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7 replies

Anyone know about this???

dennyp3dennyp3Member
Hello, I'm new to this site, but certainly not to having a J-pouch. I have to ask if anyone has experienced what I'm going through and how they handled it if so. I am 39 now, and developed UC while away at college for my first semester as a freshman. I lived with UC for 5 years becoming what my GI doc called "steroid dependent." I was on Prednisone and a couple of other drugs. He sent me to CC for the J-pouch. This was in 1996, so it's been a while. I admittedly haven't taken the best care of myself in the meantime. Over the last two plus years, I've developed some other physical ailments. My docs have diagnosed me with Fibromyalgia and what they are calling Auto Immune Arthritis. Most of my days are spent in pain and fatigue. Also, over the last three years, I've had isolated bouts of severe abdominal pain that has put me in the ER. They give me CT scans and pain meds. They also send me for a colonoscopy. Nothing is ever found to be wrong with me. I'm beginning to think that maybe I don't have the ailments I've been diagnosed with, but rather I'm having a problem absorbing the proper vitamins and nutrients into my system. Maybe since my colon is gone, and it's been 16 plus years since the J-pouch was built, that the area is not absorbing stuff into my system like it once did. I'm also thinking that the abdominal pain might be due to my small bowel, or adhesions from my surgeries. I'm sorry for going on so long, I'm just looking for someone who knows maybe what's going on with me. I'm tired of being in pain, and my docs don't seem to be willing to listen to me. Please help!
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Jan DollarJan DollarModerator, RN, retired
I had my j-pouch surgery in 1995 also. In 2005 I developed chronic low back pain and was eventually referred to a rheumatologist. I had other various joint, tendon, and muscle pain too. My rheumy diagnosed me with enterpathic arthritis with enthesitis and put me on Enbrel. I got partial relief with that, and later switched to Humira, with much better results. I'm now on Simponi and doing well. I used to need a cane, but seldom use it now.

I once told my rheumy that I felt like I had fibromylagia, and she said that inflammatory arthritis can have that effect.

Sounds like you need a good rheumatologist to sort out your problems.

I also think that you are right about the adhesions causing your abdominal pain. Personally, I haven't had any absorption issues, but I am deficient in vitamin D. That's not due to malabsorption though. People with UC tend to be low, plus it is widely seen in the general population.

Jan Smiler
Last edited by Jan Dollar
S SJP3Member
Not sure that they are the same issues as yours, but I have had similar odd/inexplicable complaints as well. I am also 39 and have had a jpouch for 15 years. The first 10 or so without incident. In recent years I have noticed muscle aches for no reason as well as fatigue. No one has been able to explain this for me. Like you, I think this is an absorption issue. I have also had issues with abdominal pain that seems to come on out of nowhere. Among other things, this can be ileus (everything just slows down) or bacterial overgrowth. In my experience, there isn't much you can do for ileus which usually goes away on its own other than stay hydrated. But you can get tested to see if you have overgrowth. I had a breath test done which was positive for overgrowth. This can usually be treated with antibiotics, followed by probiotics and diet - meaning no sugar.
L liz11Member
I agree with Jan, I think you need to see a very good rheumatologist. I always had "IBD arthritis" when I had UC, and also when I had a a jpouch. Earlier this year, I had my jpouch removed and have many new "arthritis like" symptoms. Initially my docs told me it was still IBD arthritis, but now they are thinking differently. I am also having strange abdominal/gut issues (almost similar to how you described) and other systemic issues such as migraines, unrelenting fatigue, and more. So I saw a rheumatologist yesterday who explained that some other autoimmune diseases - like Rheumatoid arthritis and lupus can have gut manifestations as well as joint issues. These are not necessarily treated the same as IBD related arthritis. So for me, the plan is to do yet more blood work and tests to try to make a clearer diagnosis, then develop a treatment plan.
So go on a hunt for a good rheumatologist. It may take 6months to get an appointment, but get it lined up and see if you can get some more definitive answers and a treatment plan.
good luck.
Jan DollarJan DollarModerator, RN, retired
Yep, I was tested for lupus, rheumatoid arthritis, HLA-B27 antigen, and a battery of system function tests. MRI of the lumbar spine, along with x-rays. Everything was negative, which left enteropathic arthritis. This is treated the same as ankylosing spondylitis, as it is in the same family, and is similar to rheumatoid, just not as destructive.

One thing many people do not realize is that inflammatory arthritis leads to significant fatigue. Inflammation anywhere in the body causes fatigue. That is one of my primary symptoms when I am in a flare, fatigue that is so overwhelming, the air feels like molasses and it is difficult to just walk across the room. The pain is almost secondary....A short course of prednisone usually sets me straight within a day or two and I never take it more than two weeks.

Jan Smiler
dennyp3dennyp3Member
Everybody, thanks for responding. I do see a rheumatologist, but it's as if he downplays the pain I feel. I don't know how to put into words to him how I feel in a way that he takes serious. I'm really considering changing to a new rheumatologist that maybe I can get through to better. I must be saying things wrong. I am lately feeling really crappy in the abdominal area. I'm trying to just breathe through it, but I'm afraid it may land me in the ER soon.
Jan DollarJan DollarModerator, RN, retired
Absolutely! Not all rheumys are created equal, and you need one who really listens. Time and again I hear of patients whose rheumys will not diagnose because "physical evidence" is not present. Well, sometimes it takes many decades for those changes to become evident on imaging, and by then, the damage is irreversible. Plus, you are suffering in pain all that time.

I also agree that being able to express how you feel is important.

If you think you may have enteropathic arthritis, here is a great website with more information:
http://www.spondylitis.org/about/

Jan Smiler
ElmerFuddElmerFuddMember
Denny - as Jan can tell you I've been there and done that. I too have a rheumy who can't find anything she can treat based on symptoms / evidence, and it doesn't appear I have spondylitis. After a few years with my rheumy, and switching primary docs to get some new ideas, I ended back at the pain clinic and was finally diagnosed with fibromyalgia too. She did say she couldn't definitively say whether my pain was caused by: 1) osteoarthritis pain 2) inflammatory arthritis pain 3) fibromyalgia pain. But I was ecstatic the day she had the guts to diagnose the FM and treat me for it. I've been on Lyrica now for a few months and it has brought me about 50% relief - but the relief is sweet. I no longer live in fear of being active and having some nerve whack out and freak out on me causing sudden pain (mostly in my back and neck).

So... only lesson learned is to keep at it and try different docs if you can until you find one that works. Interesting thing too - my pain mgmt. doc was only interested in procedures the first time I saw her. But when I went back to her, we went another direction - so you never know.

Steve

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