anyone with Crohn's disease?

[wrybosome]

Or have someone close who has it?

My stepdaughter was tentatively diagnosed with it yesterday after a full day in the ER, CAT scan, etc. We're awaiting endoscopy for a more definitive diagnosis.

What's it done to your quality of life? How well do the meds work? What's your experience been?

Little scared here...

Thanks,

Tim

 

[Spady]

Sorry to hear about that. You can never be 100% sure of a Crohn's diagnosis without endoscopy, but if your doctor thinks that is what it is, it probably is Crohn's.
As far as quality of life, efficacy of meds, etc, the answer is unfortunately the same with lots of diseases = it depends. There is, of course, a spectrum of severity regarding the disease so it is difficult for anyone other than your gastroenterologist to answer.

There is a cool website for the Crohn's & Colitis Foundation Of America.
CCFA.org: Home

Hope that helps. Good luck.

 

[wrybosome]

Yes, that's what the GI doc told me this morning. Some patients go years without flare ups, others are sicker. Thanks for the link.

 

[wrybosome]

I'm sure she has been suffering, without knowing why.

It turns out she was, and for several months without saying anything to us about it. She thought it was bad gas pains.

Yes, there are challenges in living with this condition. But you learn to do just that, live with it. I'm working full time and am a diver, so the world is still my oyster. Just a more complicated one. Without a doubt, the biggest challenge I face is in the workplace and keeping my health insurance.

Thanks, although this will involve a change of career plans for her...the last person who asked her what she wanted to be got the answer 'bohemian vagabond'. I didn't check but I don't think that carries medical coverage.

The CCFA is a great website! I would encourage you to be careful with what you read outside of legitimate entities like this.

I'll check that out next, I've been reading the Mayo clinic's page on it.

Thanks again Lulubelle!

 

[LIVES4SHARKS]

CCFA.org: About Crohn's Disease
Crohn's disease support group - Inspire

I would recommend the following sites. The CCFA is where you will find very indepth information on the disease and it's treatments. The Inspire is support group community where you can talk with other people with the disease. Chrohn's is a manageable disease but it does lead to surgery eventually, with removal of the diseased portion of the small bowel. I work in Radiology and patients with Chrohn's disease are routinely xrayed in fluoroscopy and Cat Scan.

Carolyn:shark2:

 

[fppf]

The most important thing once it is confirmed is to get a GOOD G.I. doc. You want someone that is proactive and get involved in the treatment. Crohn's is one of those issues you want to stay on top of and don't let it get away. The drugs and treatments are much much better then 30 years ago. It is not that bad of a thing to live with as long as its in control. But it is one of those things that is really hard to get back in check once it goes crazy. We think it is greatly influenced by stress as well. The more positive and less stress in your life the less your imune system kicks up. It also helps keep your GI functioning smoothly.

With the drugs though come side effects. Make sure to ask questions and understand the possible issues of each drug. While some are good, other can have side effects worse then the crohns. There are lots of good web sites and most times you can find the information on all the studies for a drug and read up on it.

Last, this may sound wrong, but be wary of "support" groups. We went to a few meetings of different groups in our local area. They where anything but support, we found them very depressing. In the end its best to talk with family and friends that have a positive attitude. This is not a life ender, just a life adjustment.