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.
Parenthood when you live with a chronic illness like IBD can make you feel anxious, worried, and uneasy. As an IBD mom of three, I often connect with and share the stories of fellow women with Crohn’s disease or ulcerative colitis who have brought life into this world, despite their disease.
This week on Lights, Camera, Crohn’s we hear from a soon-to-be IBD Dad, Brad Watson-Davelaar. He was diagnosed with Crohn’s in 2001 at age 17. His name and face may look familiar, as I featured him in an article entitled: IBD Dads: What these patient heroes have to say about fatherhood. In that article, Brad was recently married and discussed his hopes for the future. Those hopes came to fruition, as he and his wife are awaiting the arrival of a baby girl in late June!
Leading up to the pregnancy, Brad was a bit scared of what fatherhood would look like while living with an unpredictable disease. Like many of us, Brad fears when his IBD will rear its ugly head again and cause him not to be as present as he wants to be, hindering his ability to be a “proper teammate” for his wife.
“Prior to my wife being pregnant, I think I was scared. I’ve wanted to be a dad for some time, but with the way my health has been over the last several years, the prospect of having kids while I was in that physical state freaked me out. Not because I didn’t want kids, but because I was worried I wasn’t going to be enough for them.”
Finding out he was going to be a dad
When Brad found out his wife was expecting he was elated. They had been trying for a few months and he was only a couple months post-op from his ileostomy and barbie butt surgery. While Brad knows life as an IBD Dad will have its ups and downs, he knows the highs will far outweigh any of the difficult days.
“I’m so thankful for Shawn, my stoma, for coming in and giving me a new lease on life. I feel ready to tackle this new chapter of our life and all that comes with it. The good, the bad, the ugly, and the beautiful.”
Since he’s lived with IBD for nearly 22 years and has been an ostomate for 6 months, Brad feels his patient journey has conditioned him to deal with the unexpected. He hopes to connect with fellow IBD dads who have paved the way before him and shown all that’s possible.
Discussing IBD with his daughter in the future
As his daughter grows up, Brad plans to be an open book about his battle with Crohn’s.
“I want to help her understand what IBD and ostomies are. Especially ostomies. It will take time, but I believe in being open and not hiding things. I want her to see that my IBD does not define me and show her how important it is to advocate for yourself.”
As Brad and his wife gear up to become a family of three, they are overjoyed and excited about the new chapter in their lives that is about to begin.
“I’ll be there to look after this wee little one, which will fill my heart with warmth. Being able to focus on her achievements will be a brilliant way to get through the rough days. In the past, it was the little things that got me through. Now, I’ll have all the little moments to continually push me.”
His wife, Sydney, feels so lucky to have Brad by her side as they experience this adventure.
“He had struggled so much over the last couple decades, especially these last couple of years and his perseverance and strength through it all makes me know that nothing is too big for him to overcome. I know he is going to be an amazing dad with so much love, nerdiness and laughter. His Crohn’s is a part of him, but his IBD does not define him. I know no matter what we can get through it together. Brad’s last surgery has definitely given him a new lease on life. With a baby on the way, his ostomy will help him be more present, active, playful, adventurous and helpful. I cannot wait to see him hold our little girl for the first time,” she said.
Raise your hand if you were told ‘diet doesn’t matter’ when you were diagnosed with IBD? Personally, the dietitian who visited me while I was hospitalized after my initial Crohn’s disease diagnosis in 2005, scared the bejesus out of me. I’ll never forget her sitting by my bedside with a clip board rattling off all the foods I would never be able to eat. Fruits, vegetables, anything raw, fried foods, wheat…the list goes on. I felt incredibly overwhelmed and defeated in that moment. Even though it was nearly 18 years ago, it’s a moment in my patient journey that is still upsetting to think about.
When Brittany Rogers, MS, RDN, CPT was diagnosed with ulcerative colitis in high school after suffering in silence for five years, she was 20 pounds underweight, exhausted, in pain, and experiencing frequent and urgent trips to the bathroom. She was put on medication and given little to no direction in the way of diet. Inspired by a nutrition class she took in high school and coupled with her own experience with trigger foods, Brittany pursued a degree in nutrition and became a registered dietitian. She strongly believes that learning about nutrition in college and applying that information to how she managed her IBD drastically changed the trajectory of her disease and quality of life.
The driving force behind Romanwell
Managing diet when you have IBD is complex and dietitians treating people with IBD need to be well versed in the latest research to provide safe and effective care. If you’re lucky enough to live near an IBD center, you may be able to see an IBD dietitian for a few visits through your doctor’s office. However, most people don’t have access to these centers of excellence and need more than one or two appointments per year to come up with a personalized nutrition plan to reduce their symptoms, improve their quality of life, and restore their relationship with food. Brittany’s practice, Romanwell, is tackling this issue head on by making expert IBD dietitians accessible to anyone, no matter where they live or work.
“I started Romanwell to be able to provide an exceptional level of care to people all over the country. I don’t want anyone else to suffer with symptoms the way I did for so long. Nutrition and lifestyle factors, such as stress, play a huge role in the symptoms we experience as patients. Unfortunately, people often don’t get the guidance they need to help them feel better,” said Brittany.
Diet research is quickly evolving and more and more providers are acknowledging the role of diet in managing IBD. However, there’s still a long way to go before GI’s everywhere start to refer patients to IBD dietitians routinely.
“If someone’s provider doesn’t have a referral for them, the Crohn’s and Colitis Foundation has a directory of IBD providers including a number of dietitians that they can search for and reach out to. The American Gastroenterological Association (AGA) is also putting together a directory of dietitians that will make finding a GI-specific dietitian much easier. Patients can also always reach out to me and I am happy to point them in the right direction if our practice can’t meet their needs,” she explained.
