Since my takedown surgery, I've dealt with really serious gas pain. I don't feel any "normal" pain at all as the gas moves through my intestines-- only pressure then. But as soon as that pressure hits the very bottom of my pouch, the pain is absolutely unbearable. It's very sharp, and to me, feels like it's the staple line, digging into my rectal cuff. This happens every day. The only way to relieve it is to go to the bathroom, which proceeds with highly explosive diarrhea. Every time. But often, as I'm in the middle of work, etc, I'm sentenced to just sit in it for hours, often completely immobilizing me. I'm talking level 8-9 pain here. I'll be fine for quite a while since my last bowel movement. Then as it starts, it's almost like contractions. It'll last 10-30 seconds, come and go, starting maybe every 20 minutes, progressively occurring more and more frequently til it's eventually every 20 seconds. When I first brought this up to my surgeon, he said it would get better and go away with time. It's now been 2 years with zero improvements. I do what I can to try to reduce the amount of gas to begin with, but regardless, the pain is just as bad and just as frequent. Does anyone else experience this? Is this just part of the doom of being a person with a J-Pouch? Does anyone know exactly why this happens or have any helpful suggestions of what to do?
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Gas is a real pain in the ass lol. Ok jokes aside I get a lot of gas too and honestly its hard to hold it back. If I get any chance I just lie about on my stomach to release it cause its safest that way. You said you're having diarroeha try sorting that out first. The general output is not exactly as solid as it is with a colon but its not also diarroeha like.
If your stool is bulked up the pouch and lower muscles can hold it better and longer. You can use pysillium husk fiber or imodium to bulk it up after consulting your surgeon.
Coming to the problem of gas there are alot of foods that trigger gas dairy being one of them for me. You can try finding your trigger food and eliminate it or reduce its portion size. Also if I hold back for as long as I can the output is better formed and the gas is also lesser. If I release it frequently it just keeps on increasing. There are some meds too like Gasx or Beano but I dont know how effective they are.
I probably used a poor choice of words in saying "explosive diarrhea". I was mostly trying to use it as how a "normal" person would view it. It is extremely explosive but not really diarrhea. According to my doctors the form of my output is supposed to be pretty perfect for a j-poucher. It's obviously not fully formed like one from a colon would be, but it's like that of say, peanut butter.
I'm still not in a place where I feel like I can pass gas without having an accident or being on the toilet.
I use 8mg of Imodium twice a day already, which is the most my GI recommended. It seems like Gas-X just pushes the gas out faster as opposed to getting rid of it. I've tried different forms of fiber, with it always seeming to make things worse. I've also tried Beano to no avail, but honestly probably haven't tried it long enough to give it a shot. And I personally haven't found food to make any difference. Sometimes in the amount of gas, but never in the amount of frequency or pain.
I do very much appreciate all your help. But regardless, you find it to be just as painful? Does it seem this way for everyone?
David, you don’t say how long after your last toilet visit this is happening. Is it possible you’re just waiting too long between trips? Also, I assume you’re taking all the “usual” steps to reduce gas (e.g. eliminating sodas/seltzer, eating carefully to avoid swallowing air, ...).
I also can’t tell whether you have an unusually large amount of gas, or simply an extreme amount of pain from a normal amount of gas. Are you able to tell which it is?
Well I guess I should note, I tend to have extremely long toilet visits. 4-6 hours on average. 2-3 times a day. Once those are out of the way though I tend not to have gas pain til it's time for the next trip to the bathroom (about 8-10 hours later). I get zero gas pain in the interim, then when it hits, it hits hard.
I am taking all the standard anti-gas precautions as you stated.
For your last questions, I guess I'm not totally sure. But it seems to me more like an abnormal amount of pain from a normal amount of gas.
Maybe you have pouchitis. Perhaps you can see your GI and get a prescription of cyproflaxin possibly combined with flagyl. This drug will more than likely destroy your gas and provide more consistent stools.
Good luck!
Solomin