Living with ulcerative colitis can make your life unpredictable, since you never know when or if diarrhea, fatigue, or abdominal pain will take over your day. You may even be considering having J-pouch surgery, an operation that allows you to eliminate stool after having your colon and large intestine removed. People with ulcerative colitis may choose to have this done if medications haven’t eased their symptoms to a manageable point.
Ulcerative colitis causes inflammation and sores in the lining of your large intestine and rectum. The condition can be extremely difficult to live with, and challenging to treat as well. While there are various medications used to treat the condition, your doctor may recommend having a series of operations to remove the affected parts of your digestive tract in the event the medications aren’t improving your case, according to the Cleveland Clinic. As part of those surgeries, your doctor may create an ileal pouch inside of your body (a small chamber that collects waste from digestion) using part of your small intestine. That pouch will then be attached to your anal canal so you can go to the bathroom. There are actually three types of pouches, but doctors commonly create a J-pouch because it functions the best, the Cleveland Clinic says. The entire process of removing the affected intestine and creating the pouch generally takes place over two to three operations.
The thought of having any kind of surgery is daunting, let alone a multipart one that involves removing part of a major organ. Understandably, if this is something you or a loved one is considering, you may have lots of questions about the procedures or feel anxious. With the help of a renowned colorectal surgeon and four people who’ve had the operations, we’ve put together nine things you should know about J-pouch surgery.
1. J-pouch surgery is actually a series of operations.
Your doctor may need to perform two or three procedures before you have a fully functioning J-pouch, and the number of operations you have depends on the severity of your ulcerative colitis symptoms and your overall health, says Feza Remzi, M.D., director of the Inflammatory Bowel Disease Center at NYU Langone and professor in the department of surgery at NYU Grossman School of Medicine. Typically, people with ulcerative colitis have two operations. In the first step of your surgery, your doctor will remove your colon and rectum and construct a J-shaped pouch that allows you to store and pass stool. During the first surgery, your physician will create the pouch and a temporary hole in your abdomen called an ostomy that allows waste to pass into an ostomy bag placed outside of your body, the Mayo Clinic explains. The ostomy is only temporary, lasting from three to six months, according to the Cleveland Clinic. This time allows your J-pouch to heal before being connected to the rest of the small intestine, which happens during the second surgery, according to the Cleveland Clinic.
Some doctors may attempt to perform the operation in one stage, but Dr. Remzi cautions that these single-step operations have a higher infection risk. “Patients need to know what they’re getting into,” he tells SELF. If your doctor recommends this option, then you may want to ask about the associated risks and why you’re a good candidate for a single operation.
2. It can help to meet your ostomy care nurse before your operations.
You may want to ask your doctor whether you can meet your enterstomal therapist, who can help you get comfortable using these bags, says Cristal Steuer, 39, who had her surgery in 2011. Enterstomal therapists are nurses who specialize in ostomy care, and some hospitals like the UNC School of Medicine allow you to meet with your nurse before your operation. Scheduling time with your nurse before your surgery can help you get more comfortable using the ostomy bags (which is important since you may use them for several months). And after the surgery, your doctor might not be as responsive as you’d like, Steuer explains. When she was having issues with her ostomy, she would call the nurse and get a reply faster than if she tried to reach a doctor. “I used to get terrible rashes around where you would stick the bag on. The ostomy care nurse would give me tips to fix that, or if something wasn’t working or if I had symptoms, I could find out if it was worth coming into the hospital,” she tells SELF. “The ostomy nurses were readily available and were very supportive. They deserve a lot of praise.”
3. You may want to practice using your ostomy bag before your surgery.
Deborah Krevalin, 54, who had her operations in 2018, struggled to get her ostomy bags to stay on, and they irritated the skin on her stomach. She says the complications affected her mental health for the six weeks that she had the stoma. “I would go to the family room to watch Jeopardy! with my husband, and I would all of a sudden realize my bag had fallen off,” she tells SELF. “I would cry, and I’d have to run into the bathroom.”
In hindsight, Krevalin thinks learning how to change the ostomy bags before her surgery and while she was recovering in the hospital would have helped. “Anyone who is going to have this, get practice. No one should be turned loose if they’re not feeling 100% confident that they can take care of themselves,” she says. She recommends having a traveling nurse come to your home to help you practice before your ostomy surgery if at all possible. (This can be tough to coordinate for various reasons and maybe especially intimidating during the pandemic. You can also look into scheduling an appointment with your ostomy care nurse, who may be able to help you practice at their medical center.)
4. Ordering ostomy bags before your operation is useful.
There are many types of ostomy bags, and your ostomy care nurse can also help you determine the best one for you based on your body type, daily activities, and personal preferences, according to UChicago Medicine. Once you’ve decided on the type of ostomy bag you want, it can help to order them prior to your operation, says Jess Mazelis, 29, who had her surgery three years ago. “Get as many samples as you can before your surgery, and have them ready to go,” Mazelis tells SELF. “The last thing you want to deal with when you’re recovering is talking to medical suppliers. You want to make everything as easy as possible on you, because you’re not going to want to think about anything except recovering once you get home,” Mazelis says.
5. Talking to people who have been through J-pouch surgery can be comforting.
The only people who can give you a true idea of what going through J-pouch surgery is really like are people who have been through it themselves. Dr. Remzi advises connecting with other patients, preferably ones who went to the same surgeon, to get a feel for what to expect from the surgery and to make sure you feel comfortable with your medical team.