The unique support of an IBD dietitian
In an ideal world, patients would get support from an IBD-focused registered dietitian starting the day they’re diagnosed. Examples of where it would be helpful to work with an IBD focused RD include:
At diagnosis, IBD dietitians can help answer questions around what they can eat, talk about the definitions of trigger foods, pro-inflammatory foods, & anti-inflammatory foods, and examples of each. They can talk about foods associated with an increased risk for active disease, foods associated with increasing the risk for colorectal cancer, and what to eat during active disease & in remission.
If someone needs IBD-related surgery, dietitians can help them optimize their nutrition before & after surgery to reduce the risk for postoperative complications.
If they’ve lost weight without trying or have a decreased appetite, they’re at risk for malnutrition and would benefit from working with an IBD focused registered dietitian.
Anytime they’re having symptoms- dietitians can help manipulate their diet to reduce symptoms & improve overall quality of life
If someone want to improve their relationship with food, or have a history or active eating disorder, Romanwell can help them expand their diet, include more cultural foods in their diet, and use non-diet evidence-based approaches to reduce symptoms. Dietitians can also help people work on improving their relationship with food, their body, and their food-related quality of life
And, anytime someone has questions about their diet, or are worried about their nutrient intake, they should have access to an IBD-focused dietitian.
“We offer programs rather than individual sessions in our practice which gives us the time to help our clients make sustainable changes to their diet and lifestyle that will last them a lifetime. We build relationships with our clients, take the time to understand their needs, cultural influences on food, food preferences, and implement 100% personalized programs that work for them in their life. 95% of our clients work with us for 12 sessions, which we typically run over 3-6 months. In the beginning of a client’s program, we deep dive into their medical history, labs, supplements, labs, diet and their relationship with food and their body, and then set goals for the end of the program. We meet weekly or bi-weekly to make progress towards the clients goals, and are available via messaging throughout the client’s program to answer any and every question that comes up in the moments when they arise.”
Those of us in the IBD community know how isolating and upsetting it is when you’re in the middle of a flare. Brittany’s goal is to ensure that every client seen at Romanwell feels seen and understood and realizes that they’re not alone in this.
“I want patients to feel as though they’re our only patient and that they’re not alone in this. We believe all patients deserve that level of responsiveness and empathetic care. We want them to feel and know that we care about them and want the best for them,” she said.
Creating evidence-based research that’s digestible for patients
When Brittany started Romanwell, she noticed that no one was talking about the research around diet and IBD on social media and translating that research and know-how into approachable and actionable content that people could easily learn from and implement in their daily lives. You may hear the term “medical nutrition therapy”—this is evidence-based diet and nutrition treatment for a specific medical condition(s) provided by a registered dietitian.
“I started publishing research summaries and tips on my Instagram pages (@weareromanwell; @brittanyb_therd) and people seem to really resonate with the content. Reading research articles is intimidating! It’s hard enough for someone with a scientific or medical background to stay on top of all the findings, let alone someone from a non-healthcare background. I try to create content that summarizes what we know (and acknowledges what we don’t) from the research and always try to find a way that someone could get immediate actionable value out of the content – be that by tips or recipes or swaps for trigger foods, etc.”
When working with clients, Brittany finds it helpful to know that oftentimes education on diet is insufficient in encouraging behavior change- instead, she’s found is that people also need help applying that information to their life.
“For instance, research suggests Crohn’s disease patients who consume the most fruit and vegetables were actually 40% less likely to flare than those who consume the least. Patients we work with often have already seen a dietitian or have received a handout on what to eat that may include this recommendation of eating lots of fruits and vegetables. And although this is great information to share with Crohn’s disease patients, sometimes it’s not very helpful because they often want to consume more fruits & vegetables, but don’t feel safe doing so because it triggers symptoms, or they’re afraid of causing a blockage,” Brittany said.
When implementing this recommendation with her clients, she shares the study, but then looks at a person’s individual diet, asks them which fruits and vegetables they enjoy, and makes a plan together with the client to slowly add in more servings week by week in a methodical manner, sometimes adjusting the texture or amount of what they are eating.
“By the end of the program, most patients are consuming at or above the recommended fruit and vegetable intake and have a huge list of meal/snack ideas they enjoy and that are tolerated so they feel confident the diet is sustainable.”
Working to improve access for patients
The key to helping as many patients as possible get access to the care they deserve is getting their GI providers to refer patients to IBD dietitians and getting health insurers to cover the cost of those services so that patients can make meaningful and sustainable changes that will benefit them for a lifetime.
“I think there’s enormous potential for providers to help their patients have better outcomes by working closely with IBD dietitians and for health insurers to lower their costs by equipping patients with the tools and resources they need to stay out of the hospital. We’re trying to make this a reality by showing that our clients do in fact have better health outcomes after completing our program. We collaborate with every client’s existing GI care team to make sure the patient is getting the support and guidance they need.”
Romanwell is also measuring their clients’ outcomes and recently presented a poster at the Crohn’s and Colitis Congress showing some preliminary results. They’re hoping to submit the results to a peer-reviewed journal later this year.
“Our goal long term is for every patient with IBD to have access to an IBD registered dietitian and for programs like ours to be covered by insurance so everyone can access them,” said Brittany.
Counseling on the complimentary role of diet and lifestyle alongside medication
There’s a tremendous amount of information out there about the pros/cons of certain medications and/or alternative approaches to treatment that can be really confusing, misleading, and scary when you’ve just been diagnosed with a lifelong chronic condition. Some people worry about the side effects of medication and want to “heal their gut” using diet alone.
