Dear TX......

[IamJane]

HI TX,

Like you, I have found NOTHING that helps. This disease has ruled my life most of my life, and like you, I'm fed up. I've been to many different dr's over the years and have pretty much been told it's in my head........I've even been offered referrals to a shrink!! It's not in my bloody head, it's in my bum!! My record for trips to the toilet is 78 times in a 4 hour period. That's a lot of toilet paper, and one very sore botty. Then I'll get "bogged up" for 4-5 days. It drives me insane that I feel like I'm going to explode, then I sit on the toilet, and the smallest bit comes out......then takes 20 mins to clean it up.

I can't relate mine to stress all the time, as even in stress free times it is bad. It doesn't matter what I eat either. I've tried food elimination to no avail. Basically my GI system has a mind of it's own. I have never belched in my life, and I think that makes it worse. No-one seems to understand. It's affecting my marriage. My husband thinks I'm using my condition as an excuse not to do "married people things". He comes in after work, and says to me..."oh, so your sick again hey?". He has chronic severe eczema, so I thought he would understand what it's like to have a chronic condition. But, I suppose, unless you've suffered severe long term pain, you wouldn't understand.

I don't know what we can do about this TX, but there must be something. I guess we're all just going to have to keep supporting each other, and praying for new treatments. It makes me cranky that I work in an operating theatre with Drs that deal with bowel conditions all the time, yet they can't help people like us. I also get cranky when a patient comes in for a colonoscopy, and they leave with a diagnosis of IBS. I really feel for them. I'd rather be told I had bowel cancer or something coz at least they'd be able to do SOMETHING.

Just once, I'd like to be able to go out to dinner, and not have to worry about my clothes being too tight. It's embarrasing having to sit at the table with everything "hanging out". Then when it's time to leave, I can't get my belt done back up. These days I don't even bother going out for a meal. It's just too hard. I'm dreading the festive season, as none of my family understand why I sit slouched back in the chair, with this huge belly, moaning and groaning after dinner. Being summer here, I can't get away with hiding my belly under big sweaters or anything. I'm 5 feet 6 inches tall and only weigh 109lbs, so my belly becomes very obvious at times.

Oh the pain, the pain of it all.

Keep your chin up, TX......(and a good stock of nice soft toilet paper).

Jane

[TX]

What you wrote mind as well have been one of my thoughts cause I've sure been through the exact same stuff(although I am more like 209lbs!). Anyway, boards like this are nice cause it's one of the few times we don't feel alone.
I am gonna try Katies suggestion with the Colestid. I haven't tried that one. Have you tried it?

[IamJane]

I haven't tried that one either. I just wonder if it's called the same name in Australia. I suppose I could check on the net for the Aussie name if it's different. It wouldn't hurt me to try it either as even though I'm very thin, I have high cholesterol. So possibly I could "kill two birds with the one stone".

Let me know how you get on with it. It is such a wonderful feeling to know that we're not alone. I've always felt I've been alone with this. The amount of patients I look after that get diagnosed with it, I'm tempted to start a suppot group here.

Good Luck,

jane