To be honest after doing pelvic exercises regularly I've never had any sort of leakage. I had close calls but no leakage. I try to do them every time I come from the toilet or before hitting the bed. Atleast twice a day. Also what I found is my pouch is empty when there's a blast of gas at the end of my visit. All the trapped gas once its out , relieves me for quite a few hours. If not I'll probably be hitting the toilet again soon. This sounds funny but thats how things are for me. And believe me the sound is pretty large too. The number of trips for me is proportional to the kind of food I had. When at work I fast for long. A big shake post workout helps me cover up for all calories I couldnt consume in the day. I just hate going too many times at work so I eat light breakfast and a late lunch.

Angie, leakage at one year isn’t really normal. Has pouchitis been considered?

Hi Sott I’ve had Pouchitis early on and was treated with Cipro. Maybe I’m one of those ones that needs to stay on antibiotics. I sometimes see a little bright red. Last night had symptoms 

Blood is more often a sign of cuffitis rather than pouchitis. Perhaps it’s time for your doctor to take a look. Do you have a gastroenterologist, or do you still see your surgeon?

Yes Scott  yes I have both. 

Is cuffitis worse?  Have a follow up appointment with surgeon on 2/21.

Thank you Raj 

Cuffitis is generally treated with different medications than pouchitis. Cuffitis is like UC in the small amount of remaining rectal tissue. Either condition can be mild or not so mild.

Thanks again Scott I will look into it. Although I didn’t see anymore blood. I to thought leakage should not been happening as it will be a year in April. I have been going to physical therapy to help strengthen the sphincter. Sometimes I can eat something and it doesn’t bother me then I can eat it again another time and it would go right through me which I thought was weird. I also was drinking Metamucil but after awhile it started to make me gassy so I stopped although it did help to bulk me up. Hopefully the leakage will stop after some more Physical therapy as at this point I don’t know what else to do. I also find that Imodium does better for me than the Rx Lomotil. Go figure right 🙄

Angie, if psyllium (Metamucil) made you gassy, why not try a different soluble fiber (e.g. Benefiber or Citrucel)?

Imodium is stronger than lomotil and I too found it better. I take 1 tablet every 2 days which is 2mg strength. Even that amount sometimes constipates me. Angie you should try with intermitent fasting. I eat in like a window of 10-12 hrs daily and rest my pouch other than that time. If you dont have any serious goals you can easily fast upto 14hrs a day. It relaxes the pouch big time. I'd say skip your breakfast and start the day with a good sized lunch instead. There are many articles online that explain intermitent fasting and its benefits.

And yes pysillium husk is gassy but I prefer having gas than liquid stools. Bulked stool are better held and lesser chances of leakage. You may initially find the gas hard to hold but soon the pouch adjusts to it.

In my experience, it's difficult to avoid leakage in a deep r.e.m. sleep b/c every muscle in your body is completely relaxed, including sphincter. The better you can sleep a little hungry; the better of you'll be. Make your last meal before sleep time your lightest and listen to your body. When you learn what foods/ drinks affect you in a way that produces more or less output you'll know what to consume before sleep. When your awake, the tightness of your sphincter will control leakage unless as mentioned you have pouch or cuffitis. I had pouchitis often and a combo of cipro/flagyll would stop it in 3 days or less, usually same day. Early on it was hard to tell the difference between diarrhea/ loose stool or pouchitis. With me, it didn't matter what I ate or drank when pouchitis was happening. I had running or very loose stool regardless and I would keep the anti-biotics on hand at all times.

Dx UC 2001

Totel Colectomy with end ileostomy (emergency-toxic megacolon) 2003

J-pouch surgery 2004, 2 step

2005, temp ileostomy-due to j-pouch complications.

2011, j-pouch reconnection.

2018, j-pouch Removal and end ileostomy.

Thank you all for the quick response. 

Scott I will definitely try the fibers you mentioned.

Thanks Raj I will look into giving my pouch a rest

Jeremy I also keep antibiotics on hand as well.