“We would never judge people based on the information they’ve read or the opinions they’ve formed about what’s best for their care, but we want them to know the evidence-based information so that they can make the best decision for themselves. We want patients to feel as good as they possibly can for as long as possible, so we love it when patients use nutrition along with medication and lifestyle factors to help them feel their best. We don’t believe it has to be either diet or medication, they work beautifully together!”
Looking to the future
Romanwell recently hired a second dietitian and has plans to hire more this year and next year.
“Our goal is to be able to thoroughly train dietitians in how to deliver exceptional care in a way that really helps patients achieve their goals. Unlike the training one might receive to practice inpatient or outpatient dietetics, our training program includes aspects of health coaching, counseling, motivational interviewing, intuitive eating and a weight-neutral approach to health. Since we’re a telehealth practice, we’re able to see clients on their terms and schedule, but that also means we can hire dietitians anywhere around the country which gives us access to much more talent than we’d be able to find locally.”
Romanwell pays for dietitians to pursue licensure in a number of states, so they can see as many patients as possible.
“I can’t even describe in words how incredibly fulfilling it is to get to help others with IBD. It’s been such an honor to help IBD patients get the care they deserve. I’m so grateful I get to do this for my job!”
Mental health often takes a major hit when you’re diagnosed and live with a chronic illness like IBD. I ran a poll on Instagram and Twitter this past week and the results were extremely eye-opening. Not only for the patient community, but for any caregivers, friends, or family who know people with Crohn’s disease or ulcerative colitis.
On Instagram—out of 350 people polled over 24 hours, a resounding 93% responded “yes” to IBD impacting their mental health and causing depression and anxiety. On Twitter, I ran the same poll for 48 hours, of the more than 205 votes, 86% of people responded “yes”.
Dr. Yezaz Ghouri, MD, Director of Inflammatory Bowel Disease Services, University of Missouri School of Medicine at Columbia, offered helpful insight on the topic. I had the pleasure of meeting “Dr. ZaZ” (as he commonly goes by) in person at the Crohn’s and Colitis Foundation’s Mid-America Chapter Gala in November. Dr. ZaZ was awarded the 2022 Catalyst for Mission Advancement award and I was so inspired and intrigued by his work as I was emceeing the event, that I knew we would have to collaborate on Lights, Camera, Crohn’s! We made it happen.
Here’s my interview with Dr. ZaZ about how our IBD can impact our mental health.
NH: “During the first day of the Crohn’s and Colitis Congress 2023 conference it was shared that rates of anxiety and depression are about twice as high in the IBD community compared to the general population–why is that?”
Dr. ZaZ: “The exact cause of IBD is not known. There are some common theories that have been suggested, these include genetic factors, changes in gut microbiome, alteration in immune function of the body, and effect of certain environmental factors. Interestingly, some of these factors have also shown to be associated with mental disorders like anxiety and depression. The gut-brain axis is a nervous system-based pathway that connects the nerve cells from the brain to the gut. This gut-brain axis has been found to play a role in the release of nerve cell chemicals (or neurotransmitters) in the intestines. One such neurotransmitter is Serotonin, which has a well-established role in several psychiatric disorders like anxiety, depression, bipolar disorder, etc. Studies have pointed out an alteration in serotonin activity in the intestines of patients with IBD 1.
The gut microbiome comprises of trillions of species of organisms mainly consisting of bacteria. The healthy gut-microbiome is altered in individuals with several conditions like anxiety, depression, Alzheimer’s, Autism, etc. This alteration is also seen in IBD and has been a subject of active research to better understand the various changes in the bacteria of the gut. Some of these bacteria produce chemicals that can serve as neurotransmitters in the gut. It is unclear if these chemicals could influence the gut-brain axis and contribute towards the occurrence of mental disorders. Last year we published a study that showed this association of increased prevalence of anxiety and depression among IBD patients 2. The added burden and distress was not just limited to IBD patients, the study also showed an overall increased healthcare cost and burden to hospital systems. It is in the best socio-economic interest of the government and the public to address mental health issues in society, especially among those with chronic illnesses like IBD.”
NH: “How can patients best articulate their concerns and communicate with their doctor about their mental health?”
Dr. ZaZ: “IBD patient sometimes suffer from anxiety, depression, sleep disturbances, and other mental conditions like eating disorders. Your GI doctor hopefully has established a healthy physician-patient relationship where you are comfortable to bring up any issues that you would like to discuss with your GI specialist. During my clinic visits apart from addressing the medical aspects of IBD, I frequently have a friendly conversation about my patient’s life in general with a focus on their overall well-being, including talking about their mental health. In addition, several individuals have a primary care provider (PCP) with whom they generally have a good relationship and feel comfortable bringing up any health-related concerns.
Psychiatric conditions can manifest with sleep disturbances, fatigue, loss of appetite, lack of interest in activities that you previously enjoyed, depressed mood, suicidal thoughts, etc. Sometimes IBD flares can contribute to some of these symptoms, especially sleep disturbances due to night-time diarrhea or constant abdominal pain. Use of biological medications can be frequently associated with fatigue that may last a day or two after taking the biologic. In a large-scale UK based study, presence of a diagnosis of IBD was associated with a higher likelihood to cause deliberate self-harm, anxiety, depression, and insomnia. Interestingly, the risk was higher among those with Crohn’s disease than with ulcerative colitis 3.
Remember, mental stress can also contribute to an IBD flare. Frequently I see some of my IBD patients go through an uncontrolled spell of psychological stress, maybe related to personal relationships or their place of employment. This when unchecked can precipitate an IBD flare, and in some cases develop psychiatric illnesses like anxiety or depression. Hence, it is important to have a stress-free life or mitigate stress to minimize its effect on your mind and body.”
