What It’s Really Like Living With A J-Pouch
Paul Richman should’ve known something was up when he saw blood in the toilet after using the bathroom one night. He was in college at the time and had been at a bar with friends, so he chalked it up to too much to drink and a steady diet of fast food.
Then, a few days later, Richman was driving to his student-teaching job and had to pull over on the side of the highway to go to the bathroom—something that had never happened before. “That’s when I knew something was really wrong,” he says. “Just a couple of months later, I was diagnosed with ulcerative colitis.”
Ulcerative colitis—also called UC or colitis ulcerosa—is a chronic, inflammatory bowel disease that causes inflammation and ulcers in the large intestine (the colon) and rectum, says Matilda Hagan, MD, co-director for the Center for Inflammatory Bowel and Colorectal Diseases at Mercy Medical Center in Baltimore. “It’s also an autoimmune disease, where your immune system starts mistakenly injuring the lining of your colon,” she says. The result? Rectal bleeding, bloody diarrhea, and abdominal cramps and pain—all common symptoms that Richman faced, and which medication didn’t help.
“Sometimes, the immune system can find a way to outsmart the medications,” says Dr. Hagan. When that happens, j-pouch surgery is often the next step. Here’s what that procedure entails, how that process unfolded for Richman, and what life with a j-pouch really looks like.
Understanding the process
When colon tissue is damaged severely by ulcerative colitis and medications fail to control symptoms, a surgeon will remove the colon and rectum and use the end of the small intestine to form an internal pouch, which is commonly shaped like a J.
“I think of it as a replacement colon,” says Richman, now 34 years old and a second-grade teacher in Malvern, Pennsylvania.
The procedure usually happens in two parts: First, the colon and rectum are removed, and the pouch is connected to the top of the anal canal. During that first surgery, a temporary ileostomy is also created, which is a procedure that constructs a pathway from the small intestine to the outside of your abdomen so solid waste and gas can exit the body without passing through the colon or rectum. “This gives the j-pouch time to heal before the second surgery, which usually happens anywhere from eight to 12 weeks later,” says Dr. Hagan. During this subsequent procedure, the small intestine is connected to the j-pouch, which then collects waste and allows stool to pass through the anus in a bowel movement.
“I know it sounds intense, but when I heard about how it might help me, I was like, ‘Where do I sign up?’” says Richman. According to one study, 80 percent of patients said their quality of life five years after j-pouch surgery was much better, and 96 percent said they were satisfied overall with the results. “For me, it came down to my future outlook,” Richman adds. “I was 21 years old, and I didn’t want to wear an adult diaper for the rest of my life.”
Adjusting to a new normal
After a successful surgery, Richman went through the same adjustment period most patients face after a j-pouch procedure.
“I remember my doctor telling me the j-pouch starts out the size of a grape and grows to the size of a softball, but that takes time,” says Richman. “Once the pouch fills up, you get the sensation to use the bathroom—and because it’s so small in the beginning, it fills up quickly, which means you will use the bathroom a lot. I’m talking 12 or more times a day.”
What’s more, you might have a sense of urgency even when you don’t need to go. “When my pouch was new I could feel it spasm, which made me feel like I had to go to the bathroom when I didn’t,” says Richman. “That can be an annoying side effect, especially because that constant sense of urgency will make your backside raw.”
Another side effect Richman experienced—along with up to 50 percent of patients who have j-pouch surgery—is inflammation of the pouch (pouchitis). Even though the j-pouch procedure is designed to stop the body’s inflammatory attack on the colon, research shows that the same immune cells that attack the colon in ulcerative colitis can attack the j-pouch and cause similar symptoms to UC, including diarrhea, crampy abdominal pain, increased stool frequency, dehydration, fever, and joint pain. The main treatment for pouchitis is antibiotics, which fight bacteria in the j-pouch that could also be causing the inflammation.
Regaining muscle memory
Finally, there’s the issue of retraining the muscles to control your bowel movements—a process that can be as embarrassing as you might imagine, says Richman. “I’ll never forget the first few days after my surgery when I started to have to use the bathroom but my butt muscles weren’t strong enough, and every time I stood up I’d defecate all over the place,” says Richman. “I’d be like, ‘Sorry, I can’t hold my stool. I don’t know what to tell you!’”
And while it’s humbling to be a 21-year-old guy learning how to do kegel exercises, Richman says they really did help. “Did I want to put a rubber glove on and stick my finger in my butt and bear down? Nope. But that’s what I did for 10 minutes every hour for 15 hours a day,” he says. “After a few days, I could stand up without going to the bathroom on myself. It’s proof that throughout this process, sometimes you have to try things you really don’t want to do.”
Thriving a decade later
It’s been 14 years since Richman’s surgery, and he’s still glad he did it. “My j-pouch is at full capacity, and I very rarely feel urgency,” he says. “Also, my sphincter muscles are very strong. I can hold stool for a long time now if I have to.”
While he still uses the bathroom more than 12 times a day—and his stool is typically the consistency of toothpaste, which is also normal after a j-pouch procedure—Richman likes to focus on the upsides.
“Since I don’t have a large intestine, I never get stomach aches,” he says. Last summer, Richman and his wife traveled to the Dominican Republic. The summer before that, they went to Greece. And while he has to watch what he eats and avoids drinking too much, Richman says he mostly forgets his j-pouch is even there.
“It’s been a total game-changer,” he says. “I wouldn’t be able to live the life I do without one.”
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