I just found this message board the other day and have spent the better part of the last day and ahalf reading through everything. What an amzing resource and community there is here!
My UC stated a year ago this week. I started going to the bathroom more frequently day by day. Before I knew it I was going 12 times a day, and it was becoming more "urgent". Within a week I was seeing blood. At first I thought it was just because I was going so much that it was causing some irritation, and it was all just a stomach bug or something. As the frequency increased so did the amount of blood, and about 10 days in I realized that I would have to see a doctor. At 41 years old I had never had a rectal exam, and wasn't excited to have one...and that uncomfortable experience led to a colonoscopy. That's when I was diagnosed as having Ulcerative Colitis. The doctor said I would be put on medication and within a couple of months I should be fine and back to normal, but unfortunately he was wrong.
I was put on Asacol and within a few days I started seeing less blood and the frequency started to slow, but I started having side effects to the medication. Each day I felt more and more "sore". The pain was all over but mainly in the following joints: hands, shoulders, ankles and feet. I called the doctor and he felt I was having a bad reactions, and told me to stop taking it immediately. I had to clear my system of the Asacol before I could start anything else. After two weeks (colitis was back in full swing) he changed my medication to Pentasa. Within 3 days of taking that drug again the colitis was better but I was in agony. I had trouble walking, and if I sat or laid down for more than a few minutes my body would start to freeze up. Once I moved around (which really hurt) I would be fine, but it was obvious something was very wrong. I woke up one morning and had an itch on my nose, but could not bend my arm enough to reach my face. I almost had my wife call 911, but eventually managed to get out of bed. Once again the doctor told me to stop taking the drug. I would have to wait 2 weeks to start something else.
It's worth noting that I have never been "allergic" to anything ever before, nor had I had ANY illness past a cold or strep throat, never anything serious.. MY GI asked if I ever smoked. I smoked for 17 years before quitting 7 years before that conversation. He told me that former smokers who have the genetics to develop Colitis are 50% more likely to have it. He explained the auto-immune cause and asked if any one in my family has anything similar. My sister has really bad psoriasis, he said that was related to the same issue.
The worst part of these two+ months was that I would have to go every hour or so, all night. So I went over 2 months without sleeping more than 2 hours in a row. I was exhausted and anemic and miserable. That's when I was put on Predispose. Ramped up to 60mg a day, my colitis cleared up and I felt GREAT! That was short lived... A few week later I started feeling weird. My head was buzzing and my feet and legs hurt. he started weaning me off the Prednisone. and I was supposed to start on Imuran, but a comedy of errors occurred with the blood tests and my colitis was back in full effect once again, so back up to 60 mg Prednisone...
I have blood work done every 2 weeks and was up to 250mg a day, but it turns out my blood enzymes aren't capable of breaking down the Imuran properly. My GI dropped my Imuran down to 25mg a day and put me on Allopurinol to help break down the uric acid in my blood to see if that powers the Imuran better. I had my first blood/liver test yesterday and have to wait a week for the results.
I have been on steroids now for about 10 months (including long periods at 40-60mg's a day) and can't wait to get off them. I have had bouts of roid rage, when I lose my temper at stupid things, but it has started to get better as I am weaned off. I am down to 10mg one day and 5 mg the next of Prednisone, and have no real colitis symptoms. My BM's don't look like the did before this disease hit me, but they are not urgent, there is no blood, and I only go 2-3 times day. I hope it is the Imuran that is sustaining my condition, but until I am off the Prednisone, who really knows. As I wean off the roids my feet and legs hurt. I have the big face, the hunch back and my head hurts, but I am starting to feel more like myself. I still lack my normal energy and get tired really fast when doing anything physical. It sucks being ready for bed at 9pm!
I have had 2 sigmoidoscopy's and after the last one, the doctor said that if the Imuran/Allopurinol combo does not work, we should discuss surgery... I want to try more meds before going down that road... I found this message board the other day and am really thrilled to have discovered it. I see many other ideas/options posted here that can be tried before allowing them to remove my colon.
I plan to read this forum regularly, it is great to see there are others who understand what this disease can put you through. It is clear that this disease effects everyone a little differently, and doctors have different ideas for how to treat the various stages. That provides more ideas and information and that can only help us all to find the right path for dealing with our own cases of UC.
Post Edited (oldplayer) : 2/5/2010 9:38:11 AM (GMT-7)