Is Crohn's Disease considered a life limiting illness?

[2aminthemorning]

I think DH may have it. He's 34. He's had blood in his stools for a few months. He's also had dreadful mouth ulcers and small lesions on his hands. And has complained of feeling nauseous in the evenings sometimes.

He's waiting for a colonoscopy following a preliminary investigation that didn't find piles (as we'd hoped) but saw a bit of redness further in.

DH's mum as Celiac Disease. I don't know if that's relevant.

I'm frightened. I'm disabled and we have a small child. I rely on DH a great deal. I hope the stress of that hasn't brought this on in any way.

If he has it, is he going to be ill a great deal? Will it impact his life a lot? Is it possible that he will die? Will he be in pain? Is he likely to be able to work? Does it get worse?

Please don't panic. I don't know a lot about it but I think it can be managed well so that people can live a more-or-less normal life. I've never heard that it is life-limiting

I know someone who has it who has been well for decades! It can flare up from time to time but can be managed

That's very reassuring educating, thank you.

I've lived with ulcerative colitis now for 18 years. Luckily it is very well controlled. UC is similar to Crohns but involves a different part of the bowel. Good luck to your DH.

I was diagnosed with Crohns just over a year ago but my dr thinks I've had it for about 10 to 15 years . I've been really well for the last year & I'm on medication. I'm having a small flare up at the moment bug it's manageable. The NACC website had loads of information & they're really helpful. Good luck to your DH.

Sorry also meant to say my consultant says you can live a normal life with Crohns you just need to be more aware of how your own body functions & learning to manage the flare ups is the hardest part.

I have UC (so similar to Crohns) and there is huge variation in disease progression between people so it is very difficult to generalise. However, there are tons of drug options to control these diseases with new and exciting drugs being tested all the time. It might just take a couple of years to work through the drug hierarchy to find the cocktail that keeps your DH well.

There are a couple of forums where people with Crohns hang out and chat. You can find them on google but try not to get too scared by what you read - obviously the people who are struggling the most tend to spend the most time posting.

My sister has had ulcerative colitis for 15 years. She had about five years of quite bad flare ups before they decided to remove a large section of her bowel and she had a colostomy bag for a while. Then they sort of plugged her in again and she's been pretty much fine for the last ten years. She has to be more aware of her diet and body and has to 'go' more than average, but in that time she's managed a levels, moving away to a demanding medical degree, and moving around several times for her responsible and well-paid job. I hope this gives you some comfort.

It affects everyone differently. I was diagnosed a couple of years ago. It did nearly kill me as it took a while to diagnose and medication was tried and didn't work. I went downhill really quickly and ended up in hospital with septicaemia. Basically fistulas was eating through my insides, opening up my old c-section scar. I was already earmarked for an op but surgeon wouldn't operate because it was likely I wouldn't recover. Once i recovered from septicaemia (took 3 months for me to be fit for op) the surgeon removed all the diseased part in an 8hr op. ended up with a huge open wound where the fistula came through and a ileostomy bag. The wound took a good 2 months to heal and ileostomy was reversed 6 months later. Been hunky dorey ever since, on daily meds though and 6 monthly check ups. Last op was 18 months ago.
I do know which foods are not good for me and I try not to get stressed.
So yes it can be a life limiting illness but once you get the balance right and know your body you can live a normal life. Hope I haven't scared you

My BIL, best friend, cousin and sisters partner all have Crohns. Although it is often not pleasant, it is manageable and not likely to be life limiting. If he gets the diagnosis and is a smoker, he will be heavily encouraged to give up as smoking is the worst thing you can do with Crohns. Daily meds keep it under control and sufferers often find out what can cause flat ups pretty quickly.

BIL can't drink more than 2 pints without spending days in agony but my best friend can drink like a fish and remain unaffected. It's different for every sufferer so please don't worry too much.

I think you are more likely to get bowel cancer, certainly my friends (2) who have UC and Crohn's have been told this.

I think it is very well controlled nowadays so this probably lessens the risk.