You're only 2 days into using the pouch fully! (I assume you had a loop ileostomy before this?) It's very early days.

I'm 24 and have had my pouch ~3 years. It will get better. If anything, you're doing better than I was so shortly after surgery. I started just going to the loo whenever I felt the urge, and slowly building up the time trying to hold it gradually. Night leakage is pretty normal. Trying to empty the pouch before bed is worth a try (don't strain! Tucking in the tummy also helps to push things out), as well as not eating after 6 pm or so.

It also depends on what you eat as well, which you will come to learn for yourself as time goes on i.e. what food slows you down, speeds you up, bulks, etc. It's different for everyone. Your body has got to just get used to the new arrangement.

I do still get some leakage at night now, though it's nothing major. Often I think its just a bit of stuff that follows when passing wind in my sleep. Occasionally if I continue to snack after dinner or don't time my loperamide right then sometimes it is as if I just go to the toilet whilst asleep.

Hope that helps!

Thank you! yes i got my surgery and reversal of my iliostomy on the 7th i started going to the bathroom that day. it's great while i'm awake! i don't experience any leakages and i can hold it until i'm ready to get up to go. it's just during the night when i'm asleep that i have accidents  thank you for your reply! i really hope it doesn't last forever. i also can't eat yet so maybe it'll be better when my still is more solid

Surgeons have different preferences about basic interventions (like bowel slowers and soluble fiber) so soon after surgery. I was sent home from the hospital with immediate access to Lomotil and Metamucil. Fifteen years later I still take one Lomotil at bedtime, which makes my nights more secure, and I still use psyllium fiber twice daily.

It's very, very early in the process for you, but it might be worth asking your surgeon if Lomotil or Imodium at bedtime would be okay. Good luck!

Thank you so much! 

This is so normal! It sounds like you're doing amazingly. Everyone's recovery is different. I struggled a bit with continence at night to begin with - for me it was a couple of years. It's not so much that I was passing stools, but I would pass wind in the night which would be a little bit... wet. Sorry! Over time I learned not to eat after, say, 9pm at night, and to make sure my pouch was completely empty just before going to bed. And if I felt the urge in the night then never to risk hanging on. Over time I guess my sphincter muscles trained themselves until it was no longer a problem.

Thank you for the reply! and that makes me feel better, thankcyou. I am so discouraged right now because i keep having accidents at night (in still in the hospital and still not on food though) but it's every time i wake up so like every hour. it's basically just water too since i don't have any food in my system but still. it makes me so sad. that's the one thing i didn't want to happen and it's happening. now i'm wondering if i should've kept my colon :/ I'm really hoping continence gets better over time like you say. i don't want to be a 20 year old in diapers 

If it's just water, then it sounds totally normal. I used Immodium a bit at the time if I was having a bad run of night-time leaks, and I did sometimes wear a pad in my underwear to begin with til my body got the hang of it. It's nothing to be ashamed of! You've been through major surgery, after a major illness, and you're body is allowed to take time to adapt. Have faith in yourself! It will get better, and you'll look back and wonder why you ever hesitated. We're all rooting for you, good luck x

Yeah, I agree, it'll get better.

After my takedown, whilst in hospital I had pads to insert into my boxers to wear at night, I had accidents, just as you've described, especially during my sleep.

I was encouraged by my surgeon to return to a normal diet as soon possible, as doing so should help thickens output and reduce the slimmy muscus which leaks out, especially during sleep.

Once I retuned home, I continued to wear the pads during my sleep until I felt confident to sleep without.

I still experience issues/heavy leakage during the day though, which certainly isn't pleasant.

I take one imodium just before bed and if BMs have been more liquidy than normal throughout the day; I'll take two.

I am 17 and entering college,  welcome new jpoucher! 

Ahh, I remember having that too, passing water and stool in the night. I'm about 8 months post op and I don't have it all anymore...it's been months. It is very hard to stay patient but hang in there! I think by week 6 I didn't pass hardly anything. I think too, as others have said that you might just pass a little bit of stuff but for me that has gotten better as well! This forum great, I hope you can find help and support here!

thank you all! it has gotten better. i'm still in the hospital but hopefully get to go home tomorrow. my butt burn is soooo bad though. does that ever go away?

I think butt burn does go away because I don't get butt burn that often anymore. I have found that rubbing conditioner on my bottom helps with butt burn. I'm only 7 months post takedown, so I'm still learning. It will get better though.

thank you, i really hope so! I just want to have fun in college again

I want to go to college so bad but I'm too sick to go. I used to think it wasn't going to get better and in a way I had given up. Then one day recently it got better. I don't get butt burn as much and I can hold my poop for hours. Though sometimes holding it in makes me have really painful cramps. If you ever need anything you can always talk to me.

thank you! and that's so sad are you going to get to go now?

