Just wanting to vent

hello everyone, just wanting let out my anger. Update on myself, dx with mild colitis in oct/07. Since then its gotten a bit worse, but from what i read from others, mine would be mild, but is not mild to me. I know i should be thankful its not that bad yet, but it bothers me alot. The thing that nags at me is that i have not met anyone with ibd, to the point that i feel that there is no ibd in the world. I know you all write about your sufferings, but there is something in me that i want to meet and talk to someone with this disease. In my life i have never heard of this disease and to think back, i have never seen anyone run to washroom or desperately need the bathroom... I know it sounds stupid and it probably is. I live in a small community and have to go out to see a dr( 2 places, one is 1/2 hr to 1 hr drive). Where i get my prescriptions, the pharacist said i am the only one in this area getting the steriod enemas which makes my think what is this. I feel by myself. Please don't get offended by this, its just my stupid vent.

Matty,

I felt exactly the same as you do when I was diagnosed. There wasn't even much on the internet about Crohn's at the time just the ccfa website. Keep in mind that you will come out of the flare up, eventually. Then things will be more normal for you. Now that you have found this website maybe people here can help you even if you are not meeting us face to face.

It is NOT a stupid vent. Have you checked with your doc, local hospital or ccfa website to check for a support group? I was ANTI support group until after my daughter's diagnosis. I went kicking and screaming to the first one and then realized I NEEDED those people. Now we don't have that anymore and I'm relying on this forum but really, I get that you want to see someone. Check into it!!! The support group would give you another outlet.

Hang in there!

Claire's Mom

It is not that there aren't people out there, it's that no one likes to talk about it! Since diagnosis probably 3/4 of the people I work with have said they know someone with an ibd. Or a friend of a friend has it. So there are people out there! The only person I know in real life is a 9 year old boy. His mum said that he felt like the only one in the world, so I have assured her he isn't!

Matty, you may know others with IBD but maybe they are a bit shy to talk about it. Awhile back I was having a rough time, and when one of my co-workers asked what was wrong, I spilled the beans and said I've been having digestive issues and my doctor thinks it might be crohn's. Well, my co-worker came right out and said that he has UC. So now he frequently asks how I'm doing, what meds I'm on, etc. Sometimes you just have to talk with people, you'd be surprised at how many people either have IBD or know someone with IBD.

I agree with all that's been said Matty. After EJ's dx, we discovered that his Project Challenge teacher has crohns and his guitar instructor. I have a co-worker who suffered for years with severe UC until his permanent colostomy. No one knows he has it unless he decides to let them know. The point is they're out there. It's just kept quiet it seems!!

Matty,
Never feel that your venting is stupid or that you suffer so much less than anyone else. Pain is pain. Stub your toe it hurts, break your arm it hurts. You really are not alone. Talk to your doc about it. If your community is really that small perhaps a video chat would do?? I am older and not up on the latest stuff computer wise. You can always vent here or even just put down your thoughts/fears/hopes, etc. I am rather new here but the people that frequent this site are VERY supportive.
Good luck,
Michele

Matty, this place is here for you to have a good old moan, and there's plenty of us who'll join in at the drop of a hat too! And I know what you mean, about feeling like you're alone with this. I felt the same way too, when I was diagnosed, I'd never heard of Crohn's, much less ever known anyone with it, because, as Rebecca85 pointed out, we don't like to talk about it openly. It is a very sensitive subject for most of us, and to talk face to face with someone (especially if they don't have it) about even half the things we go through, would just kill you with embarrassment! But as time went on, when I mentioned Crohn's, people would say to me, 'Oh, such and such' has got that'. And it started to come clear that a fair few people have it, even two people I already knew! Then 2 people who live in my mums road got diagnosed a couple of years ago, and their mum has it too! It sounds strange, but the more people you talk to about it, you needn't go into any embarrassing details, then the more people you discover that also have it