pouch patient perspective
Jackie was diagnosed with ulcerative colitis in March 2009. She was 24 years old and had been given a multiple sclerosis diagnosis before that. At the time, her care team was concerned a biologic could set off her MS.
“Less than a year after my diagnosis, I was told that I’d run out of medication options and I’d need to have my colon removed and opted to schedule surgery at that time to work towards a j-pouch,” said Jackie.
Getting acclimated to having an ostomy didn’t come easily. She says her biggest obstacle was getting over her own biases.
“I didn’t know anything about ostomies except from what I read online from other patients at the time and the consensus in the online forums was not good. I was nervous, but I learned almost immediately that I felt better, was healthier, and could do more. After my first surgery, I traveled across the country and hiked through some parks in Oregon. None of that would have been possible before my ostomy. It only took a few experiences like that to realize how much the ostomy had really given me.”
Of course, there’s a learning curve. There’s new terminology to learn, you must find what works on your body, and that can be frustrating.
“I was curious from day one. I knew that I was sent home in the appliance the hospital had set me up with, but I wasn’t convinced that was the best one for me, so I took it upon myself to test lots of brands and products to get the one that worked best for me.”
Jasmine was diagnosed with ulcerative colitis in 2017 when she was 19. She was a freshman in college. Two years later she dealt with a flare she started Entyvio, but the drug failed her shortly thereafter. She switched to Remicade in January 2020 and had the same problem, even after receiving the highest possible dosage every 4 weeks. Her health continued to rapidly decline, and she was hospitalized in March 2020.
“This was the first-time surgical intervention, an ostomy, and a j-pouch were mentioned to me in a real way, however, the doctors continued to say they felt cautiously optimistic Remicade would pull me out of my flare. Throughout these months, I tried a variety of diets including SCD and AIP, visited multiple dieticians and nutritionists, met with natural health doctors, sought out second opinions, and followed a robust supplement regime that was continuously updated by my functional health doctor.”
Despite every effort, by April of 2020, her health was the worst it had been her my entire life. Weighing 105 pounds, she lived in constant, excruciating pain, unable to sleep or eat, too weak to stand in the shower for longer than five short minutes.
“IBD completely ruled my life. When I spoke with my doctors in early May, they told me I had two options: I could try Stelara, the last drug available to me, which my team was 99% sure would not work and would result in emergency surgery since the drug takes months to kick in and provide relief. Otherwise, I could have surgery immediately. My options hardly felt like options when both resulted in the same outcome, just at different times. I opted to have surgery sooner rather than later. If it was inevitable, I wanted to begin the process and start feeling better as soon as possible, rather than continuing to needlessly suffer.”
A few days later, Jasmine met with a surgeon, and less than a week after that appointment (and the morning after her college graduation), she was rolled into the operating room to have my colon removed.
“No life experience prepares you to look down and see an internal organ on the outside of your body. A stoma is far outside the lines of normal human experience, and despite all the preparation in the world, your brain can’t fully process what it will be like until it’s happened. I found the transition to be difficult; while the nurses in the hospital were helpful, the nurses sent to my home barely seemed to know what to do. I had to teach myself how to empty the bag, and at first, it often took me an hour to change the ostomy. However, with time and as my body healed from surgery, I became more confident and able to quickly take care of the ostomy in under five minutes,” said Jasmine.
Even though the physical acclimation was challenging, Jasmine says the mental acclimation was even harder.
“At the time, I was 22 years old and had never in a million years imagined my life to involve a bag of waste attached to my stomach. I felt like I was constantly grieving the life I’d imagined and the life I’d never get to live. The ostomy felt like a reminder of all that had been taken from me that I couldn’t ignore, concrete proof of how different I was from all other 22-year-olds and how far my life had diverged from the normal college experience. I spent many days looking in the mirror and crying at what I saw, struggling to accept the ostomy as the life saver it was. Over time, as I began to regain more freedom and control over my life, eating the food I wanted, sleeping through the night, exercising, and traveling, I slowly began to make peace with the ostomy through the lens of all it enabled me to do.”
Aimee was diagnosed with ulcerative colitis in 2011 when she was 22 years old. She struggled responding to medical intervention and dealt with severe abdominal cramping and high levels of blood in her stool which destroyed her quality of life.
“I had to give up my job, my life, my apartment, my social life and moved back to my hometown to be taken care of by my parents. In one hospital admission 9 months after first symptoms, the surgical team advised I do the ostomy to avoid a tear or rupture to the colon which could lead to emergency surgery or worse, sepsis.”
The ostomy relieved Aimee’s constant cramping and she felt instant relief from her chronic pain. Going into surgery the plan from the start was to do a three-step surgical journey over 12 months that resulted in a j-pouch May 2012.
“There is so much help in the hospital that it was only the day I was leaving that it hit me that this was going to be something that would be hard to get used to. I was 22 and I was embarrassed to tell everyone and conscious of my looks, so there was a vanity piece that was hard to overcome. When I was home, I felt alone. I wanted to manage the bag all by myself, I didn’t allow anyone to see the stoma or my bags or anything. Looking back at my young self, I wish I had let my family and friends in more to help me, I didn’t need to hide it.”
Elissa was initially diagnosed with ulcerative colitis when she was 14 years old, back in 1994 and years later, Crohn’s, in her small intestine. Her diagnosis journey was a difficult one. She was told she was lactose intolerant, had food allergies, IBS, anxiety, and a nervous stomach.
When Elissa was 20, she underwent emergency surgery to remove her colon. She was one of the first patients to participate in a clinical trial for Remicade back in the day. Unfortunately, the medications kept failing her, she became dependent on high doses of steroids, and she had precancerous cells in her colon.
“I was in college at the time and didn’t feel comfortable telling most people. There were a few occurrences of my bag leaking (one especially memorable experience in the middle of a fraternity party), and I was mortified. However, my recovery also highlighted the thoughtfulness and generosity of my best friends and family members who would drive me to the pharmacy to pick up medical supplies, drive me to doctor appointments, even just sit with me and rest. People really come out of the woodwork – sometimes asking for help is the hardest part.”
At times Elissa felt very alone. She wishes she had known the Crohn’s and Colitis Foundation was available, along with support groups. She says, now, there are so many amazing resources available for people in recovery, including the forum j-pouch.org.
Dani was diagnosed with ulcerative colitis in 2005, when she was just 8 years old. She was initially managed on oral medication then switched to biologics and went through Remicade, Humira, Xeljanz, Stelara, and Entyvio.
“I always knew that surgery was on the table, and I felt like I was always buying time until a new medication came out. In January of 2021 I became extremely sick and was admitted to the hospital for IV cyclosporin to try to lessen my immune response. I was ok enough to leave the hospital and was feeling ok for about four days out of the hospital and then I started to become sick again. My surgeon came around a few times to check on me and introduce himself. He said, “I just want you to know that I’m not the scary man with a knife.” At that time, I didn’t know he would be my surgeon. When I started to get sick again after leaving the hospital, I knew that surgery was going to be the next step.”
From then on, Dani met with her GI doctor and Colorectal surgeon (who work together), and they scheduled her for a subtotal colectomy a few weeks later. She began the 3-step surgical process in March 2021.
“It was a huge adjustment. I constantly felt my bag and it felt so foreign to me. At the same time, it gave me an independence that I had never had before. My plan was to go through all 3 j-pouch surgeries to have an ostomy for nine months and then have a j-pouch. I felt confident that I could adjust to an ostomy again if necessary and that I wanted to give a j-pouch a try.”
Dani got her take down surgery J-pouch in December 2021.
The hope of reversing from the start
Jackie: “The plan was to reverse, but I did have a major panic moment a few months before I was supposed to have another surgery. A friend of mine who had started his journey to a -j-pouch around the same time I did, was one step ahead of me in his surgical sequence, and he was having some major problems. I figured the ostomy was the devil I know, better stick with what you know, because I was afraid of what the other side looked like. But I knew myself, and I knew I had to at least try for a reversal, otherwise I’d spend the rest of forever wondering how it would have gone.”
Jasmine: “From the start, the colectomy was presented to me as a step toward the larger goal of getting a j-pouch. I went into the first surgery planning to try the j-pouch.”
Elissa: “I knew the ostomy would be temporary, but I really had no idea what to expect as far as recovery was concerned. My doctors and surgeons did not explain any potential complications. I wish I had known more questions to ask.”
For Elissa, a pouch was created at the time of surgery that removed her colon. Three months later, she had reversal surgery during college spring break – unfortunately, the reversal failed, she caught an infection and ended up in the ICU. The ostomy was placed again for her body to recover from an additional open abdominal surgery. She then went on to have a successful reversal in July of 2000.
Making the decision to go for a j-pouch
Jackie: “I knew that I could have chosen to keep my ostomy, but there was a real sense of “why wouldn’t you get a j-pouch” from the medical team. There was an undertone in what they said and did that insinuated the j-pouch was the more ideal situation and that I should clearly want to go that route. At the time, I was still regularly following most professional medical advice and didn’t really question it. But the option to keep the ostomy was never really discussed and it was always assumed I would reverse it.”
