Thank you for your replies.
I am a 49 y.o. male. Hanging on to my last few weeks before I turn 50
My UC may have been triggered from taking a Z pack - zythromycin. I was really sick, and the doctor prescribed that one little pill for any "secondary infections". I have had lots of antibiotics in my life so I thought one more couldn't hurt. I had never taken a one-pill dose of any antibiotic before. It wasn't immediate - maybe 6 or 8 weeks later - but I started getting diarrhea with blood. That was about
I have insurance. I have seen 3 GI doctors in the past 2 years. They say "here is your diagnosis, here are your pills." I have an appointment with a new GI doctor next Tuesday because my condition has gotten so much worse. I have had 2 colonoscopies. The first said "indeterminant colitis", the second said "ulcerative pancolitis".
The pills haven't worked, but it's possible I haven't taken them long enough or in high enough dosages. I read here about
the number of 5ASA pills that people take each day and I have never taken that much. The most prescribed to me was 2 Lialda a day. I took a bottle and it didn't do anything.
In the beginning I started on Asacol HD. I took them over a few days and it didn't do anything so I stopped. I now see you have to take a lot of pills for a few months to see any difference. I took sulfasalazine and it didn't do anything.
I am doing a hydrocortisone suppository twice a day and that seems to help. In fact, last weekend I was down to going 4x per day with partially formed poop, but for some reason it went haywire after a couple of days.
I have taken prednisone, but never more than 30mg. Prednisone gives me a few hours with no diarrhea but when the pill wears off the diarrhea comes right back. People talk about
being "in a flare", and gaining remission, but I have never seen that: I have had diarrhea every day for 2 years (one exception in FT below).
Today I have gone 4 times in the last 4 hours. Last night I took a Lomotil to get through the night - the first time I have done that.
Diet: In short, I have done SCD and Paleo. The problem is that I lose a lot of weight on these diets. I lose 1 - 2 lbs per day. I am 6'0 tall and normally weigh 155. I am down to 135. The diet has not worked for me, but maybe I haven't done it "perfectly" enough or long enough. I could write quite a long post about
my experience and thoughts on the diets. I wish I could be one of those people who saw dramatic results in 3 - 5 days on SCD. I can't tell any difference with any food.
Couple of aspects of UC for me:
When I get in my car, my mind knows that I don't have access to a toilet and so everything calms down. I can drive for hours with not the slightest hint of needing to go. Pull up to the office, sit in my cube, and then I have to run to the bathroom. Go to meetings - everything is fine. Return to my cube, sit down, and run to the bathroom. My wife thinks it's all in my head.
I can be sitting here and feeling 100% fine. No urge whatsoever. Then, like flicking on a switch, I feel and hear a gurgle, there is an urge, and I know it's coming. There is no way to fight it off or make it pass. (I used to be able to get them to pass but no more.) I have to go. Sometimes the urge is so incredibly strong that it's a *huge* ordeal to make it to the bathroom. Takes every bit of my strength to keep it in.
I have done fecal transplants (FT)! I have had some dramatic results, but they didn't last. I now understand you probably have to do it 30+ days to get lasting results. The most I did was 10 days. I now have a couple of problems with continuing: I have very painful hemorrhoids from all of the diarrhea, making it very difficult to insert an enema. You go to all that trouble to take someone's poop and prepare it for insertion and then it's so hard to get it in. Second, my 6 donors are at home which is 1/2 hour away, and it's hard to schedule going home and doing this within a few hours of their donation. Do I drive a half hour, do FT for an hour, then return to work in a half hour? It would be better if I can lie down each time and let it sit there. I need a reliable donation towards the evening every day. It's hard to get the scheduling right. I know it can sit or be refrigerated for some hours.
I believe the only way to really get over this is FT. All the pharmaceuticals can do is try to hold down the symptoms, but they come right back when the pills wear off. And even then they don't work much for me - unless I haven't taken a high enough dosage for long enough.