Almost every night since my surgery, it seems like just as I finally fall asleep I am rudely awaken when the discharge from my JPouch finds it's way out. I haven't slept well in quite some time and would really love some help as I feel as though it's negatively affecting my health.
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My husband wears overnight sanitary pads with wings (the ultra thin ones). Works really well.
Try taking an Imodium before going to sleep.
Thank you ladies, I'll surely give these a shot...After I wrote this I did a search and came acrossed a gentleman who said not to eat after a certain time. I tried it last night and it worked!! It was hard not eating past 6pm but well worth it as I only woke up twice and was leakage free. It's the first night so I won't get too excited but man I feel guureat! Lol.
Eddie, I'm 3.5 month's post takedown and have had trouble with the night time leakages as well, here's a couple tips that might help: No food 3-4 hours before bed, minimal fluid intake 3-4 hours before bed, eat a substantial dinner to thicken output (chicken, mashed potatoes, etc), stay away from carbonated drinks and foods that produce gas and watery output at night and during the day DO NOT SKIP MEALS! This produces large amounts of gas that could be potentially contributing to your leakages. Add a fiber supplement at dinner time to thicken output (my choice was citricul because it reduces gas), Two Immodium tabs 30 min before bed, always make one final trip to the bathroom right before dowsing off, it might not hurt to add a gas reducer before bed also such as gas x because more then likely what's happening is your passing gas in your sleep and as we know, its almost impossible to pass gas without output (thus why its important to thicken output), something I cannot stress enough is KEGAL exercises to strengthen the anal sphincter muscles (very important, crucial during the recover period), if need be you can always wear adult diapers to bed as added protection or you can use a feminine pad with wings (its a little easier to deal with emotionally, for me anyways) sometimes if I feel really confident, ill just fold a piece of Toilet Paper and place it in the crease of my buttocks and that works well if I haven't eaten much that day, one last thing you might consider is taking a Probiotic such as VSL 3.. I've heard this can also be helpful, when I asked my Dr regarding it he agreed but said there were much cheaper routes as he referred to Greek yogurts for Probiotic intake. Hope these help and good luck on your journey... Keep us posted...
Manny, thank you very much for the informative reply. I'll surely give it a try. The only thing that worries me would be the Imodium as I currently have an ileostomy and already had a bout with severe blockage. Did you use the Imodium with your ostomy?
I don't think we realized you currently have an ileostomy or that would change most of our recommendations, mine anyway. I agree about not taking Imodium if you have blockage problems and feel uneasy about taking it. I didn't have any problems with leakage from my j-pouch in-between surgeries so never experienced your problem at that stage. When I had my stoma I had hydration problems so I suggest keeping hydrated even if you have leakage. I hope your take down is coming soon!
TE Marie, so sorry for the lack of information but I still thank you for your help )
quote:Your surgery (type, date): 9/19/2013-Robotic total proctocolectomy with J pouch ileoanal anastomosis with diverting ileostomy 10/28/2013 Corrective surgery for blockage/obstruction
Eddie, I've posted the information from your profile here so you'll get better answers. There have been plenty of discussions about difficult-to-control discharge from the J-pouch while folks have had a loop ileostomy. I'd recommend trying to find some of those with the "Find" option here. I don't think thickeners or slowers will offer a lot of benefit, since this really isn't poop you're dealing with. And now others can advise you better (I never had a loop ileostomy).
Thank you kindly Scott. And I'm sure it's all too obvious how new I am. Lol. I'll try the search now.
I promise it gets better--at a couple weeks post-takedown, it was almost nightly for me to have accidents--sometimes twice a night. As time passes, you'll notice a difference. I'm about 11 months post takedown and can't remember the last time I had an issue--probably at least since summertime. I took a bed cover home with me from the hospital (one of the cloth ones) and used that until I was comfortable that I wouldn't have an accident. For the nights that I did have them and it got on the cover, I just grabbed a towel and folded it in half and centered it around my waist on the bed. It cut down a lot on the sheet changes.
Eddie,
I apologize, I was not aware you still had an illeostomy. To answer your question, I was taking Immodium at the time of my illeostomy to slow down night time trips to empty the illeostomy. Never had any trouble with blockages or obstructions but then again I would confer with your MD before trying it as I know there are other options out there as well. Like currently for me.. I must take Immodium and Lomitil at night together to reduce the chances of accidents. I have always had problems with leakages and watery output. I remember during my illeostomy days, getting up to find mucus discharge from my anus was a multiple a night occurrence and gas because I used a non vented illeostomy bag would be puffed up like a gallon when I woke up, normally breaking the seal which caused leaks from the ostomy. But anyways I would def consult a Dr before moving forward with Immodium or anything of that nature because of your past history with blockages.
I apologize, I was not aware you still had an illeostomy. To answer your question, I was taking Immodium at the time of my illeostomy to slow down night time trips to empty the illeostomy. Never had any trouble with blockages or obstructions but then again I would confer with your MD before trying it as I know there are other options out there as well. Like currently for me.. I must take Immodium and Lomitil at night together to reduce the chances of accidents. I have always had problems with leakages and watery output. I remember during my illeostomy days, getting up to find mucus discharge from my anus was a multiple a night occurrence and gas because I used a non vented illeostomy bag would be puffed up like a gallon when I woke up, normally breaking the seal which caused leaks from the ostomy. But anyways I would def consult a Dr before moving forward with Immodium or anything of that nature because of your past history with blockages.
Have you been doing your butt clench exercises?
Hey Eddie sorry to hear about your issue, but I can truly relate to you. I also have an ileostomy, mine ia an end ileostomy due to many complications long story which I won't get into, but I also have constant anal leakage which is humiliating especially while you have an ileostomy. The whole idea was to get a break from running to the bathroom, but know I'm wearing a diaper and having constant urgencies during day and in middle of night. I'm constantly humid down there causing irritation its depressing. I'm constantly on my bidet rincing away. I take Imodium to reduce liquids output from ileostomy but I also wake up to my bag ballooned up. I'm waiting to have surgery for my syphinter and then have a pacemaker (inter slim) my worry is I've had a case of pouchitiis in the past and am worried that Im still gonna have the leakage and it won't be just mucus after. I wish there would be something we could do to stop this leakage! They telling me that once the pouch goes back to its initial function it will get better. I sure hope so but scared as hell! Best of luck to you.
Thanks L.DL. A best wishes to you as well. Stay strong.
Hi Eddie and L.DL, I see this post is from a while ago. Any updates? I currently have a loop ileostomy (and probably for another 6 months). This is my second time around with a loop ileostomy and a jpouch disconnected but still producing mucus galore. I hope you guys have the same experience as I did my first time in that my jpouch continence was much easier without the loop ileostomy than with.
Do you guys have any suggestions for disconnected jpouch mucus incontinence? It's far worse than the ileostomy. Warning for weak stomachs, was the mucus green? There is not a strong odor, but the color makes me swear my jpouch has a sinus infection
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