Jasmine: “Because I was young, otherwise healthy, and it had been confirmed many times through testing that I had ulcerative colitis, rather than Crohn’s disease, my doctors said I was a great candidate for j-pouch surgery. In general, my surgeon told me that close to 90% of j-pouch surgeries are successful, and I felt confident trying based on my background and the conversations with my medical team. By the time I’d had surgery, I’d only had ulcerative colitis for three years and had been in remission for two of them. The j-pouch felt like the best avenue for a life as close to normal as possible given the circumstances, and at 22, with (hopefully) a lot of life ahead of me, that sense of normality was important to me.”
How it felt leading up to reversal
Jackie: “I kept reading about all the things that could go wrong and it really freaked me out. I knew people personally who had some complications and it made it seem less like a potential statistic and more like a reality. The reality is that more people do well but are not often talking about it online. At that time there weren’t enough stories about people thriving after j-pouch surgery. I knew what life with the ostomy was like and I knew I could do that. Welcoming another major surgery and another major change just seemed really overwhelming.”
Jackie started the process in March 2010. She unfortunately had a few complications along the way which resulted in more surgeries and a longer sequence to the j-pouch, so her takedown occurred in mid-2012.
Jasmine: “I often worried something would go wrong that would prevent me from getting a j-pouch. Everything that could go wrong had gone wrong for me to even end up 22 and colon-less, and it was hard for me to imagine something could go “right.” I felt very distrustful after the variety of promises made to me by my medical team over the past year that never came to fruition and struggled with cynicism about what might happen. Coupled with all the negativity online about life with a j-pouch, I became very apprehensive about something either going wrong with my surgeries or my j-pouch failing.”
Jasmine’s j-pouch was created in December 2020 with a diverting loop ileostomy and was fully connected in February 2021.
Dani:“I had read about ‘butt burn’ and that when you first get a j-pouch you are going to the bathroom frequently, so I was concerned about that. I had just gotten used to being able to go where I wanted and not worry about the bathroom, and I was concerned that I was going to be putting myself back into a position where I was more limited.”
What j-pouch recovery was like
Jackie: “The takedown was one of the easier surgeries to recover from for me because that was the only thing they were doing in that surgery. Sometimes surgeons combine steps that can make certain parts more difficult to recover from, but for me it was just hooking up the plumbing, which had already been healing internally for months. Despite the complications I had that resulted in more surgery, it gave my body more time to heal, which I think is part of why my j-pouch has been so successful. The hardest part was understanding that the j-pouch can take a year or so to settle, which means you may still have some accidents here or there in the beginning. It wasn’t an immediate magical fix, but over time I learned to understand my j-pouch and to predict its behaviors.”
Jasmine: “J-pouch recovery is an exercise in endurance and mental fortitude, but I didn’t find it as terrifying as it seemed from reading online. From the beginning, I felt like I had far more control than I did with ulcerative colitis. There was almost no urgency, and I could take a minute or two to finish what I was doing before going to the bathroom, rather than having to drop everything and run. Although you do go to the bathroom quite often at the start, having that control makes a huge difference. One of the harder parts of recovery is the acidic stool – waste in the small intestine has more stomach acid in it, which usually gets broken down by the colon, however, without a colon, that acid creates burning on the skin. My skin was constantly raw and sore the first few weeks no matter how much butt cream or fluffy toilet paper I used. Sometimes the burning pain was so bad it would wake me up at night, but now, almost two years out, I rarely have butt burn.”
Aimee: “This was the hardest surgery because it was so long and so much handling of my intestines, my bowel lost function, so I vomited for eight days after my surgery. My doctors considered TPN, but luckily peristalsis started again, and I could eat!
Elissa: “Honestly, recovering from surgeries itself wasn’t too bad, especially after years of IBD flares. Getting rid of my colon provided almost immediate relief. I just had to be patient and let my body heal.”
Dani: “The recovery was the easiest in terms of there weren’t new incision spots. I had to get used to seeing my stoma hole as it closed in naturally and I was still very sore. I also was going to the bathroom frequently and wasn’t sleeping through the night for the first few weeks, which was hard. I was frustrated that I felt like I always needed to be near a bathroom, but that feeling was temporary. “
Pros and Cons of life with a j-pouch
Jackie: “Honestly…it has been so good. I have a total rockstar j-pouch. I eat anything I want (popcorn? yes! all the nuts? yes! spicy food? Yes, please!), I can hold my bowels for hours upon hours. I rarely have any urgency and in general have peace of mind that I can live my life, go where I want, and UC no longer can control that. The cons exist, but for me, they’re small. I’ve had pouchitis a few times, which feels like UC again, but it’s treated with antibiotics and then you’re back on your feet! I have accidents at night maybe once a year. I still use the bathroom more often than a person without IBD, but it’s mostly because I choose to for peace of mind. My digestive tract in no way resembles a normal one, it’s different how everything works now, but it’s not a detriment in my life.”
Jasmine: “My j-pouch has given me a level of freedom I never thought I’d experience with IBD. I don’t currently take any medications, and I don’t worry about flaring or failing a medication the way I would with my colon. Although I know there’s always the possibility of needing medication in the future, I’ve been given more freedom and autonomy over my life than I ever thought possible. I eat what I want when I want. I sleep through the night. I sit through meetings and classes without thinking about the bathroom. I go out with friends, travel, and exercise. For me, the j-pouch has brought me closer to my pre-IBD or deep remission self than anything else, and although there are permanent tradeoffs to having such major surgeries, I don’t regret my decision in the slightest. There is an adjustment phase and a new normal, but that new normal has enabled me to integrate IBD my life, rather than having my life completely consumed by my illness.”
Aimee: “I have had fistulae since at the anastomosis, so they have been tricky to manage, but Humira has been wonderful to me, keeping them at bay and giving me energy to live a full life. I also need to have the scar tissue at the anastomosis stretched surgically every 6 months.”
Elissa: “J-pouch life has been amazing! I was in the bathroom 20+ times a day before my surgeries and felt like a shell of a human being. I’m now 42 and have had my j-pouch for 22 years. I can do pretty much anything a “normal” healthy person can do, just need to take occasional extra precautions like electrolyte replenishment or dealing with occasional pouchitis or Crohn’s flares. (My Crohn’s diagnosis came after my j-pouch surgery).”
Dani: “The first few weeks/months with a j-pouch were tough. Your body needs to figure out how to function with a new man-made organ. I was only comfortable laying down for the first few weeks after the surgery. I really hit a turning point when I was able to start taking Imodium and Metamucil. They were helpful for me in the first few months and now I don’t need them. Three months after my final surgery, I had moved out of my house and was starting a new full-time job. So, the initial discomfort and increase in bowel frequency were very temporary!!”
What j-pouchers wish they knew prior to their reversal
Jackie: “I always say its trading a large set of problems for a smaller, more manageable set of problems. UC was awful for me and ended up being life threatening. It was no way to live. My j-pouch has given me my life back, but it’s not a cure. It’s not perfect. I still have some small problems here and there, but it’s all manageable and in no way resembles life before surgery.”
Jasmine: “It’s hard to find information on j-pouches, and I think many of us turn to the internet to learn about what life with one might be like. I personally found the internet to contain a lot of negative information, making me more fearful going into the surgeries than I would have been had I just listened to my surgeon. I would recommend limiting time spent online and trying to connect with individuals who have j-pouches/ostomies through your doctor or the Crohn’s and Colitis Foundation. These resources provide a more accurate peek into life with a j-pouch and can allow you to ask questions and connect with someone who’s been through the same thing. Most people who are healthy aren’t online complaining about their j-pouch, which skews the sample of information accessible to the rest of us. Whenever I started to feel overwhelmed by everything online, I reminded myself of something a nurse once said to me: the internet is a showcase of the best and the worse situations, more often than not, you’ll end up somewhere in-between.”
Aimee: “I was told this would be the end of treatment and medicine which wasn’t the case. As I had Crohn’s, not UC, I had many more hurdles ahead. Also, a new pouch is new so it’s behavior post op, is not your life. Your body adjusts to the pouch and output goes slower as the post-op weeks go by. The j-pouch is an alternative to an ostomy bag, but has to be adjusted to also. It’s different from having your colon. After a few months though, you will have longer periods between toilet runs and sleep through the night. I go 11pm to 6am with no pooping, which is so much better than those few months post-op when I thought oh dear, this is hard!”
Elissa: “When I had my surgeries, I was 20. No doctors discussed potential fertility issues. My daughter was born via IVF 9 years ago, though all additional efforts have failed. This is something I wish I had known about – I always wanted kids and would have frozen my eggs. Obviously, every person is different. Also, I still go to the bathroom 6-7 times a day. This is apparently normal (though again, everyone has different experiences).”
Dani: “I can eat salad for dinner with no problem!”
Advice for ostomates on the fence about going for a j-pouch
Jackie: “If you feel healthy and strong both physically and mentally, I would say, try it. I know it’s more complicated than giving a new restaurant a try, but I knew that I’d always have wondered. I knew on the bad days I would have idolized a life with a j-pouch, and I needed to know that it either would or wouldn’t work. I felt like the worst-case scenario was that my j-pouch would fail, and I’d return to an ostomy, which I already knew I could do, and I liked those odds.”
