Just as an update I went 16 times yesterday and so far today I've gone 5 times.

I called the doctor and based on my symptoms he's calling in prescriptions for Flagyl and cholestyramine. So hopefully that slows me down some. 

Hello, Mike. It does sound like pouchitis. I know when I have it because of frequency (12 times or more in a 24 hrs period). My doctor gives me repeats on my prescription so I don't have to call the office every time and wait; I just get it refilled at the pharmacy when I know pouchitis is coming on. 

Try using a squirt bottle (Amazon sells them, called personal bidet) and use with very warm water after every BM, especially since you are going so frequently. The stinging you are feeling may be onset of fissures, which develop from frequency or hard stools. You will know if you have fissures from the stinging or a feeling of pushing out pieces of broken glass or razor blades. Very painful. If you develop fissures on the outside or internally, use a sitz bath (also available from Amazon -- this and the squirt bottle could add up to free shipping!). Put the sitz bath it on the toilet, seat up, and fill with hottest water you can tolerate and sit in it for at least 10 minutes. Hot water will bring blood flow to the area and this heals the fissures. It worked for me after one day. I hope you are using a good barrier cream after every BM. I know 14 times is a lot to apply, but try to have a barrier on the skin as often as possible to avoid burn, cracks, and pain. I have found Zincofax, a babies' diaper rash cream, is gentle and heals me in a few hours. If I go every 10 minutes or right away again, I count that as one BM because it was incomplete. Sometimes it just needs time to make an appearance. The pouch isn't sure what to do! If it's one hour or more I count it as separate BMs. When everything is running along smoothly, I am four to five times in a 24 hour period. Potatoes help to thicken stool because Metamucil did nothing for me except turn my BMs orange! 

It sounds like your pouch is active at night because you're eating meals late. My transit time is around six hours so I know I can expect nighttime BM or incontinence if I've eaten a meal after 8pm; I will be awake at 2am. I can have a teaspoon of raw, unpasteurized honey in my tea, but more than that in a dessert will give me an active, sore pouch with frequency and fissures. It's a rough cycle. I avoid citrus fruits or spicy food because it burns on the way out. No nuts or seeds, no raw vegetables or salads; too rough for the pouch, and I am afraid of blockages. Fried foods make bad stools. Be good to your new pouch while it learns how to be a colon! A big job for a small intestine.

Thanks, Winterberry. I have been using a barrier cream, usually Calmoseptine, which I've done pretty well with. I also use the Shield Barrier Cream wipes sometimes. I really liked them right when I got out of the hospital, but then they had the recall, so I had to go without for a while. I think they'll be good to keep a pack or three in my desk when I return to work. I also tried using A&D with zinc for a while in hopes it would be a little cleaner than the Calmoseptine (which I can't seem to use without getting that pinkish color in my underwear) but I didn't like how it was so much thinner. 

I've had good luck with Metamucil, though. For me it seems to do a better job than cholestyramine to bulk things up. It doesn't seem to do much of anything for frequency, though.

Thanks again for all the info!

As a follow-up question: I take VSL #3 DS. I forgot to ask the nurse if I should continue taking it while I'm on the antibiotic. Any input would be appreciated.

Thanks!

VSL works for me while on antibiotics. I space them well apart. 

Hey Mike,

If you are two months post take-down your body is still adjusting I'm sure. My pouch is 6 years old now. It took a full year for me to really get into a routine and understand what my new normal is. I go about 8-10 per day, which includes twice at night, but that's because I don't like holding it too much and I figure keeping things moving is the best way to avoid pouchitis, stagnant bacteria and all. At the same time I beleive you are supposed to stretch your pouch in the beginning and holding it some can do that some, so the reservoir grows . Take it slow. I remember having really bad butt burn and sudden bouts of liquid stool in the beginning. I think that's mainly the body adjusting to the acid output it now needs after your pouch. Your body is adjusting to not having a colon. I think for me the best thing was to get on a schedule and eat about 6 small meals spread out at the same time everyday. I also took Immodium and Metamucil religiously at first. It's still the best thing for me. Glad it's working for you! And Florastor.If I skip my routine I have more frequent movements and incomplete evacuation. I believe pouchitis typically has pain or an aching feeling, sometimes in the joints too, maybe even with mild fever. Barrier creams are also wonderful as folks have mentioned. Which AD do you use? 

-Joe

Thanks, Scott and Joe.

I've wondered if part of the frequency might be that I need to hold it longer. I do remember reading about doing that to stretch the pouch, but I can't say that I've put it into practice. I think coming from UC I'm used to needing to get to the bathroom right away so it's sort of ingrained in me that as soon as I feel something I go. 

I have been taking Kirklands brand anti-diarrheal (is that what you meant by "AD"), but just at night. Maybe I should still be taking it throughout the day at this stage?

Taking Metamucil and now the cholestyramine, things are at least somewhat formed. But often it seems like it's just a little bit that comes out. So I'm also wondering if I'm not emptying completely.

I do understand that I'm still at the beginning and my body needs time to get used to the new plumbing. It's just a little frustrating.  

It can totally be frustrating! Like I said there is a new normal now. I almost rarely have formed or semi-formed movements every time. Some loose stool is a healthy functioning pouch for most of us. I also remember having to readjust to what the pouch just felt like inside compared to my colon. The good news is not being sick with UC anymore! I never have blood now and the urgency is actually gone. I used to rush to bathrooms and have near misses with accidents all the time with UC but with my pouch I can actually hold it for many hours if need be, maybe 6 or 8hrs. So my capacity had stretched a lot.