NH: “I know you see a lot of college students; how do you navigate these concerns as their care provider? Do you tend to see this more with your younger patients—or is it across the board?”
Dr. ZaZ: “College life of a freshman can be quite stressful. The move away from the comforts of their homes to a new city or town and being surrounded by strangers can be overwhelming. This can cause psychological stress which may precipitate an IBD flare. Moving to college can also disrupt the continuity of care received from their established pediatric or adult GI specialist. Students may skip their medications due to storage issues, changes in insurance, feeling of shame of having IBD or fear of not being able to ‘fit-in’. All these factors can contribute to inadequate management of their underlying IBD. We at the University of Missouri try our best to accommodate college students in our clinics so they are cared for and IBD flares are prevented from occurring. The student health clinics are efficient in recognizing students with chronic illnesses and referring them to GI clinics. I frequently encourage students that they continue to see their primary GI specialist but also establish care in our clinic/hospital system, so in case there is a medical emergency or if they experience a flare, we will be well-informed beforehand about their medical history and have a plan in place to adequately treat them.
In a large study comprising of more than one million IBD patients, it was shown that being a female, having diagnosed with IBD as a child or a young adult and having a diagnosis of Crohn’s disease have been associated with higher likelihood of suicide attempts and suicide death 4.
Mental disorders in IBD are seen across all age groups but are somewhat more pronounced in those individuals whose disease is not well controlled or have not achieved remission since their initial diagnosis. Majority of IBD cases are generally diagnosed at a young age, several times in college students. Unfortunately, we also see frequent occurrence of mental disorders in younger age groups. Students have additional mental stressors when they have a chronic bowel condition like IBD. Many feel that they the lack of freedom in choosing to eat anything they like when they go out with friends or their need for frequent bathroom breaks, which can sometimes hinder them from participating in activities they choose or in making new friends. Many feel embarrassed to disclose their medical conditions to new friends or acquaintances, this perhaps cannot be stressed enough among those with an ostomy bag.
This leads to a state of inadequate social/family support which may push at risk students into developing mental conditions like depression, anxiety or eating disorders.”
NH: “Any advice for caregivers of young patients–who may have concerns about their child/teen/young adult and are unsure how to make sure their child is not dealing with anxiety/depression, but don’t want to overstep or upset their loved one?”
Dr. ZaZ: “It is very important for not just the physicians but also the caregivers involved in managing IBD in young patients to recognize signs of depression or other mental disorders. Do not always assume that if an individual is constantly tired, has disturbed sleep or looks depressed, that it is due to their IBD. Several times these are early signs of depression, and these young individuals need the support and help that they deserve to address these issues. Perhaps adult patients who have depression may recognize it and seek help, but kids or teens generally do not perceive these signs as an abnormal expression of behavior and may not even disclose them to their loved ones. Caregivers who attend clinic visits with pediatric specialists should bring up any unusual behavior they notice about their child and discuss it with the provider.”
NH: “How can mental health issues exacerbate IBD symptoms?
Dr. ZaZ: “Studies have shown that individuals with mental disorders who have IBD have a higher chance of developing IBD flares, they require escalation of their therapy and have increased incidence of death 5. (See Reference 5) This is quite alarming and should be brough to the attention of providers who take care of IBD patients. “Providers are not just prescribers”, simply writing prescriptions for medications, some of which are very expensive, is not enough to heal the patient. IBD is a chronic disease which lasts a lifetime, and medications alone cannot be the solution. Providers need to step up and participate in the mental well-being of their patients. If they are not able to address the mental health related issues themselves then referring to experts in the field is perhaps the best alternative approach. Depression may cause patients to skip their infusion visits or physician visits, uncontrolled anxiety or paranoid states may make them apprehensive about any therapy that they have been appropriately prescribed and may even stop the treatment. IBD patients with eating disorders may starve themselves or eat uncontrollably causing worsening of their bowel condition. These eating disorders are commonly present among young and female IBD patients who have body image disturbance 6.”
NH: “How is anxiety and depression typically managed in patients with IBD? (Medication, talking to a psychologist, etc.?)”
Dr. ZaZ: “The first step to treating anxiety and depression is to approach a provider with whom you are comfortable to freely express your medical complaints, problems, or any issues that you would like to discuss. Psychotherapy or behavioral therapy is probably the preferred approach in mild cases but in individuals with more profound symptoms, medications may be preferred in addition to psychotherapy. Finding a good therapist and setting up sessions at frequent intervals is important. In severe cases with suicidal ideations or attempts perhaps hospitalization may be required.
Multiple medications are commonly used for treating anxiety and depression. A PCP or psychiatrist may be able to find the right one for you, and please make sure you follow up with these providers since these medications may need to be monitored for their side effects and to adjust the dosage. Sometimes GI physicians may feel comfortable to prescribe these medications, but that may generally not be true for majority of gastroenterologists.”
NH: “As a GI, how do you try and facilitate positive relationships with your patients to help ensure they feel at ease with taking on their disease, managing it, overcoming flares/surgery, etc.?”
