I am a 27 year old male from Wales, UK.
I have a physical disability (from birth) so this made having UC a bigger challenge!
It’s been three years since I started having UC symptoms.
Slight urgency first thing after waking up.
4-5 formed bowel movements per day.
John’s Colitis Experience:
I have had Ulcerative Colitis for three years and the symptoms started after I had the flu which I believe seriously weakened my immune system. I had been living 200 miles away from home for many years and started to suddenly suffer from severe abdominal pain, urgency, loose liquidy bowel movements and had accidents on a daily basis. I continued to live and work like this for a year before being diagnosed and started Prednisone and Asacol which proved to be ineffective.
In Sep 2010, I was in still a severe state and finally decided I could no longer cope with it on my own. I have a physical disability (Vater Syndrome – may want to google that!) which makes having UC even more difficult for me. My disability had no bearing on me ever getting IBD and there was no history of it in the family. I moved back home to my parents to seek care from them and to receive medical treatment from the local hospital which had all my medical history. At my parents, I have a special toilet which washes and dries my bottom – cool eh! I still saw no improvement in the last quarter of 2010 and was going at least 20 times a day with frequent accidents on my mother’s carpet! Like those with severe symptoms, there was no let up of the colitis – I lived with it every hour, minute and second.
I was then admitted into hospital Feb 2011 for two weeks where I failed to respond to IV Steroids. My Gastro decided to put me on Ciclosporin which was being trialled as a new treatment at the time and also 6MP. I saw some gradual improvement by May 2011 but still felt ill with UC. I was still having problems with immediate urgency (especially in the car) and still wasn’t eating properly. I continued to battle on in the last six months of the year and at times remained doubtful about the 6MP but was reminded that it could take longer to work for me because I had been in such a bad way. I was thankfully off oral steroids by this point but was then struck down with food poisoning which left me in hospital again for a week – completely unrelated or affected the UC. Just before Xmas my Gastro put me back on Mezavant XL again which I was optimistic about because I had started to feel more stable with more formed stools.
I’ve had a fantastic start to 2012 and it’s definitely been the most consistently well I’ve been since Jan 09. I had to stop taking the 6MP for a few weeks because it had caused my red blood count to drop but I’ve started it again at a much lower dose (from 100mg to 25mg). The urgency has significantly reduced and I have had no accidents and in the last week the soreness has subsided which has left me feeling absolutely fantastic. I’m also eating/drinking a range of things really well again with very little obvious effect. I hope this is the start of a massive turnaround and I just plan on now enjoying this feeling of improved wellness
To think that this time last year I was coming out of hospital after two weeks of severe UC symptoms, injected with two types of medication and told to manage taking initially 20 pills a day. I am now currently only taking two and a half tablets per day which are working. Last weekend, I went away to see my friends who I was forced to give up when my UC struck and had no symptoms which was obviously a big relief! I’m definitely feeling more optimistic after believing that I would never get better during those dark days and nights of being stuck upstairs.
My final thought is this:
Getting better can just be as overwhelming as when we are seriously ill with UC.
Ciclosporin infusions and oral tablets for three months – more effective than IV steroids.
6MP – took about six months to kick in and initially left me with nausea but not as bad as when I took Azathioprine.
Mezavant XL – soothed the soreness in my colon and began to quicklyq improve the formation of my stools.
written by John
submitted in the Colitis Venting Area