I have a mysterious but very chronic (24/7 but it tends to be worst at night, but can be nasty any time) symptom that may or may not be from my UC and was wondering if anyone else has this.
This is not officially diagnosed in me or anything (who the heck needs any more diagnoses espcially if it is useless in terms of treatment) but I know I have IBS concurrent with my UC, and 80% of the time that IBS is in the form of a sharp, burning, clenching pain in the center of and a few inches up from my belly button, just below where my rib cage meets the center of my abdomen. When it hurts there, I can actually push in and feel a little click on the tissue. I've been scoped up and down, including upper GI and upper GI barium etc and they are positive I have nothing inflammatory in the upper system, and colonoscopies don't show anything other than the usual inflammatiion - past and present (since I am not in full remission) associated with UC. Well, upper GI scans once revealed a very small hiatial hernia, but I was told categorically it is way too small to cause symptoms and would be considered pretty "normal" in any adult over 30 years of age- at least not the least bit unusual and certainly not enough to cause any symptoms. I have even had an ultrasound for the gallbladder come up dry. It is not GERD by the way, although when the pain is bad enough it can cause a bit of reflux. But it doesn't respond to stuff like Tagamet, Pepcid etc. Anyway, just wondering if there is anyone else on this forum who suffered or suffers from this sort of mystery pain. Maybe I should post this in the IBS forum, but I can't help but think it is an IBS that is triggered or amplified by the presence of UC activity in me. Oftentimes this pain worsens as I try and wean off pred, but perhaps that is just the collateral benefit of pred reducing the pain of this local IBS. Also, this pain, though centered in this one spot, seems to sometimres spread out and radiate to general UC-like pain in my colon, which I assume is outright inflammation.
One trigger seems to be supplements of any sort- even mine which are mostly without fillers and additives. This is tough because I rely on supplements to combat and deal with nutritional issues from having UC, being on pred, etc., but as far as this symptom goes, they are least if I take no supplements whatsoever,, and worsen as I take more supps. However, if I take no supps, in particular no probiotics, my UC will gradually worsen (i.e. probiotics do benefit the UC a little bit even though not alot), and I consider it too dangerous not to take calcium, vit D etc while on prednisone.
Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 17.5 mg pred, 100 mg Imuran
TCM, Probiotics (Primal Defense and others), DMSO, TSO, hookworm
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
Post Edited (Probiotic) : 11/20/2008 3:23:26 PM (GMT-7)