Need tips to prevent nighttime leaks with my daughter's ileostomy

My daughter, age 10, is a recent ostomate (ileostomy). We have had a lot of trouble finding the best appliance for her due to size, activity level, and spotty home health nurse help. We're waiting for our first order of what we think is the best system, and meanwhile are making do with samples that the home health nurses can bring to us. The main problem is that they keep leaking at night/early morning while she is sleeping. We wake up to a nasty mess that requires 45 minutes of clean up, etc. The leaks seem to occur underneath the barrier seals that we're using, and mostly seem to occur when there is a lot of gas in the bag. I'd appreciate any tips longer-term ostomates have on how to prevent nighttime leaks. Do you avoid eating past a certain time? Do you wake during the night to empty/vent? Do you sleep at a slight incline? I am hoping the better products I've ordered will get us past this, but would also like some relief in the meantime.

Kdlavoie, I make sure I don't eat anything gassy at night. Most of my bedtime blow-outs were due to that. Until I got used to the ostomy, I put puppy pads underneath me so I wouldn't have a huge mess. I also sleep on my side...mostly on the opposite side as my ileostomy. It's hard to give advice on which product to use, so I suggest calling all the suppliers and ask for samples. They all are very willing to do this. I think there is a list on this site somewhere. Perhaps someone can direct you to it. I wish I could be of more help.

Take care,

Gail

Hi Gail - Can you give me examples of the foods you avoid? We are already avoiding almost all fiber. Will try having her sleep on the side opposite stoma. I think we've decided on the best products, just waiting for them to arrive, and hoping that they will work better at night than our current options....trying to find something to get us through until we can get the new system in place.

I would second the advice to get plenty of samples and try everything available. I avoid breads and grain products for gas. I would suggest that you try eating several small "snack" type meals in place of the regular, full "sit down" meal, especially the evening meal. Good luck and keep us posted of your daughter's progress.

Hello, I had the same problems as your daughter. I was snoring a lot and sucking in air that caused the bag to inflate. It would pop open at night. I started using Breathe Right strips and have not had any problems since.

My Ostomy Journey: LeeAnne | Hollister

Thanks, Super Hero... will try to limit the breads at evening meal...

Domingo - never thought about snoring...there was one night where it didn't leak and we were surprised. My husband noticed that she was sleeping on her side early that morning. So we will try the side sleeping tonight. Maybe that will reduce the mouth breathing. If not, we could try the Breathe Right strips...can't hurt!

Little late chiming in here but I also think it has a lot to do with how she is sleeping. I only seem to have this issue if I sleep on my ostomy. The output has nowhere else to go, pillows are a big help in keeping me off my stoma. And underpads for the bed are wonderful. I was even considering wearing adult diapers to bed at one point.

Never gave the snoring much thought, thanks for that tip guys!

Hi and thank you for posting. What I do to avoid any nighttime problems is wake up around 2 - 3 pm and empty my pouch. I also seem to produce some gas at night... cucumbers are a big offender. I use a pouch with a filter. With that being said, I need to change the pouch every day or every other because sometimes the filter will get wet with effluent (stuff) and absorb odors. The manufacturer says that it should not happen but it does periodically, even with a charcoal filter. Also, I do not sleep on my belly any longer... my side and back only. I would prefer the stomach but I do not want a blowout and I know one would happen because my stoma is most active at night from around 11 - 3 am. Good luck and keep posting. Everyone here has great suggestions. LH

Thanks everyone for the good tips...we've tried several things. The biggest thing seems to be waking her at around 1 a.m. to empty her bag. I wish we didn't have to disturb her sleep, but it seems to be the main thing that helps. We are using better appliances now (still waiting for our official order!! but a fellow pediatric ostomate had some leftover wafers that work better than the ones the HHN was providing), but even using those, and sleeping on her side we had a leak last night because my husband didn't wake her up to empty before he went to bed. We had a lot going on last night and it slipped his mind...so even with the better appliance, etc. we had a leak. Thanks for all of the ideas. It has been really helpful. We have tried (and prefer) the filter bags, but those seem to clog up fairly quickly, so I'm still not sure I would trust them to make it through the night.

Eat 3 or 4 marshmallows before bedtime. (The fluffy sweet type). This will help a lot... Also, try and get a pouch with the best filter possible and avoid things like peanut butter or anything that will cause a lot of gas. If it is a real problem, then put a new pouch on just before bedtime as the filter will work for a lot longer then and use a plastic sheet just in case. All this will help a great deal and might solve the problem altogether... Good luck

Go to your doctors or stoma supplier and ask them for a stoma belt that will prevent it being leaned on in the night and that will 9 out of 10 sort the issue out. It acts as a dome over the stoma so no pressure is applied to the stoma. I couldn't live without mine. They're amazing!

I've yet to find a pouch with a filter that actually works, and the worst seemed to be at night. Any liquid clogged the filter. At least during the day, gravity kept it away, but even still, the filter's function was barely effective.

That being said, aside from avoiding certain foods, I do this, which has helped tremendously:

I eat my last meal about 6 hours before bed. I'll have a small snack in between if I'm really hungry and make sure it's something that won't cause a lot of output. I empty before I go to bed. I'm on tincture of opium, and I have a dose before I go to sleep. I have a Philips Wake-Up Light that I set for 2 hours from when I go to bed. It's pretty much clockwork that I'll have to wake up to empty around then. I suppose I could empty into a urinal or something if I didn't want to have to go to the bathroom, but I'm not into that. I can empty quickly, then I have the Wake-Up Light set for 4 hours from then. Go back to sleep, and I'm typically good to wake up whenever after that.

It's not ideal, but it could be worse. A few more things, I wear a hernia belt and have it fairly snug to keep the appliance close to my body. Also, my stoma is on my left side, and I try to sleep on my left side. I found that if I sleep on my right side and the pouch fills, the contents cause it to hang down, and the weight starts to pull it away from my body. If I sleep on my left side, rather than hang above the bed, the pouch is supported by the bed itself, and it holds the weight so it doesn't pull away from my body. I also use one of those thicker, washable protective pads like they use in hospitals, but I put it under the fitted bedsheet because I'd rather not see it or have anyone else see it, plus I think it stays in place better when I get up or move.

Yes, it seems to start when any liquid gets underneath the seal and works its way through the adhesive and causes everything to come off. It took a lot of trial and error, frustration, and wanting to give up, but for now, this has seemed to work for me. Of course, now that I've written this, I'll probably have issues tonight or something.

Good luck to you and your daughter. I'm sorry she has to go through this at any age, but especially so young.