I had my final j-pouch surgery in November 2017. I am now 4 almost 5 months post surgery and I feel as though I have not improved any since my surgery. I am having on average 10-12 bowel movements a day. I wake up at least 3-4 times a night due to bowel movements. I have constant spasming in my rectum. I get stomach cramping and bloating almost every time I eat. And I am in constant pain. My surgeon ran out of ideas so she sent me to a GI doctor to see if he had any ideas. They’ve suggested benefiber, enteragam (medical food), probiotics, hydrocortisone cream to be inserted rectally. I can’t seem to find any relief with anything. I am already taking 8 Imodium a day and 4 lomotil a day so I am on the max dose of both of those. I have tried both bentyl and donatal for the cramping and spasming and nothing is working. I feel as though my symptoms are worse now than when I had the colitis. And that is saying a lot considering my entire large intestine was infected and unresponsive to any treatment options. My doctors keep telling me that it could take up to a year for my body to become used to the pouch. But I am slowly losing hope. This surgery was suppose to improve my quality of life. But instead I just sit here wishing I could have my life back.
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If you are having symptoms of pouchitis and pouchitis has been ruled out, and IPS treatments are not effective, then you are left with SIBO (small intestine bacterial overgrowth). The treatment is the same as pouchitis: antibiotics. Worth a try.
You might want to try Super Digestive Enzymes. They are like beano but better. It wouldn't help all of your problems but might help with the bloating.
It sounds like you need some kind of pain management as well. By this I mean hydrocodone like pain relievers. Talk to your doctor and s/he will probably send you to your general doctor or pain management doctor. GI's and surgeons don't like to prescribe pain relievers as they don't see their patients often enough to properly manage their pain. I know this suggestion doesn't get you an answer to what the underlying problem(s) are but you need some relief.
So sorry you’re going through this. What a nightmare. Is it possible that it just isn’t going to work out with a j pouch? I hate to be the one to throw that out there, but maybe a permanent ostomy might be better for you? Less pain, easier to manage, more predictable so you can travel and live your life. I hope you find some relief soon.
Oh, sorry. When I did not see antibiotics listed in your list of what you have tried, I threw it out there. While it is true that it can take up to a year for adaptation to take place, you should see some improvement by 4 months, 6 at most. Are you 100% certain you do not have pouchitis, meaning, have you been scoped to rule it out? I ask because it is the single most common complication.
It hurts to hear the symptoms and suffering you are having. My large intestine after years of bouts suddenly faired up and a surgeon had to gutted me back in 1995. He said the surgery took more time than he ever had to. Said my colon was extremely inflamed and fell apart in his hands when he was removing it. You my know that crohns and colitis are auto immune disorders. One can reason that some persons with crohns or colitis immune systems` are more over active than others and attack organs to a greater degree. It maybe reasonable that persons with a less than a extremely ulcerated colon and had the J pouch surgery may very well proportionately have less complication post gutting because of the over lying immune systems attack/attacking continuing unless; of course the surgery cured you from a G.I. fysicians` dogmatic point of view. I would recommend looking into seeing an endocrinologist to possibly supplement / double checking your metabolism and endocrinology as it`s effected by the under lying auto immune disorder. You can do some basic research but, I believe that`s what Endocrinologists do. That would be great to get one to work with a GI doc. Can`t cure the under lying auto immune disordered but might find as a example ( as an example only because I am a lay person with no credentials ) thyroid levels and such that need to be brought to within more normal levels because of the way that organ is being effected also. It hurts knowing what you going through. The main suspected causes like pouchitis and others that I am assuming that you are well aware of and, all the meds and, doctors trying treatments is what some of us go through. I had a lot of stress from three different sources for a prolonged period that precipitated me needing to be gutted. Stress can cause a heighten immune responses and it was Bing Bag Bomb and I was going through that. I guess some cannabiod oil applied under the tung have helped with flare ups. It`s so unfair . I hope a few little things can help turn the major symptoms/problem around for you.
TJDANNA I will have to back track a little; I kinda ranted myself when hearing a very similar condition and situation that I live. A commonality is the surgeons reinforcing their positions. When I read that the doctor keeps say that it may take up to a year for your body to get adjusted to the pouch , that Popped my Cork. You should still be able to find some help at this sight like the steady handed approach that Jan Dollar and others here offer. Some comments made by fysichians can be exceedingly frustrating. They have careers, reputations and, interface with insurance companies. I have observed that being primary and almost as if there`s a conflict. I hope that a physician or physicians can really find a way to get your symptoms more under control and hopefully improve your condition.