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The Patient Experience: My j-pouch changed my life

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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.”

Paying It Forward with IBD

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

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

Staying connected through the pandemic

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

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

A call to help

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

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

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

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

Passing along the appreciation

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

“Dear Natalie,

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

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

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

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

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

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

Inaugural Autoimmune Summit just what the patient ordered

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This post is sponsored by the Autoimmune Association. All thoughts and opinions shared are my own.

An educated patient is an empowered patient. Over the weekend the Autoimmune Association presented its Inaugural Autoimmune Summit that aimed to do just that. The virtual two-day event featured 23 educational sessions and more than 50 autoimmune experts including physicians, nurses, policy experts, and of course, patient advocates.

The Summit covered a wide variety of important topics that impact patients and caregivers who live with autoimmune conditions. I had the opportunity to moderate a panel discussion about fertility, family planning, and pregnancy alongside Dr. Marla Dubinsky, Chief of Pediatric Gastroenterology at Mount Sinai and Co-Director of the Susan and Leonard Feinstein Inflammatory Bowel Disease Clinical Center and Mariah Leach, a mom of three who lives with Rheumatoid Arthritis and Founder of Mamas Facing Forward. As an IBD mom of three chidren myself, I’m extremely passionate about sharing guidance and support for fellow women on this subject.

During the discussion, Dr. Dubinsky touched on many aspects of the journey to motherhood and beyond with IBD, but one comment she made resonated with me. She said the greatest gift a woman can give their child, is to stay on their medication, and allow their baby to thrive in an uninflamed environment. As someone who needed and depended on my biologic with all three of my pregnancies that comforted me greatly and really struck a chord.

Other topics of discussion during the Summit included tips and tricks for managing multiple specialists to clinical trials, health equity, advocating on Capitol Hill, and complementary medicine.

A dream come true

Lilly Stairs, Vice Chair of the Board of the Autoimmune Association and Summit Lead, lives with Crohn’s disease and arthritis. As a patient advocate, she understands the vital importance of providing those who live with chronic health conditions to share their voice and articulate their needs and struggles.

“It has been a dream of mine and the Autoimmune Association’s to plan an event that unites community members from across autoimmune conditions. Our patient odysseys share deeply rooted similarities. By coming together, we can accelerate autoimmune education, awareness, advocacy, treatment, and someday, cures.”

Goals of the Summit

The goals for the Summit were three-fold. Organizers and presenters like myself hope you walked away feeling connected to people across the patient community, while learning tangible tips for managing your autoimmune conditions. Lastly, the hope is that attendees and Summit participants feel energized and excited about what the bright future holds for those living with autoimmune diseases.

Lilly went on to say, “Events like the Autoimmune Summit are essential engagements for patients and caregivers to participate in. These events provide tools to navigate life with chronic illness and empower patients with the knowledge they need to be “CEO, secretary, and treasurer of your care” as Hetlena Johnson, Lupus Patient Advocate so eloquently stated in the Managing Multiple Autoimmune Conditions panel.”

Events like this are a reminder that we are not alone in our journeys. Even though chronic illness can be extremely isolating, events like the Autoimmune Summit offer the opportunity for connection that often feels like much needed chicken soup for the soul. The camaraderie that is possible even though Zoom has a lasting impact on helping to lift the burden and self-doubt many patients face.

From the Speakers

Tina Aswani Omprakesh participated in a panel on complementary medicine and autoimmunity. As an ostomate who juggles Crohn’s disease, Gastroparesis, and IBS, she knows firsthand how imperative it is to take on illness with multiple approaches.

“This is an important subject that’s often not discussed in the autoimmune space. The reality is that many patients are thinking about exploring it but don’t know how to navigate it in a way that can help complement their existing therapies. These conversations are essential to proliferate both credible information and sources of complementary therapies so patients can truly live their best lives possible.”

Molly Schreiber lives with Type 1 Diabetes, Rheumatoid Arthritis, and POTS. During the Summit, she spoke about what it’s like to manage multiple autoimmune conditions.

