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9 replies

Pouchitis, cuffitis, bloody mess??? What the heck?

Clever1Clever1Member

Hi guys and gals. I haven't been on in a while.

I find myself with some weirdness that not sure what it is and or what to do about it.

 

I lost track of the time frame but I had pouch construction with side order of mucosectomy.

I also had many complications and it took a long time from all of that to really get back to health. I'm basically over due to have take down done. I'm pretty scared to have it done honestly. Everything I've had done seems to have gone wrong one way or another.

 

Anyway on to the weirdness. Normally I get very little pain/soreness in my bum area. 

I get some clear/watery maybe a little pink discharge as well. No leakage during day to day or even sleeping.

 

However, and this is not the first time this is happening but I get these bouts of real soreness inside my bum, feels like I have a finger covered in sandpaper stuck inside.

and I get very bloody (bright red) messy discharge when I sit on the bowl. I've been waking up with this mess in my draws too. I sleep pretty deep and don't feel anything until I check.

I'm very active so when I'm on my feet moving around a lot, the junk squeaks out sometimes. 

 

What is this? anyone know? it does clear up and go away but it makes me nervous that it could be something bad. I keep thinking that my UC is coming back? could that happen in the area where they did the mucosectomy?

Could my UC have turned into Crohn's?

I asked my GI doc. he says no.(FYI I don't always believe doctors)

Also makes me worry more about how will I manage if this is happening now without even being connected yet? 

 

I'll add this because I think it plays a roll personally. To back up in time (feeling fine) I was going through a stressful time with a girl and relationship type stuff. I was constantly thinking and stressing out about it, I was really upset and still am, but not nearly as bad. I think that could have triggered this episode. I don't place blame or anything but I do think stress like that effects me in a negative way.

 

Thanks for reading and your help.

Alan

 

Last edited by Clever1
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DJ HDJ HMember

I can really relate to your post! I've been told a few times now that I might have Crohn's, but I think I officially ruled that out with my trips to Mayo Clinic.

 

I get the bleeding and pain sometimes too. For me, it is due to a few things: chronic pouchitis (with sores that bleed), some active UC in the rectum, and/or cuffitis. In addition, I have hemorrhoids in there too that can rear their ugly head from time to time (sorry, that sounded bad).

 

I can tell the difference from pouch blood Vs cuff/rectum/opening blood now as I've been at this for 20 years.

 

The pain comes from open sores in the rectum for me - it can hurt real bad. I do not get pain from the pouch itself, even when pouchitis is more severe. I do have bleeding form the pouch though, confirmed by the Dr's at Mayo.

 

I'm still trying to catalog all the different triggers. For me, many are food related. But I do think excess stress can cause me problems too.

 

I've been wearing Depends (or the wal-mart version) for years now since I got tired of nighttime leakage. Even though I don't have accidents every night, the peace of mind wearing them is worth it to me.

 

Sorry, not much in the way of help, other than to say there are other of us on here that can relate to your issues. Good luck in figuring it out.

 

 

Clever1Clever1Member

A little update:

Since my post, I had felt like things were on a slight upswing.

I went to my GI doctor who basically admits that he's a bit out of his element with me.

Which I know anyway but I was thinking that I wanted to try an antibiotic and had probably waited way longer then I should have. As per usual. So I got a script for Cipro.

Quite literally within two days the bleeding all but stopped. I felt a little better etc.

So I was happy that something was working.

 

Question for you all, My doctor brought up a concern, saying seeing as though I was not "connected" he wasn't so sure the antibiotic would reach where it needed to.

Any thoughts on that?

 

Now this is about two weeks later and still no blood but I am still passing much more liquid type stuff out my bum. That's not exactly the norm. I'm hoping that just a matter of time before that slows down. I just makes me wonder as to the cause of this in the first place.

 

So for right now I'm doing pretty well. Thanks for reading

Alan

Jan DollarJan DollarModerator, RN, retired

Cipro is a systemic antibiotic, not topical, so it would work whether you are connected or not. However, if you develop new GI symptoms while taking it, keep a high suspicion of C. difficile. Watery stool should not be a big concern though, as diarrhea can be a typical side effect. 

 

The passage of more stool probably has more to do with what may be going on with your ostomy than anything else. Maybe some swelling near the stoma or something.

 

Just keep an eye on things.

 

Jan

Last edited by Jan Dollar
Clever1Clever1Member

Follow up questions, (antibiotics)

How offten is too offten? 

As I stated quickly after I got on Cipro I started to improve for the issues stated above.
I was on that 9/14/15 for 10 days.

Not long after that I had a bad tooth infection that I got a Z-Pack script for on 10/7/15 that also helped the tooth issue.

But now it's 12/01/15 and I still am getting much more then normal discarge out my bottom. No real pain maybe a little sorness, but normally I feel nothing down there.
So I feel like there is still something brewing.

Do I request more antibiotics? or keep riding it out?
What's considered bad as far as time lines and being on antibiotics?
Thanks gang.

Scott FScott FMember

The story makes me think of possible diversion pouchitis, which would (happily) clear up upon reconnection.  The fecal stream helps facilitate pouch health.

As far as "bad" antibiotic timelines, that may not be the best way to think about about it. The right amount/duration of antibiotic is the smallest amount required to enable you to be comfortable and function well. In my case it seems to be "forever," but most people do great with less antibiotic.

Clever1Clever1Member
Scott F posted:

The story makes me think of possible diversion pouchitis, which would (happily) clear up upon reconnection.  The fecal stream helps facilitate pouch health.

As far as "bad" antibiotic timelines, that may not be the best way to think about about it. The right amount/duration of antibiotic is the smallest amount required to enable you to be comfortable and function well. In my case it seems to be "forever," but most people do great with less antibiotic.

What is diversion pouchitis? never heard of that before.
And isn't it bad to be on antibiotics so freqently? it makes your body less able to fight off other possible issues in the future does it not?

Scott FScott FMember

Diversion pouchitis is pouchitis in a pouch from which the fecal stream has been diverted into an ileostomy. It's ironically caused by the lack of "nourishment" of the pouch mucosa by the fecal stream. It does not predict trouble after takedown.

It's always better to be on fewer medications, all things being equal. It's also always better not to feel ill. So I choose antibiotics over feeling crappy. Some choose otherwise.

Frequent or prolonged antibiotic use carries two negatives: 1) side effects, and 2) the potential for some bacteria to become resistant to those antibiotics over time. Not everyone gets significant side effects (I don't seem to). As far as antibiotic resistance, it does not make your body less able to do anything in the future. If you get an infection, the antibiotics you've been on for an extended period might not be good choices to try to fight it off (since the infection could be resistant to them), but other antibiotics will work just fine.

Scott FScott FMember

Pouchitis is most commonly treated with either Cipro or Flagyl. People vary in whether one or the other is more effective and/or causes more side effects. There are a number of other antibiotics that are used, including Levaquin (like Cipro), Tindamax, Xifaxan (expensive!) and a few others. If you can find several that work for you, rotating them every 2-3 weeks is a fine idea, to try to prevent any one of them from losing efficacy.

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