Stoma bag leaking during the night

[Brian1977]

I just got home from hospital after a 2 and a half week nitemare stay in hospital after very complicated surgery to remove my whole colon. I was OK in hospital because I couldn't get any sleep but the past 2 nights I'm that tired I've woke up and my bag has leaked all over the place my poor wife is shattered too. They said i would need to wake up during the night to empty the bag but I'm that tired I've not woke up. Just looking for some advice for tonight as I won't be able to speak to my stoma nurse until Monday thankyou

[Butcharts]

Try changing your eating habits. Have your main meal at lunchtime, and eat much lighter food later in afternoon.

[MyStar86]

I am nearly a year into having my stoma and I still have to get up multiple times in the night to empty it however I don’t sleep so I am able to but maybe you could try setting and alarm for half way through the night that’s how I got through the initial phase of the vicious high output I would set one alarm for 3am empty my bag then go back to bed and that helped a lot so it’s worth a try or you can take an Imodium at bedtime if it’s a watery nighttime output as that will slow it down. Sorry you are going through this but it does get better and easier to manage. Take care and I’m always here because I know how horrible it is at the start you basically have to learn to eat and live again but soon it will get into a pattern xx

[mhoam in reply to MyStar86]

I found the active ingredient in Immodium, called Loperamide, is better for thickening the output. Over the counter Immodium is in a capsule which is designed to stop the ingredient being absorbed in the small intestine so it works in the colon, for "normal" diarrhoea.

Brian1977 please talk to your stoma nurse and GP regarding the use of Loperamide to slow down the ileum and thicken your output. I still have to get up a couple of times in the night. It does get easier over time.

Good Luck

[MyStar86 in reply to mhoam]

I never had any issues with the Imodium instants they always worked for me and my stoma nurse said they were fine to use but to be fair the other are a lot cheaper and you can get them on prescription too.

I find codeine helps me as I’m still in a lot of pain waiting for further surgery but taking codeine slows my output down a lot I take it 2/3 times a day xx

[kimmo]

I have had my stoma for 14 years and still have to get up twice in the night to empty my bag, but it becomes routine and part of your life. The first 12/18 months are the hardest, so hang in there.

There are products to thicken the output available from your stoma product supplier which are far easier than having to take things orally!

As regards leakage I think that is something most stoma patients encounter at the beginning, and sometimes later, but there are also ‘seals’ you can get from your stoma supplier which prevent this and belts which ensure your bag fits perfectly.

It is trial and error at the beginning, so please don’t give up hope 🥰

[Oldude]

I'm sorry you are having a hard time with your bag. Four years ago my Koch's pouch got to where it wasn't working correctly and I was getting terrible stomach pains, so I opted for an ileostomy and like you wound up with a stoma bag. I really wasn't expecting to have to drain the thing as often as I did, but like you I had to empty about 10-15 times a day and at least once during the night. I had some good advice from a stoma nurse and a GI doctor on a diet so that I didn't lose a lot of weight, but I still ended up having to empty several times a day and at night also. Sleep was a thing I used to enjoy.

So, 6 months ago, I had my Koch's pouch re-connected and I can sleep again. I had lost over 40 pounds with the Ostomy bag and have now regained about 30 pounds. I place a tube through an opening in my stomach and empty about 4 times a day and am able to sleep all night without having to empty.

I know this doesn't help you but some suggestions for not having the bag burst open and leak all over the place is when you put on the new bag, shower before you take off the bag to eliminate having a slick surface for the new bag to adhere to. Use those round disks before putting the bag on and then get a heating pad or something similar to help seal the bag. This really works. Before doing this I would have the bag start leaking when out in public. A few times it would start leaking at night so I started putting a towel under me while sleeping.

I am going to suggest to you that you find out where you can get a Koch's pouch surgery, since there are not too many surgeons who do it again, but like me you had your colon removed, it is about the only option since you are not really a candidate for a J pouch.

I'm wishing you the best of luck. I know exactly what you are going through

[JerrysGirl3]

I would immediately buy chucks which are those big absorbent pads they use in hospitals. And lay em on top of each other. I would also look into changing the ostomy pouch. I had major issues in hospital for months. Then I was told of another bag setup and have not had one leakage problem since. I have a very active ostomy. Needs to be emptied ALL the time. What they say is cut back on water and food a few hours before bedtime to cut back on output. I'm not sure of the model but will try to look it up later (at grandsons Halloween parade now) and will post it. It had made life so much more bearable it's incredible. I'm so sorry you and your wife are going through this. Hospitals tend to give you no information about ostomies after you leave.

[JerrysGirl3]

I'm back. I use:

Marlen UltraLite #57625 w deep convex pouch

Coloplast Moldable ring 2.00 mm to go between the pouch and my skin

Coloplast Brava elastic barrier strips to go around and seal the whole thing.

Works great! Never had one leak in 7 months. Easy to place. Easy to take off. I use medical adhesive remover spray to help lift pouch off when changing (and to get rid of any gluey things on skin and also use Brava adhesive remover wipes )

in the US theses are names and numbers of companies who might give out samples for you to try

Hollister 855-960-5330

Convatec 877-585-0470

Coloplast 855-863-3912

Ask for convex samples

Good luck!!

🦄👻🎃