When you have IBD and you start to notice GI symptoms going awry, it’s easy to allow your mind to start racing and your worries to become all-consuming. This past week I did an in-person patient advocacy speaking engagement, came home, and started feeling extremely fatigued. Within an hour, I vomited, and the diarrhea began. Not to be TMI (is that even a thing when you have IBD?), but this wasn’t just “normal” diarrhea. It felt like I was prepping for a colonoscopy. Straight water-like diarrhea that hit me like a ton of bricks. I couldn’t stop. In that moment, I thought about how I was on an antibiotic for a sinus infection and bronchitis and knew that alone, with Crohn’s disease, put me at greater risk for C.diff.
For those who don’t know, “C.diff” or Clostridioides difficile is a bacterium that causes an infection of the large intestine (colon). Symptoms can range from diarrhea to life-threatening damage to the colon. According to the Mayo Clinic, C.diff typically occurs after or during the use of antibiotic medications. In the United States, about 500,000 people are infected each year.
The risk of C.diff and IBD
When I couldn’t stop going to the bathroom, I immediately contacted my GI. Being that it was 4 pm on a Friday, the timing of it all was challenging. She called me from home and said she normally wouldn’t be too concerned, but the fact I had just finished a course of prednisone while being on doxycycline put me at greater risk. She warned that if I had diarrhea the following day or if I had a fever at any time, that I would need to get tested for C. diff and go to the hospital. She put in orders so I would be able to do so and told me to contact the Fellow on staff if I had concerns over the weekend.
Saturday came and with the bathroom trips came unbelievable abdominal pain, reminiscent of what a bowel obstruction feels like. I could barely walk and was grasping my abdomen in pain hunched over. I had already called and spoken to the Fellow on call three different times. In that moment, my husband called his mom so she could watch our three kids and we rushed to the emergency room.
A study by the University of Michigan recently looked into the relationship between IBD and C.Diff. The study found that people with IBD are at an increased risk for C.diff, even if we haven’t taken antibiotics. It’s believed something about the IBD gut supports C.diff colonization and growth, but the actual relationship is still a bit mysterious. This study looked at a mouse model and found, “inflammation and changes in the gut microbiota associated with IBD promote C.diff intestinal colonization.”
For those of us with IBD, our immune system mistakes normal intestinal microbes as harmful invaders and attacks them, leading to inflammation in our guts. The cause of C.diff is similar, with the immune system, microbiota, and C.diff itself playing a role in infection.
The burden of C.diff on the IBD population
According to an interview in Pharmacy Times, we’re at greater risk for C.diff when our IBD is active. This is because active inflammation changes the flora in our microbiome and puts us at greater risk for developing infection. In this piece Bincy Abraham, MD, MS says we see C.diff in both ulcerative colitis and Crohn’s disease patients but tend to see it more in those with UC since the colon is directly impacted.
Get this—A database of patients with IBD showed 10% will have at least one C. diffinfection over the course of their lifetime. Half will have more than one. WebMD shares that C.diff infection begins with frequent, watery, foul-smelling bowel movements and cramps in your abdomen. When I was unsure if I had C.diff that was the number one question I kept getting asked. People told me the smell was very unique—like a barnyard, sour smell. Thanks to my sinus infection congestion, I had no idea what it smelled like. But—it’s important to look out for that if symptoms present. Medical professionals told me they can tell right away by the smell, if it’s C.diff.
Symptoms of C.diff
While watery diarrhea with a strong odor is the main indicator—there are other symptoms to watch out for:
-Abdominal pain and cramps
-Fever (I had the chills, but my GI assured me that was due to dehydration from the diarrhea)
-Nausea and/or vomiting
-Loss of appetite
-In severe cases, blood or pus in stools
For anyone with IBD, these symptoms are reflective of what we experience with an IBD flare. So, it can feel especially concerning in the moment as you try and figure out what’s going on.
My rough ER experience and finally getting tested
I always him and haw and dread the thought of seeking medical care at the ER. It brings about so many emotions and past trauma. But in this case, I knew I needed to wave the white flag and get to the bottom of what was happening. After waiting four excruciating hours in the ER, I wasn’t sure how much more I could take. I was moaning in pain and hobbling back and forth repeatedly to the bathroom. Bobby was using a wheelchair to push me around. The nurses in triage were incredibly unprofessional and lacked any empathy. It was like nothing I’ve ever experienced. I was basically reprimanded for showing emotion about my pain and told others had it worse. It was despicable. She waved her “RN” badge in my face and said she had a woman die from a pulmonary embolism while in the waiting room and she didn’t make a peep. As I was crying, I yelled back, “I’M NOT A WIMP! I have Crohn’s disease!”
Once I was finally brought back to a room, the same nurse acted sweet as sugar. Gag me. The ER doctor had no clue what was going on. I was taken for a CT scan with contrast while in the waiting room and the young doctor walked up to me all cocky and said, “ So, you have an ileostomy.”…I said, no I don’t have an ostomy. He then proceeded to say, “Oh, so you had a reversal.” NO. I had bowel resection surgery. The fact the doctor was clueless to IBD and thought that because I had an anastomosis indicated a reversal (even though I have Crohn’s) was scary. I was given Zofran, fluids, and Dilaudid and was told it was most likely a stomach bug, but that they would like to do a stool sample to rule out C.diff.
Unfortunately, since I had literally shit my brains out in the ER for hours, I had nothing left. I hadn’t eaten in almost 30 hours. By the grace of God, around midnight, I was able to go. I was so grateful to have a stool sample and get some answers. The shift changed and a new doctor walked in. She was empathetic, kind, and knew her shit about IBD. I felt an immediate sense of relief. She told me they were going to do one more round of Zofran, fluids, dilaudid and add in Benadryl and Droperidol for anxiety and to calm things down and if that didn’t help, I would be admitted. Luckily, that heavy hitting dose of IV fluids and meds did the trick and I was finally comfortable and able to go home around 1:30 a.m., knowing that I’d get the C.diff result the next day.
Despite testing negative for C.diff, my diarrhea and excruciating abdominal pain lasted from Friday at 2 pm until Tuesday evening. This stomach bug was no joke and I always feel when you have IBD with a stomach bug, it’s next level.
The Patient Experience: What you had to say about C.diff
I ran a poll on Instagram, 307 people with IBD responded. Of that group, 37% have had C.diff. On Twitter, 147 people responded and 28% shared they had C.diff at some point during their patient journey. I was blown away by the hundreds of DM’s I received on Instagram when I asked for advice and was freaking out about the possibility of having it. I learned a great deal from all the insights shared. Here are some of the messages I received that I feel can benefit our community moving forward:
“I went through a case of C.diff this summer after two rounds of antibiotics and a round of steroids at the same time. I was miserable, only eating boiled potatoes with a little salt and bananas. Once I got meds (dificid), I saw improvement quickly. I also take Visbiome probiotic (prescription strength) and taking that regularly helped me in a period of waiting for results.”
“I had C.diff back in 2015…awful. It was so brutal. I was sick for over a month with it, just couldn’t shake it even with the crazy dosing of antibiotics.”
“Keep an eye on your temperature and if you’re running a fever with the diarrhea—that’s a big indicator.”
“I had C.diff on and off for four years and just got a fecal transplant in November and have been “cured” since. I’ve never thought C.diff was like the stomach flu/norovirus. C.diff to me is more like a bad IBD flare with some fever/chills and diarrhea that’s very distinct from whatever your “normal” IBD diarrhea may be.”
“I battled C.diff for a year. Ask for Vancomycin right away. It’s the best medication for it. Having Crohn’s and C.diff is a horrible combination. It caused me a lot of issues.”
