I remember the first phone call when I was pregnant with my oldest as a soon-to-be IBD mom. A researcher from Mother to Baby called me when I was newly pregnant and leaving work—I sat in my car in a parking lot, as she asked me several questions about my health, well-being, medication, and pregnancy thus far. That was Fall of 2016. Fast forward to now—and my oldest, Reid, just graduated from kindergarten. When I was diagnosed with Crohn’s disease at age 21 in 2005, one of my biggest fears was whether my chronic illness was going to rob me of motherhood. Back then, I was nowhere near ready to settle down, but the worry was always in the back of my mind.
When my husband and I got married in June 2016 and I was 10 months into surgical remission, we knew we needed to capitalize on my IBD finally being under control. Luckily, we got pregnant one month after getting married. Shortly thereafter, I started researching pregnancy studies for IBD moms. Lights, Camera, Crohn’s launched two days before I received a positive pregnancy test. I was fresh into my advocacy and had never been pregnant before. I didn’t have a community of IBD moms to lean on for questions or support as I navigated the unknown.
I came across information about Mother to Baby online and ended up being a part of their pregnancy studies for my first two children. The studies were different, but I had such a positive experience with Reid, that I decided to participate again with my daughter, Sophia. Reid’s study was a 5-year look at how Humira impacts babies in utero through kindergarten. When I was initially pregnant with him, this felt light years away. And here we are. Over the course of his pregnancy and until November 2022, I completed surveys, did phone interviews, had an in-person meeting with a doctor who came to my home and looked him over in front of me for any health anomalies, and most recently did an in-person cognitive neurobehavioral assessment at a nearby hotel with researchers.
We just got the results. While it’s rewarding to participate in IBD studies and interesting to learn, there’s always a part of you that worries about the findings and if mom guilt will ensue. It’s been reassuring and comforting to see my healthy kids, who were exposed to Humira in utero through the 3rd trimester, thrive and excel with milestones and in school.
The findings of the study
In November 2022, Reid and I met up at a nearby hotel with two researchers who provided neurodevelopmental behavioral evaluations for both of us. Reid’s assessment used a series of questions, games, and puzzles to help researchers determine his development of language ability, memory skills, and problem-solving abilities. The tests were selected to provide an evaluation of general mental ability and to describe specific abilities in areas of verbal knowledge and reasoning and visual-perceptual reasoning and organization. The tests were intense, I was proud of him for how he handled himself during the process.
According to Mother To Baby, “this battery of tests is best suited to examine the similarities and differences among groups of children. While it was not adapted for Reid’s individual characteristics, it can highlight general strengths and weaknesses in a child’s cognitive profile and indicate potential concerns when present.”
Behavioral Observations: “Reid was personable and interacted with both administrators on his arrival. He had a very positive attitude toward testing and quickly became comfortable with administration. He was engaged and attentive to the materials, listened attentively to the examiner and provided effortful responses even as questions became more difficult. Reid demonstrated good cooperation and attitude by following instructions and requiring minimal to no redirection from the administrators of his mother. He was focused and friendly for the full duration of testing.”
Summary of Assessment Results: “Tests were administered in a single testing session with one short break. The Wechsler Preschool and Primary Scale of Intelligence (WPPSI-IV) was selected to provide an evaluation of Reid’s general mental ability and to describe specific abilities in areas of verbal knowledge and reasoning and visual-perceptual reasoning and organization. This battery of tests is best suited to examine the similarities and differences in ability among similarly aged groups of children. While it was not adapted for Reid’s individual characteristics, it can highlight general strengths and weaknesses as well as potential concerns when present.”
The intelligence test was comprised of 10 subtests which measured a variety of verbal and nonverbal skills. Reid achieved a composite score in the average range. In the working memory category and spatial working memory, Reid performed in the high average range, which required him to remember and identify pictures that had previously been shown to him. On tasks that measured visual-spatial abilities, Reid scored below average. These tasks required him to synthesize visual stimuli to recreate block design.
“Reid was highly focused while processing visual stimuli. Overall, Reid is a bright and enthusiastic child. He was a pleasure to work with.”
Along with Reid’s assessment, I was also interviewed and performed tasks with an examiner on the other side of the room. I was assessed in the adjustment and life context. Tests included the Center for Epidemiological Studies Depression Scale and Parent Stress Index. My scores were within normal limits and my general mental ability also scored in the average range. Not gonna lie, the testing was challenging!
Reflecting on my experience
As an IBD mom of a 6-year-old, 4-year-old, and 22-month-old, who participated in pregnancy research during each of my pregnancies, I can’t begin to tell you how incredibly rewarding it is to know that your personal experience is helping to drive the future of care for women in our community who have hopes of one day being a mother. Sure, it takes a little bit of time and effort, but the data and research to show the safety and efficacy of medications while pregnant and breastfeeding is so needed. It’s comforting to know Reid is right where he needs to be cognitively and healthy physically, despite my high-risk pregnancy and exposure to Humira until 39 weeks gestation. We need more women to willingly step up to the plate and share their journeys to help guide the future of IBD motherhood and show all that’s possible despite our disease.
Opportunities to participate in research
Many people need to take medication during pregnancy to manage and treat their IBD. Yet, according to the Mother To Baby website, fewer than 10% of medications have enough information to determine their safety for use in pregnancy.
Do you have Crohn’s disease? Are you currently pregnant? If you answered “yes” to both questions, you may be able to help Mother To Baby advance the knowledge of how managing IBD in pregnancy impacts a developing baby. Click here to learn about how you can impact the health of future families by joining the Crohn’s Disease and Pregnancy Study.
July marks 15 years since I started my journey taking a biologic injection to manage and treat my Crohn’s disease. Since that time, I’ve had routine “safety labs” every 3-6 months, depending on my gastroenterologist. You may be familiar with safety labs, or you may wonder what I’m talking about. I’ve been seeing my current GI for almost 8 years, and she’s adamant that I get labs every 3 months to make sure my disease is closely monitored. If I fail to get labs every 3 months, per her orders, my prescription for Humira is unable to be filled by my specialty pharmacy.
I ran a poll on Instagram and asked, “If you are on a biologic, do you get safety labs every 3 months?” Of the 175 people who responded, 41% said “yes”, 36% said “no”, and 23% had no idea what safety labs are. This week on Lights, Camera, Crohn’s we take a closer look at the reasoning and purpose behind safety labs, and we hear from esteemed and world-renowned gastroenterologists Dr. David Rubin, MD, Section Chief of Gastroenterology, Hepatology, and Nutrition at the University of Chicago Medicine and Dr. Miguel Regueiro, MD, Chair, Digestive Disease and Surgery Institute, Professor in the Department of Medicine, Cleveland Clinic.
What is a safety lab?
Safety labs are to ensure that patients are not developing a complication from a medication that they may not feel.
“For example, kidney or liver function tests that may show an abnormality before a patient has damage to those organs, or problems. Or a white blood count that lowers in a patient on certain immunosuppressive therapy – something they may not “feel” until the immune system gets low enough to develop an infection,” explained Dr. Regueiro.
The periodicity of labs for “safety” are often taken from the clinical trial designs, rather than the likelihood that something is going to change within that period of time.
“Routine labs while on therapies for IBD is important and patients can and should keep track and ask for them at least twice a year for most of our therapies. For many of these, there are gaps in our understanding whether the interval (every 3 months for example) is the right one or makes a difference. We certainly know it takes time for patients to do this and costs money too. Some of my colleagues withhold refills as a safeguard to make sure patients get their labs. This may be more punitive than necessary, but it is one way to make sure this is getting done,” said Dr. Rubin.
