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Want to support niece with ulcerative colitis, but how?

(2 Posts)
IrritableGrizzly Wed 17-Jun-09 06:31:12

My darling 17 year old niece was recently diagnosed with ulcerative colitis. She had been suffering with the symptoms for 2-3 years. She is now on a load of medication, mostly steroids and anti-inflammatories, I think.

At first she seemed to be coping with it quite well, but this last week she has been very down. She has put on 2 stone in a month through the steroids, which for a teenage girl during the summer is depressing enough. She is also suffering from insomnia and nausea. She is meant to be having a colonoscopy soon but says they haven't given her a date for it, and she can't reduce the steroids until she's had it.

I have read a bit about this condition but don't feel I know enough to be giving her advice. I gave her the links to some websites that seemed like they would be helpful, for people who suffer with UC. I just wish I could do something else.

Part of the problem for me is I live abroad and can only communicate over email, which feels a bit impersonal sometimes. I really just want to see her and give her a big hug. I love her so much, and hate to think of her going through thissad

I'm not really sure what I want to ask. Just I suppose, if anyone who has, or has supported a loved one through this, is there anything I can say to make her feel better? Have you tried any remedies or medications that have reduced the symptoms? Is the weight gain permanant, or will she start to lose it when she changes her steroid dose? I would be so grateful for any help at all.

Plonketyplonk Wed 17-Jun-09 09:21:40

The poor girl. UC can be a horrible disease. Mine is generally controlled by Asocol, but I was on steroids when I was first diagnosed. The steroids are very good at dampening the immune system, but they can have unpleasant side effects.

I don't think the weight gain is permanent. Have you seen the UC and Crohns website?

Sometimes if the colitis is that bad, they will operate on the colon. Perhaps for now, they are trying to get the condition under control. It is an exhausting disease, and certainly potentially depressing.

The Citizens Advice Bureau can help with benefits and form filling. In fact, some of the forms should not be filled in alone!

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