“I had C.diff earlier this year. My symptoms included a very smelly gas, low-grade fever, abdominal cramps, and mushy stool. Pedialyte, broth, and tea helped a lot.”
“Every time I take antibiotics, I take saccharomyces boulardii (probiotic). The specific strain helps prevent C.diff.”
“C.diff is MISERABLE. I can normally smell if it’s C.diff. I’ve had it five times. Go to the ER and do not wait. It’s so horrible. It’s exhausting and being that sick is the worst. The pain is awful, too. No one ever discusses how much pain it puts people in.”
“I’ve had C.diff so many times. Output is like colored water, and I go 20-plus times a day. Mine way always a weird yellowish color. Going to the ER means a quicker diagnosis and for me I end up inpatient, too. With C.diff I’ve found liquid Vancomycin works best as it’s absorbed faster, the pills just went straight through me.”
“C.diff is super hard to get rid of, so fast treatment is key. I had a recurrent infection for nearly a year. I took Vancomycin 4x/day for a few weeks and eventually tapered down. I think it was just a nasty strain, but I eventually kicked it out.”
“C.diff is a doozy to have. The hardest part for me was keeping family and friends away as it’s super contagious, too. I remember a lot of Zofran. IV fluids and sleeping as much as humanly possible. Use wipes instead of toilet paper so your bum doesn’t get raw.”
“My brother had C.diff and the only thing to get rid of it was very strong antibiotics. Every time I’m on an antibiotic, it makes me very sick and puts me in a flare and I have choice but to start probiotics.”
“C.diff is rough and highly contagious. I had it right before I went on Humira. Make sure to bleach your bathroom and not to prepare food. My GI was super concerned about me giving it to my husband. My treatment was Vancomycin 125 mg orally 4x a day for 10 days.”
“I have been battling reoccurring C.diff for almost 2 years. Coming up on my second Fecal Transplant as the first failed. I was in a flare and absolutely nothing was working. Finally discovered underlying C.diff. Vancomycin changed my life. Within 48 hours I went from 15-20 bowel movements a day to 1-2.My doctors are baffled by how well I respond to it.”
“I’ve had C.diff more than once, the first time I waited almost too late to seek testing and ended up with dangerously low potassium, EKG changes, and was hospitalized. The second time I didn’t even know I had it until I was being worked up to join a clinical trial for my UC and had to do treatment, again. Liquid IV packets help ward off dehydration.”
“My son who has Crohn’s has had C.diff two times. Vancomycin with a long, slow taper was key to get rid of it both times. Wipe the bathroom down with bleach constantly.”
“C.diff is the actual worst. If you have it, skip Flagyl and go straight to Dificid. Flagyl made me SO sick. Like so much worse and it didn’t get rid of it…and that’s the case for multiple other people I know who’ve had it.”
“I had C.diff. I played the waiting game, and it was miserable. If your stool is completely watery and very foul smelling, then it’s C.diff.”
“I take Culturelle Probiotics Digestive Health Extra Strength whenever I’m on an antibiotic to prevent it.”
“I had reoccurring C.diff during the pandemic, a few months after my bowel resection, and for recurring months after. They would usually do a fecal transplant, but they were on hold because of COVID. It took months to get better.”
Kick C.diff to the curb
Ironically, while C.diff can be brought on by antibiotics, the only way to get rid of it…is to take more antibiotics. The three most prescribed are Vancomycin, Flagyl and Dificid. In severe cases, especially when toxic megacolon becomes an issue, you might need surgery to remove the damaged portions of your bowel. Other options for reoccurring infection include Fecal Microbiota Transplant (FMT), where donor stool is introduced in your colon. Probiotics and antibody therapy are often used as well. Certain antibodies are known to provide immunity against the toxins produced by C.diff. A combination of the medications actoxumab and bezlotoxumab can lower your changes of the infection coming back.
When I received the negative C.diff test result I felt such relief. So many of my symptoms aligned with the tall-tale signs, I wasn’t sure what to expect. The entire process has been such a learning experience and I hope that you’ve taken away some helpful nuggets of knowledge should you ever question you have C.diff yourself.
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.
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!”
Mental health often takes a major hit when you’re diagnosed and live with a chronic illness like IBD. I ran a poll on Instagram and Twitter this past week and the results were extremely eye-opening. Not only for the patient community, but for any caregivers, friends, or family who know people with Crohn’s disease or ulcerative colitis.
On Instagram—out of 350 people polled over 24 hours, a resounding 93% responded “yes” to IBD impacting their mental health and causing depression and anxiety. On Twitter, I ran the same poll for 48 hours, of the more than 205 votes, 86% of people responded “yes”.
Dr. Yezaz Ghouri, MD, Director of Inflammatory Bowel Disease Services, University of Missouri School of Medicine at Columbia, offered helpful insight on the topic. I had the pleasure of meeting “Dr. ZaZ” (as he commonly goes by) in person at the Crohn’s and Colitis Foundation’s Mid-America Chapter Gala in November. Dr. ZaZ was awarded the 2022 Catalyst for Mission Advancement award and I was so inspired and intrigued by his work as I was emceeing the event, that I knew we would have to collaborate on Lights, Camera, Crohn’s! We made it happen.
Here’s my interview with Dr. ZaZ about how our IBD can impact our mental health.
NH: “During the first day of the Crohn’s and Colitis Congress 2023 conference it was shared that rates of anxiety and depression are about twice as high in the IBD community compared to the general population–why is that?”
Dr. ZaZ: “The exact cause of IBD is not known. There are some common theories that have been suggested, these include genetic factors, changes in gut microbiome, alteration in immune function of the body, and effect of certain environmental factors. Interestingly, some of these factors have also shown to be associated with mental disorders like anxiety and depression. The gut-brain axis is a nervous system-based pathway that connects the nerve cells from the brain to the gut. This gut-brain axis has been found to play a role in the release of nerve cell chemicals (or neurotransmitters) in the intestines. One such neurotransmitter is Serotonin, which has a well-established role in several psychiatric disorders like anxiety, depression, bipolar disorder, etc. Studies have pointed out an alteration in serotonin activity in the intestines of patients with IBD 1.
The gut microbiome comprises of trillions of species of organisms mainly consisting of bacteria. The healthy gut-microbiome is altered in individuals with several conditions like anxiety, depression, Alzheimer’s, Autism, etc. This alteration is also seen in IBD and has been a subject of active research to better understand the various changes in the bacteria of the gut. Some of these bacteria produce chemicals that can serve as neurotransmitters in the gut. It is unclear if these chemicals could influence the gut-brain axis and contribute towards the occurrence of mental disorders. Last year we published a study that showed this association of increased prevalence of anxiety and depression among IBD patients 2. The added burden and distress was not just limited to IBD patients, the study also showed an overall increased healthcare cost and burden to hospital systems. It is in the best socio-economic interest of the government and the public to address mental health issues in society, especially among those with chronic illnesses like IBD.”
NH: “How can patients best articulate their concerns and communicate with their doctor about their mental health?”
Dr. ZaZ: “IBD patient sometimes suffer from anxiety, depression, sleep disturbances, and other mental conditions like eating disorders. Your GI doctor hopefully has established a healthy physician-patient relationship where you are comfortable to bring up any issues that you would like to discuss with your GI specialist. During my clinic visits apart from addressing the medical aspects of IBD, I frequently have a friendly conversation about my patient’s life in general with a focus on their overall well-being, including talking about their mental health. In addition, several individuals have a primary care provider (PCP) with whom they generally have a good relationship and feel comfortable bringing up any health-related concerns.