When I get my labs done every 3 months the following blood tests are ordered by my GI:
CBC w/Auto Differential
Hepatic Function Panel (Liver Panel)
Vitamin D 25 Hydroxy (I am deficient, so we keep a close eye on this)
If there is concern about inflammation or anemia, then my GI also adds:
Sedimentation Rate, automated
High Sensitivity CRP
Iron Profile with IBC + Ferritin
In the past, if there’s concern about my response to Humira we do a “trough level” to see if I’ve built up antibodies to my therapy and to measure how much medication remains in my body right before I am scheduled to do another injection.
It’s important to know, since I started seeing my GI two months after my bowel resection surgery in 2015, I have been in remission. So, the concern about inflammation and needing to take fecal calprotectin tests has been few and far between. When we were in the middle of the pandemic, rather than an annual colonoscopy, my doctor had me do a fecal calprotectin test at home to limit my risk of being exposed to germs in a hospital setting while my disease was well-managed.
“We recommend certain labs on patients taking IBD medications. Each medication will require a different safety lab monitoring strategy. Some brief examples, for mesalamine, checking kidney function tests within a couple of months of starting a medication and then once or twice a year. For thiopurines (6MP and Imuran) and methotrexate more frequent blood work initially, e.g., complete blood count and liver function tests weekly to every other week in the first two months after starting and then every few months thereafter,” said Dr. Regueiro.
Safety labs as a disease monitoring strategy
Generally, safety labs are done for medical health reasons to make sure that everything is ok while taking the medication.
“Safety labs are “driven” by the physician or provider caring for the patient. The insurance company may require certain labs before starting or continuing a medication. For example, a tuberculosis (blood) test before starting an anti-TNF medication and then yearly while a patient is on the medication. Otherwise, the insurance company usually does not require safety labs for medication approval or continuation. Each case is different, and each insurance company is different,” said Dr. Regueiro.
“More important than pharma-drive lab recommendations—is that every patient should have a customized strategy to monitor their disease stability to detect relapses before there are clinical consequences. This is my new take home message for most of my lectures- in addition to “treating to a target” we must have “disease monitoring” as something that every patient has as part of their care,” said Dr. Rubin.
Chronic diseases like IBD tend to “drift away from control”, so it is good to keep an eye on things and this enables proactive preventive care.
“For low-risk patients, that might be once a year, but for those who are on advanced therapies (biologics and the novel targeted small molecules), they likely need this approach more frequently. It is true that “knowledge is power,” and knowing that the disease has activated enables much better care,” explained Dr Rubin.
Disease monitoring may involve blood or stool markers (calprotectin) or depending on where you live, intestinal ultrasound. Colonoscopy or CT scan/MRI is also recommended. Dr. Rubin tells me the key is identifying what is appropriately benchmarked and reliable and which approach is feasible and makes the most sense for the patient.
Why the onus is often on us
As you can imagine, 3 months comes quickly. If you’re like me, I see my GI in clinic two times a year (every 6 months). When I was pregnant, she would see me in the office every 3 months. Given that I see her twice a year, that checks off two of my four lab visits. As an IBD mom juggling life with three young kids, time can often slip away. I’ve found I must alert my nurse and GI about when and where they need to submit lab orders so I can take care of them the other two times a year at a Quest or LabCorp nearby. In the past there have been a few times where I’ve dropped the ball.
Coordinating life with chronic illness can truly feel like a full-time job. Just this week I spent an hour on the phone with my specialty pharmacy trying to organize my next shipment because there was an issue with my patient savings card. At the time, all three of my kids were running around like little banshees, yelling, and making it hard for me to hear the phone representatives. At one point, I had to lock myself in my laundry room. These aren’t calls that can wait. Patients need their medication; we can’t just hang up and re-visit the snafu at another time because it can mean we receive our biologic shipment late. This is one small example—of a behind-the-scenes look at life with IBD as a mom.
While getting labs four times a year may not seem like a lot, it does involve planning, time, and coordination for patients. My kids have joined me countless times in the stroller as I get labs done. Then, reading the results on the Patient Portal and seeing certain results too low or too high can cause anxiety and added stress. It’s a never-ending cycle.
Talking with your care team
If you’re only getting labs done once or twice a year, it may be worth having a conversation with your GI about the reasoning why and what you feel most comfortable with. Your care is not a one-way street. If you feel like you need a more hands-on approach, talk about this with your doctor. In talking with fellow IBD patients, many who are on infusions every 8 weeks, tell me they get labs every 16 weeks.
If you’re only getting labs done once a year, Dr. Regueiro says you don’t necessarily need to be alarmed.
“For a patient who has been on a medication like mesalamine or a TNF inhibitor for a long time, in remission, and doing well without prior lab test abnormality, once per year lab testing may be ok. However, a patient on Imuran or 6MP may need lab testing more frequently.”
As a veteran patient, who was diagnosed with Crohn’s nearly 18 years ago, safety labs have become part of how I manage my IBD. While annoying at times, these labs also give me a sense of relief. One final recommendation I have—don’t try and get labs done before or after your colonoscopy—I’ve tried this twice to try and kill two birds with one stone, and with being so dehydrated, it was not a pleasant experience. Being closely monitored through safety labs takes away much of the stress and worry that can come because of being on a biologic, and the possible side effects that can happen now and into the future.
A special thank you to Dr. David Rubin and Dr. Miguel Regueiro who took the time to offer their expertise for this article on the heels of Digestive Disease Week (a HUGE conference they both actively participate and present at). Having their insight on topics like this that matter to patients means so much.
One in three people with inflammatory bowel disease (IBD) has iron deficient anemia. This common, but often underrecognized and undertreated extra-intestinal manifestation impacts so many of us. You may wonder why. The reason is three-fold.
First being that long-term irritation and inflammation in our intestines can interfere with our body’s ability to use and absorb vitamins and minerals properly. When our intestines don’t absorb enough iron, folate, B12 and other nutrients, our bodies are unable to create more red blood cells. Those with IBD are also at risk for blood loss—both visible and microscopic and we often don’t eat as much iron-rich foods. So, what can we do to boost our reserves and increase our energy? How as patients can we better advocate for ourselves to stay on top of screenings? This week on Lights, Camera, Crohn’s an in-depth look at anemia in both adult and pediatric patients and input from Dr. Alka Goyal, who recently co-authored a major study on pediatric anemia.
Symptoms to watch out for
As someone who was diagnosed with Crohn’s disease in July 2005, I experienced anemia long before my diagnosis. I often wonder if my anemia was a warning sign of the larger issue, my IBD. In fourth grade, I fainted on the teacher’s desk while waiting for her to look at an assignment. Throughout my life I’ve experienced light-headedness, weakness, black outs, and extreme fatigue. My symptoms were never addressed prior to finding out I had Crohn’s. A simple lab test would have shown all along. When I was diagnosed with IBD and hospitalized my hemoglobin was a 7. To give you an idea, people are given blood transfusions once they drop to 7 (or below). Throughout my 18 years with IBD, my hemoglobin was rarely ever in “double digits”—and I took over the counter iron supplements for years.
Once I had my bowel resection surgery in 2015, my iron panel slowly started to improve. It takes time. Last month, I had my “highest” hemoglobin since diagnosis, ever—12.9 (which really isn’t that high, but I’ll take it!). It’s difficult to put the fatigue caused by anemia into words, but you can physically tell such a difference when your iron panel is where it needs to be.
When you have anemia, you have less blood carrying oxygen throughout your body. The most common symptom is feeling tired or lethargic. Other symptoms include dizziness, headaches, feeling cold, pale skin, being irritable, and shortness of breath. Not everyone experiences symptoms, so it’s important as a patient to speak with your GI about making sure that when you get labs, an iron panel is part of the workup.
