Hello all I’m 6 months post jpouch take down. Things have been slow but overall happy with my progress back to the gym an all that. But I’m having leakage issues every time I go to sleep so I’m waking every 1- 2 hours goin the the bathroom so I can go back to sleep I’ve tried emptying my pouch spending half hour on the toilet but there’s all some in there. I’m ok during the day but seems when I lay down the urge comes. I’ve tried leaving it an trying to sleep threw the night but then I’m stuck with the itch the next day. It’s really getting me down lately I’ve been planning a holiday with a friend but I can’t be getting up 5 times per night and having a bad sleep then go try do the tourist thing the next day. Any1 else have this problem still? Any advice or thoughts welcome.
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Have you tried loperamide? Two before bed should keep you for the night.
Yup , 2 2mg sometimes 4 no difference
Have you tried thickening up the stool with Metamucil?
Won’t that make me go more? Like I go enough during the day already. Does the jpouch need to b absolutely empty goin to bed?
The urge just to go and nothing else kept me awake. I couldn't find an answer. Sorry your going through this. Not getting sleep compounds all or any other problems your having. It's terrible. I know. I went through the no sleep for a long time. And working eight hours a day with 3-4 hours off and on grinds on your state of mind after a time.
I hope you can find an answer. It sounds like it works fine otherwise. I found that mashed potatoes or cheese slows it down significantly. But if you try this use caution. It only took a little for me. Too much would cause a blockage. And you do not want that.
I know some people who take Cipro to slow down their bowels. You can maybe try that. But Metamucil will not make you go more. It’ll help make your output more solid.
Let me just say I am grateful for every single day since my takedown. JPouch has given me normality . I look at life differently not much fazes me & I am so Lucky. This is the First time I have blogged so I hope I can help your journey.
My age is now 55, takedown when i was 33 some 22 years ago. Little bit of history I was & still am a Professional golfer I am a Aussie. I discovered a little bit of blood in stool when i was 18 was diagnosed proctitis. Over coming years affected more & more of anal canal then diagnosed UC. Controlled bouts with medicationfor some 10 to 12 years.
When I was about 32 UC went rampant I was anaemic daily on I had major stomach cramping. My family doctor would call 2 to 3 times a week for iron injections, & when cramping was major pain releif injections. My weight over a period of time went from 92kg to 66kg. I passed dark blood consistently & basic ally Lived majority of life in a bath & toilet. Trying everything to avoid takedown new medications daily enema by nurse calling to my home. Life was bleek.
I relented & decided to have takedown with Specialist/Surgeon I was seeing for past years. My stomal nurse pre-op in not to many words said don't go through with it with him, & gave me a card of a Doctor Mackie of ST Vincents Public Melbourne. Heed to say did not take her advice.
Anyhow takedown surgery was anything but a success, I won't bore you but the next 4 to 6 months was worse then pre takedown dealing with UC. Ended up with illeostomy & a tube out my butt into bag strapped to leg for 6 months, in hospital daily pain releif to deal with constant gut spasms various medical tests weekly. But medical team said it was in my head could not find problem. I am now 60 kg & getting lighter getting fed intravenously as cannot hold food down, still on pain releif all day medical team saying i am addicted. But I know I was not. I was now hospitalised for some 6 months.
Obviously the hospital I was at did not want to transfer me, & basciclly left me to die. But my darling Wife Andrea who was by my side daily & lived this jouney & still is. Fought hard & won had me transferred to St Vincents after consultation on my story with Doctor Ian Mackie who took me on.
Let me say best move of my life I am now 58kg on pretty much on arrival took a litre of blood tagged red or white blood cells , i can't remember with atomic atoms or something & reinjected. On screen went straight to JPouch & showed leak in to my gut had peretonitis Septasemia hence all the pain. Dr Mackie & his colleague Doctor Woods another great man performed a emergency op & rebuilt the JPouch even though I was now near death.