Psychiatric conditions can manifest with sleep disturbances, fatigue, loss of appetite, lack of interest in activities that you previously enjoyed, depressed mood, suicidal thoughts, etc. Sometimes IBD flares can contribute to some of these symptoms, especially sleep disturbances due to night-time diarrhea or constant abdominal pain. Use of biological medications can be frequently associated with fatigue that may last a day or two after taking the biologic. In a large-scale UK based study, presence of a diagnosis of IBD was associated with a higher likelihood to cause deliberate self-harm, anxiety, depression, and insomnia. Interestingly, the risk was higher among those with Crohn’s disease than with ulcerative colitis 3.
Remember, mental stress can also contribute to an IBD flare. Frequently I see some of my IBD patients go through an uncontrolled spell of psychological stress, maybe related to personal relationships or their place of employment. This when unchecked can precipitate an IBD flare, and in some cases develop psychiatric illnesses like anxiety or depression. Hence, it is important to have a stress-free life or mitigate stress to minimize its effect on your mind and body.”
NH: “I know you see a lot of college students; how do you navigate these concerns as their care provider? Do you tend to see this more with your younger patients—or is it across the board?”
Dr. ZaZ: “College life of a freshman can be quite stressful. The move away from the comforts of their homes to a new city or town and being surrounded by strangers can be overwhelming. This can cause psychological stress which may precipitate an IBD flare. Moving to college can also disrupt the continuity of care received from their established pediatric or adult GI specialist. Students may skip their medications due to storage issues, changes in insurance, feeling of shame of having IBD or fear of not being able to ‘fit-in’. All these factors can contribute to inadequate management of their underlying IBD. We at the University of Missouri try our best to accommodate college students in our clinics so they are cared for and IBD flares are prevented from occurring. The student health clinics are efficient in recognizing students with chronic illnesses and referring them to GI clinics. I frequently encourage students that they continue to see their primary GI specialist but also establish care in our clinic/hospital system, so in case there is a medical emergency or if they experience a flare, we will be well-informed beforehand about their medical history and have a plan in place to adequately treat them.
In a large study comprising of more than one million IBD patients, it was shown that being a female, having diagnosed with IBD as a child or a young adult and having a diagnosis of Crohn’s disease have been associated with higher likelihood of suicide attempts and suicide death 4.
Mental disorders in IBD are seen across all age groups but are somewhat more pronounced in those individuals whose disease is not well controlled or have not achieved remission since their initial diagnosis. Majority of IBD cases are generally diagnosed at a young age, several times in college students. Unfortunately, we also see frequent occurrence of mental disorders in younger age groups. Students have additional mental stressors when they have a chronic bowel condition like IBD. Many feel that they the lack of freedom in choosing to eat anything they like when they go out with friends or their need for frequent bathroom breaks, which can sometimes hinder them from participating in activities they choose or in making new friends. Many feel embarrassed to disclose their medical conditions to new friends or acquaintances, this perhaps cannot be stressed enough among those with an ostomy bag.
This leads to a state of inadequate social/family support which may push at risk students into developing mental conditions like depression, anxiety or eating disorders.”
NH: “Any advice for caregivers of young patients–who may have concerns about their child/teen/young adult and are unsure how to make sure their child is not dealing with anxiety/depression, but don’t want to overstep or upset their loved one?”
Dr. ZaZ: “It is very important for not just the physicians but also the caregivers involved in managing IBD in young patients to recognize signs of depression or other mental disorders. Do not always assume that if an individual is constantly tired, has disturbed sleep or looks depressed, that it is due to their IBD. Several times these are early signs of depression, and these young individuals need the support and help that they deserve to address these issues. Perhaps adult patients who have depression may recognize it and seek help, but kids or teens generally do not perceive these signs as an abnormal expression of behavior and may not even disclose them to their loved ones. Caregivers who attend clinic visits with pediatric specialists should bring up any unusual behavior they notice about their child and discuss it with the provider.”
NH: “How can mental health issues exacerbate IBD symptoms?
Dr. ZaZ: “Studies have shown that individuals with mental disorders who have IBD have a higher chance of developing IBD flares, they require escalation of their therapy and have increased incidence of death 5. (See Reference 5) This is quite alarming and should be brough to the attention of providers who take care of IBD patients. “Providers are not just prescribers”, simply writing prescriptions for medications, some of which are very expensive, is not enough to heal the patient. IBD is a chronic disease which lasts a lifetime, and medications alone cannot be the solution. Providers need to step up and participate in the mental well-being of their patients. If they are not able to address the mental health related issues themselves then referring to experts in the field is perhaps the best alternative approach. Depression may cause patients to skip their infusion visits or physician visits, uncontrolled anxiety or paranoid states may make them apprehensive about any therapy that they have been appropriately prescribed and may even stop the treatment. IBD patients with eating disorders may starve themselves or eat uncontrollably causing worsening of their bowel condition. These eating disorders are commonly present among young and female IBD patients who have body image disturbance 6.”
NH: “How is anxiety and depression typically managed in patients with IBD? (Medication, talking to a psychologist, etc.?)”
Dr. ZaZ: “The first step to treating anxiety and depression is to approach a provider with whom you are comfortable to freely express your medical complaints, problems, or any issues that you would like to discuss. Psychotherapy or behavioral therapy is probably the preferred approach in mild cases but in individuals with more profound symptoms, medications may be preferred in addition to psychotherapy. Finding a good therapist and setting up sessions at frequent intervals is important. In severe cases with suicidal ideations or attempts perhaps hospitalization may be required.
Multiple medications are commonly used for treating anxiety and depression. A PCP or psychiatrist may be able to find the right one for you, and please make sure you follow up with these providers since these medications may need to be monitored for their side effects and to adjust the dosage. Sometimes GI physicians may feel comfortable to prescribe these medications, but that may generally not be true for majority of gastroenterologists.”
NH: “As a GI, how do you try and facilitate positive relationships with your patients to help ensure they feel at ease with taking on their disease, managing it, overcoming flares/surgery, etc.?”
Dr. ZaZ: “My first step towards approaching IBD is to make sure that the symptoms that my patients are complaining of are truly from IBD and not from IBS or any other illness. Once IBD is diagnosed, I have a detailed visit with my patient with their new diagnosis. I usually encourage them to read up as much as they can and write down questions about their illness prior to this clinic visit. During the visit I start by giving a broad overview of what IBD is and the mechanism of disease process.I do this little exercise of talking about mechanisms by which IBD develops because I have noticed in my experience that several patients feel guilty about having their illness, and believe that in some way it was ‘their fault’ that they developed IBD. We then focus our attention on what are the available treatments why I think the recommended treatment would be a good fit, so the patients can make an informed decisions about their choice of therapy. I highlight the signs or symptoms they need to look out for that could suggest a complication or flare up of IBD. We provide them access to communicate with our clinic team if they have any questions; if they are concerned about a flare or if they suspect side effects from their therapy. Next, I answer questions they may have come up with during my discussion or from their personal research prior to the visit. Once the questions are answered I provide them with written material about their illness. I frequently encourage our patients to join patient support groups and direct them to online sources for information about IBD like the website for the Crohn’s and Colitis Foundation.”
NH: “Why is it so important to focus on whole person care–and recognize that IBD impacts more than the GI tract?”
