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Autoimmune disease

Ulcerative Colitis

4 replies

strugglingmum9 · 23/04/2018 11:59

My 17yo son has just been diagnosed with UC. We're returning to the specialist on NHS in two weeks to find out about treatment. Can anyone give me a beginners guide on all this, please? He seems to be taking it pretty well so far: no real pain, just a lot of blood etc, but he has not yet realised that his lifetime dream of joining the army is now over and I'm braced to help him through the disappointment practically, emotionally etc. As background, he has a history of depression and his father died suddenly last year. Too much, really, for one young life and I'd be really grateful for advice on how I can best support him and help him to manage this horrible condition, what to ask the specialists, what to insist on, what not to be fobbed off by.
I get that dairy and wheat can make it worse
I wonder whether it is worth getting an in-depth food intolerance test so would love to hear any views on that, too.
Thank you! xx

OP posts:
Singlebutmarried · 24/04/2018 14:46

I wouldn’t get hung up on the food thing, with uC and Crohn’s they are both very individual diseases. I have Crohn’s and am fine with wheat, but fruit kills me. Another friend has UC and can eat anything and everything and manages hers throug meds.

Have a look at the NACC and they’ll be able to point you in the right direction

BobbinThreadbare123 · 24/04/2018 20:01

I have Crohn's-colitis. Genuinely, OP, the food thing is not to get hung up about. We are all different and it is not helpful to cut out food groups or change diet. The gut does not work correctly so eat all the nutrients you can get from any source! Most of the time I eat entirely normally but do not have much dairy. When I'm flaring I live off toast. There's no proof about any of the diet things.

I suggest keeping as fit as possible. I found that my energy levels improved and I am generally more well after starting the gym in a good patch. Plenty of nice loo roll including the moist stuff. Sudocrem!

There are lots and lots of different drugs and treatments so stability is possible. It's a bit unpredictable I'm afraid. Some people genuinely only flare once in their life and never again, some people flare so much they need their bowel removing.

No armed forces but the police etc do not prevent entry with UC/Crohn's. Possible alternative? I have worked my way through a PhD and held down full time work because I have made sure I work with my consultant etc to get the meds right.

starkid · 10/05/2018 13:45

I'm sorry to hear about your sons diagnosis, and hopefully after your next appointment they'll give more information on medical treatments e.g. steroids. He may have long periods with no symptoms, fingers crossed.

With regards to diet, I'd say if food does make it worse it's personal for each person. I tried all sorts before I was diagnosed but was in the middle of a major flare-up, and nothing really helped. I think it's different for each person. Someone I know with Crohns avoids dairy as it makes it worse for her.

Sorry I cannot give too much advice, as by the time I was diagnosed with Ulcerative Colitis my colon had almost perforated so I ended up with an emergency Ileostomy and bag. I had the choice of a 'reversal' a year later, but seeing as they had to get rid of my infected rectum too I decided to keep the bag as with it I have no colitis symptoms and just need to make sure I don't eat a couple of things which could block my ileostomy. But no more freaking out finding a toilet, blood, pain, losing weight etc.

So if it does ever come to that, just to let you and your son know that I was only in my 20's when I had it, and haven't looked back since!

pastabest · 10/05/2018 14:00

I don't have UC but my DP does, he also has coeliac disease.

The food thing is individual to each person you just have to work out what the triggers are for the individual (and it's not always food!). Other than his coeliac my DP manages to eat an otherwise normal diet until he has a flare up and then he has to avoid all the healthy stuff like salad, leafy veg etc and things like red meat, gravy and baked beans. His flare ups are always triggered by stress initially though so he needs to keep generally fit, well and mentally well to stay on top of it.

He is lucky that he is self employed and works on his own for most of the day so if he needs to rush to the toilet frequently during a flare up it's not a problem.

He has recently started taking Mesalazine after an extended flare up which does seem to be making a difference.

I must stress though that by and large he does manage to live a fairly normal life, it's not a nice condition but it's also not the end of the world.

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