New here, please be gentle

I was diagnosed last year and put on Asacol. Was fine (ish) until Nov when they changed meds to salofalk crystals. Turned me into a zombie! Couldn't eat, drink, sleep and had no idea where I was. Changed back to Asacol and to cut a long story short, ended up in hospital to discover it was the med's that were making me ill. Changed meds again to Pentasa and I was put on a course of steroids and have been fine up until five weeks ago when I started another flare up. Went to see consultant yesterday who has put me back on steroids and will see me in three months. Hopefully steroids will sort me out again but he says if not there is the option of Azathioprine. Anyone been on this and did it work for you?

5 Replies

  • Hi I am new on here to, I was diagnosed last October with UC, I was rush in to hospital in February was on steroids, Asacol, a drip and lots of other things. when home again at the end of February I went to see consultant and he put me on Azathioprine to get me off the steroids but it didn't agree with me at all, now having my 2nd flare and I am on the highest dose of Asacol , steroids and Mercaptopurine 50mg once a day which touch wood is ok at mo. it really does keep you on your toes and everyone is different, and it is so hard some days but we will all get there with help. if you want to chat any time I am a good listener remember you are not alone and you don't have to go though this alone, fingers crossed you get sorted very soon x

  • Hi, Thanks for your reply. Well I have been on the steroids for two days now and I feel a bit better already, so I hope they are going to do their job again. If not I will be going down the Azathioprine route to see if that works. It's very hard to explain to someone who hasn't got or is suffering with UC what you go through on a daily basis so a forum like this is very helpful. My daughters try to understand but obviously they only get some of it. My husband tries and is very understanding but even he doesn't quite 'get it'. Every little thing that goes wrong it's 'go to the Drs' but I know that I can't keep doing that because it's part of the condition and I just have to get on with it (up to a point!). When I came out of hospital just before Christmas I felt so much better but I got into a bit of a depression and didn't go out for about 4 months after. But I pulled myself out of it and got myself back on track and I'm OK now. This little episode has put me back a little bit but I'm not going to let it get me down again! Anyway thanks again for the reply. x

  • it is hard but you have to try and stay positive I will keep my fingers crossed for you that you find something that will work for awhile,

    Take care x

  • Hi

    I take Pentasa and have for the last 4+ years, the Asacol was not doing its job. I have been on Azathioprine, all the tests they do before said I could take it, I was on it for about 10 days and then could not handle it so was taken off it straight away. I had flu like symptoms (that's putting it medley)

    Azath' has it's own side effects but you can take it more long term I, you have to go for regular blood tests, weekly to begin with, it can effect your liver function and other organs, but was assured it is better than steroid treatment.

    When in a flare up I don't eat anything..... veg, fruit, fibre, herbs, spices and meat. I only eat easily digestible foods, mash, cheese, eggs, pasta, fish, passatta, mince(little)white bread, and reduce my portion sizes eating little but often. Sometimes it can be a diet for 3-9 months but it is worth it, I hate steroids with a passion and will avoid for as long as possible. I also find that sweets are not good, especially the gum ones, so I have boiled sweets to give me some fruit flavour.

  • I have been on the steroids since Friday and they are working for me. I have started eating again and I am sleeping better because I'm not getting up during the night to go to the toilet. The consultant said that if the flare ups were about every 6 months then steroids would be OK. I know that they are not a long term solution but it looks like they work for me at the moment so we'll see how we go. I have found that read meat is a no go for me and I can't drink tea either. Spicy food is also out but I can get away with a mild curry (korma). I don't eat much chocolate or sweets but do have the odd biscuit. I think it's just trial and error until you find out what suits and what doesn't but we'll all get there in the end!

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