Does anyone have Chrons Disease?

[Disenchanted5]

Can anyone share their experiences please?

[ShowOfHands]

I think lulu has Crohn's. I may have made that up.

[Disenchanted5]

Crohns, yes sorry

[Disenchanted5]

bump

[choufleur]

No but my dad does and he's found the national association www.nacc.org.uk/content/home.asp very useful.

[MegBusset]

Not Crohn's but ulcerative colitis, I found the NACC very helpful -- website here.

[MegBusset]

X-posts!

[castille]

There's also the IBD Club

[Disenchanted5]

Thankyou will look at those xs

[Disenchanted5]

bump

[theagedparent]

I have crohns disease and have for about 20 years. I have had 2 operations and various medicines for it, horrible disease it is.

[emeraldgirl1]

My aunt and cousin both have it - worse for my cousin than my aunt. I know my cousin doesn't take care at all of what she eats - she doesn't avoid rich and creamy food - and I think there is a suspicion that this is a very silly thing to do as it seems to make it, if not worse, then certainly not better.

I think there are some careful exclusion diets that could have a big impact if you asked your doctor or a (good) alternative health practitioner. Worth a try over steroids or operations I would think. Good luck!

[silentcatastrophe]

I have UC (ulcerative Colitis),which is mostly fairly benign, until I am under a lot of pressure. Then it is miserable. The steroids are horrible and although my gp says the anal suppositories have fewer side effects,I'm not sure.

[l39]

My mother has had Crohn's for many years.
I think treatments have improved since the 80s. At one time she was being hospitalised often, but flareups became less frequent after a big operation (which removed some intestine and also found a large gallstone which they gave her in a jar). She eats a very restricted diet. (No wholegrain anything, very little fruit or vegetables - in particular garlic or onions have terrible effects - no lamb, no cow's milk.)

She hasn't had any serious flare ups for years now, even though she still smokes. (I believe giving up smoking is thought to prevent recurrences). She has ankylosing spondylitis too, they're linked. None of her children or grandchildren seem to have inherited it though.

[Ruthyn]

My DS aged 4 has crohns, he was diagnosed 12 months ago. We are told it is very rare in such a young child. It more typically develops in late teens or twenties. DH has two aunts who developed UC in their 40's.

It has been very hard for him and for us. He is on medication now, and symptoms improved dramatically, although still lots of diarrhea and tummy aches. I have angst for ages about different food in his diet, we have omitted a lot of different foods with no definite conclusions, made harder cos we are relying on a four year old to tell us how he is feeling! Dietitian has told us to eat as varied a diet as possible until we are confident something causes him problems.

I have heard of a huge range of food can cause problems with crohns sufferers, each case is different.

I would love to speak to another mum with a young child with crohns or UC. IS there anyone out there?

Can I ask disenchanted5 why you are interested?

[Ruthyn]

There are loads of people on facebook with crohns, there is a group to join! I found it very useful just reading about how other people coped and what they found helped.

[jd1111]

I have Crohnes and have heard great things about ww.cicra.org. The lady who runss it set it up after her son was diagnosed with Crohnes at a young age. She would be a great person to talk to for help and advice for your son.

[snoppymum]

My child has Crohn's and is having treatment which is making him a lot better

[SparkyDuchess]

Yes, I have crohns, diagnosed nearly 8 years ago. It's not much fun, complicated for me by the fact I also have rheumatoid arthritis.

Why do you ask? New diagnosis?

[SparkyDuchess]

Just noted age of thread...doh

[conkerchops]

i also have crohns aswell as rheumatoid arthritis, and coeliac disease.....seems auto immune illnesses like to come in 3's!...i would also highly recommend NACC as an organisation - and a website called www.crohnszone.org...very good chat forums there.