Jasmine: “I think it’s a personal decision dependent on the history and circumstances of each person’s illness. Going through the j-pouch surgeries means additional time spent in the hospital and recovering, which is worth it for some, but not others. Although I can share my experiences, everyone’s body is different, and you can’t always predict how someone else will respond. I think the best thing to do is find a colorectal surgeon skilled in these procedures and discuss whether they think you’re a viable candidate. Finding a skilled surgeon is the best way to hedge against future problems and increase chances of success. Beyond that, I would advise talking to as many people as possible with a j-pouch and permanent ostomy, to get questions answered and hear the pros and cons of each route. Having this information should help you feel more confident in your decision, and if you’re still undecided, you can always put off the decision until you’re ready.”
Aimee: “Tell them to get support, don’t expect instant results, give yourself time to adjust to yet another way of going to the toilet…reach out to the online community.”
Dani: “I think this is a very personal decision and there is validity to both sides. An important thing for me was to remember that people are more likely to write online if they have a bad outcome rather than a good outcome. Everyone’s instinct is to research things online and at some point, I felt like reading everything (both good and bad) was too overwhelming.”
Post-op expectations with a j-pouch
Like any surgery, recovery takes time and patience. The Crohn’s and Colitis Foundation shares the following on their website:
Some patients may experience an increased number of bowel movements, sometimes up to 12 times per day. This will typically decrease over time.
Some male patients may experience sexual dysfunction as a result of nerve damage.
Some female patients may develop scar tissue that surrounds their ovaries and fallopian tubes, which may lead to infertility.
Both men and women should discuss sexual function with their surgeon and ask when it is safe to resume sexual activity.
Ask your healthcare providers what supplies you may need at home, especially if you have a temporary ileostomy.
Your healthcare team will advise you on how to manage your temporary ostomy and how to keep it clean.
Final Thoughts
Jackie: “This is a weird one, but I had to use brain power the first time I had to poop after my takedown. It had been almost 2 years since I had used my butt, and I had to really think about how to use those muscles again. It was a little funny at the time.”
Jasmine: “In terms of recovery, the most important thing to remember is j-pouch surgery completely alters one of the body’s major systems and adjusting takes significant time. Recovery doesn’t happen overnight, and it can feel frustrating. I tried to give my body some grace and the time it needed to heal, while reminding myself that life with a j-pouch during the first few week’s post-op isn’t indicative of what living with a j-pouch will be like long-term.”
Aimee: “It’s a journey. I have a few good months, a few bad months. Part of me knows that quality of life could be better with an ostomy, but I’m not ready to say goodbye to my pouch yet. I have been unlucky with the scar tissue, but those small procedures are like going to the dentist for me, I’m so used to them.”
Elissa: “Do it! Healing takes time, but you will feel like a new person. Life is too short to be in pain all the time. So many improvements have happened over the past 10-15 years and awareness is absolutely the key. “
Dr. Holubar wants to remind patients, “The J-pouch cannot save your life – it is a lifestyle operation like cosmetic surgery in some way. Overall quality of life is excellent with both a pouch and with a permanent end ileostomy. Finally, we should think of surgery as an excellent “medical” therapy in patients suffering from colitis despite modern medicines. One of my expressions is that a good ileostomy (or pouch) is better than a bad colon, rectum, or anus (and a good ileostomy is better than a bad pouch). The great news is you cannot make a wrong choice.”
Biosimilars. When you hear the word how does it make you feel? Maybe a little skeptical. Maybe a little uncertain. Maybe a little leery. If so, you’re not alone. I’ve been on my current biologic more than 13 years and when I think about having to possibly make a switch in the future it makes me nervous, too. That’s why I called on IBD specialists and gurus Dr. Miguel Regueiro, Professor and Chair of the Digestive Disease and Surgery Institute at the Cleveland Clinic and Dr. Christina Ha, MD, FACG, AGAF, Cedars-Sinai to help educate the patient community and put falsehoods and myths to rest. Biosimilars are here to stay so it’s imperative we get comfortable with the uncomfortable.
What is a biosimilar?
First things first, let’s get the definition out of the way so you know what we’re working with here. Biosimilars are not the generic version of the biologics many of us are accustomed to. A biosimilar is a product, usually a medication, that is formulated in a fashion that is similar to the “reference” product, also known as the “originator” medication. Think Infliximab (Remicade) and Adalimumab (Humira).
I love the way Dr. Ha explained this, “It’s like identical twins sharing the same DNA but having different fingerprints. With biosimilars, dosing, administration, optimization, monitoring, and plan of care is the same, nothing changes except the Infliximab is now Inflixilmab-dyyb, for example.”
How You’re Told You Need to Switch
You may be wondering how this conversation and discussion even starts and how it translates over to the patient experience.
“The physician and patient are contacted by the insurance company indicating that the patient must switch to a biosimilar. This allows for some discussion between the physician and the patient. Although this should be the fashion in which it occurs, I know that this is not always the case and sometimes the notification is last minute or done in a way that leaves little time for education and discussion between the administration of the next dose of biologic and notification by the insurance,” said Dr. Regueiro.
Cost Savings and Access to Patients
I want to preface this by saying the cost savings varies from patient to patient and is largely dependent on a patient’s insurance company or health plan that covers the payment of their medication.
Dr. Regueiro says, “To provide a simple overview, each insurance company/health plan will contract with a pharmaceutical company for a certain medication. Much of this is dependent on getting the best price for the insurance company. A biosimilar is typically cheaper than the original (originator/reference) medication and the insurance company will then list the biosimilar as its preferred biologic for that condition, e.g., Inflectra or Renflexis for Crohn’s disease or ulcerative colitis. This makes the approval of that biosimilar “easier” for the patient and therefore access better. The question of where the savings are realized is another matter. Even cheaper drugs do not translate to savings directly to the patient.”
If you’ve been on a biologic “originator” successfully and are told you suddenly must make the switch, it’s not uncommon. Dr. Regueiro says he has many patients who have found themselves in this position. His advice? Speak to your healthcare team, but also go to trusted resources for education, e.g., the Crohn’s and Colitis Foundation website has some useful information for patients about biosimilars.
Addressing patient hesitancy
It’s no surprise this can be an emotional discussion. I try and envision myself being told that I had to switch after more than 13 years, and I know I would be crying because of the comfort and confidence I have had with my current therapy.
“The idea of switching to a biosimilar is fraught with concern. I typically acknowledge their concern, but then explain the data. There have been many studies that have shown that switching from a biologic to a biosimilar is well tolerated, is equally efficacious, and does not incur any different safety risk. I tell the patient that we technically cannot say that the biosimilar is the “same” as the biologic, but in essence it is. I also explain that I have had hundreds of my own patients switch and I have not seen a problem. In fact, in some patients I may get a drug level of the biologic before switching and then the same drug level of the biosimilar after switching and see no difference,” explained Dr. Regueiro.
For example, there is a blood assay for Remicade (Infliximab) that measures the Infliximab level and antibodies to Infliximab. When Dr. Regueiro has had patients switch from Remicade to a biosimilar, e.g., Renflexis or Inflectra, and then measure the same exact drug assay, the results of the Infliximab level and antibodies to Infliximab are the same. The biosimilar works in an identical fashion to the original biologic, and the blood assays show the same results. The body “cannot tell” the original biologic from the biosimilar.
Let’s read that sentence again. The body “cannot tell” the original biologic from the biosimilar.
Dr. Hasays, “The key here is to understand that you are being switched to an equivalent not inferior agent. Biosimilars are rigorously studied for safety, effectiveness, antibody formation with a lengthier, more involved FDA approval process than generics.”
Why Biosimilars are NOT generics
A generic medication has the same active ingredient as the brand name medication. An example would be the generic medication mesalamine for the brand name medication Asacol. Asacol’s “active ingredient” is mesalamine and the generic is simply formulated as mesalamine. The “packaging” of Asacol makes it Asacol, but its active ingredient is mesalamine and is identical to the generic formulation of mesalamine.
Dr. Ha explains why biosimilars are not generics.
“Generics are chemical compounds where exact replicas of the active ingredient are possible. However, biosimilars are biologic agents, complex protein structures constructed from living cells. Exact replicas aren’t possible but nearly identical structures can be manufactured – remember, these are very sensitive compounds. That’s why these medications need to be refrigerated and handled differently than a generic.”
I asked Dr. Reguiero if there’s ever a situation where he advises against a patient being switched to a biosimilar. He said generally, no.
“The only main question will be if a patient has already been on a biosimilar after the originator biologic and then needs to switch to another biosimilar. This would be a “multiple switch” rather than a single switch from the original biologic to biosimilar. Based on the limited data to date, and similarity between all of the biosimilars and original biologic, I do not even see this as a problem, but we need more research to make a final conclusion onto multiple switches.”
“Delaying treatment to stay on a version of a medication that really is not meaningfully different than the biosimilar may lead to far worse consequences than staying on schedule by switching to a biosimilar. Remember, delaying anti-TNF schedules may increase risks of antibody formation, infusion/injection reactions, and flares. I am far more concerned about staying on schedule and not missing doses than I am the biosimilar vs reference,” said Dr. Ha.
What if a biosimilar fails?
If a biosimilar fails, Dr. Regueiro looks at it the exact same way as if an original biologic fails. For example, let’s take the case of biosimilar Inflectra for Remicade.