Screening for Anemia
Anemia screening is driven by patient symptoms and/or a care provider’s recognition of lab abnormalities. It’s important to note that anemia is not *just* a low hemoglobin, all the lab figures matter. With iron deficiency anemia (IDA), red blood cells are smaller and paler in color. Your hematocrit, hemoglobin, and ferritin go hand in hand. Ferritin helps store iron in your body. Iron deficiency anemia is the most common type of anemia and is caused by a lack of iron-rich foods, malabsorption, and blood loss.
Other types of anemia include vitamin deficiency anemia and anemia of chronic disease. Vitamin deficiency anemia is a result of poor absorption of folic acid and vitamin B12. My GI has me on daily folic acid. Luckily my B12 has never been an issue, but it’s worth a discussion with your care team. If you’re deficient, you can receive B12 injections. Diseases such as IBD and other inflammatory diseases can interfere with the production of red blood cells. When this happens anemia can often only be resolved once remission is reached or inflammation calms down.
In order to address the need for improved patient management, the Crohn’s and Colitis Foundation created the Anemia Care Pathway (ACP) to standardize clinical management of anemia in IBD. This pathway helps to identify high-risk patients so that timely intervention and care can be provided. The hope is that this pathway will improve patient outcomes and our quality of life. Patients are assessed based on the severity of their anemia and iron stores to determine the type of iron therapy (intra-venous or oral) that is best suited.
The importance of accurately diagnosing the type of anemia you have
According to the PubMed study, Management of Anemia in Patient with Inflammatory Bowel Disease, despite iron deficiency anemia impacting one third of IBD patients, “more than a third of anemic ulcerative colitis patients are not tested for IDA, and a quarter are not treated with iron replacement therapy.” While oral iron tablets are effective for treating mild IDA, it’s not for everybody. The study also notes, “it is important to recognize that ferritin is elevated in chronic inflammatory states and among patients with active IBD, ferritin levels less than 100 are considered to be diagnostic of iron deficiency.” Iron infusions have a solid safety profile and can be used to help boost your iron stores and prevent future iron deficiency.
While treatment goals are well-defined, selecting a treatment is often not as straightforward. The PubMed study previously mentioned recommends that all IBD patients with IDA should be considered for oral supplement therapy, whereas someone with clinically active IBD, or someone who is not tolerant of oral iron, with hemoglobin levels below 10 g/dl be given IV infusions therapy. While oral iron is safe and affordable, some people experience GI issues from oral iron, it can also increase inflammation and contribute to flares in patients who are not in remission.
“Though intravenous (IV) iron is substantially underused, it’s considered first-line treatment for patients with active disease, severe anemia, oral iron intolerance, and erythropoietin (a hormone secreted by the kidneys that increases the rate of production of red blood cells in response to falling levels of oxygen in the tissues.)
Anemia in pediatric IBD patients
The most common cause of anemia in children with IBD is iron deficiency. It results from chronic blood loss, poor absorption, and less intake of foods that are rich in iron due to poor appetite, food selection or intolerance. According to the World Health Organization’s definition of anemia, prevalence in the pediatric IBD population ranges from 44% to 74% at diagnosis and 25% to 58% at 1 year follow-up.
Anemia can be both a biomarker of disease activity and a subtle or debilitating extraintestinal manifestation. According to, Anemia in Children With Inflammatory Bowel Disease: A Positi… : Journal of Pediatric Gastroenterology and Nutrition (lww.com), “newly diagnosed children with IBD are more likely to have IDA in contrast to anemia of chronic disease. No significant improvement in the hemoglobin was observed when patients were assessed after 13 weeks of induction therapy with conventional drugs that included nutritional therapy, azathioprine, steroids, and 5-ASAs. Despite the recognition of anemia, fewer than half of anemic patients received indicated iron therapy.”
Dr. Alka Goyal, MD, Clinical Professor of Pediatrics, and Interim Associate Chief of Clinical Affairs at Stanford University of Medicine, co-authored this study on pediatrics and tells me the key message is that anemia is the most common extraintestinal manifestation in patients with IBD.
“More than 2/3rd of children with IBD are anemic at the time of diagnosis. The treatment of IBD alone does not resolve anemia, which can be associated with a variety of symptoms. Persistent anemia indicates a more aggressive disease course,” said Dr. Goyal.
Hemoglobin levels across genders and race
According to the study, hemoglobin levels are similar in preteen boys and girls; however, after menstruation, the cutoff hemoglobin in girls is lower than in boys and is even lower in pregnant versus nonpregnant women. The African American population tends to have lower hemoglobin concentration compared with Caucasians.
“Although the normal range of hemoglobin varies with age, gender, and race, a hemoglobin level below 10 g/dL is considered to be consistent with moderate anemia and below 8 g/dL as severe anemia, whereas in young children below the age of 5 years and pregnant women, a hemoglobin level below 7 g/dL is deemed as severe anemia.”
Dr. Goyal says it’s important to monitor anemia regularly in all patients with IBD.
“Anemia can be an early indicator of active disease or an impending flare of IBD. When the body has inflammation, the iron stored in the body cannot be metabolized to help manufacture more hemoglobin and additionally there is suppression of normal blood production, resulting in anemia of chronic disease.”
Other causes include vitamin deficiency, medication side effects, or breakdown of red blood cells due to other inherited or disease-related complications.
“Patients should be monitored not just by symptoms, but also by blood tests like complete blood count, Ferritin, and markers of inflammation like CRP every 3 months when they have active inflammation and every 6 months when patients are in remission,” Dr. Goyal explains.
Bringing a dietitian on board to help
Registered dieticians who specialize in IBD can advise patients and families about foods that contain iron naturally. The iron in meats is more readily absorbed than that present in a plant-based diet.
Dr. Goyal says another important concept is food pairing.
“With food pairing, iron-rich foods like spinach, kale, and Swiss chard are ingested with citrus fruits, melons, or vegetables like bell pepper, broccoli, beans, carrots, tomato, etc. Avoid simultaneous ingestion of foods rich in dietary fiber, soy, cereals, coffee, tea, and animal protein like milk, and eggs. Children should consume at least three servings of iron-rich foods like fortified cereals, red meat, tofu, etc. The recommended daily intake of iron in healthy children is 7-11 mg daily,” says Dr. Goyal.
Treating anemia in the younger IBD population
When it comes to treating anemia, Dr. Goyal has helpful tips. She says it’s important to recognize and treat anemia along with the treatment of IBD and vice versa.
Oral iron can be tried in mild anemia when the hemoglobin is above 10 gm/dl, preferably given with juice or citrus fruits.
Avoid taking oral iron multiple times a day or in high doses.
Brush your child’s teeth after taking liquid iron.
If your child experiences side effects including abdominal pain, nausea, or constipation, and/or has no significant improvement with oral iron, it is safe to give intravenous iron.
Timely treatment may save a blood transfusion. excessive unabsorbed iron is not healthy for our digestive system, so avoid overdosing on oral iron.
Patients with persistent anemia lasting for three or more years were noted to have a higher prevalence of more severe and complicated disease (stricturing and penetrating phenotype) with a greater need for surgical intervention.
Whether you’re an adult patient or a caregiver to a child or young adult with IBD, be mindful of the importance of keeping tabs on whether anemia is creeping in and hindering you or someone you loves quality of life. Have the conversation with your GI and make sure you are being vigilant and proactive about doing all you can to prevent, manage, and treat anemia.