By the way I meant AD ointment for butt burn, not AD from Kirkland, but I take the same Kirkland generic Immodium. Best deal going! I had some bouts with dehydration after not taking it regularly so my GI instructed me to go back on it. I was so thrilled to be off most meds that I had weaned myself of the Immodium but without a colon water loss and dehydration can be our biggest enemy. I take  Ultima electrolyte powder in my water about twice per day now. Lack of water can actually cause my stools to be more watery and the cycle of dehydration starts. I have eczema and some minor pulmonary disease now and I'm convinced it is partially related to lack of water.

Thanks again, Joe. For butt burn I use Calmoseptine most often and sometimes I use the Shield Barrier Cream washcloths, which I like because they're less messy and seem to do a good job. Since I've been going so much, I've been using the Calmoseptine every time.

I'm going to look up the electrolyte powder you mentioned. I had been wondering about something like that. I've been drinking a lot of Gatorade since I had the first surgery, but I don't like how much sugar I'm drinking that way. 

I saw the doctor today. It was a previously-scheduled post-op appointment, but we spent most of it talking about this stuff and he did a scope. He said there was some inflammation but not much more than what he'd expect to see normally just over two months post-takedown. He didn't call it pouchitis. When I asked he said it was "borderline pouchitis." He did prescribe Cipro to add to the Flagyl to knock out any pouchitis that was there, but he seemed to think it was more a matter of growing pains and the pouch being new. So he also prescribed me Lomotil and told me to use it in tandem with regular Immodium. And we talked about holding it when possible to stretch the pouch. 

He said with the two antibiotics, Immodium, Lomotil and cholestyramine, it should be slowing me down a lot and if I'm not doing better by next week I'm to call them so he can take another look and take some biopsies. Hopefully it doesn't come to that.

I'm supposed to go on a cruise next weekend, so fingers crossed.

Thanks for all the input and advice, everyone! 

Hey Mike,

It sounds like you are on the right track!

That's great news that your GI is trying out the antibiotics for a week and then gonna biopsy. Cipro and Flagyl are heavy hitters in their own right ask drugs. My pouch usually does better on antiobiocs (taken for non UC ailments like strep) but they can have adverse effects on your immune system! Ask your doc about staying on VSL 3 or florasror while on the antibiotics.

Thanks! We did talk about the VSL 3 and he told me to keep taking it and just to take it away from the antibiotic doses as much as possible, like Scott suggested. 

Unrelated to any of this, I also got the all-clear to start exercising again (this was actually my post-op appointment) so that's good. 

Awesome! That's great news about the exercise! You may get more pouch control as your body gets stronger after surgery. I remember being really weak post takedown and then as healthy as I have ever been once fully healed. Even did a sprint triathlon and came in 3rd in my age group (it was a small race, but still).

Def ask about Florastor. I really swear by it. Since it's a probiotic yeast it won't be killed by antiobitoics and it's good for preventing c-diff and other opportunistic bugs.

Enjoy the cruise!

Jersey_Mike posted:

Hi everyone,

I'm a little more than two months passed my takedown surgery (July 21) and I'm wondering if how I feel right now is normal or if it could be pouchitis. I hadn't been keeping track of my bowel movements specifically, but I did note that I was going quite a bit more at night (from like 6 p.m. on). My doctor had said that ideally I'd be going 5-7 times per day and I've seen people here saying 4-6 times per day is "normal." I knew I was going a lot more than that. But I also wondered about some self-inflicted issues, namely that I've been sleeping the entire morning away and then cramming all my eating for the day pretty much between 2 p.m. and 8:30-9 p.m. So I decided to: (1) get up earlier for breakfast so my food intake was more spread out through the day; (2) stop eating by 8 p.m.; and (3) cut out sugary treats (I had noticed some urgency and increased amount after having stuff like that). And I started keeping a log of my food and bathroom trips yesterday.

Yesterday I went 14 times. The night actually seemed a little better than the past few nights (although I didn't have a specific number to go on), but the day seemed worse. So far today I have gone 9 times (it's right around 7 p.m. my time). The last two today were a little unpleasant - stinging as they came out.  

There is some urgency, especially later in the day/evening. The urgency isn't as bad as it was with UC, and I feel like for the most part I could hold it if I had to, it's just not comfortable. I also have numerous cases where I'll go, and it doesn't seem like it's much at all, but I'll feel like I'm done, then I'll have to go again shortly after. So I don't know if's a problem emptying the pouch so I'm breaking up what should be one bathroom trip over 2-3 trips, or what. Today's trips especially have been very loose. I have been taking a scoop of Metamucil once a day to give it more bulk, and I just took today's dose about an hour ago.

I had been taking Immodium at night to help me get through the night without having to get up a bunch of times. I didn't take it yesterday because I was trying to get a good gauge of my number of BMs.

I haven't had any leakage or incontinence. Occasionally I will see a little bit of blood on the toilet paper, usually later in the day (so after I've gone and wiped a bunch of times). By the end of the day/night I usually have some buttburn, but by morning it feels better.

I have an appointment to see my doctor next Thursday, so that's good.

I'm just wondering if anyone with experience can tell me if this sounds like pouchitis? I know everyone heals differently, it just seems like, at least ideally, I'd be doing better by now, a little more than two months into this. 

Thanks for reading,

Mike

I think eating balanced meals, maybe 4 small meals might help you get down to 6-8 a day.