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I have been pretty fortunate with my JPouch over the last 20 years.  Short of the minor bouts of pouchitis which have always cleared up with a 2 week course of Cipro, I've had no problems.  Recently, I was having frequent night-time accidents, which was always my tell-tale sign of pouchitis.  I called my Doc, got a script for Cipro as always.  I've been taking it for 30 days now and I'm still having night-time accidents. 

 

I feel I know my body pretty well and I don't think this is pouchitits.  I don't have the daytime diarrhea, urgency to go, bloating, increased frequency in BM's, etc. that normally comes with pouchitis.  The biggest problem I feel is that I don't think I'm completely emptying when I go.  I usually have this symptom with pouchitis but it was always accompanied by the other symptoms.  My stool is not watery but a good consistency.

 

I've seen on here that others have had issues with a septum or some other structural problem with the pouch.  I'm wondering if this may be the case with me.  Any advise, suggestions?  How could I all of the sudden have a structural change in my pouch after 20 years?  Maybe its just a mild case of pouchitis that can be fixed if I switch to Flagyl (which I've never used for treatment)?

 

I think this site is great and I've lurked on here for quite sometime but decided to join officially today to seek some help.  Thank you all.

 

 

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I have the same problem.
I've had mine only 17 months. 
Nothing is wrong.
Just will not empty.  Never did.  Takes me a couple and more  trips then I get on with my day.  It's just the way it is.
Had all tests done.. Even scoped.  Nothing.
I hope you find a simple solution seeing how you had it so long and working properly.
Good luck to you.
Richard.
Mysticobra
Incomplete evacuation is a symptom of pouchitis. I did have a septum develop in my pouch in the late 1990s and it produced a completely different sensation of the stool hitting a wall. I knew there was a physical problem there was no guessing. This was later confirmed and the issue was resolved surgically with a revision of the J pouch.

It also could be a stricture as previously suggested.

If the usual pouchitis treatments don't work you should probably see your surgeon.
CTBarrister

Mike-

To answer your question on my septum removal surgeries:

1. Done as outpatient procedures at Mount Sinai Medical Center by Dr. Steven Gorfine

2. General anesthesia.

3. No abdominal cutting- they go in through the rectum so there is no scar externally

 

Both surgeries were successful, but the septum recurred 2 years after the first surgery.  The second surgery, in 2000, seems to have permanently resolved the issue.

CTBarrister
Last edited by CTBarrister

I talked to my Dr. yesterday and described to him what was going on.  He first suggested continuing Cipro for 2 weeks with VSL #3.  I had never taken VSL #3 but have read a lot of good things about it.  I was leary of continuing the Cipro since 30 days of it didn't fully resolve the issue whereas my normal bouts were resolved in 10-14 days.  I asked him about Flagyl and he jumped at it thinking it was a good idea to try that for 3 weeks.  250mg 3x/day and still do the VSL. 

 

Before we got off the phone, I asked about possibilities of stricture or septum.  He didn't think this was likely since my last scope (November 2013) didn't show any signs of this.  Albeit 18 months ago, I wasn't going to argue whether such issues can occur within that time period.

 

Took first 2 doses of the Flagyl yesterday and felt improvement already.  No accident last night!  More gas now though but seems having it helps me empty a little better.  The VSL will be avail at the Pharm today but insurance doesn't cover it.  I'm going with it anyway.  Hope this all works but leary I would need to stay on the VSL indefinitely considering its cost.  Also, not too happy about no alcohol with the Flagyl but I'll take the good with the bad considering this may work. 

M

Mike,

 

Not to embolden you to reckless behavior, but I have mixed flagyl and alcohol with no issues and gotten away with it but the drinking occurred between early morning and late night dosages.  This happened at a bar during the Montreal Jazz Festival a few years ago.  I had intended to only have one drink but there were some guys from Toronto who started talking baseball with me and then started buying me drinks and more drinks and I couldn't say no and the next thing you know I was completely smashed drunk.  Which was OK because I wasn't driving and had a short walk back to my hotel.  I described all of this to my Doctor and he told me not to do it again.  But how do you say no when guys are buying you $10 mixed drinks? Answer is you don't.

