I need help determining if this is just in my head or is actually able to happen.
Since 2001 I had been treated for Ulcerative Colitis involving the entire colon, diagnosed from a colonoscopy. I've only had two short periods of time (each less than 4mo) of remission, the rest of the time being in a constant flare varying in intensity from moderate to severe.
I began seeing a specialist (head of department) at Emory in mid-2005. I've been largely unresponsive to the meds prescribed to me: asacol, colazol, balsalazide and rowasa/cortisone enemas. I have responded well in the past to high doses of prednisone but the effectiveness of each bump-up after a taper is decreasing and requiring longer periods of time before seeing results. I responded well to 6MP but when we doubled the dose (and had FAB results) I developed acute jaundice and we stopped all meds to recover and returned to the original, lower dose. Remicade for 18mo gave me no positive results.
I had surgery May 8, 2008. Originally it was to be a colectomy with a colostomy bag and eventual J-pouch connection. Once inside, the surgeon found a localized involved area of my L side descending colon and felt that everything else (small intestines and rest of the colon) looked pretty good, so he changed the procedure and only removed the damaged portion of the colon, reconnecting the two ends so I had no colostomy bag, everything remained internal. (Yay!)
Pathology returned on the removed portion with a diagnosis of Crohn's Disease.
After surgery, I did GREAT! I was on no meds at all, BMs were firming up, and while a little difficult to pass, they felt good to be almost 'normal' and able to be done after having the mostly firm BM without the numerous trips to keep 'finishing' the original loose BMs I'd had previously.
Problems began about 2mo after surgery when my specialist returned me to the 6MP. I was becoming increasingly nauseated to the point I couldn't eat. I lost about 10# in two weeks. Promethezine wasn't working very well. BMs were loosening and increasing in frequency and urgency. After a complaint to my Dr, she halted the 6MP and put me on 30mg Pred. I am still experiencing nausea and having difficulty forcing myself to eat. I am hovering at around 110-114#. My usual weight was 130#.
In the past, it always seemed the pred was able to keep nausea at bay AND kick my appetite into overdrive. I am having none of those benefits right now.
Current symptoms include:
Loosening stool with some mucus and blood.
Gas. Gas seemed to be a big problem aggravating my symptoms, and I am doing well taking 2-3 Gas-X capsules daily.
My left side abdomen seems tender. Not distended, but it feels like the colon is 'firm-ish' because it has something in it, but all my movements are liquid-y. ...this is a new experience for me. This feeling didn't begin until about 2wks ago. Last week I had an upper and lower endoscopy. Upper showed no signs of anything to cause nausea and the lower showed some colitis, no ulcers and I was able to see the stitched part of my surgery site...which looked good (roomy) to me.
My surgeon had mentioned at one post-surgery meeting that he didn't understand why (pre-surgery) I had been able to eat at all and not vomit all the time.
Could this just be in my head?
Plans for next week:
I will be having a blood test with results faxed to my specialist.
I will also call my specialist and let her know about the feeling in my left side abdomen.
Will discuss other treatment options to get these symptoms under control; Humira, Methotrexate and Budesonide in place of pred. It looks like Imuran is another version of 6MP so I don't know if we will consider this one.
I have been feeling down, just so tired of dealing with this non-stop for so many years. Small, bright windows of sunshine that get shadowed by dark clouds all the time. Come on, I want to see the light at the end of the tunnel and know it isn't a train!
Husband has been wonderful. He helped me saddle my horse last night so I could ride. It had been more than 18mo and felt wonderful. Well, not for my bony seat-bones, but it was great to be on my horse again.
I do NOT want to let this control my life. How can I regain control?
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
UC is pretty darn crappy, but if you can't laugh at yourself, you'll cry.
I'd much rather laugh.