“If a patient is started on Inflectra as their first biologic ever and it stops working, I generally check blood levels to determine if the patient has developed antibodies to Inflectra and that this is the reason for failure. If they have developed antibodies, and the Inflectra has worked well for a long time, then I would switch to another anti-TNF, but not another biosimilar to Remicade. The reason for this is that if a patient develops antibodies to the biosimilar, they will form antibodies to the original biologic or another biosimilar of that same biologic. However, I would switch this patient from Inflectra to Adalimumab (Humira) or one of the other anti-TNFs if needed. I would do the exact same thing if the first biologic I used was Remicade and it failed due to antibody formation.”
I went on to ask Dr. Regueiro when he would switch a patient to a biologic medication from a “different class.”
“Let’s take the example of Inflectra or Remicade. If a patient is started on Infectra or Remicade and they have no response from the beginning, and their drug levels of Inflectra or Remicade are good (and they have not had antibodies again) this means it should be working and it is not – this is a primary failure of that medication. In that case, not only would I not switch to another biosimilar or back to the original biologic, but I would also completely switch away from the class of anti-TNF, e.g., Humira, Cimzia, Simponi, as the patient is likely a non-responder to all anti-TNFs. In this case, I’d move onto something like Entyvio, Stelara, Xeljanz, or Zeposia (depending on whether it’s ulcerative colitis or Crohn’s disease).”
What’s coming down the pipeline for patients?
With all the biosimilars on the market and many more on the way—Dr. Regueiro and Dr. Ha say it’s quite likely all patients can expect to be switched off their current biologic at some point as insurance companies are able to get the biosimilar as a cheaper cost.
As far as savings programs, many of us are accustomed to with our biologics (I pay $5 a month for two injections), this would be dependent on what the company that makes the biosimilars offers and may look quite different to the originator biologic’s savings programs. However, I would anticipate the patient would not pay more for the biosimilar. There would either be a cost savings program with the pharmaceutical company that makes the biosimilar, or, more likely, the insurance company would keep the out of pocket cost the same for the patient.
Biosimilars are administered in an identical fashion to the originator biologic. So, you won’t be forced to go from doing a self-injection to getting an infusion. I asked Dr. Reguiero about Humira’s biosimilar in the future, and he anticipates that it will be citrate-free, just as the originator is now in the States.
Pediatrics and Biosimilars
As biosimilars come to market, the indications should be the same for the originator biologic. That is, if there is an approved indication in pediatrics for the originator biologic, the same should be true for the biosimilar. However, the FDA will make final guidance on the indications for a biosimilar and they could vary slightly on which diseases are approved and which age of patient approved.
What Patients Have to Say
Christina received a letter from her insurance company in June letting her know that Remicade was no longer approved and that she would be switching over to Inflectra in July. The insurance company reached out to her directly and had not informed her GI. She was five months pregnant and was stressed and anxious about switching medications in the middle of pregnancy.
“I have been on Remicade since September 2013 and it’s working really well for me. My GI was super supportive with my desire to stay on Remicade through pregnancy and agreed that I should not switch medications. In part of the letter for my insurance company there was an appeal process, which my GI did on my behalf. A few weeks later I got a letter in the mail from my insurance company that my appeal was denied. I contacted my G.I.’s office and she had someone in her office do a follow up appeal. The insurance company finally agreed to approve me for Remicade through my due date, October 23rd.”
Christina’s baby was born October 11th, so she’ll be making the switch this week while she’s postpartum.
Vern lives in Canada and the government there forced him to make the switch.
“The cost is partially covered by the government. I was pissed to say the least. They kept telling me it was safe, but I wanted to see evidence it was safe to switch to a biosimilar after someone had been on a biologic long term. I never got an answer. Luckily, I’m doing fine, and I have not noticed a difference.”
Lizzy highlights the emotional struggle biosimilars burden patients with.
“Even though I don’t see an uptick in symptoms and my remissions has been maintained, emotionally the switch was really difficult. My insurance forced me to switch. I was extremely sick for a long time before starting Remicade while I was hospitalized. So, I was really afraid of the switch making me sick and of course it was horrible not to have a choice in my healthcare.”
Kelly attests to the emotional struggle and disappointment. She says she spoke extensively with her GI prior to making the switch and did her on own research.
“When I received the letter from my health insurance company telling me I would be forced to switch to a biosimilar I was disappointed. I had been on Remicade for more than two years and it had only recently put me into remission. But I knew the switch was coming, having heard from many people in the IBD community that they were being forced as well. I had already done research on the data from Europe and Canada showing that biosimilars of Infliximab had the same efficacy and safety profiles as Infliximab.
She’s now had two Inflectra infusions and hasn’t noticed any difference in the way her body handles the medication. Kelly is crossing her fingers for a continued great experience and hopefully no more frustrating insurance shenanigans.
Madelynn was on Remicade prior to being switched to Inflectra. Unfortunately, her care team and her insurance failed to communicate the change to her. She shockingly discovered the switch was made after proactively reading medicine notes on the patient portal.
“I was nervous about it, and a bit upset. Who wouldn’t be after being in remission with a medicine then having it randomly changed? I ended up researching quite a bit about it, which helped calm my nerves. I also asked more questions of my medical team. I was worried about the biosimilar not working and causing a flare and of possible side effects. Keep in mind, I have Remicade induced side effects already. Could Inflectra make them worse? When a medicine keeps you in remission, that is something you want to hold onto for as long as you can. If you are taking any medicine, never be afraid to ask questions, research, and advocate for yourself. If something does not work, speak up!”
Madelynn has only received one infusion of Inflectra, but so far, she feels well and notices no changes with her IBD.
A Word from the Crohn’s and Colitis Foundation
Laura Wingate, Executive Vice President of Education, Support, & Advocacy for the Crohn’s & Colitis Foundation encourages patients to learn as much as thy can about not just biosimilars but all treatment options available so we can be active and informed partners in making decisions with our healthcare teams.
“If you are informed you need to switch from a biologic to a biosimilar, you might be worried and that’s normal. But remember that biosimilars are just as safe and effective as your original therapy. Don’t be afraid to ask questions of your healthcare providers about the switch and why it’s happening and share any concerns you have with them. You can also contact the Crohn’s & Colitis Foundation for additional information, education on biosimilars, and support.”
Helpful Resources on Biosimilars
If you have questions about biosimilars– talk to your health care team. The more education, resources, and support they can provide you with to bolster your confidence that the biosimilars are an important part of IBD treatment, the better. I know personally as someone who depends on a biologic to maintain my remission, that doing the research for this article has made me feel a lot more confident and comfortable about biosimilars and what they mean for the patient community.
There are a several great resources about biosimilars to check out:
When you live with chronic illness, you experience a wide range of emotions and personal experiences that shape you. Life can feel like an uncertain rollercoaster ride, you never know when the next twist or turn is going to happen. This week on Lights, Camera, Crohn’s, 21-year-old Parsa Iranmahboub, candidly shares the mental health burden that IBD brings upon a patient. Diagnosed with Crohn’s when he was only eight years old, Parsa shares the perspective of what it’s like to be a pediatric patient who has grown into adulthood. He’s currently a student at UCLA and the Education Chair for the Crohn’s and Colitis Foundation’s National Council of College Students.
Parsa explains the psychosocial component of life with Crohn’s disease and ulcerative colitis by breaking it down to anxiety, embarrassment, guilt, and loneliness. He recently spoke about this at the Crohn’s and Colitis Congress as well as on IBD Patient Insider and his powerful words resonated with me and I know they will with you, too. Here’s Parsa’s breakdown of the IBD patient experience:
Anxiety: Being a bathroom disease, there is often the anxiety of whether a patient has easy accessibility to a restroom when they are out. But there can also be anxiety related to a patient’s diet. When I was younger, I was placed on a low sodium diet due to one of my medications. If I wanted to eat out with family or friends, there would be this anxiety of whether I could even eat anything from the restaurant. There’s also the anxiety that stems from extra-intestinal manifestations. I have a history of developing fistulas. And during my sophomore year of college, my labs were not looking too good, I was flaring a little bit, and I began to worry if this meant I would develop another fistula. I began to wonder how I would deal with a fistula as a college student. How would another flare up affect my grades and my ability to get my work done? I lived in a communal style dorm, so how would a sitz bath even work? Essentially, with anxiety there can be this fear of the disease taking over my life and how can I constantly accommodate it.
Embarrassment: Embarrassment can arise in numerous forms. For one, there’s the poo taboo. But there can also be embarrassment from when you are flaring. From when you are losing weight, when you no longer look healthy, when you now look “sick.” There are the side effects from medications. From when you begin to gain weight, develop acne, and now have that dreaded moon face. Let’s not forget the impact of extra-intestinal manifestations. In 6th grade, I had surgery for a perianal fistula. After the surgery, I had to wear tighty whities with a maxi pad to help absorb the pus. It would be an understatement to describe how much I began to despise physical education. Not because I had to exercise and run around. No, I was always too active of a kid to hate PE. But because we had to change into our uniforms during the beginning of class. And I was embarrassed to be in the locker room. I was embarrassed that everyone else would look cool with their boxers, but here I was with my tighty whities and a maxi pad. And it might sound ridiculous, almost like a scene taken from the “Diary of the Wimpy Kid”, but to my sixth-grade self, looking cool and being like everyone else mattered.