Dr. ZaZ: “If we understand the mechanism by which IBD develops in the body, we can say that a dysfunctional immune system perhaps has the central role in the disease process. This immune system is connected to the entire body, it’s in our blood, guts, and other organs. Abnormal functioning of this immune system is likely to affect the entire body, although in IBD this abnormality primarily targets the bowels. But we frequently encounter what are called the “extra-intestinal manifestations of IBD”. These are referred to conditions that cause joint pains, skin rashes, eye redness, oral ulcers, liver disorders and other symptoms or signs that can be encountered in patients with IBD. Beyond these, patients with IBD are shown to be associated with higher incidence of mental disorders, pregnancy-related complications, chronic fatigue, and vitamin/mineral deficiencies. The effect on the bowels by this disease has a major impact on what one can eat, thereby limiting their nutritional intake. It is only fitting to treat these individuals as a whole, and not just their bowels. In terms of methods of treatment, apart from allopathic medical therapies, several other modalities of treatment are now being explored and accepted. Addressing diet and exercise is an important aspect to maintain healthy lifestyle in general, and especially so in patients with IBD. Running or other forms of cardio-based exercises have been shown to have a positive impact on the disease. Consuming healthy dietary supplements, like probiotics have been shown to be beneficial. Relaxation techniques and meditation also help keep oneself stress free, and perhaps prevent development of mental disorders as well.
One last thing we must also remember is that in today’s world social media can contribute to a lot of mental stress and anxiety, especially where disinformation campaigns can lead to confusion and poor choices in life. Hence it is important to have reliable resources to gain knowledge about IBD and its therapies. Sources like the Crohn’s and Colitis Foundation and its members like Natalie have been leading in educating several individuals through various platforms. In summary, eat healthy, exercise regularly, educate yourself about IBD, try to relieve stress and follow up with your doctor for medical care.”
I hope this article sparks a conversation and allows you to feel less alone in your mental health struggles. The findings show it’s anything but “just in your head.” Your feelings, fears, and struggles are valid. You are loved. You are not a burden. You are worth it. You matter. We need you here. Remember that.
If you’re thinking about suicide, are worried about a friend or loved one, or if you would like emotional support, call 988 any day of the week, any time. The 988 Suicide and Crisis Lifeline (formerly known as the National Suicide Prevention Lifeline) provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week, across the United States.
Reference Guide List
1: Coates, M. D., Mahoney, C. R., Linden, D. R., Sampson, J. E., Chen, J., Blaszyk, H., Crowell, M. D., Sharkey, K. A., Gershon, M. D., Mawe, G. M., & Moses, P. L. (2004). Molecular defects in mucosal serotonin content and decreased serotonin reuptake transporter in ulcerative colitis and irritable bowel syndrome. Gastroenterology, 126(7), 1657–1664. https://doi.org/10.1053/j.gastro.2004.03.013
2: Tarar, Z. I., Zafar, M. U., Farooq, U., Ghous, G., Aslam, A., Inayat, F., & Ghouri, Y. A. (2022). Burden of depression and anxiety among patients with inflammatory bowel disease: results of a nationwide analysis. International journal of colorectal disease, 37(2), 313–321. https://doi.org/10.1007/s00384-021-04056-9
3: Umar, N., King, D., Chandan, J. S., Bhala, N., Nirantharakumar, K., Adderley, N., Zemedikun, D. T., Harvey, P., & Trudgill, N. (2022). The association between inflammatory bowel disease and mental ill health: a retrospective cohort study using data from UK primary care. Alimentary pharmacology & therapeutics, 56(5), 814–822. https://doi.org/10.1111/apt.17110
4: Xiong, Q., Tang, F., Li, Y., Xie, F., Yuan, L., Yao, C., Wu, R., Wang, J., Wang, Q., & Feng, P. (2022). Association of inflammatory bowel disease with suicidal ideation, suicide attempts, and suicide: A systematic review and meta-analysis. Journal of psychosomatic research, 160, 110983. https://doi.org/10.1016/j.jpsychores.2022.110983
5: Fairbrass, K. M., Gracie, D. J., & Ford, A. C. (2022). Relative Contribution of Disease Activity and Psychological Health to Prognosis of Inflammatory Bowel Disease During 6.5 Years of Longitudinal Follow-Up. Gastroenterology, 163(1), 190–203.e5. https://doi.org/10.1053/j.gastro.2022.03.014
6: Stoleru, G., Leopold, A., Auerbach, A., Nehman, S., & Wong, U. (2022). Female gender, dissatisfaction with weight, and number of IBD related surgeries as independent risk factors for eating disorders among patients with inflammatory bowel diseases. BMC gastroenterology, 22(1), 438. https://doi.org/10.1186/s12876-022-02526-0
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.
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.”
You’re told by your gastroenterologist you need a biologic to treat your IBD and that medication is received through infusion. Thoughts race through your mind–what’s it going to be like hooked up to an IV receiving your medicine? It’s completely normal to feel anxious, nervous, and uncertain. I’ve done self-injections since 2008, and never have needed to receive my medication through infusion, but I know that’s not the case for many.
This week on Lights, Camera, Crohn’s we hear from patient advocate Jenna Ziegler. Jenna was diagnosed with ulcerative colitis in 2014 and has recently added enteropathic arthritis and a rare autoimmune non-alcohol-related liver disease called primary sclerosing cholangitis (PSC) to the list.
Over the years, Jenna has learned how to prepare for infusions so that she can walk into the outpatient center with confidence. Check out her empowering tips for doing so—whether your infusions are at a medical center or at home!
Do Your Prep Work
Know if you’ll be given Benadryl. Some biologics require pre-medications that help prevent adverse reactions. These meds may include Tylenol, prednisone, or Benadryl. Find out ahead of time if you’ll be given Benadryl. Knowing you’ll be sleepy at and after your infusion can help you decide if you’ll need a driver and if you need to make arrangements for the rest of your day.
Plan out the rest of your day. You may be tired after your infusion—especially if you’re given Benadryl! Weeks before your infusion, make proper post-infusion arrangements .Maybe you’ll want to take the day off work or arrange for childcare so you can take a long nap or reschedule that evening’s outing to another day. Jenna encourages you to schedule time in your calendar to recuperate after the infusion.
Know your dosing and required blood work. By knowing your dose and what labs that will be drawn, you’ll feel more in control of your day. Ask your doctor for your dose and what (if any) labs the nurse will draw at your infusion. Then, when you arrive, you can double check that these things are correct.
The Day Before Your Infusion
The day before your infusion is critical: make sure you’re drinking enough water!
“Infusions require IVs, so it may ease your nerves to do everything in your power to make your veins as plump and visible as possible. I drink one gallon of water the day before my infusion. I chug 32 ounces every three hours and set reminders to keep me accountable. When I do this, my infusion nurse almost always gets my IV in with one poke! Also, a nurse told me that sodium retains water, so eating salty snacks the day before will also help keep water in your veins. Of course, run this by your doctor first!”
The Day Of your Infusion
Today’s the day! Here are three tips to help remove some of those infusion-day nerves.
1. Eat a proper meal. The day of your infusion, you want to fuel your body with healthy foods. This means a balanced meal with both protein and carbs. This is especially important if you’ll receive Benadryl or get blood drawn!
2. Dress in layers. One of the best things you can do for yourself is make sure you’re comfortable for your infusion.
“I find infusion centers very cold, so I suggest you dress in layers—just make sure you choose something where your veins are easily accessible. I tend to wear warm shoes, comfy pants, a long-sleeved shirt over a tank top, and a sweatshirt. Cozy and practical!”
3. Bring entertainment. Different biologic infusions vary in length, so if you’ll be there for a while, bring something to keep you entertained! Some of Jenna’s personal favorites are: books, journal, laptop, headphones, and snacks. If you receive home infusions, be sure to gather your supplies by your couch or the location in your house where you plan to receive the medication.