“Anytime I can share my story, my hope is that attendees feel less alone in their battle with chronic illness. We may have different health conditions, but our fight is often the same—pain management, medical providers who listen, and affordable medications we can easily obtain.”

Alisha Bridges is a patient advocate who lives with Psoriasis. She participated in a breakout session geared towards dermatology. She says having the chance to speak at the Autoimmune Summit was an honor.

“I hope my story helped viewers to better understand the unique challenges of living with psoriasis as a woman of color especially in the clinical trials sphere. These conversations are imperative to elicit change for better care of patients of all backgrounds.”

Curtain Call

It’s our hope attendees discovered tips for managing autoimmune disease from patient advocates like myself who understand your reality, while also learning about the latest research and future treatments on the horizon.

Did you miss tuning into the first-ever Autoimmune Summit? No worries! All the presentations were recorded and will be shared in the weeks ahead. I’ll be sure to share the Fertility, Family Planning, and Pregnancy discussion I was a part of on my social media channels as soon as the video becomes available.

Thank you to all who tuned in, to all who participated, to the organizers, like Lilly, and the generous sponsors who made this happen. It’s amazing to see what’s possible when patients have a proverbial seat at the table alongside medical professionals and digital health companies. Our voices matter and time and time again we’re being heard loud and clear.

Follow the Autoimmune Association on social media

Instagram: @autoimmune_diseases

Twitter: @AutoimmuneAssoc

Facebook: Autoimmune Association

The Patient Experience: What the IBD Community Says About Remicade

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

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

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

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

What does anti-TNF mean?

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

The Patient Voice

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

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

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

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

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

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

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

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

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

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

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

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

Advice for Infusion Days

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

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

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

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

Balancing the Logistics of Infusions and Work/Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dermatological Side Effects

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

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

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

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

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

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

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

Pregnancy + Motherhood and Remicade

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

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

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

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

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

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

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

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

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

IBD Parenthood Project

IBD Moms

Mamas Facing Forward

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

Remicade and Pregnancy (MotherToBaby)

Other Helpful Remicade “Hacks”

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

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

Stuff That Works: Insights on Infliximab

The Patient Experience: What the IBD Community says about Entyvio

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Starting a biologic or switching to a new one after a drug fails you is a stark reality for many with IBD.  I personally have been on the same biologic since July 2008. Lucky for me, my body hasn’t built up antibodies and it’s served me well in managing and treating my Crohn’s disease. Recently, a woman with Crohn’s disease private messaged me on Instagram. She’s been on Humira (adalimumab) since 2006, but she’s no longer responding to it. Her gastroenterologist has advised she start Entyvio (vedolizumab).

Like anyone who deals with a drug failing them, she’s reached a level of comfort giving herself injections and knowing the ins and outs of the medication she receives. Now, 15 years later, she feels a bit like a fish out of water trying to navigate a new biologic and all the unknowns that come along with that transition, especially because she hopes to start a family in the next year.

After hearing from her and wanting to help, I went out on a limb and shared the following on my Instastory—to try and comfort her as she embarks on this new chapter in her treatment. “Hey IBD fam! Let me know if you’re on Entyvio and what your experience on it has been thus far. Looking to get info for someone who has been on Humira since 2006 and is making the switch after losing response to it. Appreciate your help and insight.”

The overwhelming response from the community

Several people wrote me directly about their experience with Entyvio—everything from tips and tricks to minimize side effects to how Entyvio has improved their quality of life or been detrimental to it. The response truly blew me away. We all know, IBD presents uniquely in each of us. So, one person’s experience with a biologic (or anything for that matter in treating Crohn’s or ulcerative colitis) must be taken with a grain of salt. At the same time, there’s a sense of camaraderie in connecting with those who use or have experienced your same therapy.

Since I’ve never been on Entyvio, I learned a lot in the process…and wanted to share my findings from these direct message discussions with you. Entyvio is known for its low side effect profile, as it specifically targets the gut. My hope is that this will help alleviate people’s concerns and help educate the community, should Entyvio be offered up as a possible treatment plan presently or in the future for you. (NOTE: I am writing this on my own accord—with NO affiliation or guidance to pharma). This is strictly created from IBD patient experience.

