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Hi All - been a while since I've been here, but so glad this community still exists for those who need it!

I've come to the only place where I can post this sort of thing!  Long and short of it - been 10-14 days of annoying symptoms (inflammation, inability to fully empty, feeling stomach-achy, etc) that I'm all too that familiar with, but hasn't plagued me in a while.  This sort of thing usually passes for me.  I usually blame it on poor motility and work on that.

This time around, I've experienced two night "episodes" !!  One was a full blown emergency, the other more of a 'leak'.'  This has been the past two nights, did not wake up for either.  This has never happened to me in my ~ 20 yrs with J-pouch.  Thoughts / advice??  Hoping it has to do more with the other symptoms and less with the age (and possible weakening of muscle).

Waiting to hear back from GI as well.

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Thanks for your reply!  I have had bouts of pouchitis on/off through the years.  Sometimes clearing itself, sometimes with ABs.  I just never was in a position where I wasn't wakening during the night if I had to use the bathroom.  This is alarmingly new.

My last scope was August 2022 (cuffitis at that time), so yes, it might be time! 

KennyJG44
@KennyJG44 posted:

Thanks for your reply!  I have had bouts of pouchitis on/off through the years.  Sometimes clearing itself, sometimes with ABs.  I just never was in a position where I wasn't wakening during the night if I had to use the bathroom.  This is alarmingly new.

My last scope was August 2022 (cuffitis at that time), so yes, it might be time!

Your welcome, any time. Maybe your body is responding to the pouchitis differently. I hope the doctor calls soon. He may want you to come in to get you scheduled for a pouchoscopy so he can look inside and see what is going on.

Hopefully the doctor will  today, please update me on what he says. Definitely mention a redo pouchoscopy  since you had cuffitis last time. Did they ever give you treatment for you cuffitis???

FM

Hey Scott - hope all is well!

Your remarks are right on point.  My GI is out of the office until 8/14.  I don't really have a relationship with the rest of the office as I've only been seen 1x (2 yrs back).  I have some extra Flagyl here that I was considering starting while I wait.

Start it? Wait it out?  See another dr?

KennyJG44
@KennyJG44 posted:

I don't have one

I generally don't drink enough water, but I guess enough to keep myself hydrated enough.

I think drinking more water will help with the whole inability to empty thing, that has helped me a lot. Drinking water before, during, and after every meal.

Definitely still talk to doc about pouchitis symptoms and suggest a pouchoscopy.

Hope this helps, please update us

FM

I agree with Lauren about the water.  It helps move things along.  I also use a non-soluble fiber (psyllium mostly, but sometimes flax meal, sometimes slippery elm) powder to either add to meals or mix with water before meals.  It seems to help the integrity of the small intestine and has stopped the intestinal kinks/blockages that were increasing in frequency before I started doing that.  And even when trying to thicken up the stool, lots of water is still required. 

SM
@Sara Marie posted:

I agree with Lauren about the water.  It helps move things along.  I also use a non-soluble fiber (psyllium mostly, but sometimes flax meal, sometimes slippery elm) powder to either add to meals or mix with water before meals.  It seems to help the integrity of the small intestine and has stopped the intestinal kinks/blockages that were increasing in frequency before I started doing that.  And even when trying to thicken up the stool, lots of water is still required.

Right on point Sara Marie!!!

FM

I've always been hesitant to try any fiber agents - just really worrisome regarding causing any blockages, etc.  I have been prone, mostly, to low motility, which causes a sort of constipation (and then SIBO).  I have been handling that well.  What would (either) fiber do?  And, what is the difference?

Scott, to answer your other question, I do have a bounty of Flagyl here, more than enough for a 2 week course.  I'm thinking of starting it and making an appt for 8/14 (2 weeks away).  Seem reasonable?  Or should I get someone at the dr office to sign off on taking the meds?  I think that we are all pretty well versed in our bodies and pouches by now that we kind of know what's needed...

KennyJG44
@KennyJG44 posted:

I've always been hesitant to try any fiber agents - just really worrisome regarding causing any blockages, etc.  I have been prone, mostly, to low motility, which causes a sort of constipation (and then SIBO).  I have been handling that well.  What would (either) fiber do?  And, what is the difference?

This makes total sense!  You know your body. After all, you live in it, and if it doesn't feel right, that's probably the best guide! From what I have read on the all-knowing internet (haha), soluble fiber (like psyllium) is more of a gut regulator than anything else.  It can help with movement that is too fast OR too slow, but the slower you are, the more water you would want to take with it.  I didn't take it for years because I thought it was only for constipation.  It has helped my guts a lot, so I like to share that with people, but my guts, since takedown, have always had fast motility, and my bowel obstructions were from the guts flopping around and tying themselves in a knot around the adhesion where the ostomy used to be, not from stuff stuck in the intestine, so slowing down my too fast guts helped stop that from happening. (did anyone enjoy that endless, run-on sentence?) I hypothesize that, with lots of water, these fibers would speed up your too slow guts?  Every once in a while I'll eat too much soluble fiber and my guts slow down too much because the output is too thick. My system is not accustomed to that at all!  I just have to drink a bunch more water when that happens.

I don't know what to tell you about the difference between the effects of the different types of fiber.  Flax meal has all those omega 3s and tastes more like food.  And slippery elm seems a lot like psyllium, except it is harder to grow and less sustainable, so I don't use it much.

But all this is moot if your body is saying no to it. The body knows a lot and the intellect keeps us from listening.

SM
Last edited by Sara Marie

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