Hi, I live in Cheltenham UK. Would love to get in touch with anyone else from the uk, whether you have IBD, ostomy or pouch!

I'm in the UK - in the North East of England (trying to type using a lamp as it's gone 2.30am and I'm hoping I don't disturb anyone )

IBD sufferer, no surgeries 'yet'

Susan

Good to hear from you. I haven't seen many people from the UK on this site. Do you have Crhon's or colitis? I had ulcerative colitis for nine years before stopping responding to any treatments, hence having to go ahead with the surgery. Had my surgery done in three steps, took just under a year in total.

I have ulcerative colitis - which I have had for 14 years - the only drug that I have responded to is intravenous cyclosporin. Last time I had cyclosporin (3 years ago) they said I couldn't have it again (as it's supposed to be a one off treatment) so I am waiting to try infliximab

I've heard that infliximab has had some success in the treatment of UC, although I thought it was primarily used for the treatment of Crohns. In the first year of diagnosis i tried pretty much everything, with nothing getting me well except lots of steroids. in the end, I tried azathioprine, which got me off the steroids and kept me reasonably well until the time i got so bad i needed to have a total colectomy.

Im in uk too, north yorkshire, I was diagnosed with uc and operated on within afew weeks, have a j pouch now and the pouch is great but had a couplle of fistulas and consultant now thinks it may be crohns which is a bummer (pardon the pun)

When I first got diagnosed with UC, I was in uni, which meant that I had to move to a different consultant when i moved back home, and then moved to Gloucester, so different consultant there and then ended up in Cheltenham - yet another consultant. They all moved between UC and Crohn's and didn't seem to be able to make up their minds, which was very frustrating for getting some consistency in treatment. Anyhow, turned out it definitely was colitis, so I am lucky that now i have my pouch should have no more IBD related problems. It must be awful to go through all that and then be told it may be Crohn's anyway. Are you on any treatment to keep the Crohns under control? I've heard that azathioprine is good for treatment of Chrons and can help with fistula healing.

living in the midlands, saying hi

quote:

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This message has been edited. Last edited by: <Sophia38>,

I'm from Paisley, Scotland and i have my dates for my operation for a restorative proctocolectomy on 6/8/2010, very nervous about the surgery.

Hi CraigR, I lived in London 25 years but now in Oz, I know you must feel nervous bout your upcoming op, but rest assured the surgeons know what they're doing. Had my Jpouch 20 years ago in Australia but my surgeon was trained in London, so they must be good, and have had another 20 years on top!! I had everything out due to UC, except for a tiny piece of stripped back rectum which was needed to operate the Jpouch, but now I don't think they have to keep any of it, not sure if thats due to being too diseased in the rectum or just a better way of doing it now.My UC was really bad,universal they said and 10 days from a major haemmoridge.I'm sure you'll be fine, its easy to say don't worry, but after the op your life will get easier and better, so good luck!! Heather

Hi I'm fairly new to the site, I live on the south coast of England in Dorset, had my j pouch created 7months ago, still waiting for takedown, was suppose to have it on 27th May but it was cancelled the day before due to no beds. I seem to have had problems with my pouch even in the early days after it was created, these problems have continued and no anti biotics seem to be helping. I have already had one examination under anaesthetic as my surgeon thought I may have had a recto vaginal fistula, they didn't find one at that time but found mild pouchitis, I am now in alot of pain and am passing watery blood aswell as puss and getting waves of pain, lower abdomen and also low back pain,dizziness and low grade fever, my next eua they are going to do biopsies I am told to check for crohns, has anybody suffered these problems post takedown? I am really fed up of all these problems, I feel so drained like I use to pre sub total collectomy which I had April 09.
Thanks for reading
Shelly

thanks for your words of encouragement Heather, i went to my doctors about a skin condition on my nose last year, and got talking about how my dad died of bowel cancer in 1983 and what the risks would be to me and my sister, she made an appointment at my local hospital for a consultation and had my 1st colonoscopy in september last year where there were many polyps which were removed and biopsies taken, they were not cancerous but my consultant wanted to do another colonoscopy to see if the rectum could be saved, again biopsies were taken but were not cancerous. I now have my operation to remove my bowel and construct the J pouch. I was also put in touch with genetic councillors at Yorkhill Hospital in Glasgow, i am waiting on them getting results of a blood test for FAP and they will also test my dad's tumour for any comparisons, my younger sister had her colonoscopy a few months ago and no polyps were detected but the surgeon wants to see her again in 3 years.

Hi CraigR,Wow, I didn't think that the UK had got that far into genetic counselling. I'm just hoping my kids(well adults now )won't get UC, my grandad had it, but nowhere near as bad as me, just my luck. Hope all goes well for your op and just think you won't have to worry about polyps etc. anymore. Heather

HI Mickshell, sorry to hear about your problems. My specialist told me that if he even suspected Chrons he wouldn't do the J pouch. Unfortunately alot of people originally diagnosed with UC, who then have alot of trouble with the J-pouch are eventually found to have Chrons. I hope you get all this sorted out fast, if you have pus you've obviously got an infection. I just finished a course of Flagyl myself, thinking I may have pouchitis, but still got the symptoms, so back on painkillers. Sigh, gets rather boring and tedious. Heather