Infusion: Dosing schedule + timing

Generally, the recommended dosage is a 30-minute intravenous infusion, every 8 weeks. Depending on a patient’s response, this can shift to every 6 weeks or even every 4.

“Been on Entyvio since it was approved by the FDA. It has been very helpful since it targets the gut. I am on supplemental IBD meds, but I like that it’s a fast infusion and has given me my life back. It’s the longest I’ve ever been on a biologic, too.”

“It’s about an hour total to get the IV, wait for the med to be mixed, and have the infusion. I am noticeably tired the day of the infusion, but then bounce back quickly by day two. No other side effects at all. Entyvio has been a lifesaver for me!”

While some people saw improvement after the loading doses, Entyvio is known to react slower than other biologics. While most of us are used to biologics taking 2-3 months to work their magic, several people stated their GI warned them ahead of time that Entyvio could take 8 months to a year to be fully effective.

Side effects: The consensus among those who responded

Headaches/Dehydration/Fatigue

“I take Tylenol and Benadryl at every infusion because I found when I didn’t, I ended up with really bad headaches. I seem to feel better if I exercise for a little bit after my infusion, like walk 20 minutes or do 20 minutes on a bike. Real slow and easy. I often feel tired that day and maybe the next day, but after that I’m pretty much golden.”

“A lot of people get headaches after the infusion—they think from dehydration, so it’s helpful to ask for an extra bag of saline fluids during the infusion.”

“My friend and I both get tired after our Entyvio infusions. We both need a good nap after and then we feel fine. Hydrating the day before, during, and right after the infusion helps a ton.”

Hair Loss/Growth

“I lost a LOT of my hair while on this and had to take a large amount of prednisone for almost a year to get back on track because this medication. Please do research on this one! I did not do much and read a lot of people lost almost all their hair. Thankfully, mine grew back while I was pregnant. It was a big bummer! I’m on Stelara now and it works just as well as Humira did for me before my response to it also declined.”

“Been on Entyvio about 2.5 years and it’s the only drug to get me into remission! Was on infliximab (Remicade) before and became allergic and lost response. Minimal side effects with the Entyvio as well! If anything, I just noticed my hair doesn’t really grow the same.”

Navigating infusions and life

While the shorter infusion time is a plus, nothing beats the convenience of an at-home injection. At the same time, several patients shared the benefit of setting up an at-home infusion, so that’s something to look into versus going into a medical facility to receive your medication.

“I have ulcerative colitis and I’ve been on Entyvio for almost a year now. It’s the first biologic I’ve been on and it has helped a little, but it hasn’t been able to heal my rectum at all. I’m in a teen support group and one of the group leaders has had the same experience. After the starter doses, I was on every 8 weeks, but my drug levels were too low, so we switched to every 6 weeks and that didn’t do anything either. Since my symptoms were increasing, I was moved to every 4 weeks as of November. I honestly wish I were on Humira or another at home injectable only because I’m 18 and want to have a normal life that isn’t tied to needing to be home or to go the hospital every month, but it is what it is. The infusions don’t take long, but I do come home and sleep for the rest of the day. I started a pediatric clinical trial about a month ago since the Entyvio isn’t doing enough, but I still have to stay on the Entyvio.”

Pregnancy and Breastfeeding

For guidance on pregnancy and breastfeeding in regards to Entyvio, you can find helpful information at the IBD Parenthood Project and through the PIANO registry study. You can also connect with IBD Moms and Mamas Facing Forward, social media communities comprised of women living your reality.

Prior to planning to conceive, it’s always a good idea to communicate your family planning goals and dreams with your care team. Let your GI and OB know that you’re hoping to get pregnant 6-plus months ahead of time, so they are clear on what your expectations are. That way, you can put your best care plan in place, especially as it comes to staying on top of managing your IBD while you bring a life into the world.