 

I also thought the septum is less likely and pouchitis more likely from your description of your symptoms.  If incomplete evacuation improves when you start taking flagyl it's verified that pouchitis is the cause.  With a septum you would feel stool hitting a wall - it is a totally different and unmistakeable sensation.

CTBarrister
Last edited by CTBarrister

CT - Thanks.  I did run across your story you posted elsewhere and I'd probably do the same.  I've seen mixed answers about it in general and I understand having a drink will be a personal risk and that everyone might not be affected.  I usually like a craft beer or two especially on the weekends.  I'm kind of torn on what I'm going to do.  If I end up vomiting, etc. I can deal with it and learn my lesson to not mix them.  I'm just afraid it might end up being something more serious when I read about possible low blood pressure, rapid heart rate, etc..  I'll update with what I do and what happens.

M

The alcohol/Flagyl reaction is poorly documented, but since Flagyl is chemically similar to Antabuse, there is an abundance of caution. I initially refrained from alcohol when I was first prescribed Flagyl, but when I was taking it more often and for longer periods, I became less compliant. After reading some of the literature, I decided to experiment. First with a small glass of wine, then a full glass, then cocktails. There was no reaction for me, even shortly after taking a Flagyl dose. I have my liver enzymes checked every three months and they are fine, actually, better than a decade ago.

 

I imagine that just like any other side effect, it is individual. If you do choose to experiment, do it at home with small quantities at first. There have been some here who reported reactions from mild nausea to projectile vomiting. Of course, there are also those who get severe nausea with Flagyl use without alcohol consumption.

 

Jan

Jan Dollar

 

Hi Mike 13,....read your post with great interest as since I had a spell of tummy flu/gastroenteritis in January I have not been able to 'go' properly.   Urghhh, I find it so frustrating, I feel so bloated and 'dry'.    I am so used to being more the opposite....... this drives me mad.    I know I need to go but it 'stays up there'.     In the end, the only thing that really does the trick is flat coca-cola, then it's a lovely relief.

Are these the feelings/symptoms that others have with Pouchiytis.    I am asking because although I have had my pouch for 14 years I have never known such feelings of dehydration.   Don't think it can be this 'cos I take a sachet of dioralyte (electrolytes) everyday.         

I'll never complain of being loose again 'cos it's far better than this.    I take 1x codeine phosphate/day, no other drugs.  I am lost and flipin' fed-up with it.

Thanks and so grateful for ANY  suggestions.

Mike, sorry, I don't mean to pinch your post, sorry, Megan from Lincoln, UK.

Megan Taylor

Megan,

No need to apologize for contributing to a post I started.  That is what this group and forum is for after all.  I too can learn from you. 

 

That said, I've never had pouchitis present itself to me with the symptoms you describe.   With pouchitis, I've always had increased urgency, bloating, and feeling of not completely emptying.  Big difference is my pouchitis was always loose, never had "dryness".  It was always resolved with 2 week course of Cipro.  This bout was different but I seem to have it under control now with a change in antibiotic.  Everyone is different.  Have you ever had pouchitis and if so, how was it normally treated?

 

Something else I think I noticed was with this recent bout, which lasted about 6 weeks before I decided to seek help, I had the feeling of not emptying and was straining/pushing myself to go.  I think since it was going on for so long, its like I forgot "how" to go, which is to relax and just let it happen.  The past few days, I am almost re-learning this.  Silly to think after 20 years of "knowing how to go" I can forget and change my ways in such a short period of time.

 

I've never heard of having flat cola to help with relief but again, everyone is different.  I also never took codeine phosphate but understanding its somewhat of a sedative and anti-diarrheal, it is probably not helping your issue and may be partly the cause of it.  

 

Hope I am able to help in some way and if not, I know there is a community here full of helpful j-pouchers that will guide you thru this.  Good Luck!

M

Megan-

Echoing what Mike wrote, that codeine sounds like it may be part or all of your problem. Is there any reason you're still taking it? If stopping the codeine doesn't fix you up, you might want to get a pouchoscopy to see if you've developed a stricture.

 

As far as hydration goes, the amount you're drinking doesn't help figure out if you're dehydrated or not. If your urine is dark or very dark then (unless it's occasional) you need more hydration, one way or the other. If your urine is light-colored then you're almost certainly well hydrated.

 

Good luck!

Scott F

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