What's It Like To Have A J-Pouch?

A J-Pouch Can Provide An Opportunity For An Improved Quality Of Life

Amber Tresca
A photo of Amber and her father at her high school graduation at age 18. She was taking 40 mg of prednisone at the time, and at 5'2", weighed about 100 lbs. Photo © Amber Tresca

I am often asked about my j-pouch surgery, which I had in 1999 at the age of 26. Before my first surgery, I was nervous and I talked to other patients who'd had j-pouch surgery. Some people may have a choice of whether or not to have the surgery: in my case it was a medical necessity. J-pouch surgery is sometimes done in 1 step or 3 steps, but most often in 2 steps, which is the surgery that I had. My surgery was conducted at my local hospital with a local colorectal surgeon, who had only done 5 pouches before mine. Below is a fairly personal account of my experience with j-pouch surgery, although I have added some elements and information in order to be a broader resource to those considering or facing surgery to treat their ulcerative colitis.

Days That No Longer Revolve Around Bathrooms

I wake in the morning to the feeling of pressure and fullness in my j-pouch. Most mornings begin this way, but I am getting used to it. There is some discomfort, but it's not the same as the urgency I felt with ulcerative colitis. I could ignore the feeling for a bit, if I chose, although it would become increasingly uncomfortable until I go to the bathroom.

The days with ulcerative colitis started to become only a memory at this point, as I settle into the new rhythm of my body. The first surgery (of two) was a difficult one: I was under anesthesia for several hours and awoke with a temporary ileostomy. The recovery was long, I was out of work for 6 weeks, but it was uneventful and I improved each day.

I have a large scar that goes all the way from above my belly button down to my pubic bone, which did not heal as cleanly as I would have liked, mostly due to the prednisone I was taking before my surgery.

I could not taper off the prednisone before the first step of the j-pouch as my surgeon had hoped: every time we tried to go down too low the bleeding from my ulcerative colitis would begin again. As a result, I finally was able to taper down only after my surgery. I'm not happy about the scar because I'm young, but I guess the end of my bikini days is a small price to pay.

'Ostomy' Is Not A Dirty Word

The ileostomy was not at all what I expected. After years of ulcerative colitis and wondering when diarrhea would strike and when I would need a bathroom in a hurry, the ileostomy was like having my freedom again. I simply went and emptied my ostomy pouch when it became full. I didn't change my wardrobe at all -- I wore all the same clothes I did before my ileostomy. I started to expand my diet, although I was careful to follow my surgeon's instructions and avoid roughage like nuts or popcorn. I even began to put on weight, for the first time in my adult life. I never did have a blowout for the 3 months I had my ileostomy. I don't think I had any great skill at attaching my ostomy appliance, but even so I never had any issues or embarrassing incidents.

Changing my ileostomy appliance about twice a week became part of my routine. My stoma became just another part of my body. It did seem weird, if I thought about it too much. After all, the stoma is part of your intestine, and it was on the outside of my body!

But, this was the surgery that allowed me to live, hopefully for a very long time. Without it, the dysplasia and the hundreds of polyps found in my colon may have resulted in colon cancer and a worse outcome for me.

My enterostomal therapy (ET) nurse was amazing. I met with her before my first surgery, and she helped determine the placement of my stoma. In an emergency situation, the stoma might be placed where the surgeon thinks it would be best, but I was fortunate enough to have some time to prepare. My ET nurse asked me about my lifestyle and the kinds of clothes I wore, and we decided together where to place my stoma. Anatomy also plays a part in stoma placement -- I was told that some people's bodies and muscles were different and that occasionally a stoma could not be placed at the location that the patient preferred. In my case, things worked out well, and my ET nurse used a Sharpie to mark the best spot on my abdomen for my stoma.

Going "Normally" Again

When I was ready for the second stage of my j-pouch surgery (the take-down, or the reversal of the ileostomy), I had serious concerns about entering into surgery again. I felt great! The ileostomy was no big deal! Did I really want to go through another surgery and recovery? But in truth, the second surgery was not anywhere near as intense as the first, and the recovery time was much shorter. I was out of work for only 2 weeks and I had much less need of pain medication. The strangest thing was getting used to the new j-pouch. Yes, I did have to "empty" it several times a day, but that didn't bother me at all. I know many people have a concern about having to go to the bathroom more times after their surgeries than before their surgeries, but in my case that was not going to be an issue. My ulcerative colitis was classified as severe, and even during the recovery from my first surgery I felt better than I did when my colitis was at its worst.

At first my bowel movements through my j-pouch were liquid and, truth be told, painful. They burned. But I learned quickly which foods to avoid: spicy foods, fried foods, too much fat, too much caffeine. I also had lots of other tricks to keep the pain and burning to a minimum: using a barrier cream on my bottom, using wet wipes instead of toilet paper, and eating foods that might thicken up my stool, such as peanut butter or potatoes. My surgeon gave me a few guidelines about these things, but some of it I learned through trial and error, because everyone is different when it comes to diet. It took time for my perianal skin to toughen up and the burning to stop. Once I got my diet under control, my stool started to firm up, and I was in the bathroom less and less. In fact, whenever I see my surgeon he asks how many bowel movements I have a day, and I honestly don't keep track anymore.

Bowel movements for me tend to be noisy, but I have gotten over feeling embarrassed about them. The surgery I had saved my life, although it altered my anatomy forever. If I am very careful with my diet I can have almost-formed stools, but I am often not careful with my diet. I had ulcerative colitis for 10 years, sometimes living on nothing but gelatin and broth, (and during one memorable two-week stretch in the hospital, absolutely nothing, not even water) and now that I am able to eat food, real food, again, I don't want to subject myself to a bland and boring diet. I do have limits -- I would never eat a salad with nuts to be followed by a popcorn chaser -- but I can enjoy many foods today that I would never have considered eating in my ulcerative colitis days.

But Is This A "Cure"?

People often speak of j-pouch surgery as being a "cure" for ulcerative colitis. I don't feel as though this is an accurate description. How could the removal of a major organ be considered a "cure"? To me, a cure would be the healing of the intestine and the cessation of symptoms. The future of my j-pouch is still unknown to me. I could be one of those that develop pouchitis: a condition that is not well understood which causes symptoms such as fever and diarrhea. Pouchitis is often treated with probiotics and antibiotics, but it also tends to recur. My surgeon is also uncertain if I am still to be free of potential complications such as blockages or even the extra-intestinal conditions that can go hand-in-hand with inflammatory bowel disease (IBD) such as arthritis.

Epilogue

I know my road from ulcerative colitis to j-pouch has been an extraordinarily easy one. This I attribute to the skill of my surgical team, but also to my willingness to follow my surgeon's instructions to the letter. I have met many others who are also happy with their pouches, but I have also met some who have lost their pouches to recurrent pouchitis, or because what was diagnosed as ulcerative colitis was ultimately determined to be actually Crohn's disease. I have known still others who experienced post-operative complications such as infections. Some women with j-pouches find their fertility affected. It's almost impossible to know how surgery will affect any one particular person, but in my case, everything has turned out for the better.

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