Hey name is Gabe and I have had to deal with Ulcerative Colitis for the Past 3 years. I have had my colon removed about a year ago and will be having a J-Pouch done on the 15th of Aug 2011.
As I mentioned I have lived with UC. About 3yrs ago is when I first started having my problems with UC but was unaware that that was what I had.
I have had bleeding hemorrhoids before and attributed to my bleeding to that. I can recall of having some IBM’s prior to that but that too was not alarming to me at the time. I had gone about a good week of bleeding when having bowel movements. During this time I also noticed that I was getting constipated. It seemed no matter how much I wanted to have a bowel movement I could not. In my opinion this accelerated my UC getting worse. I say this because it was about a month before I had a bowel movement. I think since everything had been held back it only fed the inflammation I already had. It was on May 6th of 2008 when I had my bowel movement. From that day forward I could not stop and only worsened. Prior to coming down with all of this I had lost weight by jogging and just simple exercising. My diet was nothing out of the ordinary. I had gone done from 230 to 185 in about 8 months. So I was pretty fit.
I had been given every type of laxative to help me get by with my constipation. I reckon when I had my bowel movement and returned to the doctor I mentioned that it had been nearly a month since my last bowel movement. I was told that that was unlikely because it could have killed me. From May 6th everything seemed to go out of control. It seemed I was having bowel movements like 10 times a day, that increased over time. Within a few days it seemed that my bowel movements were basically blood. I was getting stomach pains and was tiring more. I was losing so much blood that within weeks I was anemic. My bowel movements were now getting worse, it got to the point just moving was causing me to have a bowel movement.
I want to say within a couple of months of this I was admitted into the hospital. By this point I hated to move, was constantly in pain and tired, oh very tired. When I got to the hospital the normal procedures were done, the pulse rate and BP. I can recall the CNA calling the nurse to take my BP, the nurse in turn passed the news to the doctor. I was told that my blood pressure was so low that they were afraid to do anything drastic because I could simply go into a coma. The only thing I was given was a IV. Within time I was wheeled upstairs and poked and prodded, was asked a thousand questions. Eventually I was given a colonoscopy after more testing and blood work I was told that I had a full grown rage of UC.
When I got sick I weighed 185 within 3 months I dropped down to 135. I pretty much was given all sorts of treatments and drugs. The doctors I was seeing were in my opinion not sure on what to do aside from the basics. I was going back and forth for about 5 months. In my initial admittance into the hospital I received 2 units of blood. By October of 2008 I had to be admitted back into the hospital. I was losing even more blood. For the next 12 months I received about 60+ units of blood. I was going into the hospital about every other week. Both the Internal medicine doctor and the Gastroenterologist worked in trying to put my Colitis into remission or at least tame it some.
After 2-years of medications and such I was advised by my Gastrologist that my colon was to inflamed to be healed properly. In Aug. of last year I finally had my colon removed. The doctor asked me how I could have dealt with the pain. My colon was so inflamed that it had gotten fused with my spleen. Unable to separate my colon spleen the spleen was broken in the process so it was removed as well.
I have been living now with the bag at my side. On the 15th of this month I will be having a J-Pouch. I am not sure if that is the best alternative. So I am at a loss. I recall the days of going constantly to the RR. My bowel movements exceeded 30-40 times a day. Many times I never slept of if I did I would pass out on the toilet. I was grateful for any sleep and hated when I had to be woken up for meds, the whole cycle of trying to sleep would start up again. I wanted the bowel movements to stop. I told the doctor I could care less of what needed to be done. I could deal with the pain just make the bowel movements stop.
For the first year my life was me in bed and with little to do. Since I have had my colon removed things are better. I did develop blood clots and other small issues. Colitis ruined my life to the point that I had to move in with family, lost my job and just about everything else. I have not worked this whole time and when I have tried my body just does not want to function the way it use too. I have been on medicaid now for awhile which I am grateful for but wish I could get back to work which I doubt that will happen.
I am taking some online courses for Photography in the hopes of that being to supplement me some financially.
So now I am looking at this J-Pouch and wondering if it will be worth it. Any ideas or opinions on that would be appreciated!!!
Details about My Ulcerative Colitis Medications:
My meds were pretty much asacol. I was taking those about 3x a day every 8 hours, four pills each time for a total of 12 pills. I cannot recall the dosage.
Prednisone was most definitely on the list. The dosage of that varied, I want to say I was taking anywhere from 60-80 mg about 2x a day. That dosage changed a lot. Everytime I was being weaned off of them my colitis would flare up so the dosage would go back up.
I was on Remicaid for a bit but after a few infusions had a reaction to it
Was taking Humira prior to having my colon removed.
These were the main medications taken for the colitis but was taking other meds not associated with it.
Submitted by “Gabe” in the Colitis Venting Area