ll,
Thank you for the kind words and for your interest.
I wrote my first post ever to the forum only a few days ago, even though I've read it's pages frequently over the years. I guess I never felt that I had much to contribute before. Even when my UC started to get noticeably better, I wasn't sure if it was just a coincidence rather than my change of diet that was making the difference. It is only now, 15 months on, that I am totally convinced, and this is why I wanted to share my experience with the forum readers, in the hope that someone else may find something of benefit.
You can read the post about
the diet I follow here:
www.healingwell.com/community/default.aspx?f=38&m=1961438The post gives some background as to the progress of my condition, meds etc. Nevertheless, here is more detail:
- Diagnosed with UC in July 2005. Saw lots of blood in toilet pan, took a taxi to hospital, got admitted after a digital examination and stayed in hospital almost a week. They took stool samples over that period and also gave me a Sigmundoscopy. Couldn't get me a full colonoscopy right a way, so had to wait a few weeks (the NHS has got a lot better since)
- Few weeks later had my first endoscopy, got officially diagnosed with UC/Crohn's. The specialist thought it more likely to be UC, but couldn't be 100% sure because some of the ulcers skipped part of my colon which can be sometimes a result of Crohn's. The specialist said that UC was more likely, and "anyway, at this stage the treatment is identical". So got prescribed mesalazine. It was 4 tablets a day (4 X 500mg), and quite large they were too. I remember thinking it was a real nuisance that the tablets are so large and hard to swallow - how naive I was!
- The mesalazine worked well, and UC was not all that intrusive. I went to the toilet four or five times in the day, and slept well at night. I thought I was going to be on mesalazine for the rest of my life, and that was that.
- 9 months later, I started to get lots of joint ache. Apparently this can happen sometimes with mesalazine, and also I was avoiding dairy products. I also did a lot of sports, especially running. The UC nurse (acts as a go-between the patient and the specialist) recommended cutting down the mesalazine dosage, and my GP advised me not to avoid dairy foods, because there was "no proven link between UC and diet", and "people from all over the world, all with different diets have UC, so diet cannot be the real cause". I was also advised to cut back on sports until my joints got better.
- My symptoms got worse, mesalazine got ramped up. I was hoping I will be back to how I was in the first 9 months, but no.. I got gradually worse and worse.
- UC nurse recommended prednisolone as a temporary measure, to get on top of my worsening condition. The dosage was ramped up higher and higher. I carried on for over a year like this, tapering prednisolone up, then down, then up again and so on.
- It is now over 2 year since diagnosis, and the specialist recommended a second endoscopy, especially as since after the initial 9 months my symptoms only got worse and never really under control.
- The results of the endoscopy confirmed the diagnoses as being definitely UC and not Crohn's. It also confirmed just how bad my colon was.
- I was also prescribed azathioprine (Imuran), initially one, then two, and ultimately three tablets a day (3 X 50 mg). This was mainly to replace the prednisolone. As azathioprine takes a few weeks to build up in the system and kick-in, I was also prescribed Predfoam (prednisolone foam enema). Inserting a large nozzel up that end made me long for the good old days of simply swallowing 4 large tablets! I can laugh about it now, but seriously I found it really intrusive and traumatic at the time - truth to be known, I was very close to despair.
- To make matters worse, the change in medication took a while to settle in, and in the mean time my condition got a lot worse and I became almost completely house bound. I worked from home for a few weeks until my symptoms improved sufficiently for me to tackle the commute, and the risk of not making it to the toilet in time. These were really horrible times.
- Predfoam did work, and it kept on top of my symptoms, and was a lot better than oral prednisolone in that it had none of the side effects for me. I eventually got the knack of doing it, and after a few months I could do it as part of my daily routine, like brushing my teeth, without feeling so upset.
- I thought I had it all under control, even though the supposedly temporary Predfoam had become a daily necessity. Still, my symptoms were finally under control and I could go about my daily life. What could possibly go wrong now? Well, Predfoam got withdrawn from the market (at least in the UK), and I found it harder and harder to get hold of any of the remaining stock (the manufacturer had to reapply for the licence). This was around April/May last year, and the bad old days were with me once again.
- I tried various suppositories and enemas, but none seemed to work. I was reduced to using leftovers from Predfoam canisters, which even though I had my 14 doses out of them had a bit left at the bottom, and being a hoarder I kept them in a box rather than throwing them away. Oh, how I thanked my lucky stars I had those precious leftovers. I rationed them and kept them for extreme emergencies, like when travelling abroad etc. In the meantime I kept trying alternatives but nothing seems to work as well as Predfoam did.
- I received a phone call back from the assistant of another specialist who works at the hospital, as my specialist was on holiday, and I was getting really desperate for a Predfoam substitute. He suggested Budenofalk (budesonide). When he rang me I was actually abroad on a business trip, desperately using the last of the Predfoam leftovers. As soon as I got back to England I went to my GP and asked him to prescribe Budenofalk. In fact I couldn't get an appointment with my usual GP, and had to be seen by another GP in the surgery whom I'd never seen before (or since!). He was really helpful, and gave me a Budenofalk prescription. I went to the hospital's pharmacy, as my local pharmacy did not stock it. I never looked back since, it is by far the best medicine that worked for me.
- After the first week, I knew I had finally found something which could replace Predfoam for me. After three weeks or so I realised that Budenofalk in fact worked better than Predfoam ever did for me and began to wonder what was so special about budesonide (the active ingredient of Budenofalk) that seemed to work miracles for me, and looked at everything I could find out about it on the web. My search lead me finding out that UC was perhaps not all that different to asthma, and it also led me to finding out about the Magee et al diet, which I wrote my first post to this forum about.
- So I started on Budenofalk August last year. I took it twice a day, morning and evening. After about 2 months, and by which time I had been using the Magee et al diet for a few weeks, I was down to Budenofalk once a day, then once every other day, then stopped it altogether and the diet seemed to be sufficient.
- Through all this, I kept taking azathioprine, though nowadays I am on two tablets (2 X 50mg), and relatively speaking on less than half what I was on before, because I have put back a lot of weight which I had lost through UC, and I am now a stone and a half (about 10 kg) heavier than I was when I first got prescribed azathioprine (azathioprine's dose effectiveness is proportional to weight). I'd never really associated azathioprine with getting better. It was mainly Predfoam and then Budenofalk that had any noticeable impact. And since then the diet kept my colon in a good shape. This is why I am now cutting back on azathioprine. I would have stopped it completely but my speciallist feels very nervus of just relaying on my diet, so as a compromised I agreed to cut down one tablets every 3 months. By my next check-up appointment at the hospital I will be completely off azathioprine.
Hope this has given you the sort of information you were asking about. Please feel free to ask any questions, I would be only too happy to help.