Guilt: There is often the guilt of feeling like a burden for others. That others have to not only be flexible with you but that they need to make accommodations because of you. “Oh, you all want to go hiking, well I can’t because there’s no accessible bathroom.” “Oh, you all want to eat at this place, actually can we go somewhere else where I can better tolerate the food?” There can even be instances where you feel guilt for believing that you no longer are a good friend. That since you have to refuse to hang out with friends because of fatigue or pain, your friends probably think you simply don’t enjoy hanging out with them. But there can also be guilt from a non-compliant label. When I was younger, I would receive weekly injections. Soon, I began to throw up after every injection. My doctor switched me to the pill version, but it would still make me feel incredibly nauseous. So much so, that I would refuse to touch the pills. Instead, I would take the pill container, open the lid, slowly pour the pills into the lid, pour too many, attempt to pour the extra pills from the lid back to the container, and once again pour too many pills back. It was a whole process. But I simply refused to touch the pills.
Well, it shouldn’t be a surprise that eventually I became non-compliant. Consequently, I switched medications and soon developed acute pancreatitis. At the onset of my symptoms, I was out of the house and had to call my dad to pick me up because I was continuing to throw up blood. And in the car, I told him “Dad, I think I’m going to die.” Thankfully, it was an over exaggeration. But at that moment, it wasn’t.
Parsa with his parents.
Now that I reflect on the moment, not only do I feel guilty for putting myself through that situation, but for also putting my family through that. I can’t imagine being a father and hearing your son tell you those words. And all of this happened because I couldn’t get myself to take those stupid pills. So, not only was I labeled as a non-compliant patient, a patient who was too immature to take his medications, but I was now also a patient who had “hurt” his family.
Loneliness: IBD is an invisible disease. You might look at a person and not realize they are living with a chronic illness. The invisibility is both the disease’s blessing and curse. There have been so many instances where I’ve been happy to have the ability to put on a mask and pretend that everything is okay. That my friends and peers do not have to associate me with a “disease,” a connotation that I despise so much that I often introduce my chronic illness as Crohn’s and not Crohn’s disease. However, because of the invisibility, the disease can feel extremely isolating. You might not know anyone else who can relate to your experiences/feelings. In fact, despite being diagnosed at a young age, for almost a decade I refused to share my story with friends and those close to me. It wasn’t until I met an IBD patient for the first time who was my age that I began to realize the importance of a shared community.
Dr. Tiffany Taft , PsyD, MIS, a Research Assistant Professor at Northwestern University Feinberg School of Medicine, spoke alongside Parsa during that Crohn’s and Colitis panel about Mental Health as it relates to IBD. As a Crohn’s patient of 19 years herself, she offers a unique perspective for her patients. I asked her when an IBD patient expresses these feelings of anxiety, embarrassment, guilt, and loneliness how she helps people deal with the struggles.
“The first thing I do is simply listen and reflect to the person my understanding without advice or judgement. It’s important to let someone tell their story before interjecting with any sort of interpretation or the like. Then, I start with some education about how our thoughts affect how we feel and how we behave. And that these thoughts are often on autopilot or may feel like they’re on an infinite loop and impossible to turn off,” explained Dr. Taft. “My goal is to help the patient understand their thinking and learn to slow it down and take a step back from their thoughts to be able to evaluate them, and maybe either change them or not let them have as much power.”
She went on to say that from there her and her patients tie their thoughts into other symptoms like anxiety, shame, or guilt, to see patterns and opportunities for change.
“It’s not an easy process, but most people can succeed. Loneliness has been harder during the pandemic. Social distancing has created a lot of isolation without an easy solution. I encourage staying connected via video chat, texting, and social media (so long as it’s not stressful!) People say that online interactions aren’t as fulfilling, and that’s probably true. But if I shift my thoughts from this negative lens to a more positive perspective, then it can help offset some of that loneliness until we can all be together again.”
The Decision to Open Up
It takes time and patience for many of us to come to terms with our diagnosis and decide how we want to present our experience to the world. For both Parsa and me, it took us a decade to take off our proverbial masks and share our reality with those around us. Parsa says he decided to share his patient journey at the end of freshman year of college after he joined a research lab at the UCLA Center for Inflammatory Bowel Diseases. He met someone for the first time who was his age and had IBD.
“When I was talking with her, this sort of light bulb just sparked. I realized I could connect with this person in a way I couldn’t have connected with anyone else before. She truly understood the challenges I was facing or had faced. Not from a scientific or “oh, I see” perspective, but from a “oh, I know cause you’re not alone” perspective. This connection was essentially my first exposure to the IBD community, and slowly, I began to become more involved in the community.”
The Power of Connecting with the IBD Community
Parsa went from forming his first spin4 team to joining the National Council of College Leaders to becoming more involved with his local chapter in California. He then started a local support network for college students on the UCLA campus. His advice for patients and caregivers—find a support network within the IBD community.
Foundation of National Council of College Leaders (NCCL)—this group of college students from across the United States volunteers with the Foundation to provide a distinct voice for young adults with IBD. Members also connect on how IBD affects them as students, athletes, and partners in a relationship, the intersectionality that stems from a patient’s identity, and tips for having an ostomy bag, reducing stress through coping mechanisms, and applying for accommodations at school.
Parsa also co-founded IBDetermined at UCLA, a student organization geared towards providing a support network and advocacy-centered space for UCLA students with IBD.
“Even though there are some amazing national and local support groups, we noticed that there was a gap for local resources that focused specifically on the intersection between being a college student and an IBD patient. Hence, we wanted to create that more local space, where individuals could address their specific questions/concerns/thoughts relating to being an IBD college student at UCLA. It’s a space where our members can learn about accommodations that are available through our university’s Center for Accessible Education, can exchange tips and advice for navigating schoolwork and college life with IBD, can express their frustrations about the disease or the lack of university resources, and can share where the best and cleanest bathrooms are located on campus.”
Parsa says growing up with Crohn’s made him responsible at a young age. He learned about resilience. He learned to embrace the obstacles he has hurdled and to keep on pushing through even when he couldn’t immediately see the light at the end of the tunnel. Parsa says he learned to appreciate the time he felt healthy enough to live life not controlled by a chronic illness. Through the years he’s realized you can still be fortunate through a misfortune. This belief has given him a strong appreciation to make the most of the opportunities that come his way and refuse to take the easy way out.
Calling all IBD patients and caretakers, the IBD Insider Patient Education Program is this Saturday (January 30) at 11 am CT. The virtual symposium will include IBD clinicians along with patient moderators. I’m excited to share I am one of three patients who will be speaking and sharing my experience during the live event.
The discussion will include updates from the Crohn’s and Colitis Congress, and we’ll talk about the following topics:
Getting the most out of your healthcare visit
Future therapies in IBD
Holistic Approach to IBD Care
Management of IBD Care during the COVID-19 pandemic
I’ll be teaming up with Dr. Brigid Boland, MD, Assistant Professor of Medicine, University of California, San Diego to talk about the future treatment of IBD. As someone who was diagnosed with Crohn’s nearly 16 years ago, it’s been extremely comforting to see how many therapies have become available since 2005 and all that is on the horizon. Below is a chart that was shared during the Crohn’s and Colitis Congress that shows all the therapies currently in research and clinical trials. When I started my biologic in 2008, I had two options. With each year that passes, we get closer to a cure and get more and more options to manage our disease if our current therapies fail us.
“I love the idea of designing a program with patient advocates where we are communicating to patients and their families about the latest breakthroughs in research and patient care. There’s never enough time in visits to talk about all the research going on that will impact their care now and in the future. Ultimately, all the research and future therapies that are being studied are ways to improve patients quality of life and provide a lot of hope for everyone affected by IBD (patients, caregivers and providers),” said Dr. Boland.
As people living with a disease for which there is no cure, it’s in our best interest to stay up to date on all the latest happenings and developments. IBD can feel like a beast of a disease to be up against day after day. When you participate in learning opportunities like this that are right at the touch of your fingertips you empower yourself as you make decisions and grow through your patient journey. It’s like the education saying, “The More You Know.” As you make decisions about how you manage your Crohn’s and ulcerative colitis, as you take on flares from a hospital bed, as you navigate life milestones like career and family planning, having resources like this in your arsenal of knowledge will only help you advocate for yourself and collaborate with your care team.
It’s not too late to register! Click here to sign up and can’t wait to “see” you Saturday!
He’s not your typical IBD advocate. He doesn’t have Crohn’s or ulcerative colitis himself, but he’s extremely passionate about supporting the patient community, spreading awareness, and making a difference. John Peters’ wife, Katherine, was diagnosed with Crohn’s when she was 12. John met her when she was 21. They dated 4 years and just got married in April. As they dated and got to know one another, he had a front row seat to the challenges IBD brings about in a person’s life. Ironically, John’s brother, Bobby, was diagnosed with ulcerative colitis this past year.
John and his brother, Bobby
Connecting with the Crohn’s & Colitis Foundation
When John met Katherine, he remembers how she was a volunteer at Camp Oasis.
“I remember her coming back from camp and telling me what a rewarding and inspirational experience it was. I signed up the next year because I wanted to learn more about Katherine’s illness, while contributing to a good cause. As I reflect on my experience at Camp Oasis now, I feel like it enabled me to develop a deeper appreciation for the courage those with IBD bestow.”
John sees volunteering as a win-win, not only does it give him an inside look at IBD, but also allows him and his wife to spend quality time together. Out of all the volunteering he’s participated in, Camp Oasis takes the cake.
