Hi everyone,

I have to admit, i cried my eyes out today, which is really unusual for me, because i'm really scared. I've had diarreah for about a month and tried cipro and flagyl, now i'm off meds and taking vsl#3.

My immodium has slowed down things, but i found a little blood in my stools now and i've never had that since before my surgery in year 2000.

I'm so depressed i might be entering something chronic. Should i stay off meds right now and see if pouchitis goes away without meds?

Or should i call my doc tomorrow and tell him i want to start flagyl?

Does pouchitis sometimes go away without meds?

thanks,

Tyler

Hi Tyler,

Please go and see your doctor if only to put your mind at rest. I have heard losts of reference to blood being a sign of cuffitis which can be easily controlled if this is the case but the only way to find out what is causing the bleeding is to get scoped.

I would just continue with the vsl#3 for now until at least until you have spoken to your doctor. Most of all try not to worry (yeah I know... easier said than done!)

Let us know what your doctor says.

Take care

Shell

Yes, as Shell says, don't panic. If the small remaining rectal cuff is inflamed it typically causes bleeding like you describe. Although I believe it sometimes responds to flagyl, it's normally treated in a different way to pouchitis. You definitely need to go back to your doctor.

thanks for the support...

but i also had serious fatigue, and leg pain, which i've never had....

It sounds like all the signs of pouchitis, but i did get a scope just last friday...He said the scope showed "maybe" low grade pouchitis, but he said nothing was raging bad up there...That's why he said stay off meds for 2 weeks and see if you balance out normally.

I agreed with his decision, but this weekend, right after the scope, i got really worse. The leg pagin, a tiny bit of blood in stool and on toilet paper a couple of times, and serious fatigue.

I've had diarreah for about a month so i'm not sure if the fatigue is from the diarreah. Immodium has slowed things down a little and stopped nocturnal incontinence....

thanks for the replies, I haven't been this afraid since year 2000, but i'm trying to stay positive.

talk to you soon,

Tyler

Actually, a little bit of blood occasionally could just be normal. Things bleed easily. If it doesn't continue then it was just something that happened. I think a doctor can pretty easily tell if it's cuffitis by digital examination because the texture of the cuff changes (I think this is correct).

The leg pain should be mentioned to your doctor. I wouldn't think the meds you were on would cause symptoms after you've discontinued them, but you might want to run it by your doctor.

No panicking yet.....

kathy

Could be cuffitis, but is it also fairly common to have some bleeding following a scope. If the bleeding continues more than a few days, call the doctor.

And yes, cuffitis can be felt by a digital exam. Just because you went for years without bleeding, it does not mean you cannot develop cuffitis at any time. The symptoms are similar to pouchitis, only with bleeding.

Jan

thank you everyone...I don't know what i would do without your support throughout the past 8 years.

I just had a scope Friday...would my Doc have seen cuffitis on a scope?

My stools are still extremely loose/diarreah even though they've slowed down some with Immodium throughout the day.

Of course i've lost a lot of weight, which is disturbing because a lot of people have commented on it...

I haven't noticed any blood so far today...

I just don't know what to do besides wait and see if my stools get better? I just had a scope on Friday and he said he wants to wait 2 weeks with no meds. He said my stomach flora still might have to balance out on its own...

I may ask to get a stool test tomorrow to see if it's a bacterial infection.

This is really frustrating because i don't know what the hell is going on...and i can't add weight and just feel generally tight/bad in the gut area.



thanks,

Plus, don't forget you have been in South America recently. Even with antibiotics, I would still put a high level of suspicion on that.

If you had cuff inflammation, he may have seen it, or not, depending on how good he is. A flare can be stimulated by scoping.

Jan

yes, i'll keep you all posted about what happens tomorrow...

thanks!!

You do definitely need to have the leg pain checked out. I've never heard of leg pain as a symptom of pouchitis although if things are flaring up it may be you're suffering from inflammation in your joints.

As for the fatigue, check you're not deydrated because that could be responsible, at least in part. It may be worth getting some specific diarrhea rehydration product (you can get one called Dioralyte in the UK). If you're not using it already, immodium might help too.

Just gave stool samples so they can test for bacteria infection....

I called my Gastro and told the nurse i've seen a little blood in stools since the weekend...I also asked him to consider Cuffitis....

We'll see what happens...i'm really fatigued today...

I would get fatigue and aches with cuffitis.

Jan

Jan,

what was your cure for Cuffitis again?

Cipro only? how long? what dosage? thanks a lot...

Canasa suppositories (mesalamine) for a couple of months, then I overlapped with Azulfidine orally and stopped the suppositories after a few more weeks. It's not a cure, but maintenance. Cuffitis is a return of UC to the cuff.

I only take antibiotics on rare occasions when I get pouchitis over and above the cuffitis.

Jan

thanks Jan....I mentioned cuffitis to the nurse and she said probably not because he would have seen it since he also looked for hemerroids. Plus when i had my surgery, they removed the layer of skin on the rectum that can sometimes get inflamed or get cancer later on in life...i forget what they call the layer of skin there.

present condition: angry and tired....

my stomach hurts some last few days....may be the vsl#3 3 times a day....or maybe something stomach related and not just my lower tract.

still a little blood in the stool every time.

Doc says still no reason to see him again...says wait at least 2 weeks with no meds.

tomorrow getting blood work done and electrolytes tested.

One positive....my last stool was a little thicker. Less watery and my stool is much darker in color now, which i think is positive.

More gas is coming out now when i have BMs. That could be a sign of health? or just a sign of VSL#3?

i haven't smoked in a long time(at least 2 years)...Last couple of days i've had a couple of cigarettes because at this point i don't really give a damn...

thanks,