Life with IBD is constantly waiting for the other shoe to drop. Expecting more trauma. Knowing in your heart of hearts the results won’t be in your favor. Preparing yourself mentally and emotionally for the worst. Gearing up for the next unexpected roadblock or hurdle. I felt all these things walking into my first-ever bone health specialist appointment Friday (4/7/2023). My bone scan in December 2022, days before Christmas, showed some remarkable deterioration in my lumbar spine since my previous scan in 2019. My GI called me a bit alarmed the same day I did my scan, and let me know it was imperative I follow up with a bone health doctor.
I felt nervous about what this meant for my future and let’s just say Google was not my friend. When you’re 39 and a busy stay at home mom of three young children, osteoporosis doesn’t really go with my flow. When I went to make an appointment, the bone health specialist was booked until December 2023…a whole YEAR from my previous bone scan. I felt helpless and didn’t know what I should do proactively to maintain my bone health and try and improve it. Reading up, it sounded like a simple abdominal crunch could cause vertebrae to compress and fracture. I felt scared to exercise or put any additional strain from my day-to-day on my back.
The week of Christmas I wrote to the bone health specialist directly by email about my health history and my concern for waiting a whole year. I received a phone call from her office shortly after the New Year and they got me in April 7, 2023…instead of December 2023. I was over the moon, but also a bit anxious about what this appointment would mean for my future.
What the experience at the bone health doctor entailed
It was a crisp, sunny, spring day in St. Louis as I parked my car, took a deep breath, and said a little prayer before walking into the medical building. The office required me to do another bone scan as their machine and readings are different from the hospital where my previous scans were taken from (even though they are the same medical system). When I laid on the table for the bone scan my mind raced a bit, I felt a little anxiety creeping in. I figured the results were going to be the same as before and that I was going to be approached about starting an additional biologic (which I was planning to push back on).
When the doctor walked in, she said I have “low bone mass” for my age. At this point, unless I’ve had a fracture, she said they wouldn’t use the term “osteopenia” or “osteoporosis”. According to the Crohn’s and Colitis Foundation, as many as 30 to 60 percent of people with Crohn’s disease or ulcerative colitis have lower-than-average bone density. Being that I am almost 40 and pre-menopausal, there’s what’s called the Z and the T-score. I wasn’t aware of this and needed to do research to understand this better.
According to the Bone Health and Osteoporosis Foundation, T-Scores compare bone density with that of a healthy person, whereas Z-scores use the average bone density of people of the same age, sex, and size as a comparator. Although both scores are beneficial, most experts prefer to focus on Z-scores for children, teenagers, premenopausal females, and young males. These scores are helpful for diagnosing secondary osteoporosis, which stems from underlying medical conditions (such as IBD), rather than primary osteoporosis which results from a person aging.
So my Z-score was -1.8…while zero would be optimal, given my nearly 18-year history living with Crohn’s, past steroid use, and the fact I’m Vitamin D deficient, the doctor was not overly concerned by that number.
We went through my patient journey with Crohn’s disease—each hospitalization, timing of steroids, family history, timing of pregnancies and breastfeeding, whether I have ever used birth control, if I had ever had a kidney stone…this doctor genuinely listened and wanted to get details about my full health history. I felt validated, seen, and heard, but also comforted that the main “concern” is moreso my Vitamin D deficiency than anything else.
What this means moving forward
To strengthen bones and slow down the rate of deterioration, lifestyle is key. Vitamin D and Calcium are vital. My GI currently prescribes me 50,000 IU of Vitamin D once a week, along with 2,000 IU of Vitamin D3 daily. The bone health specialist told me after I get my routine labs done in June, if my Vitamin D doesn’t improve that she would suggest going on 50,000 IU two times a week. Like many of us in the IBD community, we tend to have malabsorption problems due to past surgery.
Along with my typical labs from my GI, this doctor also added additional labs—Vitamin D, Renal Function panel, and parathyroid hormone (PHT) test.
As far as Calcium, she recommended trying to get it through diet versus a supplement. She suggested eating yogurt daily, cheese, fortified cereals/oatmeal, and drinking milk/almond milk, OJ with calcium, and eating leafy greens. With my age, the goal is to consume1,000 mg of Calcium a day. It’s important to note she said Calcium can cause constipation and bloating. Calcium is absorbed best when taken in amounts of 600 mg or less per dose.
In a helpful folder provided by my doctor, I learned that our bodies need Vitamin D to absorb Calcium. When you’re Vitamin D deficient like me, our bodies cannot absorb enough calcium from diet and take it from our skeletons, where Calcium is stored. This weakens existing bone and prevents the formation of new bone. You can get Vitamin D from different sources: through the skin, with diet, and by taking supplements.
When it comes to exercise, I have no limitations. My doctor recommended I avoid high risk activities like extreme snowboarding or powerlifting, which isn’t an issue for me!
Given that I do have lower bone mass, I have another bone scan scheduled for April 2024 along with another bone health appointment immediately following the scan. It does my heart good to know that we’re being proactive with annual scans, but conservative in our approach. Everyone who has IBD should be given a bone scan in order to get a baseline read and follow up with repeat scans every 2-3 years, unless there’s concerning findings. If you’re reading this and your GI has not communicated with you about bone health, it’s time to start the discussion.
Simply saying and hearing “low bone mass” from a patient perspective has a much better connotation than “osteoporosis”. The entire experience and appointment with my new specialist felt like a big win. The news was unexpected, and I felt like I could breathe a sigh of relief. One less health issue to worry about, but something that I’ll continue to keep tabs on.
Reliable Sources of Bone Health Information to Check Out
When was the last time you popped an aspirin or an Aleve for body aches, abdominal pain, or a headache? Chances are, if you have IBD, you’ve been told to refrain from doing so. People with Crohn’s disease and ulcerative colitis are told to stick to acetaminophen, or Tylenol, as it’s gentler on the stomach and not known to cause ulcers or aggravate IBD. While we’re still not supposed to take NSAIDs all the time, research is going on about whether it’s ok to take on an “as needed” or “short term” basis and if they truly put IBD patients at risk for a flare.
I ran a poll on Instagram asking those with IBD if they take NSAIDs. Of the 350 responses, 68% said no, 14% said yes, and 18% said only short term.
After my bowel resection surgery and three c-sections I was told short term NSAIDs were “safe” to help manage pain postoperatively. In full transparency, over the last year or so I’ve dealt with back pain that comes and goes and have felt the need to take NSAIDs on several occasions, but in the back of mind I know I probably shouldn’t be. I try and limit how often, and only took Tylenol for nearly 17 years. But, when the pain gets to be a bit much and I have to manage life with three little ones, sometimes I feel like I have no other choice. There’s been more and more talk lately about NSAIDs and IBD, so I wanted to take a deep dive and share what I’ve learned.
Dr. Shirley Cohen-Mekelburg, M.D., M.S., gastroenterologist and research scientist at University of Michigan and Director of the Inflammatory Bowel Disease Program at Ann Arbor VA Healthcare System, recently conducted a study that looked into how NSAIDs impact the IBD population. She says the best research questions come from clinical experience and this is a topic that comes up quite a bit from patients.
“We have been discussing the question of whether NSAIDs cause IBD flares for years, and there is no strong evidence directing us to conclude that NSAIDs definitely cause flares, nor that they are safe for use in IBD. As opioid use and abuse continues to rise, it is becoming more and more important to consider our non-opioid analgesic options. Ultimately, the idea for this study came about from discussions between the co-investigators on this study as to the clinical implications of this work, and the methods we have available to further investigate this important research question,” she said.
What the study found about NSAIDs and IBD
The study findings were not necessarily surprising.