Dr. ZaZ: “My first step towards approaching IBD is to make sure that the symptoms that my patients are complaining of are truly from IBD and not from IBS or any other illness. Once IBD is diagnosed, I have a detailed visit with my patient with their new diagnosis. I usually encourage them to read up as much as they can and write down questions about their illness prior to this clinic visit. During the visit I start by giving a broad overview of what IBD is and the mechanism of disease process.I do this little exercise of talking about mechanisms by which IBD develops because I have noticed in my experience that several patients feel guilty about having their illness, and believe that in some way it was ‘their fault’ that they developed IBD. We then focus our attention on what are the available treatments why I think the recommended treatment would be a good fit, so the patients can make an informed decisions about their choice of therapy. I highlight the signs or symptoms they need to look out for that could suggest a complication or flare up of IBD. We provide them access to communicate with our clinic team if they have any questions; if they are concerned about a flare or if they suspect side effects from their therapy. Next, I answer questions they may have come up with during my discussion or from their personal research prior to the visit. Once the questions are answered I provide them with written material about their illness. I frequently encourage our patients to join patient support groups and direct them to online sources for information about IBD like the website for the Crohn’s and Colitis Foundation.”
NH: “Why is it so important to focus on whole person care–and recognize that IBD impacts more than the GI tract?”
Dr. ZaZ: “If we understand the mechanism by which IBD develops in the body, we can say that a dysfunctional immune system perhaps has the central role in the disease process. This immune system is connected to the entire body, it’s in our blood, guts, and other organs. Abnormal functioning of this immune system is likely to affect the entire body, although in IBD this abnormality primarily targets the bowels. But we frequently encounter what are called the “extra-intestinal manifestations of IBD”. These are referred to conditions that cause joint pains, skin rashes, eye redness, oral ulcers, liver disorders and other symptoms or signs that can be encountered in patients with IBD. Beyond these, patients with IBD are shown to be associated with higher incidence of mental disorders, pregnancy-related complications, chronic fatigue, and vitamin/mineral deficiencies. The effect on the bowels by this disease has a major impact on what one can eat, thereby limiting their nutritional intake. It is only fitting to treat these individuals as a whole, and not just their bowels. In terms of methods of treatment, apart from allopathic medical therapies, several other modalities of treatment are now being explored and accepted. Addressing diet and exercise is an important aspect to maintain healthy lifestyle in general, and especially so in patients with IBD. Running or other forms of cardio-based exercises have been shown to have a positive impact on the disease. Consuming healthy dietary supplements, like probiotics have been shown to be beneficial. Relaxation techniques and meditation also help keep oneself stress free, and perhaps prevent development of mental disorders as well.
One last thing we must also remember is that in today’s world social media can contribute to a lot of mental stress and anxiety, especially where disinformation campaigns can lead to confusion and poor choices in life. Hence it is important to have reliable resources to gain knowledge about IBD and its therapies. Sources like the Crohn’s and Colitis Foundation and its members like Natalie have been leading in educating several individuals through various platforms. In summary, eat healthy, exercise regularly, educate yourself about IBD, try to relieve stress and follow up with your doctor for medical care.”
I hope this article sparks a conversation and allows you to feel less alone in your mental health struggles. The findings show it’s anything but “just in your head.” Your feelings, fears, and struggles are valid. You are loved. You are not a burden. You are worth it. You matter. We need you here. Remember that.
If you’re thinking about suicide, are worried about a friend or loved one, or if you would like emotional support, call 988 any day of the week, any time. The 988 Suicide and Crisis Lifeline (formerly known as the National Suicide Prevention Lifeline) provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week, across the United States.
Reference Guide List
1: Coates, M. D., Mahoney, C. R., Linden, D. R., Sampson, J. E., Chen, J., Blaszyk, H., Crowell, M. D., Sharkey, K. A., Gershon, M. D., Mawe, G. M., & Moses, P. L. (2004). Molecular defects in mucosal serotonin content and decreased serotonin reuptake transporter in ulcerative colitis and irritable bowel syndrome. Gastroenterology, 126(7), 1657–1664. https://doi.org/10.1053/j.gastro.2004.03.013
2: Tarar, Z. I., Zafar, M. U., Farooq, U., Ghous, G., Aslam, A., Inayat, F., & Ghouri, Y. A. (2022). Burden of depression and anxiety among patients with inflammatory bowel disease: results of a nationwide analysis. International journal of colorectal disease, 37(2), 313–321. https://doi.org/10.1007/s00384-021-04056-9
3: Umar, N., King, D., Chandan, J. S., Bhala, N., Nirantharakumar, K., Adderley, N., Zemedikun, D. T., Harvey, P., & Trudgill, N. (2022). The association between inflammatory bowel disease and mental ill health: a retrospective cohort study using data from UK primary care. Alimentary pharmacology & therapeutics, 56(5), 814–822. https://doi.org/10.1111/apt.17110
4: Xiong, Q., Tang, F., Li, Y., Xie, F., Yuan, L., Yao, C., Wu, R., Wang, J., Wang, Q., & Feng, P. (2022). Association of inflammatory bowel disease with suicidal ideation, suicide attempts, and suicide: A systematic review and meta-analysis. Journal of psychosomatic research, 160, 110983. https://doi.org/10.1016/j.jpsychores.2022.110983
5: Fairbrass, K. M., Gracie, D. J., & Ford, A. C. (2022). Relative Contribution of Disease Activity and Psychological Health to Prognosis of Inflammatory Bowel Disease During 6.5 Years of Longitudinal Follow-Up. Gastroenterology, 163(1), 190–203.e5. https://doi.org/10.1053/j.gastro.2022.03.014
6: Stoleru, G., Leopold, A., Auerbach, A., Nehman, S., & Wong, U. (2022). Female gender, dissatisfaction with weight, and number of IBD related surgeries as independent risk factors for eating disorders among patients with inflammatory bowel diseases. BMC gastroenterology, 22(1), 438. https://doi.org/10.1186/s12876-022-02526-0
Managing a chronic health condition often means receiving medication through an infusion or a self-injection. If the thought of getting or even giving a shot brings on tears and fears, you are not alone. It’s no surprise, two-thirds of children and one-fourth of adults have apprehension and anxiety around needles. So, what do you do when your child needs to take self-injections to manage their IBD? It’s a complicated and emotional process for everyone involved.