Spent following months in intensive care & slowly but surely gained strength & eventually was able to eat myself obviously starting on fluids had 2 or so more ops before reversal & JPouch now fully functional.
Let me say I owe my life to my Wife, Doctor Mackie & Doctor Woods & that stomal nurse that slipped me a business card. These two Surgeons at the forefront pioneers of Jpouch surgery in Australia.
Took along time to gain strength walk any distance without looking for a seat but gradually health improved over time.
Now this living hell is over a new jouney begins living with a Jpouch.
I was instructed to do pelvic floor exercises for the anal passage to prevent leakage, otherwise could wear a nappy all of life. Let me say I worked my butt off no way was I waring a nappy. Man I could crack a billiard ball in their.
Early days first few weeks was great to sit on a toilet not kneel beside it to empty illeo. But going a lot not much would happen hard to tell difference between a fart & need to go. Accidents are common & a learning curve eventually its you body you get to understand some fundamentals .
Bowel Obstructions happened time to time very painful only first year or so, but you learn what to eat. Sleep was hard especially early day,s first couple of years.
Eating red meat studies show probably contributed to my & your UC .But found steak was great to eat 3 or 4 hours before bed by it self only a dash of worcestshire sauce no gravy's no salad no veg as it would break down slowly over hours while sleeping. early day's nothing to get up 4 or 5 times now 2 to 3 times at worst. Still would not eat steak every night trial & error. Tried diarrhea meds but nothing seemed to work , so bascically to no meds for some 7 to 10 years.
Then had like major sciatic pain went to Doctor prescibed Mersnydol Forte take 2 in morning, 2 in afternoon & 2 at bedtime till pain abates., & something weird happened I slept through night then next night. Never in ten years had this happened so I went back to Doctor & asked why.
Codeine was the answer side effect-- (it is a major major binder) so after telling him story he agreed to write me a script for codeine by itself as a trial to see how we go.
My sleep habits changed immediately. I would take 2 x30mg tablets going to bed & would sleep all night or get up once only. I have now taken codeine nightly for some 15 years, the last few years I only take 1 nightly as found body has got used to it & taking one is little difference to two. Probably effect not as strong now as early days & to this day is the only med I take one at bedtime.
But BEWARE this is a NARCOTIC & can be ADDICTIVE
I never abused or saw reason to take to get through day only at night. During day was never a problem I would go some 8 to 10 times some day's less but could hold for a hour if had to for any reason ., & I felt blessed to be able to sit on toilet.
I have not had a bowel obstruction or pouchitis since very early years nor do leak out my butt . My poo has hardened some what so I believe the JPouch takes on the role of large bowel over time. Have not had a burning bum in sometime unless have something hot to eat & if I do warm facewasher round butt alleviates burn.
Find what works keep a food diary walk a lot & exercise seems to help bowel function.
Life is a journey embellish it be grateful everyday for what you have LIFE.
I found Metamucil reduced leakage overnight (providing I didn't eat anything provoking, such as lentils or salad) and helped with itching/burning. It didn't make me go more.
Also, my pouch function continued to improve up to the one-year mark. I know it's discouraging when you would like to go on holidays now, but it's likely that you will see further improvement.
Thanks for all the reply’s everybody I’m definitely gonna try the Metamucil this week I guess I had the wrong idea about it. Once I start getting even 5 hours consistent sleep Il b delighted 💆🏻♂️😴
I had experiences similar to yours and second Terry's experience with pelvic floor exercises and use of codeine sulfate. With respect to the pelvic floor, that is likely more relevant if you were not using your rectum for a time -- sounds like Terry and I both came to the j-pouch after some time with an ileostomy where laxity in those muscles can become a factor in leakage. If I remember correctly, codeine is prescribed because it is better than Norco or the like as it has more of the constipating affects and less of the narcotic. Both scripts (for the PF therapy and the codeine) were given to me by Dr. Shen at Cleveland clinic and did help. But in the end, I had to ditch my j-pouch for inflammatory reasons.