Long time sufferer, first time poster!

Hi,

I've had Crohn's/Colitis since I was about 4 years old. (I'm 27 now) I started off with Colitis, went into remission when I was 12, came out at 19 with Crohns. Well, that's what I always understood. I was reading my medical records the other day, and it seems like I might have had Crohns since the get-go. It definitely shaped my life--I can't remember a time when I wasn't going to the doctor. HOWEVER, I think catching it early was a good thing--I'm in a pretty good place right now. (mostly)

I actually had a question, about other people's experiences. I have been in remission for a couple years now (still have to go for a stupid colonoscopy. I HATE THEM) and take really good care of myself. I'm actually really open about having the disease, because I want to make it less taboo, and less "ewwww, gross"--because those of us with Crohn's don't get the luxury of having a whole lot of privacy. It's hard when you're trying to vent to your friends--or tell them how scared you were after an episode. In order to explain, you have to talk about things that aren't "talked about". And your friends don't mind trying to comfort you, but don't want to hear all of it, and you kinda feel guilty for grossing them out. (or I do, at least)

Anyway, even in remission, it is still like playing Russian Roulette every time I have a meal. That's the thing I still don't understand about the disease. Do other people in remission experience this? Right now, except for the episodes (I get a few a month, give or take--not fun, but not severe) I'm great. Based on my colon, my doctor says if she didn't know I had Crohn's, she wouldn't guess I had Crohn's. Is it because, even though I don't have the ulcers/bleeding, my immune system is still attacking food as an invading disease? That's how this condition was explained to me when I was young, and no doctor had contradicted it so far. (My mum AND my aunt are nurses, and have always been great about explaining this)

Anyway, I know I rambled quite a bit--it's nice to talk to others with the disease. I had a really bad episode yesterday--I haven't had one that bad in a long while--and I was terrified. I hate this disease and wish they could find a cure. Thanks for reading!

Hi, just wanted welcome you to the forum. Where is your CD located? Have you had any imaging such as MRI, CT or MRE etc to determine if there is activity further up in the small bowel?

There are sure to be other forum members by shortly that can give you their experiences. I do hope you are able to find some answers soon.

Hi thomkath, and welcome. I know that I don't have a lot of the typical symptoms that other Crohn's patients have - my current doc has even said he doubts my original diagnosis because of it. I don't get diarrhea hardly at all, or much for bleeding. I mostly have problems with trigger foods. If I am very careful about what I eat, I usually feel pretty good. I'm not sure about the immune system/food thing honestly. I used to be able to eat just about anything and do okay with it, but after I triggered a flare I've had to eliminate pretty much everything.

Thanks for the reply, Cindy! Nothing has been said to me about me being misdiagnosed--however, I have other issues as well that are technically unrelated to Crohn's, but they all sort of blend together to make my life suck sometimes, so who knows what's causing what!

Everything I read indicates that everyone experiences Crohn's differently. Like I said--I'm in a really good place right now--I have a couple minor issues a month...except for days like Saturday, where I had the worst flare up I've had in a long time, which I'm still recovering from, which really terrified me.

Hi and welcome.
Your story caught my eye. My little girl is four and has colitis. She much like you never remembers life without docs involved. To her it's natural to call medical professionals your friends. lol

Also the statement of your body "attacking food".
Did your mom or anyone use the words Eosinophlic Disease or eosinophila?


I hope you feel welcomed and find support and answers here.

This is purely me guessing, so it could be completely wrong, but I think our digestive systems go through so much during flares that there's going to be some damage which remains even in remission. As far as I know, there can be problems such as scarring which are permanent. I've wondered if there are also more minor types of damage that doctors and tests aren't able to detect. I've read quite a few posts here of people experiencing symptoms when in remission, or when their test results are normal.