To Debbie re: pouchitis

[Guest guest]

Debbie

I don't write often but your story is so similar to mine. Imodium,

Flagl, Cipro and pain with no relief. I've had my pouch for two years

now and the last 6 mos have been the worst. My surgeon did a

sigmoidoscopy and biopsy to check for crohns or returning UC on the

small bit of colon that is left when they create the pouch. I have

neither. If it had been the UC he said they give you a Rowassa

suppository to help. If it is inflammation that nothing else is

touching, they can use a steroid enema. he assured me the steroids do

not go thru out the body as they do when taken orally. I was not keen

on any of those choices but given the alternative of nothing else

working....

Then he suggested , as he said, something way off label. Another of

his pts with the same problem had started on Prilosec for acid reflux

and coincidentally his pouchitis seemed to clear up. He suggested I

try it for a month to see. He feels this is a rather benign med and

shouldn't cause harm if it turned out not to work. Well, I've been on

it two weeks now and life is very good. Within 3 days the pain was

gone and after a week, stools were " pouch-normal " . Of course I

continue to follow all my other regimens. Plenty of water and

Powerade, small meals, lots of rest. I take probioitics, fish oil,

Urso and a vitamin.The Imodium I only take as needed and that is down

to once a day. The hard part is no coffee, chocolate(cheat on this one

now and then),and low fat diet.

Good luck to you. Check with your doc if you want to try the

Prilosec. For me, so far so good. I had not intended to write about

this until I had been on it longer to be sure the placebo effect was

not what was making me so well. But it s hard to hear about your

suffering and not tell you, esp. when I have been so recently in your

shoes.

Anita Slone, WI

PSC, J-Pouch

[Guest guest]

The prilosec idea sounds like it really might be worth a shot for me.

I don't have terrible pouchitis right now but often have cramping and

diahrhea. Thanks,

Jarad

>

> Debbie

>

> I don't write often but your story is so similar to mine. Imodium,

> Flagl, Cipro and pain with no relief. I've had my pouch for two

years

> now and the last 6 mos have been the worst. My surgeon did a

> sigmoidoscopy and biopsy to check for crohns or returning UC on

the

> small bit of colon that is left when they create the pouch. I have

> neither. If it had been the UC he said they give you a Rowassa

> suppository to help. If it is inflammation that nothing else is

> touching, they can use a steroid enema. he assured me the steroids

do

> not go thru out the body as they do when taken orally. I was not

keen

> on any of those choices but given the alternative of nothing else

> working....

>

> Then he suggested , as he said, something way off label. Another

of

> his pts with the same problem had started on Prilosec for acid

reflux

> and coincidentally his pouchitis seemed to clear up. He suggested

I

> try it for a month to see. He feels this is a rather benign med

and

> shouldn't cause harm if it turned out not to work. Well, I've been

on

> it two weeks now and life is very good. Within 3 days the pain was

> gone and after a week, stools were " pouch-normal " . Of course I

> continue to follow all my other regimens. Plenty of water and

> Powerade, small meals, lots of rest. I take probioitics, fish oil,

> Urso and a vitamin.The Imodium I only take as needed and that is

down

> to once a day. The hard part is no coffee, chocolate(cheat on this

one

> now and then),and low fat diet.

>

> Good luck to you. Check with your doc if you want to try the

> Prilosec. For me, so far so good. I had not intended to write

about

> this until I had been on it longer to be sure the placebo effect

was

> not what was making me so well. But it s hard to hear about your

> suffering and not tell you, esp. when I have been so recently in

your

> shoes.

>

> Anita Slone, WI

> PSC, J-Pouch

>

[Guest guest]

Thanks for the suggestions. I'm just so weary of dealing with the

same symptoms year after year. I had a capsule camera exam two years

ago and was so hopeful they'd find the source of the continuous

bleeding, but the test was " inconclusive " . Anyway, I do suspect it's

my pouch that's the problem because my excretions are more often

streaked with blood as opposed to mixed in. From experience, I'd

know if I were dealing with fissures and there's no evidence of

that.

I do have a prescription for mesalamine enemas, so while I'm still on

holiday break, I'll focus on trying those. It's so incredibly

difficult to use them twice daily when I work 50 hours a week in a

high-stress environment, and have very little bowel control to start

with. And even though it's lock breaking into Fort Knox to get to

see my hepatologist off-schedule, I'll call his office on Monday to

see what I can do. I'll also call my family doctor; at least he can

run the blood work for me to see if I need another transfusion or if

I'm once again suffering from dehydration. He also indicated he was

concerned about my heart - I tire extremely easily and am often short

of breath.

New Years Resolution - I need to be more pro-active if I'm want to

succeed in this battle! Thanks again for the support!

Debbie in Seattle