“The campers love sharing stores about IBD, and every camper feels connected to everyone around them. They don’t need to feel embarrassed because everyone at Camp understands first-hand (or through loved ones) the challenges that having IBD brings. It’s a pretty amazing atmosphere to be a part of and the experience has given me a different level of empathy for those who live with Crohn’s and ulcerative colitis.”
From Camp Oasis to Day on the Hill
Day on the Hill is the Crohn’s & Colitis Foundation’s annual two-day event, where volunteers from across the nation meet in Washington, DC to talk with their legislators about policies that directly impact the IBD community.
Because of COVID-19, last year, the Foundation took Day on the Hill virtual, hosting virtual advocacy trainings and organizing conference calls with Members of Congress, their staff, and Foundation volunteers. Plans for 2021 have not been announced yet.
“Day on the Hill has been my most educational experience with Crohn’s and Colitis Foundation so far. I was unaware of what legislative action could do or how much it can affect an IBD patient. My mission is to inform as many people as possible about what legislation can help IBD patients and how to advocate for it. The more people who advocate, the greater the chance for change,” says John.
John with his wife, Katherine, at the Capitol for Day on the Hill
There are two main bills volunteers have been focusing on:
Safe Step Act—This bill would reform the practice of step therapy, which requires patients to try “insurer-preferred” medications before a more ideal medication recommended by the physician. The hope is to create a more transparent and expeditious appeals process.
Medical Nutrition Equity Act—Insurance companies and other healthcare programs would be required to cover necessary foods prescribed by the physician.
John says Day on the Hill is truly a one-of-a-kind experience. He recommends anyone who may be interested to take the leap and apply to participate.
“Our day was mostly speaking with Congress members’ staff and explaining what we are petitioning for (see the bills above). I was on a team of five volunteers and each one had a chance to share how the proposed legislation affects their daily lives. It was incredible to see how just one bill in Congress can have resonating effects on so many people.”
John’s advice—to contact your local congressional representatives and discuss these bills. Click here to find out who your local representatives are. Every single person who advocates for these bills gets us one step closer to getting them passed in Congress.
Taking Public Policy Advocacy a step further
As John juggles being a full-time medical student, a newlywed, and navigating the pandemic, he’s decided to create Facebook and Instagram groups solely dedicated to educating our community about IBD legislation.
He recently launched the following social media pages:
Facebook: Crohn’s and Colitis Legislative Advocacy
Instagram: @ccla_ig
Give the pages a follow and stay up to date on all the latest IBD political news. It’s important to note John created these social media pages on his own and they are not affiliated with the Crohn’s & Colitis Foundation.
Advocacy doesn’t happen only during Day on the Hill, it’s important to join the Foundation’s Advocacy Network to receive alerts around times of action. You can do so by visiting here.
Since the start of the pandemic, healthcare workers have carried the heaviest burden. Especially those who are immunocompromised while working in harm’s way. This week on Lights, Camera, Crohn’s you’ll hear from three healthcare workers with IBD who are immunocompromised and have received their first vaccine. It’s my hope that by hearing from these warriors firsthand that you’ll gain a sense of comfort, understanding, and perspective while also understanding the importance of debunking medical misinformation. Our IBD community is delicate and requires more expertise than simply listening to a family member or friend who “read something on the internet” or someone who has a cousin with Crohn’s (or now COVID).
Wearing several hats—IBD Mom and Relief Charge RN in COVID Unit
When Shermel Edwards-Maddox of Houston was diagnosed with Crohn’s disease in 2007 at age 24, little did she know that she’d one day lead the charge in a medical unit in the thick of a pandemic, while having two kids and a husband at home, while being on a biologic.
“It has been both physically, mentally, and emotionally draining. I imagine that every healthcare worker has been afraid however being immunocompromised has added an extra layer of fear. The emotional and mental exhaustion comes from the constant worry of “what if today is the day I catch COVID”? Every time I step onto the nursing unit, I’m aware that I could contract the virus. It’s very reminiscent of IBD and the worry of whether a flare is starting.”
Like many other healthcare workers (and the general population for that matter!), she says the roll out of the vaccine provided her with a sense of relief, but also an understanding about the importance of educating the public about the importance of getting vaccinated. As a nurse, she has a solid understanding of how clinical trials work and knows that more than 70,000 people received the vaccine between the Pfizer and Moderna trials. She was especially excited to receive the vaccine after it was found to be 95% effective. Shermel feels blessed to receive “0.3ml of hope” in a syringe and says many in her shoes feel like they just received their “second wind” after months of being beyond exhausted.
“It was quite emotional. I shed several tears in the days leading up to the vaccine. Those tears were in amazement of how grateful I am to be getting a vaccine that could spare me from this horrible virus that takes the lives of so many. When it came time for getting the vaccine, I felt pure excitement!”
Shermel’s only side effect she experienced was a sore arm, which is expected with any type of vaccine.
The COVID vaccine allows Shermel to not only protect herself but her husband, children, patients, and the community. It makes her feel hopeful to know her daughter will get to see her kindergarten teacher’s face without a mask and that her son will be able to attend his school graduation, free of social distancing.
From an Ostomy Reversal in March to working as a clinical researcher
Caroline Perry also happens to live in Houston and after battling Crohn’s since the age of eight in 2000, she had an elective ostomy reversal surgery March 4th just as the pandemic was unfolding in the States. She takes Entyvio AND Stelara and says that even though she’s on two biologics, her physician had explained to her that both drugs have a relatively good safety profile. While she wasn’t overly nervous about contracting the virus more than the next person, she has been nervous about how her body would react to it.
As a clinical researcher, her boss, happens to be her gastroenterologist. Having her care team readily available and working alongside people she knows and trusts on both a personal and professional level has helped her cope through the pandemic immensely.
Prior to receiving the vaccine in December (2020), Caroline admits she had some initial concerns and brought them up to her doctor, which is what she recommends everyone does.
“Many people are getting all their information from the internet or by word of mouth and are neglecting to listen to our experts—some even mistrusting them. My doctor gave me lots of evidence on why she believes the vaccine is safe and debunked a lot of my fears, which I found out were fairly common questions or misconceptions regarding the vaccine. I got the information I needed to make an informed decision, and once I had all the information, I was no longer worried about getting the vaccine! I am much more concerned about getting COVID than any potential side effect of its vaccine.”
Caroline says she was so excited to receive the vaccine, not only for herself, but for all the healthcare workers that were in the room with her.
“Sitting in that chair, it hit me. I was really experiencing a significant piece of history and I will never forget the feeling of palpable relief in that room. As healthcare workers, we have heard nothing but bad news for so long, and the vaccine is a beacon and glimmer of hope, at the end of a very long tunnel.”
Due to the pandemic, Caroline and her fiancé canceled their wedding for the time being, but finally feel like they can breathe a sigh of relief. Her fiancé won’t be eligible to receive the vaccine until the last round is available, so until then, she says they will continue to practice COVID precautions and keep up to date with the latest data surrounding the vaccine.
After receiving the vaccine, Caroline still received her Entyvio that afternoon! Her only side effect, like Shermel, a sore arm. As of now, she’s working on COVID research in addition to her usual IBD research. Caroline says this past week was her first time working in the COVID ICU for a new clinical trial, and she felt a lot safer thanks to having the first vaccine.
Juggling Women’s Health while being a mom of 3
Janice Eisleben, a Women’s Health Nurse Practitioner in St. Louis, was diagnosed with Crohn’s in October 2017 while pregnant with her third child. She was initially on Humira, but started Stelara a year ago. Janice happens to work at the OB office I go to, so I know her personally and have experienced her amazing care through my own pregnancies. We connected immediately once we both discovered years ago that we were IBD moms on biologics.
She recalls how scary the onset of the pandemic was, between the limited information and the looming unknown. As a patient with IBD, on a biologic, she wasn’t sure what that ultimately meant for her well-being. When she found out the vaccine was going to start being available to healthcare workers, Janice says she was elated.
“I feel like the vaccine finally offers some level of comfort to healthcare workers who have literally been giving everything they have to take care of patients. And this is not limited to nurses and doctors! The hospital cannot run without the respiratory therapists, housekeepers, and maintenance staff—these people are truly the unsung heroes of this pandemic.”
Janice said she did not have concerns or worries about the vaccine because she had been following the clinical trials from the early stages. She says the energy she felt just standing in line to receive her vaccine was something she’ll always remember and that everyone there was beyond ready to take this next step.
“It was incredibly emotional. I honestly teared up when I received the email inviting me to schedule my appointment. I was so excited that the night before I had trouble sleeping—kind of like a kiddo who can’t sleep the night before Santa comes. This vaccine means so much for us. It means that maybe sooner than later I will feel more comfortable with my kids going back to school and participating in activities. It means that we have less worry about me bringing this virus home from work to our household, and less worry about me getting a severe case of this virus.”
She says she can completely understand why someone would be skeptical of the vaccine, but she encourages everyone to avoid the “Google trap” and to please contact your physicians/care providers to discuss it further. For anyone with IBD, Janice advises you to specifically contact your gastroenterologist. If there is anyone those of us with Crohn’s and ulcerative colitis should trust, it should be our GI!
Janice’s only side effect was also a sore arm, though she does anticipate more symptoms (low grade fever, aches, fatigue) after the second dose, because this was well documented in the trials.