“It is very difficult to study the impact of NSAIDs on IBD flares because prospective comparative studies are difficult to conduct for an over-the-counter medication such as NSAIDs, which is widely available to patients in various forms. Therefore, to demonstrate equipoise and justify the need for further safety and effectiveness work, we leveraged a large national database of patients with IBD.”
Dr. Cohen-Mekelburg and her team used a multimethod approach to understand the associations between NSAIDs and IBD flares.
“First, we looked at a traditional statistical method for examining associations between an exposure (i.e., NSAIDs) and an outcome (i.e., IBD flare). We then used more advanced techniques to demonstrate that this observed association may potentially be due to bias rather than a true association. These biases are well-established and important to consider when conducting observational research.”
It’s important to note that just because there’s conversation, interest, and research going on about NSAIDs and IBD, doesn’t necessarily mean there’s a change in clinical practice or current recommendations.
“This moreso inspires us to question our current knowledge in order to justify that further work is necessary to establish the safety of NSAIDs in IBD, and specifically, for what patients and in which contexts,” she said.
Why not taking NSAIDs as a patient isn’t necessarily clear-cut
Dr. Cohen-Mekelburg wants patients to know there is “no universal recommendation” for the “best way” to take NSAIDs if you have IBD, which is why many patients get mixed messages from clinicians and their peers.
“In practice, we see that some patients take NSAIDs routinely without any adverse effects, and others may take NSAIDs for a short period of time with serious adverse effects. Ultimately, more research is necessary to better understand the safety and effectiveness of NSAIDs for IBD-related pain control.”
Just as IBD presents uniquely in each of us, our response to NSAIDs and what is safe or harmful needs to be further studied.
Dr. Cohen-Mekelburg says, “COX-2 inhibitors are NSAIDs that are more selective in their mechanism of action and are thought to carry a lower risk of gastrointestinal bleeding. However, they may carry a higher risk of other adverse effects, such as cardiac problems. Some clinicians have questioned whether these selective COX-2 inhibitors may be “safer” in IBD, but this is not known based on current evidence.”
Ultimately, the goal of Dr. Cohen-Mekelburg’s study was to bring attention to the topic of NSAIDS in IBD and to inform future work to better answer these important questions that both patients and clinicians need to improve IBD care and pain management.
Aspirin and IBD pregnancies
As an IBD mom of 3—ages 6, 4, and 20 months I recently learned that it’s recommended for women with Crohn’s or ulcerative colitis to take a baby aspirin during pregnancy. I was pretty shocked by this. Dr. Uma Mahadevan, M.D., Director, Colitis and Crohn’s Disease Center at UCSF, and Chair of IBDParenthoodProject.org, recommends all pregnant women with IBD start around week 12 of gestation. For those who don’t know, Dr. Mahadevan is at the forefront of the latest research and guidance when it comes to IBD and pregnancy research with the PIANO study (Pregnancy Inflammatory Bowel Disease and Neonatal Outcomes).
“Women with immune mediated disease, like IBD, are at higher risk of pre-eclampsia and related disorders (gestational hypertension). Going on baby aspirin has been shown to reduce that risk. The original trial was done in Europe with 162 mg, but in the U.S., we use 81 mg,” said Dr. Mahadevan.
She says this conversation is started with women during pre-conception counseling.
“Prior to these discussions, many of my patients were surprised and always checked with us. I tell them to take the baby aspirin with food and let us know if disease flares. Anecdotally they have all done well with respect to IBD. As an FYI, aspirin can increase calprotectin, so that’s something to keep in mind if you are monitoring that,” said Dr. Mahadevan.
The idea NSAIDS trigger IBD flares is controversial. Are patients taking NSAIDS because they have a flare or did the medication trigger a flare? Dr. Mahadevan says it does seem that short term (a few times a month for headaches, menstrual cramps) is low risk for triggering a flare.
In summary, if you ask most GI’s, they will tell you that a “short course” (5 times a month or less) of NSAIDS when you have IBD is “ok”. If your symptoms worsen or do not resolve, then it’s time to communicate with your care team and possibly get some lab work to get to the bottom of what’s going on. When I was in pelvic floor therapy last year, my therapist recommended T-Relief Arnica +12 Cream. It’s a game-changer for me and alleviates pain in minutes. I rub a little on sore joints and my lower back and lay on the heating pad and don’t feel the need to take any medication. Tylenol Arthritis also helps with joint pain.
The jury is still out about whether NSAIDs exacerbate Crohn’s and ulcerative colitis, and further studies are needed. For general aches and pains, most GI’s recommend taking acetaminophen instead of NSAIDs if you have IBD. Have the conversation with your care team and be open and honest about how you are managing your pain whether it’s related to IBD, extraintestinal manifestations, or a completely different ailment.
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.
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
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It’s considered the most common surgical procedure for ulcerative colitis patients when medication fails to keep IBD under control. The ileal pouch anal-anastomosis (IPAA) or j-pouch, is created after a surgeon removes your colon and rectum and uses the end of your small intestine to form an internal pouch, which looks like the shape of J.
This week on Lights, Camera, Crohn’s we hear from a colorectal surgeon and IBD patient himself, along with several women with j-pouches about their experience, what they’ve learned along the way, and what they hope others know who are living similar realities.
What does the j-pouch procedure entail?
Before we dig deeper, a short “lesson” on what the j-pouch procedure involves. It’s typically a one, two, or three stage process.
According to the Crohn’s and Colitis Foundation:
The first surgery removes your colon and rectum and preserves your anus and anal sphincter muscles. The ileum is made into a j-shaped pouch and connected to the top of your anal canal.
A temporary ileostomy is typically created to give your newly formed pouch a chance to heal. A loop of your small intestine will be pulled through an opening in your abdomen, called a stoma, to allow waste to exit your body into an ostomy bag.
During this time, you will need to always wear an ostomy bag, and it will need to be emptied several times a day.
You will have your second surgery eight to 12 weeks later, once the pouch has healed.
The second surgery will reverse the temporary ileostomy and reconnect your small intestine. Your internal pouch will then collect waste and allow stool to pass through your anus in a bowel movement.
Some surgeons choose to perform this surgery in just one stage, in which the pouch is created and joined to the anus without a temporary ileostomy. This is done less often than the two-stage procedure because of an increased risk of infection.
This topic resonates with Dr. Stefan D. Holubar, MD, MS, FASCRS, FACS, IBD Surgery Section Chief & Director of Research for the Department of Colorectal Surgery at Cleveland Clinic, for many reasons. He was diagnosed with Crohn’s colitis when he was 7 years old and was on and off steroids (the only treatment at the time) for many years.
“I had learned to live with chronic embarrassing urgent incontinence, as well as being small and skinny, and with a swollen face from the steroids. I was offered an end ileostomy as a teenager (not a J-pouch as it was Crohn’s) and was lucky to get a second opinion with the famous Dr. Daniel Present (RIP) at Mount Sinai. I went on NPO and TPN for one year which helped get me into remission and grow about a foot in one year. Somehow, I made it through college and got into medical school, but it turned out I hadn’t had a colonoscopy in about a decade.”
Over Christmas 1999, Dr. Holubar had a colonoscopy and received a call a few days later while he was skiing that he had colon cancer.
“That same day, the tumor swelled from the biopsies, and I developed a large bowel obstruction. I had emergency subtotal colectomy w ileosigmoid anastomosis without an ileostomy. After chemotherapy and completing medical school, I needed the rectum removed (due to risk of rectal cancer) and underwent a modified 2-stage J-pouch without ileostomy one month before surgical residency. I’ve been great ever since, not perfect as I have had some complications over the years, but great, with three kids, the best job and wife in the world.”
