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Hi. My latest in a series of problems is compete loss of major bowel movements 2 to 3 times every night for the last 3 months. I wake feeling gross, having had no sensation of losing stool at all. I am on chronic antibiotic for pouchitis, but the stool is semi soft and looks good. I am not crampy when this happens. My surgeon is arranging a function defecography MRI, but it will be a wait.  I am losing so much sleep every night. 

Does anyone have a solution or suggestions?

Thank you.

Gail

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Gail, this was the thing I found most disturbing when my pouchitis was out of control. You don’t say if you are doing anything besides the antibiotics, but here are some things that sometimes help:

1) Don’t eat for a few hours before going to bed.

2) Take Imodium or Lomotil at bedtime. Try them both to see which one works better.

3) Reduce or stop Lomotil/Imodium except at bedtime. Daytime is when you want the bowel to empty.

4) Try a small, fatty bit of food at bedtime, like a spoonful of peanut butter.

5) I’d usually suggest psyllium with dinner, but it sounds like your consistency is fine.

6) Do a few sets of kegels every day.

7) After my “last” poop of the day I sometimes notice that I might not have emptied fully. If I go back again something like 5-15 minutes later I can more completely empty, and I get a better night’s sleep.

Good luck!

I totally agree to Scott's explanations. I'm still not completely free of leakage at night, but I don't eat for about 5 hours before bedtime and that makes sure that there is only little left in my bowel after going to the toilet before sleep. That way there should be no 'major' bowel movements ideally.

I also take one tablet of loperamide right before sleep (none for the rest of the day).

By the way, do you take those antibiotics at late evening, some hours after the last meal? My impression is that this is effective to kill bacteria over night when there is no fresh supply of food for them any more.

Hi Scott and Steve

I will answer your questions Scott.

1. I eat dinner at 6 and nothing after, except for about 5 jujubes at 9. Oops

2. I do take one Loperamide at 9.

3. I take Loperamide with breakfast, lunch and dinner and will try stopping these as a trial.

4. I like peanut butter and will give up my few candies for some fat.

5. I do use Metamucil with each meal; 1 heaping tsp. That is why I have semisoft stool.

6. I have done kegels for years. I am 65. No help yet. My surgeon just sent a referral for pelvic floor physio, so maybe there will be some help there.

7. I do.go back to try to evacuate again, and usually do pass some stool.

I eat healthy moderate amount of dinner. Usually chicken, 2 or 3 cooked vegetables and either rice, potato or perogies boiled. Maybe a cookie or butter tart and peaches for dessert.

I am good weight at 125 lbs 5'4".  I am just saying that I don't know where all that stool comes from as I am going too often in the day too! 

Steve; If I don't eat for 5 hours before bed, I will be hypoglycemic in the night. I have secondary Addison's.

I will try my antibiotic a couple hours after dinner, as long as it doesn't cause a more empty stomach grief. My stomach is easily inflamed.



Thank you both.

Gail

Hi Scott,

Continue to have huge amounts of stool overnight. (Formed semisoft) Continual with no sensation until the moment the squeeze comes. Wearing a diaper; well 2 overnight. Full and big clean up.

What is interesting to me is that after I eat breakfast and lunch, I have a bowel movement or 2 within 2 to 4 hours. After dinner, I don't go much up until bedtime and I see, even, the next morning "my dinner" ie. carrots etc and that is 14 hours later.  The transit is slow and therefore coming out through the night.

I stopped the Loperamide at mealtimes and take 1 before bed, but I think that pill comes too late following last food by 4 hours and is not getting "in front" of the food.

I am leaking in the day as well and very crampy through the day.

I have run out of thoughts to help myself. I sent another email to my surgeon today. Waiting for functional MRI and pelvic floor physio. May be a while.

I wonder if my secondary Addison's may be part of the problem. I always try to get to lowest dose without cortisol being so low as to cause symptoms. When I am too low, I become weak and there are GI issues.

Sorry for the ramble.

Gail

I’m sorry you’re going through this, Gail. You may get relief if you can work out a strategy that gets your dinner residue out of you before bed. It sounds like your transit time after dinner is much longer than after breakfast or lunch. This would make sense if your dinner were bigger than those meals, with more fat and protein (which slow the gut). I can think of two things worth trying, at least to gain some control over this. I wouldn’t try these things at the same time, even if you elect to combine them later.

1) Try moving your main meal to lunchtime, at least to see what happens. This will feel awkward, but that’s mostly a matter of habit (and partly cultural, if you can’t take a siesta). A small (or even very small) dinner with less fat might either move through by bedtime or fit in your pouch until morning (or a bit of both).