“It was the first biologic that actually showed healing on my colonoscopy. I was on Entyvio my whole pregnancy, and now I’m breastfeeding on it.”

“I have been on all biologics and have had the best response to Entyvio. It put me into a 3.5-year remission (my only remission ever) and allowed me to have my son. Unfortunately, it does not target perianal Crohn’s, so I have had issues over the last few years. After trying Stelara, I had to go back to Entyvio because it’s the only drug that treats my luminal Crohn’s. It really is an amazing drug. No side effects for me, and my immune system is stronger than it has ever been—on the other drugs, I caught a million colds and would get bronchitis and pneumonia several times a year. Since being on Entyvio, I think I’ve gotten a cold a year (maybe?!), it’s a dream!”

“I have been on Entyvio for about two years now and it has been lifechanging. In terms of my ulcerative colitis, it has been day and night, and it has even gotten me into remission! I do feel really tired after my infusion and a little bit into the next day, but since I only get them every 8 weeks, that is a side effect I am more than willing to take on! I was on Entyvio for my entire second pregnancy and that was a breeze compared to my first.”

Be a proactive patient

Like many biologics and prescription drugs, there is a patient savings program available that you’ll want to check out. Learn more about Entyvio Connect here.

Helpful Entyvio-Focused Facebook Communities

Several of the people who responded shared they’ve had positive experiences and found support in Facebook groups geared for those specifically on Entyvio. Check them out:

Entyvio Mommas

Entyvio Warriors

Thanks to everyone who went out of their way to share their experience and help a fellow IBD warrior in need. Having this type of intel is good as gold and extremely beneficial in empowering patients as they make drug and treatment choices.

Why Every Person with Chronic Illness Needs to Read “What Doesn’t Kill You”

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Prior to receiving a chronic illness diagnosis, it’s incredibly challenging and nearly impossible to fathom ‘forever sickness’. In Tessa Miller’s book, “What Doesn’t Kill You: A Life with Chronic Illness–Lessons from a Body in Revolt”, she masterfully articulates the highs and lows of life with Inflammatory Bowel Disease (IBD). From navigating the diagnosis, flare ups, the healthcare system, relationships, and the mental health component, she’s created an invaluable resource that I wish every single person with chronic illness could be handed the moment they find out their life story has taken an unforeseen turn.

As someone who was diagnosed with Crohn’s in 2005, two months after college graduation, I wish my former self had these powerful words at my fingertips. The overwhelming nature of IBD can be nearly suffocating at times. As I read this page-turner of a book, I felt seen and understood. I found myself nodding my head, because I could relate to so much of her story and so much of her sage advice. I felt like a college student highlighting what felt like the whole page, because it was ALL so important.

Tessa and I are both journalists. We both have Crohn’s. We both randomly grew up in Illinois. I connected with her over social media after reading her New York Times article, “Five Things I Wish I had Known Before My Chronic Illness.” The article had an impact on me, so when I heard she landed a deal with a publisher, I anxiously awaited for this book to drop.

In the beginning of “What Doesn’t Kill You,” Tessa writes, “I became a professional patient, and a good one. I learned that bodies can be inexplicably resilient and curiously fragile. I would never get better, and that would change everything: the way I think about my body, my health, my relationships, my work, and my life. When things get rough, people like to say, “this too shall pass.” But what happens when “this” never goes away?”

Finding the Right Care Team

When you live with a disease like Crohn’s, it’s imperative you trust your gastroenterologist and care team and are confident in how they help you manage your illness. I always tell fellow patients to take a moment and think about who they will feel comfortable with at their bedside in a hospital room when they’re flaring or facing surgery. If it’s not your current doctor, it’s time to look elsewhere. Tessa breaks down the “qualifications” for getting a care team in place. From finding a doctor who explains why they’re doing what they’re doing and why to a doctor who looks at you as a human, not an opportunity.

“Good doctors see their loved ones in their patients; they make choices for their patients that they would make for their own family. Asking a doctor, “Why did you choose this line of medicine?” will reveal a lot about what drives them and how they view their patients.”

