After conducting some tests, doctors diagnosed Lenhardt, now 38, with ulcerative colitis (UC), a form of inflammatory bowel disease (IBD). “The thinking was that when I was on the drugs for my rheumatoid arthritis, it probably was also suppressing my UC, because it’s a drug that treats both conditions,” she says. “And when I stopped it, then all of a sudden those digestive symptoms started to become noticeable.” This diagnosis set off a chain of health complications and surgeries that Lenhardt would have to deal with in the coming years. After she gave birth to daughter Kira, Lenhardt, who lives in Cedar Rapids, Iowa, with her family, went back on the biologic medication, but it no longer worked for her. “Over the next couple of years, I tried so many different medications, and nothing was really controlling my symptoms,” Lenhardt remembers. “So the disease not only continued to spread throughout my large intestine, but it also continued to worsen in severity.” In 2018, she and her doctor decided surgery was the best option. Lenhardt underwent a proctocolectomy with ileal pouch–anal anastomosis, or J-pouch, surgery. This is the most common surgical procedure recommended for UC patients when medication fails to get their symptoms under control, according to the Crohn’s & Colitis Foundation. It typically involves two or three surgeries. During the procedures, both the colon and rectum are removed, and the ileum, or the final part of the small intestine, is made into a J-shaped pouch and connected to the anal canal. Often, a temporary ileostomy is created to allow the pouch to heal. Waste passes through a small opening in the abdomen, called a stoma, and into an ostomy bag. Once the pouch is healed — which typically takes a few months — another procedure is done to reverse the ileostomy. The internal pouch then collects waste, allowing it to pass through the anus so the person can use the bathroom normally. For Lenhardt, these procedures brought immense relief. “I felt so much better after that first surgery because at that point, I had my colon removed, but my disease was gone,” she says. “I felt like my mood was so much lighter, and a weight was lifted off my shoulders.” Then when Lenhardt’s ostomy was reversed, she could hardly contain her excitement. “The nurses told me I woke up in the recovery room and I kept looking under the blanket to confirm that my bag was gone, and I was cheering, still half-conscious,” she remembers with a laugh. “I kept thinking that I did it. I’m done. We’re there.” But while J-pouch surgery certainly improved Lenhardt’s quality of life, she wasn’t out of the woods yet. Just a couple of months after her last surgery, in October 2019, she experienced her first of many bouts of pouchitis, a common complication of the procedure.
Symptoms of Pouchitis
Pouchitis is inflammation that occurs in the lining of the J-pouch. It’s a complication that occurs in one-quarter to one-half of people who have J-pouch surgery, according to the Mayo Clinic. “I advise patients that they should be aware of the symptoms and should expect to have probably at least one episode,” says Stefan Holubar, MD, a colorectal surgeon at the Cleveland Clinic. “They might get lucky and never have pouchitis, but it’s very common.” The cause of pouchitis is not entirely known, but it’s believed it may be an immune response to the different types of bacteria that collect in the pouch. Genetics, being a smoker, long-term use of nonsteroidal anti-inflammatory drugs (NSAIDs), and conditions like heart disease and diabetes may also increase the risk of pouchitis, according to the Cleveland Clinic. Symptoms of pouchitis include:
DiarrheaMore frequent urge to pass stoolAbdominal pain and crampingBlood in stoolTenesmus, or the feeling that you need to pass stool, even though your bowels are empty
Lenhardt describes how uncomfortable these symptoms can be and the toll the condition takes by comparing it to a more common health issue. “It’s almost like when somebody has a UTI,” she says. “You feel like you always have to go, but then you sit down and nothing happens. So you just feel tied to the bathroom, and I think that is one of the hardest things mentally to deal with, that feeling of not being able to do things or go places with my kids because I need to make sure there is a bathroom nearby.”
Acute vs. Chronic Pouchitis and How Each Is Treated
While pouchitis can certainly disrupt day-to-day life, the good news is that in the majority of cases, it is treatable. “For acute pouchitis, which is the most common form, we prescribe probiotics and antibiotics typically for two weeks, and the patient should start to feel better usually within 24 hours,” Dr. Holubar says. Some patients do go on to develop chronic pouchitis, in which the condition recurs multiple times shortly after symptom relief from prescription probiotics and antibiotics. Chronic pouchitis can be more difficult to treat and requires the patient to stay on probiotics or a nonabsorbable antibiotic for long periods of time. This can sometimes lead to what’s known as Crohn’s of the pouch, characterized by debilitating inflammation that’s resistant to antibiotics, narrowing of the small bowel, and fistulizing disease involving the perineum or small bowel, according to a research paper. “That’s typically treated the same as we would treat ulcerative colitis or Crohn’s disease in a modern era with biologic medications,” Holubar says.
Advice for Coping With Pouchitis
Lenhardt had several bouts of pouchitis during the year following the final procedure of her J-pouch surgery in 2019. “Every other month I was getting a new batch of antibiotics,” she remembers. “But as time has gone on, I’m finding that I’m experiencing pouchitis less and less.” According to Holubar, this isn’t uncommon, as he says about a third of patients will get repeat episodes of pouchitis. Though each new case of pouchitis brought on its own difficulties, what helped Lenhardt was some perspective. “As frustrating as the recurrent pouchitis was, I always remind myself to be grateful that it’s temporary,” she says. “The alternative, without having this surgery, is having a disease that progresses throughout my body and progresses in severity, and in some cases, can lead to colon cancer.” Lenhardt recommends practicing a bit of self-care each day. “I always try to start my day with something that centers me,” she says. “Whether that’s meditation, prayer, or whatever that looks like for you, I think it’s important to start the day feeling calm and centered so that you can approach the rest of your day in a positive way.” Another thing that helps her get through the tough times is a strong support system. That’s where her husband, Paul, comes in. “He knows when I’m having more of a tired day, and he’ll take care of dinner or take the kids to swim practice while I rest,” she says. “Surrounding yourself with people who maybe don’t personally understand the process but are supportive and encouraging is so important.” She also recommends finding a support group — either in-person or online — of others with IBD to connect with. “Being from a small town, I didn’t really know anybody else that had gone through this,” Lenhardt says. She found a support group on Facebook that has helped her immensely through coping with her disease. “New things are still coming up for me, and having people that have been there and people to encourage you and guide you and make suggestions really helps you not feel so alone in this process,” she says.
Strategies for Preventing Pouchitis
While there is no foolproof way to prevent pouchitis, Holubar says that, in general, a healthy lifestyle can help. “There’s a lot of research that suggests adipose tissue, also known as fatty tissue in the body, especially in the belly, can contribute to inflammation,” he says. “So maintaining a non-obese weight and a healthy lifestyle with exercise, no smoking, and limited alcohol — things like that can help.” Some research, such as trials described in a review published in May 2019 in the Cochrane Database of Systematic Reviews, suggests that probiotics can be beneficial in preventing relapses of pouchitis. “So, for example, if you have acute pouchitis and you get better with antibiotics, and then a month later, that pouchitis is back, that’s a person we recommend to go on preventive probiotics,” Holubar says. When it comes to taking probiotics to prevent pouchitis in the first place, he notes that there is no good scientific evidence to date that supports this. If one of his patients wants to try it, though, he’s open to the discussion. “It might help for some people, so we don’t discourage it, but there’s not enough evidence to encourage it either,” Holubar says. Factors to consider include cost; probiotic therapy necessitates daily medication, which he notes can get quite expensive. Talk to your doctor about whether probiotics are a good option for you and for recommendations on strain and dosage.