2) Give Lomotil a try at bedtime. For some of us it works better than Imodium, and you can take two if that helps more.

Good luck!

Okay. Thanks Scott for the advice. I will switch to Lomotol to try. The logistics around switching the meal may be more difficult. I know my partner will want his large dinner meal at 6, so I would have to prepare it at noon so I could eat it then and he could microwave his later while I have a lighter lunch type meal at 6. I will discuss.  It makes sense. Habits are hard to change, but if it helps, then great!  This bowel incontinence thing is new. I used to eat exactly the same and get up just once. Never an accident.  I don't know how or why things got so bad.



Thanks Scott.

Gail

There’s another direction you could consider, Gail, which is that your antibiotic may have lost efficacy, and need to be replaced or augmented. After I’d been on Cipro for about 8 years it finally stopped working adequately, and my nights got messy (that was the clearest symptom of treatment failure). I’d tried a variety of other individual antibiotics without success, but it turned out that adding Flagyl to my Cipro regimen worked quite well, and has continued to do so for something like 7 years.

If I ran out of antibiotic combinations that worked I’d be looking at biologic medications next. Some doctors recommend the switch before the antibiotics stop working, since long term antibiotic side effects can be troublesome, but I’ve been inclined to get as much out the antibiotic approach as I can before switching to something with greater uncertainty.

I’m on Cipro 500 mg and Flagyl 250 mg, both at bedtime, spaced well away from my very high probiotic doses. The goal is to find the lowest effective dose for yourself, hopefully without unacceptable side effects. I gradually lowered the dose until symptoms returned, then bumped it back up to the dose that worked for me. This is trickier with two antibiotics, so you need to be methodical.

You haven’t said what antibiotic(s) you are on, and a single antibiotic is preferable if it works for you. So if there are any good candidates that you haven’t tried, now might be a good time.

Great info, as usual from you! I have one other possibility of antibiotic to try. Cefuroxine. I was given it in hospital last January. It was pricey and I have no coverage. I stopped it after a few days as I noticed a couple of hives on my neck.  However, I think I want to try it again. I still have them in the cupboard. I am allergic to Cipro, unfortunately. Bad hives. I have not tried the Augmentin with Flagyl. Both of them kill my stomach and cause headaches as well as pretty wiped out. Flagyl used to work alone, but no more. So, we'll give Ceferoxine a shot. Will let you know how it goes.

The usual dosing of cefuroxime for generic infections is 250-500 mg twice daily. I don’t know how important it is to take twice daily - I used trial & error (actually just trial) to determine that my Cipro and Flagyl work just as well *for my pouchitis* taken once daily, and that makes it much easier to space them away from interacting foods. I have no idea how cefuroxime behaves with long term use, but your doctor probably doesn’t, either, since it’s almost never used that way.

My preference is to always even begin at a low dose. Often, that is because it is a med that I have not taken before, but also because I am sensitive to drugs and seem to get a big hit on a low dose. I weigh 125. Even if I get "cleared up" for a period of time, I will take that. I was initially prescribed it for a one month period twice daily. I'll start tomorrow once a day and see how that goes. I really hate the idea of antibiotics,.but there seems no getting around it.

I met a woman at a canoe race in Ontario (55; from Maine) who had UC and a Jpouch done in Boston 35 years ago. No meds and no problems ever!  How lucky is she!

D you take then you probiotic morning and antibiotic night?

I take the probiotic in yogurt with breakfast and dinner, and the the antibiotics at bedtime.

The advantage to starting at a low dose is that it minimizes the potential for trouble. The disadvantage is that it can take a long time, with many days of treatment to find out if the drug does any good at all.

Conversely, the advantage to starting at a higher dose (intending to drop it) is you may know rather quickly if there’s any point to continuing the medication. You know the disadvantages of the higher dose, of course.

Gail, just another thought: You said that you eat some jujubes at 9 PM. Fruits can stimulate the bowel. I didn't want to mention because you may need them for not getting hypoglycemic. But perhaps you can try something else that is very easily and completely digestible, so it does not bother you at night.

I would prefer to eat fruits in the morning or afternoon.

Have you tried small portions of dextrose against hypoglycemia at night? It is easier digestible than normal double sugar (saccharose) and should be completely absorbed at the beginning of the small intestine. Not as a sweets replacement of course but for 'medical' purposes.

I found zwieback to be compliant for me at late evening, though not as good as fasting.

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