After the surgery to start using the jpouch, how long is needed for night incontinence to stop and output to be less watery? Do fap patient require permanent medication like loperamide to reduce the watery output?
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Good question, the J-pouchers I have talked to, I often hear: It can take anywhere from months-1 year for incontinence to stop. Healing looks different for everybody.
As for loperamide: I personally have never stopped loperamide with my ostomy. But Most people with a J-pouch will be able to stop loperamide after a few months since the small intestines will adapt and hold on to more water than before. The human body learns how to adapt with anything just about, that is what makes us special.
Good luck!
Most people see improvement in function by the third month post op. It can be incremental by the week. Not having IBD probably gives you a head start on better function, but it is variable enough to make it difficult to predict if you will be able to stop bowel slowers. I think much depends on how tolerant you are of loose stools. You should not expect or want formed stools with a j-pouch.
Jan 
I have FAP & a j-pouch, to reduce leakage at night, I stop eating 4-5 hours before I go to bed and eat a lighter dinner. I do the eat like a king for breakfast, prince at lunch and pauper at dinner. This gives my body more time to digest larger meals and reduces trips to the bathroom.
Add fiber like psyllium husk, it also helps by soaking up excess liquid in your GI. St Marks pouch support group has youtube videos that discuss this topic in more depth. I've had a pouch for decades and l learned new tips on food choices etc.
The interesting tip I did not know was that the large soft pretzels work well to slow your system and reduce incontinence.
PS, my leakage is due to my fistulas and recovering from the related surgeries. I usually only leak a few times a month.
@Cheryll posted:I have FAP & a j-pouch, to reduce leakage at night, I stop eating 4-5 hours before I go to bed and eat a lighter dinner. I do the eat like a king for breakfast, prince at lunch and pauper at dinner. This gives my body more time to digest larger meals and reduces trips to the bathroom.
Add fiber like psyllium husk, it also helps by soaking up excess liquid in your GI. St Marks pouch support group has youtube videos that discuss this topic in more depth. I've had a pouch for decades and l learned new tips on food choices etc.
The interesting tip I did not know was that the large soft pretzels work well to slow your system and reduce incontinence.
PS, my leakage is due to my fistulas and recovering from the related surgeries. I usually only leak a few times a month.
Do you have a rectal cuff?
Me? Yes I do, it has some lovely scar tissue wrapped around it, hence the fistulas.
@Cheryll posted:Me? Yes I do, it has some lovely scar tissue wrapped around it, hence the fistulas.
Thank-you for answering! I was wondering if you still had your rectal cuff since you had FAP. I see a lot of FAP on here that have a rectal cuff.
Sorry to hear about the scar tissue and fistulas.
Do you get your pouch/rectal cuff checked?
Yes, my pouch and I assume the rectal cuff would be checked by default. I hadn't had the EDG & pouchosopy since pre covid and I've been playing catch up on tests etc. Got my EGD (really good news), thyroid scanned and maybe soon my pouch.
I didn't know the rectal cuff needed to be watched closer, life would be easier if we had a FAP+IPAA manual. I realize I've had my pouch for decades but I always feel like I have to do a lot of my own research, and that exhausting,
Other than in general minor issues with my pouch, I've had a really good run until the scar tissue around my cuff area decided to grow & domino into fistulas.
I have the IPAA surgery, which means my rectum is gone. In fact, my surgeon told me he removed a bit of my anus tissue as i have polyps at my rectum too. I think the con about not having the rectum cuff is that leakage might occur occasionally. I don't know whether the situation will ever improve but I am still wearing diaper to sleep. I don't want any accidents.
@Cheryll posted:Yes, my pouch and I assume the rectal cuff would be checked by default. I hadn't had the EDG & pouchosopy since pre covid and I've been playing catch up on tests etc. Got my EGD (really good news), thyroid scanned and maybe soon my pouch.
