What’s Life Like With a J-pouch? One Woman’s Story
A few weeks after my ulcerative colitis diagnosis, I began blogging in an effort to inform other people who might feel unsure about life with UC. When I mentioned on my site that I'd undergone an ileal pouch-anal anastomosis (IPAA) surgery series, which involved three major operations to remove my colon and construct my J-pouch, the most common question I received on social media was “What’s life like with a J-pouch?”
Questions like that plagued me for the weeks and days leading up to my surgery, too. Am I going to feel as good as I do with my ostomy? Will I have to go back to running to the bathroom every five minutes? What will it feel like when I do have to go to the bathroom? Will it be excruciatingly painful, like it was before my ostomy? I wondered about all of these things but there seemed to be no answers.
I tried to prepare as best as I could by reading the educational pamphlets provided to me by the Cleveland Clinic, where I was going to have the procedure done, but they just didn’t cut it. They used a lot of technical terminology that I didn’t understand and they mostly focused on the actual operations instead of what life would be like after each surgery. All of it seemed so scientific and cold.
It’s important to be prepared for what life is like after the final surgery, when your J-pouch is connected and functional. I didn’t really have anyone who could mentor me on the process. I had only doctors and physician assistants telling me what my life was going to be like. I remember thinking, “How would they know? They don’t have a J-pouch, they’ve only created them. They can’t possibly know what it’s like to actually live with one.” And now I’m here to give you the real deal when it comes to living with a J-pouch.
Adjusting to a New Norm
The first four to six weeks after my final surgery were some of the toughest times I’ve had throughout my entire journey with ulcerative colitis. I had a lot of painful rectal spasms and I feared not being close to a bathroom. Once I felt the sensation of even having to go, I raced to the nearest bathroom and would sit on the toilet until I felt comfortable enough to leave. Sometimes I’d sit there for 20 minutes. My J-pouch also needed more time to expand to hold more waste. So I had to practice “holding it” and try as hard as I could to not give in to bathroom trips. I had to retrain my body and brain to know that going to the bathroom was not an emergency anymore. Sitting on a heating pad or practicing relaxing breathing techniques helped me with the pain of the spasms and also helped me get over my fear and anxiety.
I also followed a GI soft diet for five or six months so I wouldn’t have rectal burning or painful straining. I still experienced “butt burn” because of the increased amount of stomach acid in my stool, but I found that over-the-counter rectal lidocaine cream really helped.
Now that I’m three years post-op, I still follow many of the directions that were given to me early on in recovery. I’ve learned that there are some things I need to pay more attention to than others, and I've discovered ways to remain happy and healthy. Here are the tips that I follow on a daily basis:
Listen to my body On an average day, I go to the bathroom from six to eight times. When I have a day where I feel like I’m going to the bathroom more, or when I’m really fatigued, I let myself rest. I still get up at night to go to the bathroom, but when I'm feeling good, it's no more than two times.
Control gas My biggest trouble with my J-pouch is gas. Air gets trapped in my pouch, and it’s painful, and can be irritating. It makes me think I have to go to the bathroom when I don’t, because my J-pouch feels full. I take two Gas-X tablets in the morning and two at night and it really helps me. I also eat two or three Tums after large meals.
Watch my diet I follow a special J-pouch diet created by Bo Shen, MD, a gastroenterologist at the Cleveland Clinic: Low-fiber, low-carb, low-sugar, high in lean protein, no carbonated beverages, no caffeine, nothing fried or processed. Binding foods, such as potatoes, rice, crackers, and peanut butter, are good. If I eat carbs, I make sure that the portion is no bigger than my fist. And when I eat too many of them, I get a stomachache. Dr. Shen told me that’s because excessive fibers and carbs sit in your J-pouch and ferment, turning to sugar and refluxing back into the stomach.
Exercise I exercise a lot. Between three to five times a week, spending one of those sessions with a personal trainer who helps me with strength training exercises that increase blood flow throughout my body. I can do any exercise routine that a normal person can do.
Enjoy Life I live my life and enjoy every minute of it. I go out with friends. I go to work at a fast-paced strategic communications firm. I’m in school. I laugh with my family. I shop and travel.
Looking back on how I prepared for my surgeries, I wish that I had done more real-life research through patient blogs or articles. I wish I'd reached out to resources that could have helped me find a mentor who could properly prepare me for what life with an ostomy and a J-pouch was going to be like. I also wish that the possibility of surgery had been discussed with me right after my initial diagnosis, instead of being told that I would never have to have it.
I’ve had my ups and downs with my J-pouch. But there is never a day that goes by without me being thankful that I had these surgeries and that my colon is gone. My J-pouch is my most prized possession because it gave me my life back.
Brooke Bogdan is a public relations specialist, blogger, and IBD advocate living in downtown Cleveland, Ohio. She is also founder of the online magazine Companion, a publication that offers support and guidance for people with IBD. She's in school part-time for web development and enjoys working out, writing, and spending time with friends and family.