This week on Lights, Camera, Crohn’s we hear from a certified Child Life Specialist, a former pediatric patient who experienced self-injections, and two mothers whose children were diagnosed with IBD at a young age.
Phylicia Petit is a Certified Child Life Specialist at a Children’s Hospital in Minneapolis, Minnesota. She says being truthful with your child about the self-injection helps to build trust.
“Prepare your child for what they may experience in an age-appropriate manner. Use soft language. For instance, instead of saying “don’t move,” say “hold still.” Avoid phrases like “you’re almost done” and “it’ll just take 3 seconds”. Instead, praise your child for what was done well. Say, “you did a great job holding your arm still” or “thank you for telling me how you felt during that.”
Phylicia also says if you are calm and relaxed, your child will be calmer and more relaxed.
“Children often feed off their parent’s emotions. Use gentle and helpful words such as, “do the best work that you can do,” “you did it!” and “your job was to hold still like a statue, and you did that so well.”
Setting a routine
By giving the injections at the same time of day and in the same place, children cope best when they know what to expect. Children’s bedrooms are a place of comfort, so use a different space.
Phylicia says that by offering choices, it gives your child a sense of control. You can achieve this by saying “do you want the injection in your right leg or left leg?” and “do you want me to count to three?”
Reduce the pain
No matter your age, most people don’t enjoy needles. You can help reduce the pain for your child by using numbing cream. Contact your local pharmacist or GI to discuss topical anesthetics.
Buzzy uses vibration and ice to distract the brain from feeling pain.
Shot Blocker uses several blunt contact points to saturate the sensory signals around an injectionsite to distract from pain signals
“Don’t forget, you are a comfort to your child. Comfort positioning can be used by parents and caregivers during injections to reduce stress and anxiety in your child and help safely immobilize an arm or leg,” said Phylicia.
Comfort and distraction items:
Favorite TV show
Squeezing a squish ball
Have your child sit up. Children are often more scared when they are lying flat. If you need help holding your child still, try holding them in your lap in a firm, but comforting position.
Practice deep breathing. Take a big breath through your nose, then blow out through your mouth. Have your child do this 3 to 5 times. To make this more visual for a little one, you can use a paper flower, pinwheel, or bubbles, and practice this before, during, and after the shot.
“As a former pediatric patient there were a couple of things that helped. Finding ways to numb the spot prior, whether it was ice or a numbing cream. Using a room, I could distract myself in (typically with a TV). If I was able to do it myself, I would set up the space, so I was comfortable. If my mom helped this still applied, but we talked through the entire injection to occupy my mind. It came down to comfort and finding ways to manage my anxiety around the shot. Over the years, it got easier, especially when we switched from the auto-injector to the manual shot,” said Natasha.
Here are Stacy’s tips for caregivers when it comes to injections:
Acknowledge that as a mama this is going to be hard. “You are going to feel sad and wonder why you and your child have to go through this. It’s going to be hard to watch them have anxiety about the shot and to feel pain. Get support for yourself for this.”
Try not to let your child see your pain. “Even though you are feeling this way, you know that giving them their meds is going to (hopefully, although it might take a few different meds to find the one that works) make them feel better and happy and more like themselves so approach your child with compassion and assurance about the potential of the meds to make them feel better.”
Try to have a calendar that shows when the shot is due but don’t talk about it too much if they are not bringing it up. “Remind them the day before or the morning of the shot and set a time to do it.”
There are practical things that may work to ease the pain of the shot. “Ice before and after. Rubbing the site after it goes in. Emla cream is a great numbing cream. My son is 22 and has been getting infusions, injections, and blood tests since he was 2 and numbing cream is our friend. We also used the Buzzy. It’s held on the skin before and after the shot and it stimulates the skin to reduce pain.”
Offer a reward. “At times I offered something post shot that motivated him when he was younger. Perhaps being able to watch a little more TV that day. Or a small new toy. Or a food treat that they can have, and it could be special for the shot day.”
Look into having a home nurse, if needed. “My son has been on so many of these meds since he was 7. When he was on Humira from age 9-10, it was before the citrate free (pain free) version and the Humira shot was very painful. It became too hard for me to do it and was too difficult for our relationship. It is rare that you can get insurance to cover a home nurse to do this, or to bring the child to get the GI office nurse to do it. We were able to pay a nurse to do his Humira shot for a brief period of time until he adjusted to it. It helped a lot.”
Cindy’s 12-year-old daughter was diagnosed with Crohn’s disease four years ago. She helps her daughter with weekly Humira injections and also offers helpful advice from a caregiver’s perspective about what it’s like to give your child an injection and cope with the difficult experience.
Don’t let your nerves show. “When I became responsible for giving the injections at home, I was nervous about doing it and it was important to me that I not transfer my own personal anxiety to my daughter. To this end, I really wanted to practice giving shots on anything other than her, so that when I had to inject her, I felt comfortable with what I was doing. Unfortunately, I only came upon the advice later, so it didn’t help me at the time…but I heard to use an already used syringe on a naval orange for practice.”
Do the injection in a neutral space. “A psychiatrist advised us to do injections in a neutral place. I had been giving my daughter her injections in bed because to me, this was the place where she was most comfortable. Unfortunately, she developed sleep problems, and our psychiatrist helped me understand that a negative association with the injection is not something that you want to combine with a happy place. In the summer, we inject it on our back porch and in the colder months we usually do it in our guest bedroom.”