Helpful Resources to Educate Yourself About IBD + COVID Vaccine
For anyone with chronic illness, it’s safe to say living with a disease gives you perspective. Your patient experience and journey shapes you in ways you may never have imagined, until you’ve lived it—persevered—and can look back at all you’ve overcome to get to where you are today. In Part 4 (the final installment) of “So, You Have An Ostomy,” we dig deep into what ostomates wish they knew that they know now, how best family members and friends can offer support, and why some choose to show their ostomy and others do not.
What Ostomates Would Tell Themselves If They Could Go Back in Time
Brian Greenberg wants anyone who is contemplating getting an ostomy to know that life doesn’t end after surgery, it begins again. He says after being sick and thinking an ostomy would be worse, it gave him his life back. He went from being in bed and alone to being an Ironman and marrying the love of his life.
“There are a lot of ostomates out there and none of us are recreating the wheel. If you have a fear or question, chances are there is someone who already has created a solution. I went from being bedridden to completing a full 140.6-mile Ironman, which showed me anything is possible. My ostomy has allowed me to not only live a normal life, but a good life.”
Ashley Clark says she used to be scared to leave the house. Her ostomy has given her freedom that she never had before.
“Prior to my ostomy, I didn’t want to make new friends or spend time with people I wasn’t comfortable around, I had no energy and I felt like I was trapped inside this body that couldn’t do all the things my brain wanted to do. Since my ostomy, I feel like I’ve gotten myself back in a lot of ways. I make plans again and I travel and spend time with people I love. I don’t take life for granted.”
When Michel Johnson thinks about when he had an ostomy, he says it not only saved his life, but taught him to reframe the tough times. He believes he became a better person in many ways and that his level of gratitude and compassion for others grew exponentially. He’ll always remember when he had his first bag leak in public the first time he left the house after surgery.
“I was in at a grocery store and struggling to change my bag in the restroom. I got poop on my shirt. I was embarrassed. A lady noticed the supplies in my hand and the mess on my shirt when I went into the restroom. She told me she was a nurse. She had a store employee block the bathroom door and she came in to help me, even gave me her blouse to wear (she had a tank top on under her blouse). I cried and hugged her so tight. Couldn’t believe she was so sweet to me in my time of need. It’s moments like that, which change a person.”
Alison Rothbaum credits her ostomy for allowing her to be alive. She says she wouldn’t have made it beyond age 23 if she didn’t have her colectomy. Since surgery, she’s been able to travel, work, and actively participate in the lives of her nieces and nephews. She advises ostomates to cut themselves some slack and acknowledge how far you’ve come every step of the way.
“You’re learning a new lifestyle of personal care externally and recovering internally. There’ll be days you are so upset, and then there’s days you only remember you have an ostomy when you go to the bathroom. This new life may have not been what you had in mind years ago, it may not be ideal, but it’ll be ok.”
Gaylyn Henderson created Gutless and Glamorous, a non-profit organization, as a way to empower and uplift those living with chronic illness and to raise awareness and erase the misconceptions of living with an ostomy. She doesn’t want others to suffer because of the fear of being stigmatized; it’s her goal to eradicate the stigma.
“Through it all I have learned to remain constant in my beliefs and that is to not let the beliefs of others control how I view myself. I’ve learned the importance of loving myself and staying true to myself and knowing I am capable of overcoming anything. I’ve learned that one of life’s most rewarding challenges is to accept yourself for who you are and all that you are completely and consistently. I am so in love with my new body; my new body saved my life in more ways than one.”
Loved One or Friend an Ostomate? Here’s how you can offer support
Listen. Listen. And listen some more. And be there. You don’t have to know what to say, you don’t need to have the right words or give advice. Let your loved one or friend know they are not alone and don’t pretend to understand what your loved one is going through, because you simply can’t relate (unless you’re an ostomate yourself)! Ostomates say when they complain or having a hard day, they just want to be heard and believed.
Karin Thum says to find your tribe and love them hard, “It may be a friend, or maybe a family member. Someone who doesn’t have Crohn’s or ulcerative colitis may not fully understand. But the right support won’t try to understand. They’ll just want to be there for you. Let them. It’s hard for those closest to us who love us to watch us go through what we do.”
IBD mom and ostomate, Byrd Vihlen, recommends loved ones to ask questions and take the time to learn more about ostomies, the disease, and what this means going forward.
“This surgery is NOT A CURE. Knowing that you care enough to want to be educated means the world. I would also advise that going into surgery, the recovery could be very different than what is described by the doctors, prepare for that emotionally so you can better support your family/friend…and not put any extra unnecessary stress on them during a fragile time. Empathy goes a long way.”
Speaking of empathy, Tina Aswani Omprakash recalls how one of her friends once insisted on watching her change her ostomy bag. As first, Tina says she was freaking out saying no. But now, when she looks back, she realizes that was one of the most supportive experiences.
“She asked questions as I went along and was curious to understand how it worked and why people felt such a stigma around it. It made me feel like a human being and that someone actually cared and wanted to learn and support me. I’d say if you’re close family, be there when the ostomy nurse is teaching how to change the bag. Oftentimes, we are in such a rut and on painkillers that we have no idea what’s going on. Support us, ask questions, be there and take notes. It can only help.”
Kristina Schook, 24, of New York, was diagnosed with Crohn’s when she was eight. She needed an ostomy when she was in high school and says the entire experience was insanely hard on her. Her bag would constantly leak, and it messed with her self-confidence. She says she had to alter what sports she played because of the leakage, but is thankful she was never judged by her peers. When it comes to advice for family and friends, Kristina says, “Just let us rant if we are upset. Don’t tell us you understand because our intestine is literally out of our body. It’s extremely hard to deal with mentally. For me, reversal was a great option and I don’t regret it.”
Jordan Ditty says patience is key.
“This is a big change. There will be a lot of emotions around it whether it was planned and wanted, unexpected, or they were dreading it. Offer to sit with them while they change their bag, watch a movie together, bring them coffee, listen to their frustrations, hold them when they cry, they need your support. While at the same time don’t treat them any different, this ostomy did not change who they are as an individual.”
Lindsay Dickerson says if you care about someone with a digestive disability and ostomy, recognize the mental toll their patient experience can cause.
“We are shuffled from specialist to specialist, appointment to appointment. There are days we can’t function and (personally) I feel worthless as a friend, wife, mother, and person. Educate yourself on your loved one’s condition. Support them when they feel down. Help them understand it’s not their fault, even though we will feel like it is at times. On the days they need that extra help – give it to them. There are days we can’t do it all and need this help, it’s a lifetime condition. Empathy and love are what we need and the more you give of it the better.”
Showing Your Ostomy Bag to Others
Whether or not you choose to show your ostomy bag publicly is a very personal decision. Some people feel empowered by it, others prefer to be more discreet. You do you, boo boo.
Natasha Weinstein says sharing her ostomy with the world is so much fun. When she first got her ostomy, she would put duct tape all over the bag, thinking it would make it more “socially acceptable” for people to see. Then, she realized a few things.
“Number one—duct tape is uncomfortable. Number two—I was going through a lot of bags and duct just to go swimming, which made the bags heavy! Number three—the bags are already skin colored so what was I doing?! Once I got rid of the duct tape, everything got easier and all I had to do was choose my bathing suit of the day. Now it’s become routine to take a post-race photo with Ziggy out wearing my medal because we’re accomplishing and conquering life together.”
Tionna Forchion says being transparent about her life with an ostomy has been extremely fulfilling.
“I hid my bag from family and friends for many years and now I openly post pictures on social media showing my ostomy and it feels so empowering to show the love I have for myself in my entirety, and that includes my ostomy bag. It’s rewarding when other warriors on social media write me messages saying that me posting pics showing my bag has helped them embrace and love themselves flaws and all. That’s really why I do it, to inspire others to love everything about themselves and so other ostomates know they are not alone.”
Sahara Fleetwood-Beresford shares her ostomy with world so that people can see that it’s ok not to be like everyone else. She doesn’t feel embarrassed or ashamed and doesn’t think of her bag as an issue. “It is what it is—it’s part of me. The same as my moles, scars, stretch marks, etc.”
Speaking of scars (or battle wounds as I like to call them), Lindsay says, “I love showing off my ostomy. I’ve had 14 surgeries in my lifetime at this point and the ostomy is a symbol of everything I’ve overcome and how I’ve taken the steps to improve my life for the better. All bodies come in different shapes, sizes, and abilities. I feel confident with my ostomy out and welcome anyone who has questions about it!
Payge Duerre says showing her ostomy doesn’t phase her anymore. She says it doesn’t make her feel empowered, either.
“I post for others. I show for others. I show and post because I’m 110% okay if I get hate or negative comments. I might cry if there are mean people, but I truly post and show my ostomy because I’m confident about it and hope to support others by doing so. My ostomy has completely changed my life for the better. There is no possible way I’d be this healthy version of me with my colon. I no longer shit my pants, I can travel more than five minutes away from the bathroom, I’m not missing every other day of work/school/events because of pain so immense I can’t get off the couch. I don’t have to spend an entire day every four weeks getting my infusions.”
Tina and many others I interviewed, choose not to show their ostomy or their stoma. But each ostomate said they respect the many people who do.
