So I’m 2 years post take down and go about 10-15x per day- on a good day. I wonder how many times y’all are up at night and if you’re taking anything to slow things down, at night in particular. 

I’m up around 4-5x a night. I have a 9 month old so my last meal is around 7:30/8pm after I and my husband put her down for the night. It’s hard to eat before then. regardless of when I eat my last meal, I’m up around 4-5x a night. I only have to get up once to feed her so getting up more to go to the bathroom is still a big pain! Plus having to stop feeding her sometimes and rush to the bathroom (and that’s pretty rare, I should say) to go, is not super convenient - baby doesn’t understand why I’m stopping mid feeding! But when mama had to go, mama has to go! 

So now I take two immodium before bed and two when I get up for the midnight feeding and that still narrows down my bathroom trips to 2-3. I wonder if this is as good as it gets? Sometimes I just wake up to the gas a rumbling in my stomach. Nice wake up call.  

Is 4 immodium per night too much? My doc says no. I wonder about long term use / years on end. 

Original Post

Bubba, I think you need a diagnosis, unless you already have one. If your pouch was constructed properly it should be working much better than that. In any case, I take Lomotil (usually one, occasionally two) at bedtime only, since that when I most want it to work. That usually gets me through the night, or at least the first 6 hours.

Yeah, like SCOTT;  I take one, maybe two at bedtime, (although Loperamide) depending on consistency of output. 
Very rarely do I wake in the night to use the toilet, although I have tonight.

When I awake in the Mornings; without fail. I take One Loperamide and then intend to take at least another one or two throughout the day, although I often forget.

Consistency of my output often reminds me to take my pills and judge whether I take one or two.

My Bowel Movement are roughly 3 to 4 per day, sometimes 5; if I feel I’m using the toilet more then normal, then I’ll pop another two Loperamide; I never take more than six per day, although more often than not, I tend to forget to take any during the day. 

I had a scope a year after my pouch creation and it looked great. I’m supposed to go again in Feb but maybe I should make an appt earlier. I just thought this was my normalt I guess. That’s why I was posting here- to see if it’s normal. So after two years it should be better?? 

There is no individual standard on Imodium dosage as it’s effects are highly variable with the individual. If you are taking antibiotics it’s already thickening your stools, and antibiotic meds and/or other meds taken with Imodium could heighten it’s thickening and slowing effects. I am highly sensitive to Imodium and more than a couple a day or one at bedtime = CONSTIPATION CITY, which is a place you don’t want to visit.

Bubba, your pouch is not functioning normally. I don’t know whether your solution will be behavioral (to “stretch” the pouch”), medication (sometimes pouchitis isn’t obvious through a scope), or surgical (sometimes a pouch is constructed improperly), but there is likely to be a solution. If I had to guess then a couple of weeks of Cipro might fix you right up, and a strong probiotic (like Visbiome) might help, too.

It took my pouch a long time before it behaved properly for me to get a good nights sleep.  (Unfortunately, years. My kids were little then too.) I finally went to a new GI doctor who prescribed Amitriptyline (Elavil) 50 mg which I take at bedtime with two Lomotil tablets.  Since then, I have been able to sleep through the night most nights or am only up once at night. What a difference it made for me and my family.  (For the record, I'm also on Imuran, Budesonide, and Entyvio.)

At least discuss what is happening with your GI and see if he/she has any recommendations for you.  From experience, I understand how hard it is to be a mom without enough sleep.

Thinking of you!

I could take up to 30 tablets a day and still not get a full nights sleep (believe me a tried!)   My consultant has said different people have different tolerances and it looks like they just don’t work for me, so I have a pouchoscopy in 4 days to try to understand why nothing slows me down and what we can try next - it’s like pot luck sometimes !  

I hope you find your answers x 

My pouch is 18 1/2 months old, I have 3 to 6 bms a day. I was taking 2 lomotil and 2 Imodium at bedtime and then taking 1 lomotil and 1 Imodium in the middle of the night. Lately I stopped eating so many sweets and am now taking 1 lomotil before bed and sometimes one in the middle of the night. I don't take any during the day, but I do use fiber supplements twice a day. Have you tried looking at maybe eliminating certain foods and keeping track of how it effects your output? In my opinion it would be worth your while to give it a try. Let us know how things go.

Aimee

I have thought about tracking my foods. I’ve pretty much eliminated uncooked veggies. I don’t eat predictable dinners. My breakfasts consists of a shake that so can grab and go. I have a sandwich for lunch a snack candy at work- the snacks and candy at work really do me in. I guess I could reel that in. Maybe the sugar is a a problem?

i did count today. Since midnight, it’s now 3pm and I’ve gone to the bathroom 8x. 

I called my doc and he wants me to get a stool sample right away to check for c- diff and pathogens. I’m positive I don’t have cDiff bc I’ve had it before and this is most definitely not c diff. If you e had it before, you know when you do or DO NOT have it, lol. 

As for the stool sample, his office is an hour away- I go to his office as a specialist bc he’s the beaut in CT- i have been to three other docs before him and before my j pouch. He wants to rush the stool sample, but i don’t see why... and in order to do that I have to travel an hour to the lab to get the stuff for the sample, and bring it back tomorrow before my appt, which is another hour away. No way is that convenient! Not to mention we’re supposed to get another 3-5 inches of snow this evening/overnight. So I’m not going to go get the stool sample kit until on my way to the appt- maybe try and give the sample before the appt and give the sample back to the lab on the way home?? Idk why he feels the need to rush it? 

I feel like he’s overreacting? I always fear the worst and it turns out to be nothing but me over analyzing. Then i take a half day of work to drive down to this appt and he says, stool sample is fine, blah blah. Idk. Is it me or would you travel the hour to get the kit tonight, drive the hour in the morning to drop it off (mind you I have a 9 month old who has to go to daycare AND we have a storm coming) and I work at 8am), and then drive back down to the appt another hour for the appt in the afternoon. ? I say just go in the afternoon. I mean what’s he going to tell me anyhow- prob just put me on an antibiotic if anything. Chances are he won’t anyhow. 

I did, but he prefers this one. I got the stuff and was able to give the sample before my appt and dropped the sample off after my appt. it actually worked out better than I thought. 

The doc thinks it’s one of 3 things- pouchitis which he’ll treat with Vanco, inflammation of the rectal area which he’ll treat with cream or suppositories, or inflammation of the upper intestines which need more testing bc that could indicate crohns. He’s pretty sure it’s pouchitis. Gosh I hope it’s not Crohns.

He is able to fit me in for a scope next week, so I’ll figure out where to go from here. 

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