Accidents while sleeping

Guess I'm not that sound a sleeper.  I always wake up when I need to make a trip to the bathroom.  If I ignore the "signal" I do pay for it by having a leaky experience.  Depending upon what/when I eat and drink prior to going to bed, I'm up once or twice each night.  My pouch is about 12 years old.  Fortunately, I can go right back to sleep.

I usually wake up but have had a few accidents.  Is this the first time you've ever had biopsies?  Do you think that you've had pouchitis for a long time?  Hopefully the antibiotics are working and your pain is better.  

 

My husband  had his prostate removed, because he had cancer, and has been doing kegel exercises to train whatever sphincter muscle he has left to do more. He's not happy that he still needs to wear depends when he leaves the house but he has gained back a lot of control.  I'm wondering if you can do pelvic floor therapy to help you gain better control.  I think that involves more than kegels and a good Physical Therapist might be able to help you. Maybe someone else knows. I feel for you needing to go to ER.  I've had to do that.  

Well I woke up at 2:30AM with bowel movement everywhere. I don't drink or do drugs, I eat a good diet with lots of fiber. I'm starting the kegal exercises but the spinchter muscle that acts as the last trap door is the one that isn't working. I can get to the bathroom during the day but its at night when I have no control. 

Sorry you're having such difficulty!  I'd recommend you set an alarm (timer on cell phone works great) for every 2 hours and hopefully by emptying more often you can avoid leakage and get back to sleep. I know it's wearing to have such interrupted sleep, but I found it better than cleaning up a mess, and after a bit, if I kept lights low, I was able to get back to sleep quickly. I take 2  Lomotil before bed, and try to eat dinner earlier. I am finding a bowl of rice pudding around 9:00 at night helps bind me and I am now sleeping thru the night, or at least 6 hours- I still set timer for 4 hours, but generally turn it off if I don't feel pressure like I have to go. It's important to fully empty before bed, if you can. I am almost 11 months post take down, and have just gotten to the point of sleeping thru the night. I have cuffitis, though, not pouchitis,  but still suffer from high frequency of BMs.

One more thing that has helped me is to apply Ilex paste at anal opening. Seems to work like a plug- sounds crazy, but I can hold my stool so much longer when using Ilex than when I just use Calmoseptine or Vaseline. Also keeps skin intact!  Use it every day when leave for work and reapply during day. Good luck! Laurie

I want to thank everyone who has responded to my question. 

I work for a medical device company and we cover all areas but GI.

Its nice to have someplace that people can relate to each other and help give ideas of what has worked for them.

I will be seeing a colectoral surgeon to see if my sphincter muscle can be repaired through surgery. Until then I hope to find a doctor that could give me the opiate tincture.

Thank you all!!!!!!!!

A few thoughts. You say you eat a lot of fiber. Maybe too much? Also, a fatty snack at bedtime can help slow the gut while you sleep. Do you take loperamide (Imodium)? It is known to improve sphincter tone; too much for some people!

 

Of course, I presume you are on antibiotics for the pouchitis.

 

I don't know if theaee ideas will help you, but I thought I'd throw them out there.

 

Jan

Until the problem is brought under control, I would recommend using the Depends absorbent underwear.  They come in different sizes for men and women.  This will prevent the scenario where you are having to wash your bedsheets every day.  I have used these underwear when my pouchitis flares and I have nighttime incontinence.  They are actually pretty comfortable and the absorbency is such that you can have serious leakage and not really feel that they are wet.  Then you simply throw the underwear away in the morning.  Your bedsheets are unscathed and remain clean.

I always have accidents.  Well over a year after surgery.  I think I will always have them.  I just leak.  I have some days I don't.  But I think I am one of the ones who has them all the time.  Not really accidents.... Just get squished out with movement... Bending over... Getting out of a chair... Picking something up... I just figure that's the way it will be.  So I have settled with it. 
I had a scope the other day and nothing is wrong.  She suggested I get a illeo but I would just rather deal with the probs I have.  Illeos have probs too.  Thinking about having a BCIR done.  But with my luck that won't work either.  Ya... I know... I sound depressed.  I'm not.  I just think I should have kept my colon.  It had probs but I just swapped some problems for other problems..... Surgeon.... Who did the Scope.... Said she would not do exploitory surgery to see what the problem is unless I agreed to the bag if she found nothing.  She could not go very far with the scope because I was not cleaned out enough... I followed instructions.  But I think the problem is above the Pouch where my Illeo was.  Oh well.... Rock and a hard place I am stuck.
Richard.

try  to get lomotil  i take 2 a day  n  went from 20 bms a day to 5  still have accidents mostly  if cough or sneeze   try to always eat  starch with your evening meal  ie potatoes  pasta rice to  bulk you up

 

Tried it.  Long time ago.  I have no problem firming things up with just what I eat.  I don't think it's a firming my stool up problem.  It just leaks firm or loose.

First off that sucks, sorry to hear that. My question is why is your muscle not working in the first place? was it damaged in surgery? how would you know if it's a surgical fix or conditioning fix? hang tight.

