New here..and glad to have found you. I've never had pouchitis diagnosed before, although have had short periods of symptoms like I'm about to describe. They have cleared after a few days, but this time it's lasting longer.
Has anyone ever experienced going back and forth from watery stool to feeling inflamed, sluggish, and even constipated with pouchitis? I've flipped between the two for 2 weeks now. When it started I felt inflamed and when I went to the bathroom there was a little blood (not the typical for me). When I'm on the constipated end, it almost seems as if my peristalsis has stopped and it takes much effort to even try to empty the pouch into the toilet (and I'm not really able to). My gut gets uncomfortable and I stop taking any meds to slow the frequency because I feel so stopped up. The pouch feels inflamed, but with the rest of the gut stopped up, it feels like it could be inflamed too...but I'm not sure. I always have gas when I go to the bathroom but with this I have a big increase in gas build up (gurgling and crazy loud like there's a monster in there) which gets trapped and can't get out because it's so hard to expel anything. (I should clarify that I don't have pain and it does not feel like an obstruction, which I've had multiple times but not in 9 years,...it just feels like really bad constipation.) When I flip to the other side my stool can be thin as water, frequency goes way up, I've had 2 episodes of night time incontinence (pretty uncommon for me), my stool can smell like ammonia (the smell flashes me back to my childhood in the beauty salon and the smells of women getting perms in their hair), and it can be frothy. For 2 nights I had what I call "acid-ass", with a lot of burning on my skin.
I'm highly functional usually. Nobody would guess that I have no large intestine and only 10% of my small intestine. I work and am active, hiking 1-4 miles/day. Lately though, I have less energy when I walk, so I am doing much more gentle, short, flat walks (if any), which have been cut short by a gurgling tummy, leakage, fear of skin breakdown, and need to get back to the toilet to relieve gas and empty the darn pouch.
Either way, I'm hesitant to eat which is not so great for me due to short bowel syndrome (SBS) and the good risk of malnutrition.
A thousand thank you's for any input!! I'm in a situation where I need to be well educated in order to share info with my doc as there aren't many who are well educated with j-pouches and SBS in my location. I've been reading a lot about pouchitis and everything sounds like it fits what I've read but the sluggish/constipation aspect.
Has anyone ever experienced going back and forth from watery stool to feeling inflamed, sluggish, and even constipated with pouchitis? I've flipped between the two for 2 weeks now. When it started I felt inflamed and when I went to the bathroom there was a little blood (not the typical for me). When I'm on the constipated end, it almost seems as if my peristalsis has stopped and it takes much effort to even try to empty the pouch into the toilet (and I'm not really able to). My gut gets uncomfortable and I stop taking any meds to slow the frequency because I feel so stopped up. The pouch feels inflamed, but with the rest of the gut stopped up, it feels like it could be inflamed too...but I'm not sure. I always have gas when I go to the bathroom but with this I have a big increase in gas build up (gurgling and crazy loud like there's a monster in there) which gets trapped and can't get out because it's so hard to expel anything. (I should clarify that I don't have pain and it does not feel like an obstruction, which I've had multiple times but not in 9 years,...it just feels like really bad constipation.) When I flip to the other side my stool can be thin as water, frequency goes way up, I've had 2 episodes of night time incontinence (pretty uncommon for me), my stool can smell like ammonia (the smell flashes me back to my childhood in the beauty salon and the smells of women getting perms in their hair), and it can be frothy. For 2 nights I had what I call "acid-ass", with a lot of burning on my skin.
I'm highly functional usually. Nobody would guess that I have no large intestine and only 10% of my small intestine. I work and am active, hiking 1-4 miles/day. Lately though, I have less energy when I walk, so I am doing much more gentle, short, flat walks (if any), which have been cut short by a gurgling tummy, leakage, fear of skin breakdown, and need to get back to the toilet to relieve gas and empty the darn pouch.
Either way, I'm hesitant to eat which is not so great for me due to short bowel syndrome (SBS) and the good risk of malnutrition.
A thousand thank you's for any input!! I'm in a situation where I need to be well educated in order to share info with my doc as there aren't many who are well educated with j-pouches and SBS in my location. I've been reading a lot about pouchitis and everything sounds like it fits what I've read but the sluggish/constipation aspect.