At Your Infusion
When you arrive at your infusion center, you’ll check in, probably sign some forms, and your nurse will show you to your chair. It’s okay if you’re feeling nervous. But remember, as the patient, you are empowered. Here are Jenna’s top tips to ease your nerves.
Ask for a warm blanket and pillow. Not only will this help you get comfortable, but placing a warm blanket over your arm will help prepare your vein for the IV.
Tell the nurse which arm/vein you prefer. Don’t be afraid to tell your nurse which vein you want them to poke. They’ll probably ask, but if they don’t, don’t be afraid to voice your preference.
Take your Benadryl slowly. If Benadryl is one of your pre-meds, they’ll probably either give you a pill or push it through your IV. If it’s via IV, ask the nurse to go slowly. Pushing the syringe too fast may make you feel lightheaded or nauseous. Again, don’t be afraid to speak up.
Confirm the info on your medication bag is correct. When the nurse is hooking your medication bag to your IV, it may make you feel better to see the label for yourself. Ask the nurse to show it to you, and you can personally ensure it has the correct patient name, medication, and dose.
After Your Infusion
You did it! Your infusion is over. Best of all, you’ve already planned out the rest of your day, so now you don’t have to stress about your to-do list.
“I encourage you to listen to your body—you might want to take a nap, take a hot bath, or have a relaxing night in with your family and pizza delivery. You’ve had a long day and you deserve to destress and relax.”
Remember, You Are Empowered
Over time, getting your infusions will become easier. Normal. Routine. And, one day, maybe even relaxing.
“I would have never thought that I’d find peace in my infusion days—these days that once made me nervous and stressed. But I now see my infusion days as relaxing, self-care days. This will come with time, and it starts with one thing: remembering that you are strong, empowered, and your own best advocate.”
Managing and treating inflammatory bowel disease (IBD) with medication is often necessary for those who live with Crohn’s disease or ulcerative colitis. But for many, it’s a difficult decision that often comes with pushback and worry. This week on Lights, Camera, Crohn’s we hear from well-respected registered IBD dietitian and ulcerative colitis patient extraordinaire, Stacey Collins, about how she breeches this subject with patients and caregivers and how she utilizes her own patient journey to help empathize with those who are struggling to take the plunge.
Holding space and helping patients accept their reality
When it comes to needing medication, oftentimes conversations are harder on parents or caregivers, than the patients themselves. Stacey tries to encourage caregivers to find the support they need to accept the reality of their loved one needing medication to have a quality of life.
She says, “If someone wants to work with me on their nutrition “instead of medication,” I try to understand where the person is coming from. Usually, it’s from a place of fear, or uncertainty, and I really affirm that experience and hold space with them. Medications, side effects, accessibility, and adherence…it can all be so…heavy. There’s plenty of room to hold those two truths: meds are hard. And they’re often necessary.”
Stacey says when having these conversations she always begins with listening and holding space and then she puts her clinical hat on to ensure that it’s understood that these diseases are progressive and inflammatory, and that science shows that it’s best to get ahead of the inflammation, often with a medical provider, rather than chasing down the symptoms and the inflammation while quality of life suffers.
“I see my role as a registered dietitian as supportive of both treatment goals: helping patients have a quality of life, while assisting with the inflammation. But, I can’t provide medical nutrition therapy without the medicine component, and since diet isn’t ultimately the cause of these diseases, it works best as a complementary therapy with the support of a GI team; not as a cure.”
If patients aren’t trusting of their GI provider, Stacey tries to encourage them to seek out an IBD-specific GI doctor, if possible, while ensuring there’s also frequent follow-up with their local GI team, if they’re living somewhere rural. She says a lot of these conversations are born out of not feeling supported by GI providers, so she tries to help patients find GI’s who specialize in IBD, who are that are a better match.
“I’m upfront about not feeling comfortable about using nutrition in lieu of medication. That puts a lot of non-evidence-based pressure on my job as a dietitian, removes a lot of joy from the experience of eating, and further perpetuates the stigma associated with medicine. IBD is not a preventative metabolic disease, and patients should never feel blamed for eating their way into an autoimmune disease diagnosis. It’s simply not true, and it’s harmful messaging.”
How Stacey’s IBD journey inspired her to become a registered dietitian
At the time of her IBD diagnosis, Stacey was desperate for anything to stay alive. So, when it was either steroids, a biologic infusion, or having her colon removed, she was thankful the outcome wasn’t terminal.
“I happily agreed to the meds without even thinking about it. Within a month, I felt like a “normal” college student again, and honestly the changes that I experienced within my body due to the disease itself (losing my long, thick hair in clumps from malnutrition; seeing my body change rapidly to look emaciated), were far more difficult than any side effects from the medication. I felt like it was very much a night-to-day scenario, and I was so grateful for the medications as a result.”
But once she started feeling a little bit better and opened up to some family members about her disease, she heard a lot of negative chatter about the aggressive nature of the IV meds that she had “chosen” and thought, “Hmm. Maybe I’ll try juicing and holistic wellness,” never mind the fact that she was 21 years old with no professional support in making that decision.
“I quickly ended up hospitalized and needing an emergency Remicade infusion (the good ole days when hospitals kept it stocked in their pharmacy). The attending GI doc gave me some tough love, and really took the time to explain to me how “this is lifelong” and “you can’t be late on an infusion, because your immune system will lose response to the medication” and that really clicked for me. It was a hard moment and a tough pill to swallow, but it was a lesson of “maybe my well-meaning family members don’t know what’s best for me, and I’m going to have to trust my body, this med, and this doctor.”
In the years after, she went on to lose response to medications, start new ones, and it was always a night-to-day scenario all over again.
“I think this black/white sort of dichotomy of my experience on and off medication helped me accept that this was my reality pretty easily compared to others’ experience perhaps where maybe they’re less sick and the meds (not to mention the insurance gymnastics required to obtain them regularly) might seem daunting and leave people thinking, “Do I really need this?”. I was able to truly see that meds (and a whole GI team advocating on my behalf repeatedly for access to them) absolutely are the reason I’m still here.”
The challenge of receiving infusions
Infusions were psychologically a little “icky” for Stacey at first. She went from being a young, fun college student on campus with peers one minute… to driving 5 miles away to an infusion center where she was the youngest by a longshot, usually next to someone twice her age receiving chemotherapy or dialysis, and then she would go back to campus and pretend like nothing had happened.
“My boyfriend at the time (now husband) and I had a favorite haunt: Homeslice Pizza in Austin, Texas. Before my diagnosis, we were there on a date, and I spent the whole time in the bathroom. This was one of those places where there’s only one toilet…so I’d immediately finish and get back into line for the bathroom.He was really kind and said, “It’s okay! We’ll take it to-go, and when you’re feeling better, we’ll come back and have a pizza day and celebrate!”
Stacey says they were both so grateful for the night-to-day improvement with medicine that they named infusion days “Pizza Days” and this gave her a reason to look forward to infusion days, instead of dreading them. Over the years, we started inviting our friends to “Stacey’s Pizza Day” everywhere we moved: from Austin to Houston to Oklahoma City, and her friends had so much fun celebrating her infusion schedule every 2, 4, 6, or 8 weeks.
Utilizing research to help back the need for medication
As a dietitian, medications are out of Stacey’s scope of practice. As a patient, she knows them to be helpful. She tries to connect patients to resources so they can make informed decisions for themselves with a GI team that they trust. Resources like the IBD Medication Guide on the Crohn’s and Colitis Foundation’s website are really useful, as well as IBD And Me if patients and caregivers are having some cognitive dissonance about finding a biologic that feels right for them.