The Grieving Process of Chronic Illness

Receiving a chronic illness diagnosis forces us each to go through the grieving process. For many of us, we were naïve and felt invincible before our health wasn’t a given. We’re so used to feeling as though we’re in control of our destiny, that when we lose that control, we spiral, understandably. Tessa interviewed Paul Chafetz, PhD, a clinical psychologist based in Dallas. Dr. Chafetz is quoted in the book saying, “We go through life with an illusion of safety, guaranteed health, even immortality. Acquiring a chronic illness pierces that illusion, and this is a loss. Grieving this loss is an integral part of adjusting to the illness.”

Take a moment to stop and think how you coped those first few weeks and months after finding out you had a chronic illness. While acceptance takes time and comes in different stages, Tessa explains how flexibility and willingness to adapt to your new “normal” is even more important.

“Rather than searching for big, sweeping acceptance, then feeling like a failure when it doesn’t come, chronically ill folks can enact small, empowering steps, such as taking required medications, learning everything we can about how our diseases work, seeing doctors regularly and being prepared for appointments with a list of questions, advocating for our needs and wants, figuring out which foods makes us feel good, and going to therapy and/or connecting with a support group.”

In my own patient advocacy and experience living with Crohn’s I can attest to the fact that we all spend a lot of time wishing for our past and worry about what our futures will hold, rather than focusing on the right now. The majority of IBD patients are diagnosed prior to age 35. This leads most of us to experience the big milestones of adulthood (career, finding love, living on our own, family planning, etc.) with a disease in tow and wondering how that disease is going to complicate life or hold us back from accomplishing all we aspire to.

Bringing on the Biologics

Tessa calls herself an “infliximab veteran,” she spends a great deal of time talking with new patients and caretakers, mostly moms of young IBDers, about their fears. Most questions I receive through my blog and social media also revolve around biologics and the worries people have about side effects and whether the drug will fail them or be a success. I feel confident deeming myself an “adalimumab veteran”, as I’ve been giving myself Humira injections since 2008.

As patients we are faced with difficult decisions all the time and must look at the risk versus the benefit. Having health literacy and understanding your actual risk from a biologic is something that should be communicated with you from your physician. Tessa’s doctor explained to her that six in 10,000 people who take anti-TNF agents (Humira and Remicade) get lymphoma. But as patients, all we see on the internet and in the side effect notes are “lymphoma.” Force yourself to dig digger and remind yourself of your alternative—to not feel better.

The Truth Serum of Chronic Illness

One of the superpowers of chronic illness is that we get to see which family members and friends come to the forefront and which fade to the background. Not everyone is cut out to be a caregiver, but you’ll quickly see who has empathy and who genuinely cares. In my own personal experience, it’s helped me get out of relationships with guys who were no where to be seen while I lied in a hospital bed and allowed me to distance myself from friends who couldn’t find the time in their day to check in when they knew I was flaring.

Tessa says that chronic illness forced her to peel back the layers and the isolation wall she put up, too. Chronic illness has shown her that people do more than just hurt each other— “they nurture, they listen, they enrich one another’s lives.” Her IBD also empowered her to be brave enough to put an end to unhealthy relationships that weren’t benefiting her well-being, both with friends and love interests. Her Crohn’s has showed her that not every friendship is meant to support you in the same way.

This is a great piece of advice. As you live with a chronic illness, you’ll come to know which friends you can share your deep dark secrets and worries with, and which you give the high-level cliff notes version of your experience to. Your chronic illness will help you set those boundaries in a graceful way.

Her love story with her husband embodies what those of us with chronic illness deserve, a partner who sees us as more than our disease, but understands the severity and complexity at the same time.

