Hi, after 30 years with a j pouch l had my first blockage. Luckily I did not need a resection, my bowel was twisted and hung up on scar tissue. The last several days my output has been twenty plus times a day. I feel as if I am unable to empty my pouch completely. I have terrible pain in my pouch and constant pain where my stoma was. I’m almost a month post- op. I need some advice.
Alaine, I can’t tell for sure what stage you’re in. It sounds like you had surgery a month ago to untwist your bowel (and probably cut the scar tissue it had hung up on). Is that correct? Was everything fine and pain-free until the last several days? Did your blockage a month ago occur near your old stoma site?
If I’m understanding the situation correctly then a number of possibilities come to mind. What’s tricky here is that needing to go twenty times a day suggests something going on with the pouch, but the pain where your stoma was probably has nothing to do with your pouch. So you might have two things going on.
You might have picked up an infection, like C. Diff, while you were in the hospital. A stool sample could be tested for that. You might even have a simple GI infection, like a virus or food poisoning - most of these clear up on their own. If you were straining a lot on the toilet while you had your blockage you could have developed something like a pouch prolapse that would prevent complete emptying. You may have redeveloped a (partial) blockage. And you could have developed pouchitis. It’s hard to tell exactly what’s going on with the information you’ve provided. Have you made an appointment with your doctor?
I was tested for C. diff in the hospital and that was negative. My blockage was not near my stoma site, I asked. I was in the bathroom ten times a day before I started feeling worse. I’ve needed to strain to go ever since I’ve come home from the hospital. I’ve never had pouchitis so not sure about how that feels. My pouch has been trouble free until now. Waiting to hear from my gastroenterologist and surgeon.
Sorry to hear of what you are going through. Do you know with certainty it is a blockage? Did they do imaging tests in hospital? I had my first really severe blockage in October (also after decades with a good pouch). I had to eat clear fluids for weeks until I could pass food normally. It was hard energy-wise but i definitely felt better for both pain and bloating etc. not eating solid food. It took c. 5 weeks to get back to normal. It seems if you are going 20x/day, you couldn't be blocked because that means food is getting through--maybe its a partial block? Did they suggest clear fluid?
I had surgery for a blockage June first. This problem is post-op after three and a half weeks. They had me on solid food after a week in the hospital. Maybe they should have introduced food more slowly. Part of the problem is my weight dropped to under 100 pounds in the hospital. My gastro doc is testing me for C. Diff . I’m scheduled for a Cat scan this week.