Newbie here, great web site and I have just surfed through the first four pages with lots of valuable information that I am only beginning to digest.
I've got a few questions, then will share my personal story, not unlike a lot of your own.....
1) What is the life expectancy for someone with UC (specifically pancolitis)?
2) What is the life expectancy for someone who chooses the J-pouch surgery?
3) What happens as you age with UC? I.e. harder to fight off infections at 75, harder to fight flares at 75, will I live to 75 because of UC, etc......
4) Does anyone worry about
the side effects of imuran or remicade versus the possible good news of remission?
I was diagnosed in early March with moderate to severe pancolitis. Started with six asacol / day, soon up to 12, along with 40 mg of prednisone. I was diagnosed via a colonoscopy after 4 weeks of 6-8 bowel movements per day full of blood and mucus. GI doctor told me diet didn't play a big role and to eat whatever you can tolerate. Well the prednisone worked well and actually got off in August for 1.5 months.
In mid September, I had a slight flare in which GI doc went to 20 mg of prednisone again. Worked immediately. Got off again 2 weeks before Christmas. Now all of a sudden it feels like I just got UC for the first time again. I started having three to four bloody bowels / day and my right side hurts constantly. Only relief is during sleep. Doctor once again went to 20 mg of prednisone and 50 mg of imuran. Symptoms have not changed much, side still hurts but am down to 1 bloody, mucus, diarrhea bowl movement per day.
Doctor sent me in this week for a small intestine barium test to rule out Chron's, which thankfully came back negative. He upped me to 40 mg of predniszone and 100 mg of imuran (blood tests came back o.k. - except elevated white cells due to inflammation per GI doctor). Of course pooping barium and blood is a hard way to gauge any current effect this week. I still have side pain and also really foul gas, which I know is a bad sign.
GI doctor thinks I went from being steroid dependent to possibly being steroid resistant. He upped me to 40 mg to give the imuran time to kick in, however he said if I don't get better in the next week or so, he'd want me to go straight to remicade, which scares the heck out of me! He said I can choose to skip the remicade, but then it would basically be operating table. This has all happened way too fast for me. I'm scared and have no idea what to do.
Do you all think the prednisone is working right now? I am still pooping pretty much diarrhea and blood, but only one time a day. My side is not getting better, nor is the gas. What are the rules of thumb on bleeding, flare ups, and how long to wait? The imuran is making me extremely nauseas and I have vomited twice in the two weeks I've been on it. But the thing is after reading some of your own flares and stories, I'm not even that bad all things considered with only one bloody bowel per day.
The reason for my life expectancy questions are that I have two beautiful kids (5 and 2) and a lovely, supportive wife. I want to enjoy being a grandparent and growing old with my wife and also have a good quality of life. However, at 31, things just seem like they have progressed so fast and there is no end in sight. Like I said, not really looking for sympathy, but just wondering if you have any suggestions, opinions, etc on my situation.
Also, my grandpa's brother died from ulcerative colitis at the age of 33 and that is really weighing on my mind. However, all four of my grandparents (all in their 80's) are all healthy and still living. I just don't know about
how soon to think about
surgery with the hereditary issues from my grandpa's brother.
Any and all help will be very valuable and I thank you. God bless you all fighting this horrible disease. Thanks to to the moderators for this site, wish I would have found it sooner : )
Asacol - 12 per day
Prednisone - could be back up to 40 mg : (
Imuran - 100 mg
Omega 3 - 1 per day
Post Edited (Colitis Confusion) : 1/1/2009 6:40:07 PM (GMT-7)