Does your Crohn's change over the years?

   Hello to all. I had a follow up appontment with my DOC yesterday. He says I'm doing pretty well. Just to stay on the maintenance meds for now. Also gave me a script for some Hydrocortisone Suppositories which I hope will help.

   Anyway, I was talking with him about a long term outlook. He told me in most cases, "what you get is what you stay with".

   Is this usually true for most of you? Does Crohns tend to get better or worse through the years, or does it usually stay the same?

   I have read in many articles that auto-immune diseases tend to die off with age. Anyone have any input?

   Thanks.

Hi, at 12 yrs old was the worst time for me pain wise while waiting to get a diagnoses. At 26 i had to have a resection of the colon i was fortunate to get 15 yrs of remmision from it where i had no symptoms whatsoever and was on no meds (I even doubted wheather i had crohns)then this time around sept 08 I got a fistula along with cramping whch turned out to be strictures in the small bowel,(I may have even got a longer remmision if i had stayed on meds!) now i feel how i did when i had my last remmission. (the only reminder at the moment is having this temp stoma)And this time i will be staying on the MEDS!!!! Bev x

For me, what I got wasn't what I stayed with. An intially extremely mild case (about as mild as it could get without actually being asymptomatic) has turned into something considerably more annoying over the past five years. Mind, I couldn't tolerate any of the 5-ASA drugs and pred did nothing except at the maximum dosage. I therefore went without taking anything for years; perhaps if I'd been able to follow a maintenance regime my Crohn's would have remained mild.

My early understanding of Crohn's was that it's a "relapsing-remitting" disorder. And it is that, in fact. What it took me until a few months ago to finally learn, however, is that it also very often a progressive disease. That is, it can simmer away on the back boiler for months/years/decades on end until something goes wrong and you're in hospital with an obstruction, fistula, or some other complication.

An unlucky minority get severe, attacking disease from the start. They're the ones who get complications from the beginning and require surgery after surgery. Another, more fortunate, minority have mild, stable disease which doesn't really get any worse. (I don't know what it would be like for that group, however, if they never took any medication.) For the majority of people with Crohn's, however, they either go through alternating periods of flare ups and remissions, or else they don't have remissions as such but their disease bubbles away in the background with symptoms of varying severity.

The most important thing is, though: if the meds are working, keep on taking them! They don't make the underlying disease go away, but they can keep it in check, which is important for a disease which can slowly get worse with time. Also, if you stop taking your meds, you don't know when the symptoms will come back. It could be the next day, it could be in 20 years' time. There's a very small chance it could even be never. But if the symptoms do come back, then the course they take will be unpredictable.

Edit: Bah, the link isn't working. Can't see what's wrong with it, so maybe HW just doesn't like the URL for some reason :/ ... I can see what it's doing now. Inserting <b> tags for some unknown reason. Oh bah, I just give up with it for now :/

Post Edited (NiceCupOfTea) : 1/26/2010 3:37:28 PM (GMT-7)