Syringe instead of auto-injector. “We also find the syringe to be so much better than the pen. The pen made us feel tense and the lock was Pavlovian. The syringe allows for more control. No sounds. Go fast or go slow. My daughter takes a lot of comfort in her Buzzy.”
It gets easier. “Not better…but easier. For the first couple months, we had to physically restrain my daughter when injection day rolled around. It was soul shattering. However, we all did become used to what needed to happen and now (while not fun at all, it is a non-event). We do the injection now and move on with our day. We are thankful for the ease and convenience of injecting at home, and always thankful this medication is preserving my kid’s quality of life.”
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.”
It’s safe to say every prep for a colonoscopy is a shit show. The show just looks a bit different each time. I completed another annual colonoscopy this past Friday, and the process still keeps me on my toes, even after more than 17 years of living with Crohn’s disease. As those of us with IBD know, it’s so much more than the prep. It’s the anxiety of wondering if our disease is active. It’s the worry about whether our IBD is going to act up and be triggered by the ungodly amount of laxative we are ingesting in one sitting. It’s the fear of going through more trauma getting an IV and dealing with nurses and a care team we’re unfamiliar with. It’s resenting the fact that you’re a young person needing a colonoscopy…and the list goes on.
I did my second-ever pill prep (SUTAB) this time. I find swallowing 24 pills to be easier than guzzling anything that tastes unpleasant. There was a bit of a monkey wrench in my game plan this time around, when my gastroenterologist’s nurse informed me over the Patient Portal that magnesium citrate saline is recalled. Because of that, my doctor created an additional prep to make up for that. For some reason, the 24 pills deemed worthy for the rest of society to take to get cleaned out isn’t good enough. I received instructions two weeks prior to my scope that quite frankly scared the bejesus out of me.
Along with the 24 SUTAB pills and 96-plus ounces of water, patients are expected to:
Take 1,500 to 1,600 mg of magnesium citrate pills, twice (This adds 12 pills to the prep, and they are horse pills)
30 ml of Milk of Magnesia
Two enemas…yes, you read this correctly.
…the moment I received this news, my chest tightened, and I started to freak out. Regardless of the prep you choose (you’re “allowed to choose any one you like:”) …this is also “required”. Knowing this ahead of time made my mind race and I kept going back and forth about whether I was going to put myself through it or be my own advocate and go a bit rogue. It’s a bit daunting when the instructions are in CAPS and there’s the threat of needing to do everything over again.
Here’s what I did for my prep
It’s easy to talk a big game and say “there’s no way I’m doing this” …but at the same time, there’s a worry that looms that if you don’t, you may need to do another scope because you aren’t cleaned out enough. I’ve always been a bit of a rule follower, so it tends to take a lot for me to go against the grain.
I always do a self-imposed liquid diet to give me some buffer in case I encounter issues with the prep. My last meal is generally the Sunday night before a Friday scope. I allowed myself some crackers on Monday night, but other than that, I was strictly liquids all week. It’s brutal, but it always pays off in the end.
I bought magnesium citrate pills, the SUTAB pills, and the fleet enemas. I didn’t bother getting the Milk of Magnesia.
I took the first 1,500 mg (6 pills) of magnesium citrate, starting at noon the day before my 11:30 am colonoscopy. To me, it was a lot easier doing the pills than having to drink an entire bottle of magnesium citrate, which immediately causes me to vomit. I then timed out the 12 SUTAB pills, by setting a timer on my phone. I took one every 2-3 minutes. All you do is take the pills with 16 ounces of water and then follow that with drinking 16 ounces of water two more times over a couple of hours. I was “done” with my prep by 4 pm the day before my scope and wasn’t running to the bathroom too much.
I went to bed and set my alarm for 5 a.m. with the intention of doing the other 12 SUTAB pills + the additional 6 magnesium citrate. At this point, I was still on the fence about whether I would try an enema.
I walked downstairs in my dark house as my family slept and turned on a few lights so I could lay all the pills out on the kitchen counter. It was just me—all these enormous pills—and my thoughts. I got the 12 SUTAB down and after about 30 minutes I started feeling ill. I ran to the bathroom and vomited quite a bit…at the end I puked up bright red blood. It was petrifying. I screamed for my husband while I was on my hands and knees on the bathroom floor at 6 am. He ran down the stairs and could see how much anguish I was in. I immediately called my mom who is a nurse and she told me not to take anymore pills and that my prep was done.
My mom, who lives out of town, has been with me for every single prep since diagnosis, but this time around, she wasn’t since it’s so close to the holidays. Not having her by my side added a bit to the stress. I asked her if I should do the enema and had some choice words. She told me not to do it. I agreed. Hospitals are running low on enemas right now, so the instructions said to “bring an enema to the hospital in case you need it.”
Speaking up prior to the procedure
My scope wasn’t until 11:30 a.m., unfortunately it was very busy at the hospital, so I didn’t get mine until 1:15 p.m. When you haven’t eaten in nearly a week and your head is pounding from dehydration, every minute feels like an eternity. When the nurse finally got me from the waiting room, we got to the endoscopy suite and while I was still in my street clothes, she asked me if I had my enema with me. I froze in my tracks. I told her I forgot it on my counter (I purposefully forgot it on my counter) …and I proceeded to go into an explanation about how ridiculous it is to expect this of patients, how unnecessary and over the top it is and that I refuse to do it. She asked me if I did the enema earlier in the morning, I said no. To my surprise, she completely empathized with me and said she couldn’t agree more that it’s making all their procedures run late, that no other GI’s require it, and that she knows after 17 years with Crohn’s I know what I’m doing. She was whispering in cahoots with me, and it felt SO good to feel validated and heard.