During the second half of medical school, Dr. Holubar was considering going into GI or Medical Oncology and learned that colorectal surgery was a specialty.
“Once I learned Colorectal was a specialty and they are the IBD experts, my future path was set in stone. It’s rare to know that you want to be a colorectal surgeon that early in training. I’m blessed to share my successful story and give patients with complicated IBD like me hope every single day of my life. My experiences have also influenced me to do clinical research to try to change care more broadly and ideally, globally. My IBD history is a source of endless inspiration for our innovative work.”
I asked Dr. Holubar what advice he has for patients who are on the fence about getting a J-pouch. His most important advice—is to seek expertise.
“I would recommend looking for surgeons who specialize in IBD. J-pouch surgery is a niche these days (hence “IBD Surgeons”), and your care team should be expert in taking care of the complications that may develop. A majority (>90%) of patients with a pouch would do it again and/or recommend it to a friend or family member.” (Fazio et al., Annals of Surgery, 2013, PMID: 23299522).
Dr. Holubar wants to highlight a couple important points in terms of this article:
Only about 10% of people who are deemed candidates for a pouch choose not to have it, for personal reasons such as work, or lifestyle-related reasons such as lack of access to a toilet for many hours at a time, or those who prefer a one-and-done approach (Holubar, Inflamm Bowel Dis, 2009, PMID: 19266572). We have a new article on this, but it has only been published as an abstract so far (Total Proctocolectomy with End-Ileostomy Versus Ileoanal Pouch for Ulcerative Colitis: Who Doesn’t Pouch, And How Do They Do? Dis Colon Rectum 64;5; Meeting AbstractPOD169)
On the other hand, the overall long-term pouch survival is about 90-95% which is very high (in other words, it works out most of the time, but not always) (Fazio et al., Annals of Surgery, 2013, PMID: 23299522).
In the current digital era, we are blessed to have support groups on social media and active discussions on #SoMe4IBD. That said, it’s important to know that not everyone who has a pouch – whether the experience is great, or they have complications – is vocal on social media. It’s important to check with your care team to discuss the best treatment options for you.
When it comes to the risk and benefits of having a J-pouch, Dr. Holubar says each patient needs to chart out the pros and cons of end ileostomy (or rarely a continence ileostomy aka Kock pouch) vs. IPAA as the risk-benefit profiles are quite different.
“The main benefit is that a patient can maintain transanal defecation and avoid a permanent ileostomy and care of the ileostomy. An added “benefit” of having a pouch is that you can almost always go back to an ileostomy if it doesn’t work, or you are not satisfied with the function. Going back into the belly is of course with some risk of further surgical complications,” he explained.
The j-pouch patient perspective
Jackie was diagnosed with ulcerative colitis in March 2009. She was 24 years old and had been given a multiple sclerosis diagnosis before that. At the time, her care team was concerned a biologic could set off her MS.
“Less than a year after my diagnosis, I was told that I’d run out of medication options and I’d need to have my colon removed and opted to schedule surgery at that time to work towards a j-pouch,” said Jackie.
Getting acclimated to having an ostomy didn’t come easily. She says her biggest obstacle was getting over her own biases.
“I didn’t know anything about ostomies except from what I read online from other patients at the time and the consensus in the online forums was not good. I was nervous, but I learned almost immediately that I felt better, was healthier, and could do more. After my first surgery, I traveled across the country and hiked through some parks in Oregon. None of that would have been possible before my ostomy. It only took a few experiences like that to realize how much the ostomy had really given me.”
Of course, there’s a learning curve. There’s new terminology to learn, you must find what works on your body, and that can be frustrating.
“I was curious from day one. I knew that I was sent home in the appliance the hospital had set me up with, but I wasn’t convinced that was the best one for me, so I took it upon myself to test lots of brands and products to get the one that worked best for me.”
Jasmine was diagnosed with ulcerative colitis in 2017 when she was 19. She was a freshman in college. Two years later she dealt with a flare she started Entyvio, but the drug failed her shortly thereafter. She switched to Remicade in January 2020 and had the same problem, even after receiving the highest possible dosage every 4 weeks. Her health continued to rapidly decline, and she was hospitalized in March 2020.
“This was the first-time surgical intervention, an ostomy, and a j-pouch were mentioned to me in a real way, however, the doctors continued to say they felt cautiously optimistic Remicade would pull me out of my flare. Throughout these months, I tried a variety of diets including SCD and AIP, visited multiple dieticians and nutritionists, met with natural health doctors, sought out second opinions, and followed a robust supplement regime that was continuously updated by my functional health doctor.”
Despite every effort, by April of 2020, her health was the worst it had been her my entire life. Weighing 105 pounds, she lived in constant, excruciating pain, unable to sleep or eat, too weak to stand in the shower for longer than five short minutes.
“IBD completely ruled my life. When I spoke with my doctors in early May, they told me I had two options: I could try Stelara, the last drug available to me, which my team was 99% sure would not work and would result in emergency surgery since the drug takes months to kick in and provide relief. Otherwise, I could have surgery immediately. My options hardly felt like options when both resulted in the same outcome, just at different times. I opted to have surgery sooner rather than later. If it was inevitable, I wanted to begin the process and start feeling better as soon as possible, rather than continuing to needlessly suffer.”
A few days later, Jasmine met with a surgeon, and less than a week after that appointment (and the morning after her college graduation), she was rolled into the operating room to have my colon removed.
“No life experience prepares you to look down and see an internal organ on the outside of your body. A stoma is far outside the lines of normal human experience, and despite all the preparation in the world, your brain can’t fully process what it will be like until it’s happened. I found the transition to be difficult; while the nurses in the hospital were helpful, the nurses sent to my home barely seemed to know what to do. I had to teach myself how to empty the bag, and at first, it often took me an hour to change the ostomy. However, with time and as my body healed from surgery, I became more confident and able to quickly take care of the ostomy in under five minutes,” said Jasmine.
Even though the physical acclimation was challenging, Jasmine says the mental acclimation was even harder.
“At the time, I was 22 years old and had never in a million years imagined my life to involve a bag of waste attached to my stomach. I felt like I was constantly grieving the life I’d imagined and the life I’d never get to live. The ostomy felt like a reminder of all that had been taken from me that I couldn’t ignore, concrete proof of how different I was from all other 22-year-olds and how far my life had diverged from the normal college experience. I spent many days looking in the mirror and crying at what I saw, struggling to accept the ostomy as the life saver it was. Over time, as I began to regain more freedom and control over my life, eating the food I wanted, sleeping through the night, exercising, and traveling, I slowly began to make peace with the ostomy through the lens of all it enabled me to do.”
Aimee was diagnosed with ulcerative colitis in 2011 when she was 22 years old. She struggled responding to medical intervention and dealt with severe abdominal cramping and high levels of blood in her stool which destroyed her quality of life.
“I had to give up my job, my life, my apartment, my social life and moved back to my hometown to be taken care of by my parents. In one hospital admission 9 months after first symptoms, the surgical team advised I do the ostomy to avoid a tear or rupture to the colon which could lead to emergency surgery or worse, sepsis.”
The ostomy relieved Aimee’s constant cramping and she felt instant relief from her chronic pain. Going into surgery the plan from the start was to do a three-step surgical journey over 12 months that resulted in a j-pouch May 2012.
“There is so much help in the hospital that it was only the day I was leaving that it hit me that this was going to be something that would be hard to get used to. I was 22 and I was embarrassed to tell everyone and conscious of my looks, so there was a vanity piece that was hard to overcome. When I was home, I felt alone. I wanted to manage the bag all by myself, I didn’t allow anyone to see the stoma or my bags or anything. Looking back at my young self, I wish I had let my family and friends in more to help me, I didn’t need to hide it.”