I didn't know the rectal cuff needed to be watched closer, life would be easier if we had a FAP+IPAA manual. I realize I've had my pouch for decades but I always feel like I have to do a lot of my own research, and that exhausting,
Other than in general minor issues with my pouch, I've had a really good run until the scar tissue around my cuff area decided to grow & domino into fistulas.
Glad to hear about the other good news. Sorry to hear about the bad news. I wish we had a manual too. Their is so many crazy ignorant doctors that don't tell us everything lol.
Yeah the rectal cuff is colonic tissue which it can technically get cancer there, if it gets cancer there- it can works its way up and spread to other parts of the body system too. And the rectal cuff can get polyps there as well. I have talked with people in here that have had polyps in there rectal cuff and dysplasia in their rectal cuff too. It's definitely important not to go over the 3 year mark in getting everything checked with the J-pouch- the three year mark is only for pouches that have a healthy system and no issues. People with issues need to get scanned more often.
@Darkness posted:I have the IPAA surgery, which means my rectum is gone. In fact, my surgeon told me he removed a bit of my anus tissue as i have polyps at my rectum too. I think the con about not having the rectum cuff is that leakage might occur occasionally. I don't know whether the situation will ever improve but I am still wearing diaper to sleep. I don't want any accidents.
Yeah I still have my rectal cuff and I have leakage as well. I wear diapers for that reason as well.
I hope you still get checked often
Doing daily pelvic floor exercises to reduce incontinence. Kegel, bridge pose and squats help to strengthen sphincter and related muscles. You should start to notice a difference in 4-6 weeks.
Wearing a diaper is much easier than having to clean up after a middle of night accident.
Having affordable insurance is needed to keep up to-date on tests, I have not always had that so tests weren't regular. The fun of US health insurance.
I'll ask my rectal surgeon and my new gastro doctor about my rectal cuff next time I see them. Since I've had 2 fistula surgeries, I'm sure my surgeon would have seen any issues during surgery.
I've gotten lucky with my doctor choices, Mayo Clinic was more holistic team care and Swedish Hospital in seattle has doctors who know FAP, with research they can be found. I'm hoping Fred Hutch's team care approach is similar to Mayo but that's on hold until they can do the pouchoscopy. I currently feel like each part of my GI is managed by a different doctor.
I've been training my new PCP on FAP + IPAA, she acknowledges what she doesn't know and is open to learning and helping me with get the blood tests I need. That is refreshing.
OK, i'm off my soapbox, it's been a long ass year.
@Cheryll posted:Doing daily pelvic floor exercises to reduce incontinence. Kegel, bridge pose and squats help to strengthen sphincter and related muscles. You should start to notice a difference in 4-6 weeks.
Wearing a diaper is much easier than having to clean up after a middle of night accident.
Beautiful advice! Thank-you
@Cheryll posted:Having affordable insurance is needed to keep up to-date on tests, I have not always had that so tests weren't regular. The fun of US health insurance.
I'll ask my rectal surgeon and my new gastro doctor about my rectal cuff next time I see them. Since I've had 2 fistula surgeries, I'm sure my surgeon would have seen any issues during surgery.
I've gotten lucky with my doctor choices, Mayo Clinic was more holistic team care and Swedish Hospital in seattle has doctors who know FAP, with research they can be found. I'm hoping Fred Hutch's team care approach is similar to Mayo but that's on hold until they can do the pouchoscopy. I currently feel like each part of my GI is managed by a different doctor.
I've been training my new PCP on FAP + IPAA, she acknowledges what she doesn't know and is open to learning and helping me with get the blood tests I need. That is refreshing.
OK, i'm off my soapbox, it's been a long ass year.
Oh that sucks! Sorry to hear that hon!
Never assume, always ask!
Holistic care sounds very spiritual! I like that! If you need multiple doctors, I am here for it! As long as your okay and staying healthy, that is all that matters
Wow! That is very rare! Usually doctors are "know it alls" and are not open-minded. I am glad your PCP is openminded
Soapbox? What is that? Lol