“Then I’ll ask them about what their takeaways were. Sometimes, talking out these conversations really helps patients find useful, effective ways to communicate to their GI doctor, so while I understand that it’s not my role as a dietitian to provide guidance on medication selection, I’m happy to help patients sift through what sort of questions or concerns they need to express to their GI doctor. So often as patients we brush off our concerns or our fears because we don’t want to be a bother, and I really encourage patients to have these hard conversations with their GI provider; A good doctor will want to know.”
Why taking medication is not the “easy way out”
It’s fine to struggle with medications; medications can be hard. It’s not fine to feel shamed out of using them under the dogma of gut-health and over-supplementing, and unfortunately there’s a lot of misinformation in the IBD space of people professing left and right how they’ve “healed their gut” naturally.
“I feel like I’m uniquely in the middle of loving the science of nutrition and needing modern medicine to still be here. For me, it’s been damaging and debilitating to also make society comfortable with my need for medicine for so many years until I learned to let that go. Now I speak up when I can if it’s worth my energy. There’s nothing easy about needing medicine for life to stay alive, and the people who say otherwise just haven’t seen that in their life, and that’s okay. It’s not okay for them to think their experience can be applied to all people with gut health issues though. Would also love to have clarification on “gut health.” IBS? SIBO? Constipation? Nervous stomach? Gas? IBD? These are different things that can’t have the same, convenient solution.”
How we can rely on nutrition as a valuable tool in managing our IBD
Stacey sees nutrition as the shiniest, easiest available tool in a toolbox full of other tools: mental health, sleep, pain management/PT/movement, medicine, and surgery.
“Sometimes when I work with IBD patients, nutrition is not even the most important tool- it just depends on what’s going on in each person’s life. Maybe surgery is the most important tool, or it’s mental health. Different life moments with IBD will require different tools, and while my obvious favorite tool is nutrition, the other tools mean a lot, too.”
Nutrition is a tool that is compatible with all the other tools, and nutrition interventions might take some fine-tuning, mindset shifts, and some tailoring to each person’s lifestyle. But the beauty is that it can be picked up as needed, and that’s nutrition’s superpower: it’s a tool, and it’s also a bridge for connection, safety, comfort, and a quality of life within the context of IBD.
“I teach my patients individualized nutrition for IBD as the remissive/relapsing beast that it is, not just for what it looks like during the time that I work with them.”
Stacey’s advice for patients
Expect non-linear. Try not to compare. Feel the feelings, let the energy and the emotion move through you whatever way it needs to, brace for impact, and know you’re still here. Make room in your day to celebrate a good one!
Recognizing there can be two dualities that are true. You can hate needing medicine and be grateful that they kept you alive. You can feel deep sorrow for losing your health before you were old enough to acknowledge its presence and embrace this new, unprecedented, post-op reality, even though it’s different than what you expected.
Embrace your emotions. You can cryabout the reality of having needed an ostomy and be thrilled to eat a chocolate croissant in a moving car without pain BECAUSE the ostomy granted you a pain-free eating experience. You can be fearful about choosing a j-pouch and celebrate that it’s possible and wild to live with one.
Resenting the diagnosis is normal. You can resent your IBD diagnosis and be grateful for who you are with it (and thankful for all the people you’ve met because of your diagnosis!).
Lean on support groups and the IBD family. The support groups through the Crohn’s and Colitis Foundation have been helpful for a lot of Stacey’s friends, and for her personally. She’s a huge fan of Spin4 and Team Challenge. Finding a safe, welcoming community who gets your reality (wherever that may be!) can be powerful and uniquely helpful.
This post is sponsored by Smart Sharps Bin. All opinions expressed are my own and do not necessarily reflect the position of HealthBeacon plc or Hamilton Beach Brands, Inc.
I started doing my self-injection more than 14 years ago, long before I became an IBD mom. I went from being a single 20-something alone in my apartment mustering up the strength… to having a family around me while I receive my medication. The experience has changed greatly and so has my perspective.
There are many reasons why I have chosen not to hide my injections from my three children. Crohn’s disease impacts more than just the person who lives with it, it’s a family disease. Even though my children are ages five, three, and 16 months, there’s a deep level of understanding and empathy that starts from a very young age. My disease is part of me. I always try to be transparent about my health and well-being. I have never said “I have a disease” since my children wouldn’t understand that, but I try to explain that sometimes my “tummy” hurts and that “Mommy’s shot keeps me healthy, safe, and strong.”
My process for self-injecting every other Monday
Once dinner is over, I pull my injection out of the fridge and let it warm up on the counter, out of the reach of my kids. I’ve always preferred to do my shot at night so I can rest afterwards and have a sweet treat like ice cream as a reward after. After about 30 minutes to an hour, I head over to the couch, and my children hover around me. They watch as I wipe the alcohol swab counterclockwise and oftentimes help me hold the ice pack on my thigh for five minutes. Then, once it’s time to pull the top and bottom off the injection and get down to business, I let them know they need to give me some space and not to move or make any jerking motions. I pause. Smile sweetly at them and start my countdown, slowly and calmly…one one thousand…two one thousand…all the way to 10. They smile back at me and bounce around when I have finished self-injecting. They immediately want to see if I’m bleeding and want to make sure I’m not in pain and don’t need a band aid. I bounce up off the couch and act like it’s just another part of our bedtime routine.
Since we’ve been doing this “process” for as long as they can remember, it’s part of our family, and part of what it’s like for me as an IBD mom. My kids are my greatest cheerleaders and my reason “why” for everything I do in life.
The sweetest distraction
I find it empowering to look into their innocent eyes and joyful faces while I self-inject, it’s the best distraction. I used to stare at a focal point on the wall, a photo of someone who inspires me, or a show on the television, but looking at my kids—my greatest motivation to push through the difficult moments—is the best medicine, literally and figuratively. I make a point to smile at them and never show signs of weakness, so they see that I’m ok and doing something positive for myself. This has become a lot easier since the formula for Humira changed and is no longer painful. I used to really struggle to smile when the medication burned the first year and a half of my oldest son’s life.
When my injection used to be painful, my son would see through my smiles. He would often hold a toy and pretend to give himself his own injection. After I was done doing my shot, he would come up and kiss my thigh and say he loved me. At this point he wasn’t even two years old—kids of IBD parents just “get it,” their empathy and understanding of health is incredibly unique and special.
How that strength carries over into my children’s’ lives
Since my kids see me self-injecting every other Monday, they’ve become quite desensitized when it’s time for their own vaccinations at the pediatrician. When my older two children get their flu shots, they take them like champs. The nurses always laugh that they’re braver than some teenagers. When my kids smile and tell me they’re strong like me when I do my shot it’s bittersweet. While I wish they didn’t have to see me self-inject, it’s building their character and understanding of health in a beautiful way.
When the Pregnancy Inflammatory Bowel Disease and Neonatal Outcomes (PIANO) study first launched in 2007 the main goal was to understand the safety of anti-TNF biologics like Humira and Remicade, and thiopurines for women throughout pregnancy and postpartum. As an IBD mom of three, I was able to participate with my youngest who is nearly 16 months old. The experience was something I am extremely grateful for. This incredible research for our community that is going on daily, helps guide decision making for treatment, while easing our fears as we embark on motherhood while managing IBD.