Elissa was initially diagnosed with ulcerative colitis when she was 14 years old, back in 1994 and years later, Crohn’s, in her small intestine. Her diagnosis journey was a difficult one. She was told she was lactose intolerant, had food allergies, IBS, anxiety, and a nervous stomach.
When Elissa was 20, she underwent emergency surgery to remove her colon. She was one of the first patients to participate in a clinical trial for Remicade back in the day. Unfortunately, the medications kept failing her, she became dependent on high doses of steroids, and she had precancerous cells in her colon.
“I was in college at the time and didn’t feel comfortable telling most people. There were a few occurrences of my bag leaking (one especially memorable experience in the middle of a fraternity party), and I was mortified. However, my recovery also highlighted the thoughtfulness and generosity of my best friends and family members who would drive me to the pharmacy to pick up medical supplies, drive me to doctor appointments, even just sit with me and rest. People really come out of the woodwork – sometimes asking for help is the hardest part.”
At times Elissa felt very alone. She wishes she had known the Crohn’s and Colitis Foundation was available, along with support groups. She says, now, there are so many amazing resources available for people in recovery, including the forum j-pouch.org.
Dani was diagnosed with ulcerative colitis in 2005, when she was just 8 years old. She was initially managed on oral medication then switched to biologics and went through Remicade, Humira, Xeljanz, Stelara, and Entyvio.
“I always knew that surgery was on the table, and I felt like I was always buying time until a new medication came out. In January of 2021 I became extremely sick and was admitted to the hospital for IV cyclosporin to try to lessen my immune response. I was ok enough to leave the hospital and was feeling ok for about four days out of the hospital and then I started to become sick again. My surgeon came around a few times to check on me and introduce himself. He said, “I just want you to know that I’m not the scary man with a knife.” At that time, I didn’t know he would be my surgeon. When I started to get sick again after leaving the hospital, I knew that surgery was going to be the next step.”
From then on, Dani met with her GI doctor and Colorectal surgeon (who work together), and they scheduled her for a subtotal colectomy a few weeks later. She began the 3-step surgical process in March 2021.
“It was a huge adjustment. I constantly felt my bag and it felt so foreign to me. At the same time, it gave me an independence that I had never had before. My plan was to go through all 3 j-pouch surgeries to have an ostomy for nine months and then have a j-pouch. I felt confident that I could adjust to an ostomy again if necessary and that I wanted to give a j-pouch a try.”
Dani got her take down surgery J-pouch in December 2021.
The hope of reversing from the start
Jackie: “The plan was to reverse, but I did have a major panic moment a few months before I was supposed to have another surgery. A friend of mine who had started his journey to a -j-pouch around the same time I did, was one step ahead of me in his surgical sequence, and he was having some major problems. I figured the ostomy was the devil I know, better stick with what you know, because I was afraid of what the other side looked like. But I knew myself, and I knew I had to at least try for a reversal, otherwise I’d spend the rest of forever wondering how it would have gone.”
Jasmine: “From the start, the colectomy was presented to me as a step toward the larger goal of getting a j-pouch. I went into the first surgery planning to try the j-pouch.”
Elissa: “I knew the ostomy would be temporary, but I really had no idea what to expect as far as recovery was concerned. My doctors and surgeons did not explain any potential complications. I wish I had known more questions to ask.”
For Elissa, a pouch was created at the time of surgery that removed her colon. Three months later, she had reversal surgery during college spring break – unfortunately, the reversal failed, she caught an infection and ended up in the ICU. The ostomy was placed again for her body to recover from an additional open abdominal surgery. She then went on to have a successful reversal in July of 2000.
Making the decision to go for a j-pouch
Jackie: “I knew that I could have chosen to keep my ostomy, but there was a real sense of “why wouldn’t you get a j-pouch” from the medical team. There was an undertone in what they said and did that insinuated the j-pouch was the more ideal situation and that I should clearly want to go that route. At the time, I was still regularly following most professional medical advice and didn’t really question it. But the option to keep the ostomy was never really discussed and it was always assumed I would reverse it.”
Jasmine: “Because I was young, otherwise healthy, and it had been confirmed many times through testing that I had ulcerative colitis, rather than Crohn’s disease, my doctors said I was a great candidate for j-pouch surgery. In general, my surgeon told me that close to 90% of j-pouch surgeries are successful, and I felt confident trying based on my background and the conversations with my medical team. By the time I’d had surgery, I’d only had ulcerative colitis for three years and had been in remission for two of them. The j-pouch felt like the best avenue for a life as close to normal as possible given the circumstances, and at 22, with (hopefully) a lot of life ahead of me, that sense of normality was important to me.”
How it felt leading up to reversal
Jackie: “I kept reading about all the things that could go wrong and it really freaked me out. I knew people personally who had some complications and it made it seem less like a potential statistic and more like a reality. The reality is that more people do well but are not often talking about it online. At that time there weren’t enough stories about people thriving after j-pouch surgery. I knew what life with the ostomy was like and I knew I could do that. Welcoming another major surgery and another major change just seemed really overwhelming.”
Jackie started the process in March 2010. She unfortunately had a few complications along the way which resulted in more surgeries and a longer sequence to the j-pouch, so her takedown occurred in mid-2012.
Jasmine: “I often worried something would go wrong that would prevent me from getting a j-pouch. Everything that could go wrong had gone wrong for me to even end up 22 and colon-less, and it was hard for me to imagine something could go “right.” I felt very distrustful after the variety of promises made to me by my medical team over the past year that never came to fruition and struggled with cynicism about what might happen. Coupled with all the negativity online about life with a j-pouch, I became very apprehensive about something either going wrong with my surgeries or my j-pouch failing.”
Jasmine’s j-pouch was created in December 2020 with a diverting loop ileostomy and was fully connected in February 2021.
Dani:“I had read about ‘butt burn’ and that when you first get a j-pouch you are going to the bathroom frequently, so I was concerned about that. I had just gotten used to being able to go where I wanted and not worry about the bathroom, and I was concerned that I was going to be putting myself back into a position where I was more limited.”
What j-pouch recovery was like
Jackie: “The takedown was one of the easier surgeries to recover from for me because that was the only thing they were doing in that surgery. Sometimes surgeons combine steps that can make certain parts more difficult to recover from, but for me it was just hooking up the plumbing, which had already been healing internally for months. Despite the complications I had that resulted in more surgery, it gave my body more time to heal, which I think is part of why my j-pouch has been so successful. The hardest part was understanding that the j-pouch can take a year or so to settle, which means you may still have some accidents here or there in the beginning. It wasn’t an immediate magical fix, but over time I learned to understand my j-pouch and to predict its behaviors.”
Jasmine: “J-pouch recovery is an exercise in endurance and mental fortitude, but I didn’t find it as terrifying as it seemed from reading online. From the beginning, I felt like I had far more control than I did with ulcerative colitis. There was almost no urgency, and I could take a minute or two to finish what I was doing before going to the bathroom, rather than having to drop everything and run. Although you do go to the bathroom quite often at the start, having that control makes a huge difference. One of the harder parts of recovery is the acidic stool – waste in the small intestine has more stomach acid in it, which usually gets broken down by the colon, however, without a colon, that acid creates burning on the skin. My skin was constantly raw and sore the first few weeks no matter how much butt cream or fluffy toilet paper I used. Sometimes the burning pain was so bad it would wake me up at night, but now, almost two years out, I rarely have butt burn.”
