Hey all, I've had a few changes in the past couple of weeks, aand I thought I'd keep those interested in what has been going on. A month or so ago, I had the prometheus test which came back as negatvie for colitis and croh's. Despite that diagnosis, I was having UC symptoms, so the doc and I set up a colonoscopy (third c-scope in two years, plus one sigmoidiscope, as well as a sigmidiscope, plus a copul;e of othe less intrusive porbe into my cavity.
I had a colonoscopy last Wednesday, and the prep for it kept me pretty much kept my bms liquified for a couple of days after the c-scope. First time for that. I used the dulcolax/miralax prep, another first for me, and I was up two days straight with the runs. Things started to clear up and i was bascially peeing out my my butt by the tail end of the treatment. I still ended up missing a day of work or work because of extreme urgency, and (embarassingly) numerous accidents. I got to the point that I camped out in the bathroom so I wouldn't have to run as far to find contained relief.
The scope came back as having colitis in the first 40 to 70 cm of my large intestine, and the intestine after that was scarred up and had pseudo-polyps from my long lasting C Diff infection a couple of years ago. Lots of scarring from that trauma. My symptoms prior to the scope included bloody, mucous, loose stool, extreme gas cramps, and any bm would create horrible stabbing pains in my lower abdomenEXTREME urgency. After a weekend of suffereing these symptoms, my doc and I decided that a 30mg dose of oral prednisone, on top of the 6 VSL#3, and two tabs Liadla in the morning would be a start on the right track. The biopsies came back showing I have UC (big freakin' surprise there), and my blood work showed an elevated level of amount of allergne antibodies, which eliminates my previous thought that I was allergice to Asacol,
It has now been close to a week, talked with the doc last night and we upped the Lialda to 2 tabs, twice a day, VSL#3 to 6 a day, kept the prednisone the same. I'm not fond of changing some many meds at once, because it is hard to differentiate between what is working and what isn't when you make too many changes at once. I've also kept a low residue diet, very bland, very little food intake, but maintaining nutritional balance by consuming V8 Fusion juice daily.
Based on past expereince with prednisone, it seems to help quite a bit, but it gives a false sense of security because once I start tapering off, symptoms begin to return. Plus prednisone makes me grumpy, gives me the munchies, and since it works so well, makes my guts feel invincible. I'm thinking that maybe dropping the prednisone, and letting the VSL#3 and Lialda work their magic before reintroducing the steroids. One option is steroid enemas, but I'm not sure about the side-effects from that. Perhpas Quincy could provide some knowledge on the subject to me
So that is where I'm at. I'm able to function at work, crash at home, but still have numerous bms throughout the day regardless of my diet. Social activities are not much of an option, but i'm a loner anyway, so I don't feel that I'm missing much. Not trying to drum up sympathy, but I really don't have any friends where I live. To get home from the c-scope, I had to hire a med transport service. I have to admit I'd like some peple close by that I could visit with. I'll be looking into support groups in the area soon to help broaden my horizons. My work schedule makes it difficult o commit to any college classes, but when the time comes, I'll be putting some effort into taking couple of fun classes, The longer I stay away from people, the easier it is to stay away, and I've stunted my growth over the last 6 years by living in remote locatoin in Yellowstone NP, and spending month long trips travelling solo in the SO Utah desert.
Hopefully I'll be off the steroids soon before they really mess with my head, and I can find a good med combo that will keep me in remission, My dos is super supportive, and I have faith that we will get this worked out soon
Thanks for listening to my update/rant. Feel free to drop advice if you need to. I'm always looking for ways to improve my well being. I'll try to keepo people up to date with what is going on.
36 y.o. male