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HELP! Consultant says Immuno-Suppressant Drugs next step!

Intro:

Hi, I’m Bonny, 36 years old, married, 3 children. I was diagnosed with ulcerative colitis last year and I’m still trying to get on top of things!

Some more about Bonny:

I live on Anglesey, a lovely island just off North Wales, UK. I’ve always enjoyed the outdoor life and sports but find those things difficult to do at the moment. I’m still playing netball as its held in a sports hall near some toilets!!

Symptoms:

A huge amount of blood pretty much every time I go to the loo, whether its a poop or a wee. Some urgency but that’s not too bad …. at the moment. Couldn’t even think about doing a sneaky fart unless on the loo! Sorry to be graphic, but really good to share with other people!

Bonny’s Story:

I was diagnosed with proctitis/uc Summer 2013. (I had an episode of this 2 years earlier but didn’t realise it was uc. That was cleared up with Colifoam) I’ve been taking oral mesalazine plus mesalazine suppositories. (I’ve tried Colifoam and Salofalk since last year and they didn’t work.) Also take Laxido which is to loosen stools as constipation is often a problem. Over this summer, I was given prednisolone, which amazingly worked and gave me no side effects! However, within a week of finishing them, the signs of uc were coming back and I’m now in a full flare up. I’m gluten free and follow the Fodmap diet. I’ve also reduced my carb intake a lot. I eat A LOT of veg as constipation is a problem (anyone else eat a lot of veg for constipation and proctitis?) I’ve been taking a probiotic, but just increased that massively by starting the ultimate flora 50 billion probiotic. I’m really not sure if its actually increased the amount of liquid (blood / mucus) I’m passing. Also taking fish oil. Just bought l-glutamine and turmeric to try.

I’m seeing my consultant next week and they want to put me on the immuno-suppressant drugs…azathioprine? To anyone who can help, I’ve got 2 questions…1) ANYONE KNOW ANYTHING I CAN DO TO AVOID GOING ON THESE DRUGS PLEASE??? and 2) anybody have any good stories about being on these drugs?

I’m really concerned about going on such hefty drugs. I just think I’ll end up not knowing if I’m ill from colitis or from all the drugs I’m taking. I’m worried about all the side effects I’ve read about these drugs. I’ve really been trying to fight this myself, alongside the drugs, but maybe I need to do more.. the SCD diet, no carbs at all, different supplements?? I would be so grateful for anyone’s advice to get out of this flare without going on these immuno-suppressant drugs.

Medications / Supplements:

Apart from taking the prednisolone for 3 months, I have lived with a flare up since Jan 2013. Therefore, I don’t really feel anything is working, considering I can’t keep taking prednisolone. Any advice would be great as I’m fed up.

written by Bonny G

submitted in the colitis venting area