Does anyone on mumset suffer with UC Ulcerative Colitis or like me have a partner that does.

[april74]

Hi, my dh was diagnosed 3 years ago, he is going through his first real attack since he was diagnosed, totally knocked him for 6, it started October and he took a dose of steroids for 8 weeks,( he had 6 weeks off work) but the problem not cleared himself up and he has to go back in today. I find is very hard watching him suffer and feel totally useless.

Just wandered if anyone else is going through this themselves or with the one they love, and if there was anything practical that could help. Looked into changing diet, etc etc but nothing seems to stop the cramps and diahrear.

One of my best friends has this. Has had it for years,unfortunately. She always says that eating "slippery foods" such as spinach is a big help.

Thanks JW

Anyone else?

My friend's dd was diagnosed with UC when she was 11yo. Diet seemed to make no difference at all. She eventually had a pouch operation and after some initial problems, keeps pretty well nowadays.

My mum's had this for years. She was told to avoid milk and spicy food. Also salad makes it worse. However my sister who also has it eats anything and everything - diet just doesn't seem to make any difference to her. I think if certain foods seem to cause it to flare up then avoid them but that the same advice on diet doesn't work for everyone. Sorry if that's not a lot of use.

Thanks salads and fruit also make dh worse.

I've had it for about 10 years - found rest, good multivitamin, extra B vitamins and iron (Floradix is good and easy to digest) to replace lost blood, and very bland food is my recipe to get over it. When I have an attack, try to avoid anything that will make my poor inflamed gut having to work so go for foods that in normal circumstances would cause constipation ie white rice, white bread, boiled chicken/fish, no fruit/veg, no cereal except possibly plain porridge and lots of plain water or herbal tea (camomile's good for digestion - very relaxing) - and absolutely avoid milk - a common trigger of colitis and hard to digest.

Usually within a few days of this or less it clears up on its own. Was offered steroids but never needed to take them.

Oh, and since diagnosed, have cut out all caffeine (feel better for it), spicy food (not that keen on anyway), and reduced alcohol as found too much alcohol also brought on colitis. But stress (and lack of sleep and bad diet) is a cause for me and I think commonly, so just try to relax about it.

Once over an attack, should go back to eating a varied diet with fibre, fruit and veg etc - though vitamins are useful back-up though due to poor absrption of vitamins etc in colitis sufferers, from food.

Haven't tried it but have heard positive things of alternative cures eg chinese herbs, acupuncture etc.

Hope that helps!

Thanks just seen your message, passed details to dh who can relate to a lot of it.

Thanks

Hi there,

My sister has just had a second operation to remove all of her large bowel, she has been really ill now for 3 years she had an op about 9 months ago when they removed some of her large bowel but they had to remove the rest of it last week. She's on steroids at the moment and is in alot of pain, she needs another operation in 2-6months time.

She was getting ulcers everywhere, in her mouth under her fingernails, in her ears and in her chest, after her operation last week she couldn't stand the pain and said she was going to kill herself, they wanted to have her sectioned.

My sister and I are very very close, we are the best of friends so I can really feel for you x

Sorry to hear that about yoursister hillary, I hope she is better soon

My DH has UC, has done for a couple of years and in that time he's had two flare-ups.

Things that have helped.... losing weight/going to the gym helped a lot with the associated joint pain.

Diet stuff - just things like not eating any fruit/veg with a skin on it (so peeling apples, avoiding grapes, no tomatoes etc). White rice/pasta, white bread. No wholegrains. That all seems to help make the flare-ups shorter and less frequent.

DH hasn't missed a day of work for it, which is incredible, and I really do wonder how he manages, he sort of just accepts that it's part of his life and he does the best he can. Copes far better than I would I think. He takes 2400mg of asacol a day which seems to help. I love him to bits and hate to see him in pain, especially as there's nothing I can do to help.

my DB had this was cured by removal of bowel (pretty drastic,I know)but it has changed his life so much for the better.

Hello,

If the uc is still flaring after coming off the steroids, then you can start on Imuran which depresses the immune system. This can take a few months to work though.

Were the steroids actually effective when your DH was taking them?