Hey gang, it's me, yet again, bitch bitch bitch! Sorry, but some times I just need to vent, and despite my best efforts to stay healthy, and maintain a positive attitude, my patience is running thin. All my other meds aside (GI isn't the only defect I have, lousy genetics!) I still have to take 6 Px meds to barely keep my gut from totally falling apart. For those of you who've known me since the beginning (I've been on this site since 2000) you'll know I suffer from chronic pouchitis, last year also discovered I have sever gastric reflux disease. This year my pouch is really going wild. Most of the problems are in the lower pouch. Many bleeding ulcers, and the rectal cuff bleeds constantly, and hurts like hell. I'm currently taking Cipro, Flagyl, Nexium, Entocort, Azathioprine (immunosuppressant also use for Chemo, tough drug to take!) and Percocet with Gravol (just so I can eat with puking or pooping shards of glass!). I'm sick of popping pills to live. In total, I take 13 different Px meds every day, for the rest of my life, UNLESS....I'm seeing Dr Zane Cohen here in Toronto to discuss my surgical options. This rotten gut has taken enough from me, but it seems it's the gift that just keeps on giving..or taking!! I've had to give up my passion, cycling, because the rectal pain is just too intense, and my muscles are falling apart (was riding one of my usual 50k rides last July and started leaking, went right through my spandex and down my leg. Thnk god the trails are right beside the lake (Lake Ontario) I jumped in the lake clothes and all, did my best to clean myself off (felt sorry for the fishes!) got back on my bike, and literally cried most of the way home. I haven't been back on my bike since. It's bad enough to go through a toxic mega colon, and colon Ca, but that was in my early 20's. I thought I'd get my pouch and live happily ever after, Not unhappily ever fatter! (thanks to the steroids!). As a result of the bombardment of meds to treat the cancer and colitis those many years ago (just turned 43) I've also developed kidney stones, osteoporosis, arthritis (have had to have rotator cuff decompressions on both shoulders over the past two years, painful surgery!) chronic sever Anxiety disorder (debilitating illness at times!), hypertension, depression, and chronic join pain (from the arthritis). I'm beginning to get really pissed about the entire situation, what's next? I'm afraid to find out! BUT, I'm not stupid, I know I need surgery, been dreading this one though. Pretty sure I'm going to end up with a colostomy bag (gulp!) I was really hoping I could avoid it, but at this point, anything is better then this!! Thanks for letting me vent, feels better to get it off your chest to people who can truly understand how it feels! I'll keep you posted,

Cheers,
Eric

Eric,
I am so sorry that you are living through all of this hell..it is not fair!
First off, an outside bag is not your only option...you are going to see Dr Cohen...he is the Mt Sinai resident expert on K pouches..you do have options here...there is no reason in the world that you should be living on all of that PX crap...if you have chronic pouchitis and cuffitis and any other itis, talk to Dr C and see if he can recreate a pouch for you but a k pouch this time...it will give you back your quality of life to a greater degree...you will be able to bike again (I used to love the Lakeshore blvd trails...I lived at the Pier way back then right on the lake...it was so lovely.)
I am a true believer in Dr C and his miracle hands, if anyone can fix you up and get things working again it is him...
So, please do not dispair...call his office and see if they can get you in for a quick consult...time to get off of the cortisone, pouchitis drugs and get back on your bike.
Sharon

Eric,

You have every right to bitch as much as you want.

I feel for you and hope your medical conditions improve and you get back on that bike too.

Hi Eric - so sorry to hear what you've been going through. What a nightmare. It sounds like you're considering jpouch removal? There are several folks here who are also considering it/making plans. (I may be one of them, depending on how this damn fistula plays out.)

Whatever you choose, I hope you find relief before too long. Let us know what your surgeon thinks. Best wishes --

So sorry. The anxiety will kill you. Seriously I get it. Because its unseen. Like the colon issues too. The unspeakable maladies. SO HARD TO DEAL. But try (please try) not to let it steal life from you.

I run...physical exericise is something good, honorable and important.

Tanya

I think life with a permanent ostomy would be far superior than the life you lead now.

Sue

You have been amazingly upbeat all these years through it all. I'm surprised we don't have pics of you kicking puppies and kittens from the frustration of it all.

I also think life with a permanent ostomy would be way better than what you're going through. And who knows if all your maladies are linked or not. Maybe a permanent ostomy would alleviate some of the other things that are going on.

Maybe one of the k-pouchers can answer this question - is pouchitis still a possibility with the k-pouch? Are you more likely to avoid pouchitis with a brooks ileostomy?

Also contact Big Daddy Bill about k-pouches and JillM about ileostomies.

Two other people who rarely visit here anymore but who are just out there enjoying life: MikeS (k-pouch - he had like 18 surgeries trying to 'fix' his j-pouch) and Preston M (ileostomy - he's doing better than fine).

Constant inflammation can cause all sorts of things. Get your butt into surgery and get back on your bike!

kathy