Calmoseptine helps with butt burn. I'm never without it. I also have installed a bidet. That might be overkill for you; I was 30 when I lost my colon. 

Ray c

Haven't been on for a long time but reading your comment about buttburn brought back some very unpleasant memories! As I remember mine lasted about 6 weeks. Although most used calmoseptine I only used Vaseline. For me it worked great in fact I still use it on rare occasions when I get a bit of burn it seems to solve it for me in no time! Hope this is useful to you.

thank you all! it is reassuring to know that it gets better. today is day 7 with my j pouch! and i'm not going to lie... i'm a little discouraged. my pouch seems to hurt as it stretches. hopefully that will go away. also my accidents have gotten a lot less frequent in the night but i don't want any and really hope they eventually go away completely 

My J pouch surgery was in 1988/9! I had a lot of leakage and butt burn for the first few month. Night leakage was bad in the early months too. After all this time I still have days when I wish I had not had the surgery - but these are rare. I have learned what foods set my pouch "off". I like these foods so accept that if I eat them I am going to have a difficult 24 hours - the price I pay for a favorite meal!

I do still get some leakage at night and urgency during the day. I just accept it. I am alive and without the surgery - which was still very new in 1988/9 - I would not be here.  

Hang in, it WILL get better.

Wareagle, I don't know when I'll be able to go to college. I do hope it will be soon but just have to wait and see. Even though it's gotten better, I still feel crappy majority of the time. It's probably best I figure out what's causing me to stay sick before going back to school.

Aussie1, I try to avoid the foods that will cause me problems but sometimes I just can't resist. When that happens, I end up miserable, so that's why I'm much more careful about what I eat and drink. 

I'm 8 years out with my pouch and long past most of the problems you are experiencing. I still have to watch what I eat. (The most common food I have issues with is Pizza. Doesn't mean I don't eat it I just don't eat it too often). It's important to learn what foods affect you and how and learn how to deal with them. I hate totally avoiding something but I have learned for me really spicy hot foods will give me but burn so I either avoid or eat only a little. (Believe me memories of butt burn help focus one's attention even years later!)

The advice you've gotten so far seems to be pretty good. It takes time. It's important to try different solutions to your issues - bounce them off your doctor. I have found generally they don't have all the answers as it doesn't seem to be a one size fits all situation but generally they are supportive and can offer guidance.

Over the years I have used pepto bismal tablets, Lomotil and Imodium at various times and all have helped. For me the one thing I learned was that "less was more". Although one can take up to 8 tablets a day (as per the instructions) I found that taking only 2 worked better for me. It's a bit of trial and error as we're all a little different.

Good Luck and give it a little time!

Have you  tried Kegel exercises ?   You should have been doing them in between surgeries.  I have had my J-pouch since 2001, and I still do Kegels every so often. It's so normal for me now, just like yawning.

My son had these same problems with his pouch, which slowly faded after about 18 months.  So, have some patience with yourself.  Balmex helped a lot with the burn.  Diet has a big effect on the burn as well.  Generic immodium, especially before bed, helps, as does not eating after dinner.  Keep coming back to these message boards tho - you're not in it alone.

I was diagnosed with UC ~1973; had full colectomy w/ J-pouch ~2001, loop ostomy takedown in early 2002.  Went through everything you are describing. Lomotil usage is dropping off, but still in use. For watery BMs occurring every ten minutes, I chug some Pepto Bismol.  (I use the real thing; house brands are grainy.)

Only recently have I discovered the greatest thing for acidic burning and discomfort in the rectal area. As you, and others know, TP (toilet paper) doesn't really get all the liquidy acidic stool. There is still a "film" of the stuff. I bled many times.  (red, from the fragile, thin skin)

I found an inexpensive bidet (http://luxebidet.com/) which attaches to the toilet. No special plumbing is required as hot water is sourced at the sink or tub.  My rear end likes the cold water best; I used hot only for the cleaning option. This is not a "high end" product. But it gets the job done.  I want to shout from the Mountain Tops for everyone to get a bidet. It will change your life.

I gave up on the incontinence issues and simply moved the disposable underwear.  (Terming it diapers is degrading.)  While now infrequent, I still have accidents. It is so nice to just roll it up; bag it; and toss it in the trash!

Good luck as you move forward. We've all been there....

p