Posted 9/30/2007 9:42 PM (GMT 0)
Hi everyone,
I posted here a long time ago when I was initially diagnosed with Ulcerative Proctitis. Since then, a lot has happened, changed, come and gone and I've had a change in symptoms. I have a bunch of questions that I was hoping those familiar with UC/UP may be able to help me with. A little background on myself.
I started having some constipation/diarrhea issues about 5 years ago. At the time, I went and got a colonoscopy done by a GI doc who said I had very mild inflammation and that I should just take a bunch of herbal supplements he recommended. He was a homeopathic doc and I just found it too difficult to stick with the hardcore herbal regimen so I never really got 'treated'. I got used to my symptoms but they were never that bad - occasional constipation, etc.
about 3 years ago, I went and saw a new GI doc. I explained the symptoms to him, and had my initial colonoscopy results sent to him. Initially, he thought it was just a lack of fiber, but once he saw the inflammation on the colonoscopy report, he wanted to do one himself. So I had one done and was diagnosed with Ulcerative Proctitis in a very mild form (as he put it). He prescribed me canasa suppositories which helped for a few weeks, but then didn't do much.
Since then, I've tried the canasa on varying dosages. At one time, doing one in the AM, and one at night (the 1000mg kind). I've had a two more colonoscopies since then (last was done earlier this year) and they came back with the same - mild proctitis. The last time I had it done he said that the proctitis looked better, but it certainly never feels that way.
I've generally tried to take the canasa as best I can, once at night, but I just don't feel like it makes much of a difference. He's had me try an enema medication before and that was not fun, nor helpful. I generally suffer from the same symptoms all the time - mucus, just lots of it - liquidy, and blood. And I feel burning in the rectum at times.
I went to Mexico this past summer and came back to the most horrible abdominal cramps I've ever had. I thought it was traveller's diarrhea, but antibiotics didn't do jack. I eventually started on Asacol, my doc figuring maybe the proctitis got worse (although he is still doubtful of this since I've had the proctitis for so many years). The asacol didn't really do much, but the abdominal pain just eventually went away. I always felt it at two points in my lower abdomen, bottom left and bottom right just below/to the side of my belly button. I'm not sure if this is colitis getting worse since I haven't had a colonoscopy since then, but I stick with the asacol for now along with a canasa every night. Right now i'm at 4 400mg pills, 3 times a day (so 3600 mg a day) of asacol, along with the canasa at night.
If I skip a dose of canasa, I get blood and mucus the next day. But it seems like even when I'm on it, I have more bad days than good. I recently got examined by a colorectal surgeon and he said he saw hemmorhoids. My gastro doc thinks that it's possible that the hemmorhoids are causing the mucus/blood and burning. Although I'm not sure that is the case. The surgeon said they can be treated surgically, but this surgeon who had the personality of a 2 by four basically put the fear of god in me saying that he generally does not advise such surgery on proctitis patients since there is more risk that it won't heal up and I'll be in worse condition than before. I mentioned this to my gastro doc who thought that was rather silly as I have very mild proctitis in his eyes (and the surgeon on examination said the inflammation is very mild). The gastro doc thinks that may help me. Me? I have no idea. So open questions I have are:
1.) Does this sound like a case of proctitis, full blown colitis, or more? Is it possible for hemmorhoids to exhibit some of the same symptoms as proctitis? I question if a lot of the symptoms I have are related to hemmorhoids simply because my understanding was internal hemmorhoids do not burn or discharge mucus.
2.) Has anyone heard of UC/UP patients getting surgery/medical treatment done to hemmorhoids with success?
3.) As an aside, all this medication really gets me down, especially since it feels like it doesn't do jack. I really wonder sometimes if it's just better to go for surgery to remove my darn colon. I guess this is extreme, but when it sounds like your life goes back to normal after that, it really makes you wonder. Is surgery really only the best option when all medication has proven not to work?
I've had pretty much every stool test known to man, no parasites, no bacteria comes up, etc. I'm pretty much at a loss now. The only thing I can think of is to start on probiotics thinking maybe a bunch of the antibiotics I took messed up my colon. Any help and advise is much appreciated, and thanks for bearing with me on the long post :).