Crohn's Disease

[KurriKurri]

Hi there I'm reposting under a different title in the hope of more replies. So have c & p from my other thread:

By KurriKurri Wed 07-Apr-10 23:38:18
I am hoping someone can help me with some information.

Background: My DSis has just undergone an emergency sphincterotomy, after years of problems diagnosed as IBS, the diagnosis now seems to be probable Crohns disease - she has to have more tests to confirm after she's recovered.

Obviously its very upsetting and a shock, she is very distressed mainly because she has been sent home from the hosp. having been told there is a very high chance she will be permanently faecally incontinent. She has been given no information or support about what this will actually mean in her life, how she will manage it etc.

Does anyone know of any helplines, information sources, or anything like that which would help us? She is very poorly at the moment, and I am desperate to be able to give her practical as well as emotional support. Any advice very gratefully received.
TIA.

Yes send her over to

NACC
They will send out info sheet, and if she joins very useful newsletters.
We are doing the sponsored walk in May with them
Dh was diagnosd in 2000

Oh thank you Peachy, looks like there's lots of useful info. there I will guide her in that direction.
Best wishes to your DH, do you mind me asking if his illness is well managed? - this is all very new to me and I am worried for her

How worrying for her
I have had crohns for 20 years - it took them a while to get my medication right but I have been largely symptom free for 13 years other than when pg when it flared up again.

I have never had surgery so can't really help with that. I agree nacc are v good plus ask at your hospital if there is an ibd nurse she can call for advice

Thank you CD - it is good to hear you have been largely symptom free for some time. She doesn't live near me, but will pass on info. about ibd nurse. That is what she needs I think someone to talk to who can answer all her questions.

My DH was diagnosed in 2001, and he was unwell for a few years off and on when the dcs were tiny. He was permanently exhausted, and was wiped out by the slightest infection, and our kids were always sick.

He had an operation on a fistula quite early on, which helped with his dx, before that he had been told that it was ulcerative colitis.

However, the good news is that he has been off all meds for almost two years, looks great, and is addicted to his mountain bike. I think it is rough at the start when trying to sort out treatment, but it is not the sentence that we thought it was going to be.

Hi Kurrikurri Dh is managed very well and like Countessdracula hasn't had a flare for a considerable amount of time - nearly 9 years. He does suffer from 'symptoms' however which are very like IBS, constipation, bloating, gripy pains etc.
If your sister can get to meet the IBD nurse she may also have information to give her. Dh got stuff from his and I keep suggesting he talk to her about how he has been feeling.

He find some 'alternative' things are good too.
A good vitamin with a pro/prebiotic, he takes centrum ones I think.
Peppermint tea/ capsules and he has recently started taking charcoal to help with his gripy pains.

Turmeric is also reportedly good.

We haven't really found that diet makes a difference although we do try to have a healthy diet with fruit and veg and fibre.

I think Nacc have a helpline and they may have a local branch near her. They also do good christmas cards

Thanks for sharing your stories and your advice Pinkhouses and Peachy - great to hear your DH's are doing well. I'm hoping once the DX is confirmed things will improve. She's been poorly for so long, and lost so much weight, in and out of hospital. So I'm hoping her dx will mean things start to improve.

I'll remember about the Christmas cards come December