Juggling a Career and Crohn’s

One of the biggest challenges of life with IBD is knowing how and when to disclose your health situation with your employer. You may wonder how the news will be received, if it will jeopardize your chance for promotion, if your coworkers will resent you…the list goes on and on. As someone who worked in the TV industry as a producer, news anchor and reporter for nearly a decade, and as a PR professional and corporate communications specialist, I’ve been lucky that all my bosses have been incredibly understanding of my struggles with Crohn’s, but never used them against me in any way. I’ve always waited until after I have received the job offer and then told my boss in a meeting the first week of work. This alleviated some of the stress on my shoulders and ensured my coworkers wouldn’t be blindsided when I had a flare that landed me in the hospital. By communicating openly, it also to set an expectation that I may not always feel up to par and that I may need more bathroom breaks or to work from home or come in late after doctor appointments.

Tessa so eloquently writes, “You want your boss to understand that while your disease affects your life, you’re still capable of doing your job. Deliver the necessary facts about your illness without bombarding your boss with information—keep it direct and simple. Be clear about how you manage the illness and that although you do your best to keep it under control, it can flare up. Tell your boss what you’ll do if and when that happens.”

Realizing the Power of Pain

One of my favorite analogies that Tessa shares in the book is that each of us carries an invisible bucket, some are heavier than others, and the weight of that said bucket is constantly in fluctuation. She says that as she started connecting with those in our community, she came to realize that her personal pain was no better or worse than anyone else’s. So often we weigh our struggles against those of others, and that’s not helpful to beneficial for anyone.

“Think about it: If a friend came to you in pain, would you tell them that other people have it worse and that their pain isn’t valid? If you did, you’d be a lousy friend—so why do you speak to yourself in such a way?”

Rather than thinking that ‘someone always has it worse’ ask for support when you need it. Don’t downplay your struggles out of guilt thinking you aren’t deserving of help. Give support when you can but don’t forget about the person you see looking back in the mirror, be loving, kind, and patient to them, too.

Leaving the Rest to Imagination

Some of my other favorite excerpts from the book are Tessa’s “Seven Secrets”. The secrets (both big and small) she keeps from loved ones and friends about her experience with IBD. The secrets are relatable. We don’t want to come off as a burden. We don’t want to scare those who mean something to us. We want to hold on tightly to the notion that our illness doesn’t define us, so we often don’t disclose the true reality of what encompasses our illness.

Another section I know you’ll love is “Thirty-Eight Experiences of Joy” where Tessa shares quotes from 38 different people with chronic illness and how they’ve discovered joy despite their illness. I’m honored to be featured in that section of the book.

She understands the power of community and how finding your tribe within your disease space and outside of it is an important aspect of disease management and life fulfillment.

“Connecting with other chronically ill people teaches you how to carry each other’s weight—when to lift when you have strength, and when to share the burden when you have no energy left,” writes Tessa. “I’ve found the chronic illness and disability community to be one of endless empathy and generosity.”

The Gratitude That Comes with Chronic Illness

I’ll leave you with one of my favorite quotes from the book and a perspective that I wholeheartedly share:

“At the beginning of my illness, I was so inwardly focused on what I’d lost that I couldn’t see the gifts illness had given me. Mom, a determined optimist, taught me to always look for the silver lining. Mine is this: Yeah, my body won’t allow for any bullshit—no jobs I hate, no relationships I’m not fulfilled by, no hours crying over wrinkles. Illness made me braver, kinder, and more empathetic, and that gives me way more radical power than the faux control I was clutching to for so long. In the most unexpected way, illness freed me. It compelled me to begin therapy, which kick-started the process of tending my wounds old and new. It made me focus on the present more than the anxiety of the future. And it made me be in my body in a way I never experienced before. Suddenly, I had to mindfully care for my body and brain as best I could and understand that beyond that, it’s out of my hands.”

Connect with Tessa:

Twitter: @TessaJeanMiller

Instagram: @tessajeanmiller

Her website

Purchase “What Doesn’t Kill You: A Life with Chronic Illness–Lessons from a Body in Revolt”

Amazon

Barnes & Noble

IndieBound

Stay tuned to my Instagram (@natalieannhayden) for a special book giveaway kicking off today (February 8)! Five lucky followers in the United States will receive a FREE hardcover copy of Tessa’s book.