Richard, I know how you must feel.  I'm back to Mayo Monday morning for a pouch scope and the next day another gross GI Pouchogram (X-rays with contrast)..  I think my problem is above or at the top of my j-pouch. Last July's GI Pouchogram's findings were "large ileal pouch/anal anastomosis with a mildly dilated pre-pouch ileum......pouch chronic inflammation...".  My large pouch also leans right.  That is close to my stoma's scarring/adhesions.  I don't have the leakage problems like you do, just pain that gets worse as the day progresses. I've been treating the chronic pouchitis with rotating antibiotics ever since July. They have either quit working &/or something else has happened. My Internist doesn't think the pain source is from pouchitis and I agree with her.  I'm thankful that she has many IBD patients and understands my pain.  She's temporarily increased my pain medication and since that slows down my GI system I've been on a soft food diet, etc.  

    

I my 4 years since take down I've been on Loperamide (Imodium) off and on, metamucil off and on, VSL#3DS probiotics, antibiotics and changed my diet several times - etc.  A change in my antidepressant to Amitriptyline firmed up my stool allowing me to quit taking loperamide and so forth.  Things changed as my pouch matured and many things worked and didn't work along this journey.   I'd like everyone to consider trying something that hasn't worked in the past again. I've been adjusting many variables along this journey while trying to attain the right mix to optimal j-pouch function.  I've dealt with c.diff infections, chronic cuffitis, recurring pouchitis and IPS. I don't know what is going on now but I do know that I am in better shape than would be if I hadn't had the surgery.  

 

Life is good when we have choices between several good options - such as receiving multiple job offers.  Unfortunately, like you all, I had to choose between unfavorable options and there are no do overs.

I have the pain thing too... Weird.  Most days as time goes by my gut starts killing me.  I cannot get home fast enough after work to stretch out which relieves the pain.  I drive a forklift all day so I am in a seated position most of the day and bouncing around.  Hurts like h  e double toothpicks.  But she is gonna take me off pain meds.  That is gonna be bad if I don't have something for it.

I have had my j-pouch for 10 years now, I always have accidents at night. Fortunatley i have figured if I don't eat after a certain time I seem to wake up and be able to make it to the bathroom. I don't have any control when I sleep. Being a 16 year old and having accidents at night isn't The most glamorous thing but then it's not at any age. I just take it day by day and tell myself that I can handle this Because I have been through so much already. I hope this helps😊

Alexis, I'll repeat what I've said before: Since I've started opium tincture before bed, I am sleeping 7-8 hours without a problem.  J-pouch 7 years and very few nights without having to get up, or worse, not getting up and having a mess, before the tincture.  Some doctors are reluctant to prescribe because it's a narcotic, I guess.  Are you taking imodium? That can help. Codeine can also help. I took Tylenol #3 (with codeine) for years which helped cut down the number of times I had to get up.

I had a biopsy on my J-Pouch in October, it showed severe pouchitis and 1 of my sphincter muscles not working. I was desperate last night and tried the lomatil as directed 2 pills everytime I have a loose stool and it only caused stomach pain and I was up all night. When I take 5mg Vicodin this doesn't happen, my GI Doctor will not prescribe this to me. He'd rather give me an ileostomy.

How about Tylenol #3 (acetaminophen/codeine). Would your Dr. prescribe that? It helped me though not as much as the opium tincture. I had no withdrawal symptoms from it.

My Internist handles my pain management because she sees me at least 4 times a year.  My GI at the Mayo Clinic knows I take Norco and we've discussed that it is helping me in 2 ways, with pain and firmer stools.  My surgeon knows I take it too.  He asked me who was handling my pain management.  He's the type that does the surgery and hands his patients back to their GI.

 

I've taken loperamide, generic Imodium, and think the prescription is better than the over the counter because it is powder in a gel cap versus a solid little Imodium pill.  It seems to work closer to the time I take it than Imodium did.  The main time for me was right before bed.

 

It isn't working for you and to suggest you have a major operation when a small dose of a narcotic works sounds like crazy logic to me.  It's hard to change doctors, especially when you've had one a long time but in this case I'd see another GI and work it out with her/him if you need to go to someone else, like your PCP, for the prescriptions.  The new laws require more from prescribing doctors and some have just quit prescribing narcotics to anyone. I think the prescribing doctor needs to see the patient every 3 months or so.  The only change that happened with me is I have to physically pick up a prescription with an original prescribers signature monthly. 

 

I believe Jan Dollar takes one prescription narcotic pill daily and she's had her j-pouch for decades. 

 

P.S. Tylenol #3, Vicodin and Norco all contain the same ingredients but vary on how strong the hydrocodone and tylenol's content is.

I do not have the problem every night. I have had my pouch since 1990. When I do it is usually caused by pouch itus. In my experiences there are those who have it often and some who rarely do. My Dad was real tall and barely had enough to build and connect his pouch and had hards times holding it so since I was25 when I was diagnosed my fear of that made me force myself to hold it long as I could until I got to where I could control. When night accidents start I call GI he calls in Flagyl but now on VSL#3 and it helps tremendously in calming gut.

Lomotil is great help. I'm prescribed 2 4x day as needed. Some days only need 6 and some I need 8