When I was around 14 I had the flu and it never seemed to go away. My general symptoms subsided, but I had diarrhea from this moment to the present (as least this is as I remember it). I never said anything to my parents until I was 17 when my symptoms were becoming increasingly unbearable. I was having constant bloody diarrhea and I lacked control of my bowel movements. I often had accidents.
My Colitis Story:
I began seeing a GI doctor and several tests were performed. My doctor determined from my colonoscopy that I had Ulcerative Colitis. He immediately started me on Asacol and I took 12 pills a day for a total of 1 year. After six months of taking Asacol my doctor added Entocort (can’t remember the dosage) to the mix, and 3 months later substituted for Prednisone (40-60 mg/day). As soon as I began taking Prednisone I developed sores on my rear end and my mouth and throat were thoroughly plastered with the painful things. I personally believe that these sores, or ulcers, continued from mouth to anus (I told another GI doctor this once, however, and he looked at me like I was crazy). Needless to say the ulcers made it difficult to eat. I “ate” chicken broth for a week because it was too painful to eat anything else. The ulcers continued for about 4 months. I was bed ridden throughout this time and then off and on for about 6 more months, and my weight dropped from 180 pounds to 130 pounds (I’m 6’0″ and not even sure how I could weigh 130 pounds and be alive). I looked like a walking skeleton and moved like a turtle. It was a slow recovery, but I returned to somewhat “normal” activity after about a year from the first appearance of ulcers in my mouth.
It has been 9 years since that painful experience and I have had zero luck with finding some relief from UC. When I developed the ulcers in my mouth I, of my own accord, tapered off of the medications I was taking. After I had somewhat recovered enough to visit a doctor, I began a search for a new doctor because my GI doctor said he could do nothing more for me. I sought help from about 15 other doctors, but since they mostly had the same treatment I lost faith in them and decided to search for an alternative. I then spent about 4 years seeking a remedy through natural methods. You name it, I’ve done it. Acupuncture, diets, vitamins, cleanses, chiropractor after chiropractor. After all this time and money spent, I was still having frequent, bloody diarrhea. I was 22 and without insurance so I decided to give up for a while and move on with my life as best as I could.
With the passage of the new health bill, I was able to get on my parents insurance for a few months before I turned 26 in May. I decided to fulfill Einstein’s prophecy of insanity and, “[do] the same thing twice, expecting different results.” I had a colonoscopy performed in March and was diagnosed with severe UC, and had one non-cancerous polyp removed. My doctor prescribed Asacol HD, and since it was supposedly a little bit different, I decided to give it a go. I was bed ridden after 3 weeks. Of course, I gave it up and reaffirmed that I did not want to stupidly go down that path again.
It’s now August and since I know not what to do, nor have I found a hopeful treatment, I have just decided to put things on hold again and try to live as normal as possible. I know that I can’t ignore this forever, but I just don’t know what to do. I long for the day to enjoy a nice release on the toilet.
Any spark of hope would be much appreciated.
Submitted in the Colitis Venting Area by: “Sir Poops-A-Lot”