I’m 48 years old, live in London and I am married with 3 children.
My first bout of UC was when I was around 24 years old, when I noticed that my stool was covered in what looked like white fur – probably familiar to many of you. Of course I thought I was going to die because this was not even slightly normal. This was accompanied by irritable bowel, wind and bloating and a lot of discomfort. When the white mucus turned bloody, I went to my GP. I had a rigid sigmoidoscopy (what fun) and biopsy and was diagnosed with mild (!) Proctitis and Ulcerative Colitis. Treatment was various enemas and suppositories which did nothing. Then I was given oral Prednisone and the condition cleared up completely in 2 weeks……or so I thought.
Thirteen (yes, 13) years later, my symptoms returned – just occasional sightings of mucus to begin with, but then it returned with a vengeance. Last May/June I was suffering from a full-blown relapse, with constant blood and mucus in my stools, cramping and (because it is rectal) the constant feeling of needing to go to the toilet, but with little or no result, other than just blood and/or mucus. I was referred to an excellent Gastroenterologist, who gave me a full colonoscopy and a full abdominal MRI as well as various biopsies. It’s a big thing to have a colonoscopy for the first time – quite intimidating and not very pleasant to prepare for (your colon must be completely empty, I will spare you the details) but It is comforting in a way to have nice colour photos of the 10cm of ulcerated colon – because at least I can see the enemy, and I know that is ‘all ‘ the problem is. I would URGE anyone suffering the symptoms to get a full and early diagnosis, because if it is something even more serious, the earlier it is treated, the better your long-term prospects are. Anyway, my Specialist was very reluctant to prescribe Prednisone ( I think 13 years earlier, the side effects were not fully understood ) but put me on alternating Salofalk enemas and Asacol suppositories. This time it has taken around a year to get my symptoms under control – I would say that in the last month, I have become symptom-free and really feel more normal downstairs than I have in ages.
My Doctor tells me that it is really unusual to be in remission for 13 years and that ‘normal’ UC sufferers can expect recurring symptoms every 3-4 months. I am certainly not expecting to go another 13 years between episodes, and I am taking a weekly Salofalk enema as a precautionary measure on the advice of my doc.
I think my biggest fear this last year was how long it was taking to get the symptoms under control – it felt like it was never going to be normal and it intruded into my family and social life, dictated when (and if) I could have business meetings, and generally took over the running of my life. The recovery was very gradual, but week by week, month by month, the symptoms gradually subsided and became more manageable.
Of course the other ‘elephant in the room’ was whether I was more likely to get cancer of the colon as a result of the UC. My doctor has assured me that with the level of UC I have, I am no more likely to get cancer of the colon than anyone else – so I do feel reassured in that aspect.
Where I’d like to be in 1 year:
Well of course it has taken me just over a year to get to be symptom-free, so I am hoping that I am still there in a year – I am planning to lose around 20 pounds in weight, as I have put on quite a bit – interestingly, I certainly didn’t lose any weight while this was going on…
This is an interesting one – because what works once doesn’t always work the next time – Asacol alone didn’t do it for me, nor did Salofalk, but a combination of the 2 somehow did it. I also tried a low dose of Prednisone early on, but as I mentioned, my doctor was really against upping the dose this time, due to the really dodgy-sounding side effects
written by Howard
submitted in the colitis venting area