Aimee: “This was the hardest surgery because it was so long and so much handling of my intestines, my bowel lost function, so I vomited for eight days after my surgery. My doctors considered TPN, but luckily peristalsis started again, and I could eat!
Elissa: “Honestly, recovering from surgeries itself wasn’t too bad, especially after years of IBD flares. Getting rid of my colon provided almost immediate relief. I just had to be patient and let my body heal.”
Dani: “The recovery was the easiest in terms of there weren’t new incision spots. I had to get used to seeing my stoma hole as it closed in naturally and I was still very sore. I also was going to the bathroom frequently and wasn’t sleeping through the night for the first few weeks, which was hard. I was frustrated that I felt like I always needed to be near a bathroom, but that feeling was temporary. “
Pros and Cons of life with a j-pouch
Jackie: “Honestly…it has been so good. I have a total rockstar j-pouch. I eat anything I want (popcorn? yes! all the nuts? yes! spicy food? Yes, please!), I can hold my bowels for hours upon hours. I rarely have any urgency and in general have peace of mind that I can live my life, go where I want, and UC no longer can control that. The cons exist, but for me, they’re small. I’ve had pouchitis a few times, which feels like UC again, but it’s treated with antibiotics and then you’re back on your feet! I have accidents at night maybe once a year. I still use the bathroom more often than a person without IBD, but it’s mostly because I choose to for peace of mind. My digestive tract in no way resembles a normal one, it’s different how everything works now, but it’s not a detriment in my life.”
Jasmine: “My j-pouch has given me a level of freedom I never thought I’d experience with IBD. I don’t currently take any medications, and I don’t worry about flaring or failing a medication the way I would with my colon. Although I know there’s always the possibility of needing medication in the future, I’ve been given more freedom and autonomy over my life than I ever thought possible. I eat what I want when I want. I sleep through the night. I sit through meetings and classes without thinking about the bathroom. I go out with friends, travel, and exercise. For me, the j-pouch has brought me closer to my pre-IBD or deep remission self than anything else, and although there are permanent tradeoffs to having such major surgeries, I don’t regret my decision in the slightest. There is an adjustment phase and a new normal, but that new normal has enabled me to integrate IBD my life, rather than having my life completely consumed by my illness.”
Aimee: “I have had fistulae since at the anastomosis, so they have been tricky to manage, but Humira has been wonderful to me, keeping them at bay and giving me energy to live a full life. I also need to have the scar tissue at the anastomosis stretched surgically every 6 months.”
Elissa: “J-pouch life has been amazing! I was in the bathroom 20+ times a day before my surgeries and felt like a shell of a human being. I’m now 42 and have had my j-pouch for 22 years. I can do pretty much anything a “normal” healthy person can do, just need to take occasional extra precautions like electrolyte replenishment or dealing with occasional pouchitis or Crohn’s flares. (My Crohn’s diagnosis came after my j-pouch surgery).”
Dani: “The first few weeks/months with a j-pouch were tough. Your body needs to figure out how to function with a new man-made organ. I was only comfortable laying down for the first few weeks after the surgery. I really hit a turning point when I was able to start taking Imodium and Metamucil. They were helpful for me in the first few months and now I don’t need them. Three months after my final surgery, I had moved out of my house and was starting a new full-time job. So, the initial discomfort and increase in bowel frequency were very temporary!!”
What j-pouchers wish they knew prior to their reversal
Jackie: “I always say its trading a large set of problems for a smaller, more manageable set of problems. UC was awful for me and ended up being life threatening. It was no way to live. My j-pouch has given me my life back, but it’s not a cure. It’s not perfect. I still have some small problems here and there, but it’s all manageable and in no way resembles life before surgery.”
Jasmine: “It’s hard to find information on j-pouches, and I think many of us turn to the internet to learn about what life with one might be like. I personally found the internet to contain a lot of negative information, making me more fearful going into the surgeries than I would have been had I just listened to my surgeon. I would recommend limiting time spent online and trying to connect with individuals who have j-pouches/ostomies through your doctor or the Crohn’s and Colitis Foundation. These resources provide a more accurate peek into life with a j-pouch and can allow you to ask questions and connect with someone who’s been through the same thing. Most people who are healthy aren’t online complaining about their j-pouch, which skews the sample of information accessible to the rest of us. Whenever I started to feel overwhelmed by everything online, I reminded myself of something a nurse once said to me: the internet is a showcase of the best and the worse situations, more often than not, you’ll end up somewhere in-between.”
Aimee: “I was told this would be the end of treatment and medicine which wasn’t the case. As I had Crohn’s, not UC, I had many more hurdles ahead. Also, a new pouch is new so it’s behavior post op, is not your life. Your body adjusts to the pouch and output goes slower as the post-op weeks go by. The j-pouch is an alternative to an ostomy bag, but has to be adjusted to also. It’s different from having your colon. After a few months though, you will have longer periods between toilet runs and sleep through the night. I go 11pm to 6am with no pooping, which is so much better than those few months post-op when I thought oh dear, this is hard!”
Elissa: “When I had my surgeries, I was 20. No doctors discussed potential fertility issues. My daughter was born via IVF 9 years ago, though all additional efforts have failed. This is something I wish I had known about – I always wanted kids and would have frozen my eggs. Obviously, every person is different. Also, I still go to the bathroom 6-7 times a day. This is apparently normal (though again, everyone has different experiences).”
Dani: “I can eat salad for dinner with no problem!”
Advice for ostomates on the fence about going for a j-pouch
Jackie: “If you feel healthy and strong both physically and mentally, I would say, try it. I know it’s more complicated than giving a new restaurant a try, but I knew that I’d always have wondered. I knew on the bad days I would have idolized a life with a j-pouch, and I needed to know that it either would or wouldn’t work. I felt like the worst-case scenario was that my j-pouch would fail, and I’d return to an ostomy, which I already knew I could do, and I liked those odds.”
Jasmine: “I think it’s a personal decision dependent on the history and circumstances of each person’s illness. Going through the j-pouch surgeries means additional time spent in the hospital and recovering, which is worth it for some, but not others. Although I can share my experiences, everyone’s body is different, and you can’t always predict how someone else will respond. I think the best thing to do is find a colorectal surgeon skilled in these procedures and discuss whether they think you’re a viable candidate. Finding a skilled surgeon is the best way to hedge against future problems and increase chances of success. Beyond that, I would advise talking to as many people as possible with a j-pouch and permanent ostomy, to get questions answered and hear the pros and cons of each route. Having this information should help you feel more confident in your decision, and if you’re still undecided, you can always put off the decision until you’re ready.”
Aimee: “Tell them to get support, don’t expect instant results, give yourself time to adjust to yet another way of going to the toilet…reach out to the online community.”
Dani: “I think this is a very personal decision and there is validity to both sides. An important thing for me was to remember that people are more likely to write online if they have a bad outcome rather than a good outcome. Everyone’s instinct is to research things online and at some point, I felt like reading everything (both good and bad) was too overwhelming.”
Post-op expectations with a j-pouch
Like any surgery, recovery takes time and patience. The Crohn’s and Colitis Foundation shares the following on their website:
Some patients may experience an increased number of bowel movements, sometimes up to 12 times per day. This will typically decrease over time.
Some male patients may experience sexual dysfunction as a result of nerve damage.
Some female patients may develop scar tissue that surrounds their ovaries and fallopian tubes, which may lead to infertility.
Both men and women should discuss sexual function with their surgeon and ask when it is safe to resume sexual activity.
Ask your healthcare providers what supplies you may need at home, especially if you have a temporary ileostomy.
Your healthcare team will advise you on how to manage your temporary ostomy and how to keep it clean.
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.”
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.