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please help: back and forth from watery to constipation with pouchitis??

nikikinikikiMember
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.
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R RocketMember
Nikiki,

It sure sounds like Pouchitis to me. I just got over mine which last for about 3 months but did not go to the doctor right away because I wasn't sure and hoped it would work itself out. I know all to well about the Gas build up and how frustrating it is when you are unable to pass gas. For me that is the worst part. I try hard to force it out but nothing happens except the more I push to be relieved, the more my butt burns and I can hardly walk like a normal person. The only time I get relief is when I am asleep.

I would make an appt with your GI ASAP to get some meds. Don't wait too long like I did because the inflamtion will get worse. By that I mean when the doctor scoped me, he hardly put it in maybe an inch or so and said that it was the worst he has seen it in me. Why did you wait so long?

Anyway, you have to eat and make sure you drink plenty of water. I would eat like a healthy drink that had some calories like Whey protein. Some drink Ensure. On this site, I was told to drink hot liquids like soup so you get some protein from chicken or beef. That advice was very helpful to me.

I hope you feel better very soon.

Rocket
nikikinikikiMember
Rocket,
Thanks so much for the response. I've done exactly what you recommended and have been drinking whey protein smoothies loaded with nutrition. I also started more probiotics and started drinking a little aloe vera juice daily. I purchased some tea too, a "relaxing blend" from an herbalist, that is supposed to relax the gut and decrease inflammation. Whether it's the tea or the heat, I'm not sure, but it seems to help. I'm not sure if any of what I did is responsible, but the rest of my small intestine feels better now, except for the pouch itself still feels inflamed.

Since I have short bowel syndrome (SBS) with my J-pouch, I've made an appointment with a GI SBS specialist at Stanford and am flying out in a week to see him. It's not been easy to find someone who knows much about SBS. I've also found someone I can drive 1 1/2-2 hours to see in Seattle that knows more about the J-pouch than docs where I live. I've got an appointment to meet him soon after I return from Stanford. For 9 years now, every time I've tried to see a GI doc they have said something like "I don't know what to do with you, you look great, most folks dont live through the surgery that you went through." That's great, but it hasn't helped me manage my condition. I kind of gave up looking. It wasn't until I found this board that I was re-energized to start looking again, reading about others experiences and the need for better medical support than I've had. Knock on wood, I've done pretty well without for so long.

I LOVE where I live and my husband and I are very happy to think we'd put our long term roots down here. I've got a great job that offers me an easy pace that supports my health. It's amazingly beautiful with the mountains, islands, and sea. But, based on the last two weeks and some of what I've read on this board, I'm wondering if we should move closer to medical care from docs/surgeons that know my condition more. I guess that wouldn't be for the occasional pouchitis (which I could easily drive to see a doc in Seattle), but more so for more immediate surgical needs.

I'm so grateful to have stumbled upon this discussion group.

Thanks again.
A APMember
I'm sorry you are struggling. I had exactly what you described from the second I had my takedown surgery. I would get pouchitis and then take antibiotics and recover, next would come the constipation and then the pouchitis again. It was a cycle. I have been pretty much free of the pouchitis for the past two and half months, so I am happy. I found that the most important thing to stay healthy is taking psyllium fiber. I buy organic loose fiber and mix it with water. I am very consistent and take it at least four times per day. This was the first thing that I believe has lead to health for my pouch. It keeps me going to bathroom and emptying my pouch which I believe in turn keeps the bacteria from causing the pouchitis. I also take vsl#3DS, but have found that I have to balance this. I take it for a while and if things start flaring, I get off of it for awhile and things settle down until they don't and then I start it up again. It seems to work. The last thing I have found is taking chewable omega 3 supplements as well as chewable vitamin D supplements. I know this is a lot and it seems that everyone is different, but if I were to recommend one thing, it would be the fiber. And the fiber one, etc. didn't work for me. Only the loose stuff mixed with water. Make sure you are drinking a lot too. Sorry this is long. Hope it helps! I know I was sooooo discouraged, but now with almost three healthy months behind me...there is hope!
R RocketMember
Nikiki,

Please understand that what works for one person may not work for someone else. So I am happy for AP that she can handle fiber as part of the diet, but not all of us can.

For me, I am on a low residue diet and I can't get near anything with fiber. Fiber would give me severe cramps in my gut. Its not so cut and dry when you have pouchitis. You have to experiment how your body reacts to certain foods by keeping a log.

Probiotics on this site seem to be very helpful to many of us. Again, even with this, one brand may work on one person but not on another.

Rocket
A APMember
Rocket is right. What works is so individual to each person. I just wanted to offer what worked best for me because I found it through this site. I just kept trying the different things that people recommended until I found what works best for me. And that thing is definitely fiber and fluids. The constipation is the thing that was a red flag and made me respond. I figured out that not going was most likely causing the pouchitis for me and that this type of fiber keeps me going. My doctor kept telling me that I couldn't be constipated without a colon, but I know when I'm not going to the bathroom! All you can do is try until something works for you. Best of luck and just know that there are people out there that have struggled and found solutions. Hope is good.
nikikinikikiMember
Hi AP and Rocket,
Thanks to both of you for your input, and for the reminder be cautious. I do consider that what works for someone else may or may not work for me, and the need to be careful when adding something new. I so appreciate everyone sharing. It has been a great benefit to me to read everyones ideas and experience, and to read that other people are familiar with so many of the things that I've gone through for so long but had no one else to compare notes with...and are so willing to talk so openly about them (think butt burn, leakage, monstrous gas and on and on...things most folks don't have in the way we do...and aren't so publicly talked about with the general population) If something doesn't work for me, it may work for the next person who finds this post in the future. For now, I feel a ton better, although my pouch still feels a bit inflamed. I'm so happy to be flying out to Stanford tomorrow night, to see a short bowel specialist who is familiar with J-poucher's on Monday.

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