When I told her I had difficult veins, rather than rolling her eyes or downplaying my fears, she listened and was so kind. She took a close look at all the options and ended up choosing a vein in my right hand. She got me with the first stick and immediately all my anxiety around the IV went away.
I informed my GI and anesthesiologist that I had vomited blood while doing the prep. They let me know that was from throwing up and it caused the capillaries in my esophagus and stomach to break and bleed. Because of that I was told prior to my procedure that in the event there was blood down below, an endoscopy would also need to be performed. Luckily that was not the case! I was given an antacid in my IV to help resolve any possible issues. I made the mistake this time of not taking my prescribed Zofran to prevent nausea. If you have a history of vomiting with prep, I highly recommend getting a script and taking this 30 minutes prior to starting your prep. In the moment, I was already taking so many pills I didn’t feel like adding one to the mix, but I wish I had.
The colonoscopy results
When I woke up from that amazing propofol nap I was thrilled when my GI gleefully walked into the recovery room with a huge smile on her face and told me that my small bowel and colon were “pristine”, that everything looked gorgeous, and that I was still in remission. The discharge notes state there is “normal mucosa in the entire examined colon” and that my “end-to-side ileo-colonic anastomosis” (where my small intestine was reattached to my large intestine from my bowel resection surgery in 2015) is characterized by “healthy appearing mucosa”. No biopsies were taken and the “quality of the bowel preparation was excellent”.
Remission is a complicated term and one I don’t take lightly. I reached surgical remission in 2015, after a decade of ups and downs. While I’m so grateful to continue the 7-year-streak of remission, I’m aware that tomorrow things can change. All any of us can do is focus on the right now and try not to dwell on what could be or what can happen. Remission is just a word—I didn’t do anything to deserve it, no one does. So much emphasis can be placed on being in remission, and I get that it can feel like a big deal—but IBD, whether you’re in “remission” or not is unpredictable, so there’s no sense in thinking you’re in the clear or invincible just because you’re told you’ve reached it. Remission does not mean you are completely free of symptoms.
My tips for going through a colonoscopy
Schedule your scope during an early time slot. Not only does this allow you to eat a lot sooner, but you’re also more likely to be taken right on schedule and not face any delays. For my 11:30 a.m. scope, I wasn’t at a restaurant until 3 p.m. I will say as an IBD mom, the 11:30 a.m. time was ideal in the fact I was able to get my two older kids ready for school and drop offs had already taken place before my husband and I left for the hospital.
Arrange childcare as you’re scheduling your scope. It’s challenging as an IBD mom or dad to have to worry about who is going to take care of your kids during procedures. Get the available dates for your colonoscopy and figure out childcare as you’re scheduling so there’s one less moving piece to deal with. My mother-in-law watched our kids from 9:30 a.m.-4:30 p.m. and it was comforting to know I had nothing to worry about while my husband and I were away.
Add in some buffer with a liquid diet for a few days. I’m not saying you need to go crazy with the liquid diet, but even doing one extra day of liquids will really ease your prep when it comes to what you need to pass. It also gives you a bit of leverage if things don’t go as planned when you’re trying to get it all down.
Listen to your body and do what you’re comfortable with. While there are guidelines and recommendations if you are vomiting, feeling sick, struggling to make it through the prep, just do what you can. Don’t push yourself to the brink of putting your health at risk. The SUTAB pills specifically say “Do not take other laxatives” … so how is a patient supposed to feel when their GI tells them to do a laundry list of additional laxatives?! The general population does the prep, without any add-ons. We should be able to do the same. I had to chuckle when I was told my prep was excellent, when I went off the grid and did what I felt was best. Before my procedure I smiled at my doctor and told her I did my best…and that’s all they can ask for.
Get labs ahead of time. The past few years my care team has tried to save me a trip to the lab and tried to get lab work through my IV. Each time, it’s been a nightmare. Last year the nurse in recovery stuck me 8 times and I was so dehydrated she never got any blood. She was unkind and rough and left me in tears. That was it for me. This year, I did labs the Monday before my scope. Having that checked off my ever-growing patient to-do list eased my anxiety and the nurse who did my IV said because she didn’t need to get labs through my IV, the needle could be a lot smaller—score!
Count the pills. I noticed this time I was given one extra SUTAB pill in my prescription bottle. I triple counted to make sure. There should be 24, total. Make sure not to take any extra.
Be cognizant of the time of year you get your scope. Get tests and procedures done prior to the end of the year when you’ve most likely reached your deductible, so you save money. I have a bone scan scheduled this week as well, crossing everything off the list when it’s covered.
Always remember gummy bears are a liquid. I share this year after year but so many people still seem unaware that this is the case. The day prior to a scope you need to steer clear of red and purple gummy bears, but you can eat gummy bears throughout a liquid diet and the day before your scope. The ability to chew something and have something sweet is a gamechanger. It’s a great way to chase prep that doesn’t taste good, too. This time around my sweet daughter took it upon herself to take all the red gummy bears from the bag so I wouldn’t accidently eat one…she made a pile of red gummy bears and proceeded to eat all of them.
Check about patient savings options. SUTAB is a bit pricier than other preps, you can save by going to http://www.sutab.com and printing off a coupon that brings the cost down to $40 with most insurances. Look into this regardless of what prep you do to make sure you’re not overpaying.
Feel empowered in what you’ve endured. Going through colonoscopies with IBD is not for the faint of heart. Chances are you have your own routine and know what works for you. Stick to it and speak up if something doesn’t sit right with you. Plan that post- scope meal ahead of time and reward yourself afterwards. You’ve been through a lot and deserve to recover and rest.