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Reply to "Abdominal Pain - Possibly from Adhesions"

It’s been almost 2 years since I started this thread and I’m pretty much in the same place I was when I started. On 2/26 I had a rough night…severe abdominal pain, a panic attack which caused me to pass out and end up on the floor twice. Last night (3/7) I had severe abdominal pain again. I’ve had the same lower right side pain for almost 2 years. Usually it is mild to moderate but every few months it becomes severe, 10/10 level pain, which only gets better after a BM (I often have to use multiple enemas to make this happen). I thought it was getting better because I’ve been eating small meals and taking Miralax every day, I went a few months without the severe pain, but now it is happening again (and more frequently), even with the changes I’ve made. I’ve seen so many doctors and had so many tests done and all I’ve been told is that it might be partial obstructions related to adhesions or IBS. I’ve been told to eat small meals and take Miralax to avoid constipation/obstruction and go to the ER if I have severe pain. I’ve been told to take amitriptyline for IBS. I’m doing/have done all of these things but I’m still having the same problem. I reached out to my current GI after it happened on 2/25 and all he said was that it’s probably IBS but I should go to the ER/urgent care if the pain is unusually severe. No other advice or suggestions. I’ve been to the ER/urgent care for this exact same pain multiple times and they never know what to do for me because they are unfamiliar with IBD/colectomy/jpouch. They run tests and find nothing wrong. The ER/urgent care tells me to follow up with GI and then I have to wait 3-6 months for an appointment. I am so sick of this. I feel like my only options are to starve myself (which feels horrible) or try to eat and possibly end up in severe pain. I don’t know what to do. This is no way to live. I feel like my quality of life is worse than before the surgeries when I had severe ulcerative colitis. I was in pain all the time but at least it was predictable, I knew the cause of it, and I could still eat. The only time I’ve had any decent quality of life in recent years was after my first surgery when I had an ostomy. I’ve spent the last 4 years since my jpouch surgery dealing with one problem after another and being told that everything is normal (based on exams and test results). This is not normal. I have nothing even close to a normal life. If I could go back in time I probably would have kept the ostomy and not had jpouch surgery but I can’t do that. Even if I opted for an ostomy now it wouldn’t be like it was before because everything is so messed up inside me and I could end up worse off than I am now. I really don’t know what to do anymore.

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