PIANO 2.0 is now underway and this week on Lights, Camera, Crohn’s I share everything you need to know about the updates to the ongoing research project, how you can participate, what the findings have shown thus far, and the goals for the future. Esteemed gastroenterologist, Dr. Uma Mahadevan, continues to lead the charge and help pave the way by sharing discoveries and findings.
“With new funding from the Helmsley Charitable Trust, we are really able to transform PIANO and try to reach a broader group of patients and answer more challenging questions. These questions include the safety of small molecules (tofacitinib, upadacitinib, ozanimod) and the newer biologics (ustekinumab, vedolizumab, risankizumab) as well as expand into studying the placenta and the impact of IBD, the response to COVID vaccine in pregnant IBD patients, and following children out to 18 years of age to look at long term safety and outcomes. The more you know, the more questions that come up.”
What’s new with PIANO
All women with IBD who are pregnant in the United States are invited to enroll. Specific interest in enrolling women on newer biologics (Stelara, Skyrizi, Entyvio, biosimilars) and small molecules (Xeljanz, Rinvoq, Zeposia) even if it was within 3 months of your last menstrual period but not during pregnancy. PIANO 2.0 is also expanding to look at the safety of aspirin in pregnancy (to reduce the pre-eclampsia rate) and well as how IBD women heal after a c-section and vaginal delivery.
There are new and improved patient and site interaction updates as well. There’s now a patient portal that enables women to enter their data directly, a Twitter page (@PIANOIBD) for research findings and updates, and a website with outcome data right at your fingertips.
The medical sites participating have also expanded to include USC, University of Miami, and the University of Maryland. Dr. Mahadevan says they realized most patients in PIANO were Caucasian and of higher socioeconomic status.
“We know pregnancy outcomes differ by race and socioeconomic status and we need to understand if that also applied to IBD pregnancies – does it make those differences more extreme or is there no impact? By expanding to sites with a far more diverse population, we will be able to better answer those questions.”
As far as the Patient Portal, rather than filling out paperwork and participating in phone interviews, now women simply answer questionnaires on the portal when they enter the study, every trimester, after delivery, at months 4, 9, and 12 of baby’s life and then once a year thereafter. Thanks to the Patient Portal, women can enroll remotely across the United States and don’t have to be at an IBD Center to participate.
Pushing the research further
The overarching goal with PIANO 2.0 is to gather data points from newer biologics and biosimilars and look at the safety of small molecules. So far, 2,012 women with IBD have participated in PIANO. The hope is to have at least 150 newly pregnant women participate each year.
“With biologics we generally feel they are all low risk as they won’t cross the placenta in the first trimester when the baby’s organs are forming. Small molecules, however, are more concerning as they will cross during that key period of organogenesis. However, for some women that is the only therapy that works, and they must make difficult decisions,” explained Dr. Mahadevan.
Once the baby is born, the research will look at if the child develops any infection issues, malignancies, neurological issues, and immune diseases like IBD. There are some questions about basic diet as well. Having long-term data and a fuller picture of the future for IBD moms is priceless. By participating we’re truly paving the way for IBD moms now and in the future.
Dr. Rishika Chugh recently shared a presentation at the American College of Gastroenterology conference that Dr. Mahadevan co-authored that looked at data on 47 women on Stelara (ustekinumab) and 66 on Entyvio (vedolizumab). Those women were compared to moms not on biologics/thiopurines and those on anti-TNF therapies.
“There was no increase in harm from being on Stelara or Entyvio compared to those groups. Interestingly, those on Stelara had lower rates of preterm birth and C section. Numerically, there were also less infections on Stelara though that was not statistically significant.”
Participate in a Townhall Discussion with Dr. Mahadevan: Starting a Family with IBD: What Men and Women with IBD Should Know about Conception and Pregnancy
Save the date for a discussion taking place Thursday, December 15 at 6:30 pm Pacific Time. Click here to register for the free event.
I’m excited to be serving as one of the IBD patient advisors on the project, alongside fellow IBD moms Jessica Caron, Brooke Abbott and Amber Tresca (from IBD moms). We’re looking forward to providing the patient perspective and helping to guide the conversation. Jess and I were on biologics in pregnancy and have previously participated in PIANO. I had the opportunity to participate in IBD research studies with all three of my kids and it’s extremely empowering to know you are helping to change the future of care for women in our community and providing women with the added support we need while navigating pregnancy and motherhood with a chronic illness.
This article is sponsored by Health Beacon. All thoughts and opinions shared are my own.
When I think back about the scariest moments I’ve experienced since my Crohn’s disease diagnosis more than 17 years ago, doing self-injections and the loading dose process tops the list. To go from being someone who didn’t rely on a biologic medication to function and treat my chronic illness, to mustering up the strength to inflict pain on myself, it took getting used to, to say the least.
I’ll never forget what it was like when I was first told I would need to choose between a self-injection and an infusion while lying in a hospital bed with a hardcore flare. It felt like trying to pick the lesser of two evils at the time. I chose self-injection for privacy reasons because at the time I was a television news anchor and hadn’t shared that I had inflammatory bowel disease (IBD) publicly. I also have terrible veins and the thought of having to get IVs and be hooked up for hours to a medication seemed less convenient and like more of a reminder that I was unwell. During that hospital visit it took 8 tries to start my IV, so the trauma of that helped guide my choice to do injections instead.
Going the self-injection route
When I started my biologic in 2008, there were only two medications on the market to manage and treat Crohn’s disease – Humira and Remicade. The injection (I was prescribed) at the time had a reputation for being painful and the loading dose involved four injections, back-to-back in one sitting. When my mom and I walked into my gastroenterologist’s office so the nurse could instruct me on how to give myself shots, I was shaking like a leaf. In the moment I wasn’t sure how I was going to muster up the strength not knowing how it would feel. My palms felt sweaty holding the foreign injector pen in my hand. I wasn’t sure how badly it was going to hurt. I was fearful of the side effects and what the heavy-duty medication was going to make me feel like. I wanted the nurse to do the first injection for me, and she wouldn’t. In the moment that made me upset, but now I am so grateful she put the onus and trust on me. I’ve never had anyone do my injections but myself.
I pressed the button and instantly felt the liquid fire pain shoot into my leg. I couldn’t believe I was expected to do that three more times. But I did. When the appointment was over, my mom and I hugged in the hallway. I felt like I had been through battle. It was terrible. Knowing that I had to do another two injections in two weeks loomed over me. Unfortunately, my initial loading dose made me very sick. As my body got acclimated to the medication, I felt weak and could barely walk up 13 stairs to my apartment. I had to miss work and social functions as my body got used to medicine.
Going through another round of loading doses
Fast forward to 2015. I had bowel resection surgery that involved the removal of 18 inches of my small intestine, appendix, and Meckel’s diverticulum. My care team had me go off my medication for three months—prior to surgery and after. Because of that, I had to do another loading dose and re-start the process. Even though I was already more than 8 years into doing the same injection, when my GI told me I would need to do another loading dose, my mind immediately raced back to 2008 and what I went through. I was so emotional I had to call into work sick that day. Luckily, this time around was a lot less scary, and I had more confidence in the process and knew exactly what to expect. I didn’t have any side effects after this loading dose, and I was back on track to my normal injection routine.
The shift to “pain-free” injections
The first couple years I did my injection, I would count down the days until the next one was due with dread and worry. I spent more than a decade on the painful version of the medication. In 2018, the formula for the medication was changed for patients in the United States, taking out the sting and making the gauge of the needle smaller. The loading dose now “only” involves two injections versus the four.