“I don’t feel that I need to show it to talk about it or to empower others. Culturally speaking, I think for me, it’s better left to the imagination. I do show what a stoma bag looks like and show different activities you can do with an ostomy but I think this is an individual’s choice to show or not to show and still feel empowered.”
When Life Comes Full Circle
Over the course of the past few weeks, I’ve had the privilege of connecting with more than 20 ostomates around the world who have candidly and whole-heartedly shared about their personal experience. As someone with Crohn’s who does not have an ostomy, I consider your ostomy a symbol of strength and survival. What each ostomate endures prior to surgery, through recovery, and in life, takes patience and perseverance. It takes strength from within. A strength I can’t even begin to fathom. Ostomies are a visible reminder of the often invisible battles those with IBD and other digestive diseases face while having chronic illness. It’s normal to grieve and be devastated. From what I’ve learned through these warriors, the best way to view life with an ostomy is to think of all the positive it will bring to your life and how it will improve your health and condition. Shifting your perspective and thinking of your ostomy as a gift rather than a curse seems to be the best medicine of all. Thank you for following along through this series. I hope you feel better educated about life with an ostomy and have learned something, I know I did!
Celebrating Ostomy Awareness Day (October 3rd, 2020)
This year marks the 10th Anniversary of National Ostomy Day. This day serves as an opportunity to spread awareness about ostomy surgery.
Twitter Chat (#ddhchat): Diet and Digestive Health Chat about Nutrition for the Ileostomy hosted by ostomate Tina Aswani Omprakash and Neha D. Shah, MPH, RD, CNSC, CHES Friday October 2 at 12 p.m. EDT.
There’s something special about sitting in a room with hundreds of people, all with the same goal and mission in mind—to fundraise and advance research for IBD. Over the weekend, my husband and I had the opportunity to attend the Mid-America chapter of the Crohn’s and Colitis Foundation’s “Evening of Hope” Gala in St. Louis.
Christian and I both battle Crohn’s disease.
As a patient, it’s difficult to articulate how it feels to attend charity events that revolve around IBD. It’s emotional. It’s uplifting. It’s bittersweet. It’s empowering.
In my 14-plus years living with Crohn’s, I spent so much of that time dealing with my disease in private—never wanting to be judged, never wanting sympathy or pity. When I started sharing my story publicly five years ago, and connecting with others who live my reality, a whole new world opened up. I realized how much support is available and how close knit the IBD community…or should I say family, really is.
The Gala was sold out. Last year the event raised $300,000—this year the hope was to meet or exceed that! That’s from one event in St. Louis—last year the Crohn’s and Colitis Foundation raised more than $80 million through memberships, fundraising events, sponsorships, and other programs.
My favorite moment of the night was listening to a fellow IBD mom and pediatrician speak about her journey with ulcerative colitis and how she’s managed to rise above and experience so much beauty in life, despite her diagnosis. As she spoke, a slideshow of photos of her three sons, traveling the world with her brought happy tears to my eyes. Her remarkable story and experience is one of many that serves as a reminder that just because you have IBD doesn’t mean it needs to hold you back from your dreams. She was diagnosed sophomore year of college, and still managed to become a doctor and have a family.
Connecting with fellow friends, event organizers, and patients in person is a joyful occasion. I especially enjoyed the opportunity to connect with parents of children, teens, and college students who are taking on the disease. It’s my hope that events like this show them all the exciting research and hope that’s on the horizon for the future of care and treatment for IBD. Events like this are a reminder that it’s not a matter of “if” there will be a cure for Crohn’s and ulcerative colitis, but when.
If you’ve never attended a Crohn’s and Colitis Foundation event for your local chapter—whether it’s a patient symposium, an education event, a walk, or a Gala, I highly recommend you check them out. While it’s great to connect on social media or over the phone, nothing compares to physically being in the same room with people who are passionate about the same cause, who understand your reality, and are driven towards the same mission as you.
You’re sitting in class. The abdominal pain starts drowning out the words your professor is saying. You have the urge to go to the bathroom, but you’re embarrassed because you literally just got back to your seat from excusing yourself minutes before. You’re struggling. Your disease is making the simple task of sitting in class alongside your peers an ordeal. While you may feel alone in this moment, thousands of college students around the world living with IBD can relate to this overwhelming stress and strain.
When I put a call out on Twitter and asked the IBD community what worries and challenges impacted college students, here are some of the responses I received pertaining to academics:
“Trying to balance wanting to do well vs. taking care of myself. I would try to push past a flare to study or go to class and would end up in the hospital (15+ ER visits and 5-6 hospital stays). In the long run, pushing past it was not the best idea. Balance is key. Health comes first,” said Aaron Blocker, a Crohn’s patient and IBD advocate. “It sucks to have to pause college because of your health, but school will always be there, and your health is important for long-term success.”
Kristin Harris has ulcerative colitis, one of her biggest worries was offending teachers by leaving multiple times to go to the bathroom. “Knowing I may dash out of class gave me major anxiety. I always tried to secure a seat next to the door. I was terrified I’d have to run to the bathroom during a test and that made me so anxious—which only made my symptoms worse.”
The same can be said for Rasheed Clarke. He too lives with ulcerative colitis and is a vocal advocate in our community. “Biggest worry was making it through each class without having to scoot to the bathroom. Somehow, I managed to make my bathroom trips in between classes…most of the time. I also kept spare underwear with me in case of accidents, and let’s just say I’m glad I did.”
Breaking down your walls and being open with professors
Similar to personal relationships and friendships, those on campus can only offer support and help to you if they are aware you have IBD. By openly communicating with your school’s disability office and getting the proper accommodations in place, along with informing your professors, you set yourself up for greater success.
“The hardest part for me was sharing a letter written by my GI with my professors explaining my medical situation and requesting classroom accommodations. As a straight A student, now struggling to pass classes due to an awful flare, I was devastated that I needed to ask for help. I was appreciative of my professors’ extreme kindness and that I was granted accommodations (deadline extensions, attending a different lecture on bad days, rescheduling exams, etc). This was a profound moment that taught me it was okay to ask for help,” said ulcerative colitis patient and IBD advocate, Jenna Ziegler.
Alex Beaudoin was diagnosed with Crohn’s during her academic career. She learned the benefits of communicating with professors. “I was shocked at how understanding everyone was. Ask for extra time, ask for a note taker. Get in touch with your school’s office for those with disabilities. Access the support you need to be on equal ground.”
Key accommodations to discuss with your school’s disability office
As people living with IBD, most of us strive to overcome our personal limitations. At the same time, it’s important to understand your achievements and accomplishments are not diminished when you ask for help and assistance. If anything, accommodations will help you reach your goals and get to where you want to be.
According to Section 504 of the Rehabilitation Act of 1973 (as well as the Americans with Disabilities Act), public, government-funded institutions such as state and regional colleges and vocational programs, are required to make reasonable modifications and adaptations for students with disabilities that significantly impact their education, learning, or physical ability to participate in programs. Click here to learn more about disability services and your rights as an IBD patient. This pertains to all school-age children and adults, click here to check out the Crohn’s and Colitis Foundations Guide to Educational Equality.
“I asked for disability accommodations which at my school, last one year and then you’re re-evaluated by their social worker for whatever your needs might be. For me, in writing-intensive classes, I was allowed extra time to submit papers. For classes with exams, I received extra time to complete the exam. I also can use the bathroom frequently without question, eat in class without any questions and I’m allowed more than the usual 2 absences allowed in most classes,” said Tina Aswani Omprakash, Crohn’s patient and IBD advocate. “If there are group projects and I can’t partake; I ask the professor if I can do something on my own.”
The Crohn’s and Colitis Foundation’s Mid-America Chapter is gearing up to a host a webinar tomorrow (Thursday, September 26, 2019) from 7-8 pm CT to address managing IBD while furthering your education along with finding the appropriate accommodations. Click here to register and stay tuned for Part Three of my series “IBD on the College Campus” next week.
If you’ve never attended a Crohn’s and Colitis Foundation event for your local chapter—whether it’s a patient symposium, an education event, a walk, or a Gala, I highly recommend you check them out. While it’s great to connect on social media or over the phone, nothing compares to physically being in the same room with people who are passionate about the same cause, who understand your reality, and are driven towards the same mission as you.
Your disease is making the simple task of sitting in class alongside your peers an ordeal. While you may feel alone in this moment, thousands of college students around the world living with IBD can relate to this overwhelming stress and strain.
Balance is key. Health comes first,” said Aaron Blocker, a Crohn’s patient and IBD advocate. “It sucks to have to pause college because of your health, but school will always be there, and your health is important for long-term success.”
As a straight A student, now struggling to pass classes due to an awful flare, I was devastated that I needed to ask for help. I was appreciative of my professors’ extreme kindness and that I was granted accommodations (deadline extensions, attending a different lecture on bad days, rescheduling exams, etc). This was a profound moment that taught me it was okay to ask for help,” said ulcerative colitis patient and IBD advocate, Jenna Ziegler.
Ask for extra time, ask for a note taker. Get in touch with your school’s office for those with disabilities. Access the support you need to be on equal ground.”
I also can use the bathroom frequently without question, eat in class without any questions and I’m allowed more than the usual 2 absences allowed in most classes,” said Tina Aswani Omprakash, Crohn’s patient and IBD advocate. “If there are group projects and I can’t partake; I ask the professor if I can do something on my own.”
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