At times I have near debilitating fatigue and severe muscle pain mainly in my back and neck. I have never been sure if this is related to my jpouch/pouchitis or something else. I have not worked in 4 years and spend about 2/3 of my day in bed. I feel that although the frequent bowel movements and occasional flare-ups are a problem I could manage a normal life if it wasn't for the fatigue and sometimes crushing exhaustion. Does anyone have experience with this type of fatigue? I am currently looking at the possibility that my adrenal glands are not functioning normally possibly from many years of medications and cortisol.

I have been having a similar issue for the past four or five months. I've had the J-pouch for about 20 years and about once a year I would have a flare up --i'd take some flagyl and maybe a painkiller and a week later I was fine.

I've had back problems for the last ten years. I had spinal fusion back in 2001. Took so much prednisone as a kid my spine became unstable after simply twisting my back.

I used to think that all of my back pain was related to the fusion surgery and the problems with my discs but I am now starting to think that when the J-Pouch is out of whack it causes lower bag and leg pain along with fatigue.

Right now I'm on prednisone and flagyl and pain killers. And I'm spending 2/3 of my day in bed with severe leg pains and aches. I'm also on a very limited diet mostly soups, bread and smoothies.

can you tell me more about what's gone on with you?

The pain in my back seems to be more muscular as opposed to spinal. But I have sharp pain points on certain vertabrae near the painful muscles. It comes and goes throughout the day. Sometimes I wake up with the pain although it is usually not as severe as during the daytime. The pain is such that I desperately would like to take painkillers but I have been down that road before and know that not only will it not solve my problem but will likely cause others. Also I find exercise helps temporarily. As much as I don't feel like doing it I know that afterwards I will benefit and feel some relief.

I recently had my cortisol levels checked. My morning cortisol level is low and this can create many imbalances including fatigue and muscle pain. My naturopath is certain that my lack of sleep is causing low cortisol. This is where the pouch comes in. I have never been able to sleep properly and now feel that I have adrenal fatigue as a result. If I was certain that my energy level was a direct result of my jpouch and pouchitis then i would strongly consider going back to the ostomy.

I would not be a bit surprised if you have multiple issues going on here. If you have chronic pouchitis, that alone can be a source of chronic fatigue. Chronic inflammation causes fatigue all by itself and is part of the syndrome. You could also have enteropathic arthritis, which can be difficult to diagnose. It is often characterized by enthesitis, which is inflammation of the points of insertion of tendons and ligaments into the bone. There usually are no x-ray findings, until this has been long standing and there is calcification of the tendons and ligaments. Inflammatory arthritis also causes fatigue as a major symptom.

I know this because I have enteropathic arthritis and went for quite some time before diagnosis. What got me a referral to a rheumatologist was chronic sacroiliac pain for about six months, characterized by pain in the upper buttocks. I would seek a referral to a rheumatologist and not rely solely on your naturopath. Chronic inflammation also interferes with your cortisol levels.

http://www.spondylitis.org/about/ibd.aspx

Jan

I don't have any advise but I have a 20 year old jpouch with chronic pouchitis and have disabling fatigue. I am hoping for ways to help with this symptom.