In addition to offering practical advice, talking to others can be emotionally comforting, says Kimberly Hooks, 37. When Hooks had a three-stage J-pouch procedure between spring and fall of 2020, connecting with others who had the operation made her feel less alone.
“I found a lot of support through community, through social media, by joining different Facebook groups and following different hashtags on Instagram. It helped me knowing there were people out there that could relate to me,” she tells SELF. Hooks now uses her own Instagram account to talk about her experience and connect with other people. “There have been so many people that have helped me and they don’t even know it, just by sharing their story. I’m trying to do the same and help the next person.”
Mazelis is a big fan of the Instagram community and recommends searching for #jpouch, #NoColonStillRollin, and #ostomy. If social media isn’t your thing, she suggests contacting support groups like the Crohn’s and Colitis Foundation. “Just meet as many people that are going through this as you can, because those are the people that are going to be there to support you and validate you,” Mazelis says.
6. Researching too much can cause anxiety.
If you’ve spent any time consulting Dr. Google (and who hasn’t?), you already know that in addition to good information, there are plenty of anxiety-inducing stories online.
Krevalin said that reading too many accounts of J-pouch surgery complications stressed her out. “Sometimes going online was helpful, but sometimes it was the worst thing I did because there were horror stories. And it triggered me terribly,” she says.” Krevalin is a professional therapist, so she thought about the advice she would give clients and used it in her own situation.
“If you read one thing that starts to get you a little agitated, or your anxiety gets amped up, shut it down,” she says. “If it sounds like it will be not a great path for you to go down emotionally, get off that path immediately,” she says. If you need help setting boundaries, then you may want to ask your roommates or family to gently nudge you off the internet whenever you become distressed from your research.
7. You may need to change your diet.
As people with ulcerative colitis already know, the condition drastically impacts what you can eat without experiencing symptoms. Though after surgery your colon has been removed and you no longer have the part of your bowel that was inflamed, you also no longer have the part of your bowel that does things like absorb water and nutrients from harder-to-digest foods.
Once your J-pouch has been connected, your doctor may suggest following a “G.I. soft” diet for a while. As the Cleveland Clinic explains, that means you’ll be consuming a lot of foods that are low in fiber, which can be difficult to digest. “The nurses in the hospital said, ‘Think Thanksgiving dinner and food like stuffing, turkey, and mashed potatoes,’” Krevalin says. “I ate a lot of peanut butter sandwiches and grilled cheese.”
Certain foods may cause gastrointestinal discomfort, including constipation or diarrhea. Keeping a food journal recording what you eat, any stool changes, or other side effects like gas, can help you avoid things that make you feel sick.
After about a month, you can slowly start adding in other foods to see how you get on with them. Ten years after her surgery, Steuer says she can eat nearly anything in moderation. “I eat fruits and vegetables. I like to have some wine on the weekend.”
Everyone is different, and you may always have trouble digesting certain foods. Krevalin still avoids eating raw vegetables and sugar since they can make her feel sick. She says that it’s hard, but her daughter’s low-sugar lemon cheesecake has helped get her through some rough patches.
8. Your bowel movements will probably change.
Once you’ve had the final operation to connect the pouch, your bowel movements will be different: At first, you may go to the bathroom every hour, but the frequency will decrease as your muscles become stronger. Dr. Remzi tells his patients that once they’ve recovered, they can expect to have three to nine bowel movements throughout the day.
Shortly after her surgery, Steuer says she would need to go to the bathroom almost immediately after eating. But now, “I can definitely sit at a dinner table and talk for a little while before I have to get up,” she says.
You may also notice that your stool smells differently, which Hooks describes as being “somewhat stronger than it was when I had my colon.” If the scent bothers you, Hooks swears by using a deodorizer that you spray directly into the toilet before using it. “Honestly, I believe everyone should use this whether you are living with a J-pouch or not,” she says. Poo-Pourri Before-You-go Toilet Spray is one popular option ($9, Amazon).
9. J-pouch surgery really can be life changing.
Deciding whether you want to have J-pouch surgery is a very big, and highly personal, decision. That said, all of the people SELF spoke to agreed that if they were sent back in time to make the decision again, they would still choose to have the surgery. “The pain of having the surgery did not compare to the pain of the symptoms, which felt like torture and were sometimes 24/7,” Hooks says. “The recovery honestly wasn’t that bad. If it was on the table again for me, I would definitely have the surgery again. I would have had it sooner if it could have eliminated the pain I went through for 10 years. Not just the physical pain, but also the feelings of depression you may go through.”
And according to the Mayo Clinic, 90% of people who have J-pouch surgery are satisfied with their results. If you’re considering having a J-pouch made, meeting with several surgeons and talking to their patients who have had the procedure may help you feel more comfortable about your choice. Dr. Remzi recommends being honest with your surgeon and asking them any tough questions that will make you feel more confident about the operations. “Do not be afraid of putting the surgeon and the team on the spot about their publications and their experience,” he says. After all, this is a significant operation, and you deserve to have an understanding doctor who will work with you as a team.
Related:
- Ulcerative Colitis Symptoms That Should Be on Your Radar
- 9 People Describe How They Were Diagnosed With Ulcerative Colitis
- 8 Questions to Ask Your Doctor After an Ulcerative Colitis Diagnosis