The “pain-free” version of the medication has completely changed my patient experience for the better. I no longer dread my shot. The process feels simple and nearly effortless. Even though I’ve been lucky to be afforded the opportunity and access to this version of the medication, I can still remember how it used to feel. The anxiety and emotions the injection would cause, and what I dealt with for 10 years of my life every other Monday.
Self-injection through pregnancy and motherhood
I am an IBD mom with three young children. Ages 5, 3, and 15 months. When I was first pregnant in 2016, it took a lot of guts and felt like an emotional rollercoaster injecting a biologic knowing there was a life growing inside of me. As the weeks turned to months and my belly got bigger and bigger it became more emotional feeling kicks and movement in my stomach while I was pressing the button to give myself the shot. Until my son was 1.5 years old, he witnessed how upset the injection would make me at times and would hug me and watch with empathetic eyes from a very young age.
When I tried the pain-free injection in 2018, I shot a video the first time I experienced it. This time around, I was pregnant with my second child. You can watch the emotional video here. As I express in the video, it was lifechanging to know that throughout future pregnancies and through motherhood, my children wouldn’t ever see their mom crying or scared while doing injections anymore. Now, when I do my shots, I have a big smile on my face and my children see their mom through a much different lens.
Keeping your eye on the prize
Whether you are gearing up for your loading dose or a veteran self-injector, it’s an experience that can be hard to put into words unless it’s your reality. It’s normal to grieve and be upset about your situation. Try to breathe. Go to your happy place. Get a focal point to focus on and know that you are doing all you can to help keep your disease under control and live the fullest life possible. Short term pain, long term gain in every sense of the word. Being scared no matter where you are in your patient journey is understandable, but like all pain and fearful experiences, they too shall pass.
Click here to learn more tips about self-injecting.
This article was sponsored by ImYoo. All thoughts and opinions shared are my own.
Precision medicine is a common term we hear when it comes to treating IBD now and into the future. But have you heard about citizen science as it relates to IBD? Citizen science gives everyone a chance to play an active role in research. Whether that’s coming up with research ideas or taking part in the experiments themselves, citizen science makes it possible for you to have a direct impact. A company spun out of Caltech is taking citizen science to a whole new level. ImYoo is debugging the human immune system by using at-home blood collection kits and single RNA sequencing to discover insights about autoimmune diseases.
Tatyana Dobreva and her co-founder, David Brown, worked at NASA prior to switching gears from space to focus on biotech.
“The COVID-19 pandemic accelerated the process and highlighted for us what was missing. Since the pandemic, people are paying more attention to their immune systems. Immunology is still as much a mystery as outer space, so that was the next frontier we wanted to get involved in. We feel that the best way to take on that challenge is by building a database across time, for every individual – that is what can make personalized medicine possible and that is why we’re so focused on making this research accessible.”
Since IBD presents uniquely in each person and changes over time, it’s a rollercoaster journey of highs to lows, flares to remission. With all the twists, turns, and complexities that ulcerative colitis and Crohn’s create for each of us in the patient community, following a roadmap can seem impossible.
“Precision medicine tries to apply scientific tools to take out some of this guesswork. A lot of those tools look at the genetic material you inherited from your parents. We’re adding another tool to that kit by looking at the expression of those genes. For IBD, we want to figure out which genes and cells are acting up during a flare,” said Tatyana.
By answering these key questions, clinicians have told Tatyana that it will help gastroenterologists make more informed decisions when it comes to treating and managing IBD and patients can feel more empowered every step of the way. While making the decision to start a biologic can be overwhelming for patients, precision medicine is a way to have powerful data to support the choice to move forward with that treatment plan.
Tracking the immune system over time
ImYoo’s focus is tracking a person’s immune system over time. Researchers do this by looking at RNA expression. Tatyana shared a fantastic analogy with me. She said that DNA is like the menu you get at a restaurant, RNA is your order, and proteins are your final meal.
“There are a lot of companies that look at your blueprint, or in this case your menu – all the possibilities. Our team at ImYoo looks at your cells’ orders over time. That way we can capture how the different immune cells in your blood are changing,” said Tatyana.
IBD flareups are of specific interest to both clinicians and patients. Even after living with Crohn’s disease for more than 17 years, the unpredictability of the disease is still one of my main struggles. The looming thoughts of a flare are always with you.
“There is not much literature on what happens in the immune system during a flare, and we think there are a lot of powerful biomarkers that could be discovered if IBD patients could track themselves during flares and when they feel “normal.”Our IBD study will ask IBD warriors to sample themselves both during and outside of flares,” said Tatyana.
ImYoo built a solid foundation for studying autoimmunity because researchers were able to build a database of “normal” immune systems.
“Being the first to do this for single-cell data means we can provide a helpful reference to enable more single-cell studies for the future. By having a large database of “healthy” immune systems, we can provide more context as to what having a flare means with respect to dysfunctional immune systems.”
How IBD Patients Can Participate
ImYoo’s IBD study was inspired by conversations researchers had across Reddit and in a Facebook group. Patients in the community offered invaluable insights about what to research.
Emily Harari works as a liaison between the scientific team at ImYoo and the patient community. She says if a person demonstrates interest in participating in the study, a screening process will take place to determine eligibility.
If you qualify, you are enrolled under an ethics-approved study protocol and sent a kit that includes a virtually painless capillary blood self-collection device called TAP II. The device allows you to participate in immune studies in the comfort of your home and send capillary blood samples directly to the ImYoo lab. The TAP II is placed on the upper arm and sticks with the help of a gentle adhesive, it barely penetrates the inner layer of your skin and feels like a suction cup.
“For the IBD study, we ask you to collect a few samples when you’re feeling well and a few samples when you’re flaring. The TAP II device is virtually painless and takes just a couple minutes to use. You’ll mail us the tube of your sample with the packaging we provide. After several weeks we’ll report updates from the lab and several weeks after that we’ll release our study’s findings to the community. Since the community is crowdsourcing the study for us, the least we can do is share what we discover. For example, we may find a new gene or an immune cell marker that helps your doctor better treat your flares,” said Emily.
The Power of Crowdsourcing
The best part about a crowdsourced study is that anyone can make a difference. By visiting the ImYoo crowdsourcing page and selecting “Participate in this Study!” you are making a powerful impact. The more people with IBD who join, the more attention we can attract for crowdfunding.
“If you’re eligible for the IBD study, we’ll reach out after we’ve hit our crowdfunding goal. To help us reach our goal, you can express an interest to participate or pitch in a donation to one of our Champions’ campaigns. There’s a network effect we’re going for, one person tapping into their community can open so many doors.”
If you’ve ever been told your labs or scopes look normal or there’s nothing more to do when you’re suffering through IBD, it’s simply not true. Everyone is on their own health journey and deserves a chance to take control of it.
“That’s why ImYoo is excited to put innovative science in peoples’ hands. This research isn’t possible without the IBD community, which is why we invite IBD Warriors to pitch in however they can – skip a coffee and donate $5, express interest to participate, or simply share to your network,” said Emily.
“Our goal is to empower the IBD community with more powerful tools. One of the biggest questions we hear from IBD folks is, “Am I in remission yet?” You might be feeling fine and think you’re good, meanwhile your immune system could be attacking your colon,” explained Tatyana. “We hope to help people track their immune systems when they are most vulnerable.”
By enabling the IBD community to crowdsource our own studies, the power is in our hands. ImYoo wants to explain their research findings every step of the way and keep people engaged, because it really is a partnership. From this IBD study, the ImYoo team wants to prove that the IBD community can make their own research happen. By studying flares, the hope is that sequencing the state of individual immune cells will uncover predictors and targets for more accessible precision medicine.
Connect with ImYoo, Follow and Participate in the Research