Trouble Sleeping After Nighttime Leak: Seeking Advice

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717
infinitycastle52777
Oct 23, 2023 9:48 pm

On Friday night going into Saturday morning, I had a nighttime leak. I haven't had one at night in a few months and was surprised and upset when I woke up a mess. Since then (the last 2 nights), I have had incredible trouble sleeping. I don't feel like I am obsessing over the leak, but maybe unconsciously I am. Has anyone experienced this sort of thing? What did you do to get back on your normal sleep schedule? I even brought it up in therapy this morning. My therapist said if I can't sleep tonight, then she wants me to say a word for every letter of the alphabet until I fall asleep. She said I will be asleep in no time if I do that. On the contrary, I think that will wake me up more because I play Scrabble a lot and I know if I am naming words for every letter of the alphabet, I am going to be thinking up good words for Scrabble and then that will just keep me up thinking. So, does anyone have any suggestions?

Lee

colingemmell46
Oct 23, 2023 10:44 pm

Hi, I'm not sure what type of bags you use. I live in the UK and use Dansac one-piece bags. If I get a small leak, it's caused by air. The only times I've had a major problem was when I forgot to seal the opening. Anyway, don't stress about it. Make sure everything is secure and don't worry.

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Cplumber
Oct 24, 2023 12:09 am

I wear an ostomy belt at night; it stops leaks, eases my mind, and helps with sleep.
Good night, sleep tight.

Cplumber

infinitycastle52777
Oct 24, 2023 12:26 am
Reply to Cplumber

Cplumber

I wear a belt all the time. I don't have leaks too often, but I had two defective bags from the same box that had holes in them. What got me about the nighttime leak was that somehow the bag got detached from the wafer, even with the belt on. It is the most curious thing to me. I had put that bag on fresh Friday morning, and I was sure it was fastened on tightly. But that is where it leaked from, not under the wafer. I have never had that happen before in the last six months of wearing a bag.

Lee

infinitycastle52777
Oct 24, 2023 12:28 am
Reply to colingemmell46

Colingemmell46

I use Hollister bags. I live in the US. I wonder if the bags over there where you are are much different from the ones here. I use a 2-piece system. I've never tried a 1-piece.

Lee

 
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imperfect
Oct 24, 2023 2:58 am

I've been an ostomy patient since 1996 and I still get anxious at night if I'm traveling or ate something that can get blocked.
I still have an occasional bedtime leak. At least I have access to a bathroom and can deal with it. It used to freak me out.

Bill
Oct 24, 2023 8:21 am

Hello Lee.

Thanks for sharing your problems with leaks and lack of sleep. 
The way you describe it, the sleep problem seems to be directly related to the leaks and is therefore perfectly understandable.
Logically, it would seem that if you resolve the leak problem, then the sleep problem will probably resolve itself. 
I believe that many ostomates have had similar problems in their long journeys and quite a few of them have found suitable solutions by trying different bags and support systems. 
Therefore, this experimentation seems a sensible way forward. However, if, after searching for a ‘sensible’ solution you still have problems, then you have joined the realms of people like myself, who have had to make up their own (DIY)solutions.

The way I figured the leak problem, was that I should examine it in a similar way to how a plumber would work toward fixing a leak.
1) I logically laid out the possible causes of my leaks. 
2) I examined what I had tried and failed at. ( there’s no point in repeating failures!)
3) I tried to design a system that would overcome all the above and give me confidence that leaks were unlikely to happen.
Now, we come to the more tricky ‘psychological’ hurdle of overcoming what has been ‘traditionally’ used, and replacing it with something practical, functional and physically successful, rather than aesthetically pleasing. 
My leaks were nearly all to do with the wafers; partly due to gas pressure pushing the output under the wafer; and partly due to the pancaking effect where the output compressed around the stoma and squashed under the wafers at that point. 
Thinking like a plumber (rather than a medic) I designed alternative baseplates that were held on by a belt (or two at first) and stuck down with ‘prosthetic’ glue.
I say ‘baseplates’ because I needed one for irrigation and night time use and a different one for daytime use.
The irrigation baseplate was designed with a (Plumbers) 90 degree waste-pipe bend, so that the output would be directed into the sleeve, rather than pancaking around the stoma.   After irrigating, I left the baseplate & bend on, then folded and clipped the sleeve to form a huge ‘bag’ for overnight. This ‘bag’ was big enough to hold any amount of output and/or gas. (you would be astonished at how much gas can be emitted by a stoma during the night!
Following the same principles(which worked but were bulky), My daytime system involves a similar (DIY) baseplate with a two-piece bag system and a screw-on cover, which directs the output away from the stoma (& baseplate) into the ‘normal bag’.
This sort of system is not pretty and it would certainly not win any awards for being aesthetically pleasing. However, it does work for stopping leaks and I have been using it for more than 2 years. 
There are other advantages to having semi-permanent solid baseplates, which are to do with economies of using other items such as ‘bags and sleeves’. Sticking these to a homemade baseplate extends their usefulness to months rather than days, and, for those people who have to pay for their supplies, this could be considerably cheaper.  ( I don’t have to pay for my supplies as these come free of charge, courtesy of the NHS).

One other comment regarding making your own baseplates, and that is: I believe that these things should be bespoke, i.e. made to fit each individual precisely. After that, almost any type of bag/sleeve will do because they will be fixed to the baseplate rather than the person. 
Upon reflection, I do think that making bespoke baseplates with those new-fangled computer-assisted gadgets would be a possible way forward to resolve many of these issues. However, this is unlikely to be available through the present manufacturer’s route, as they make their money by selling quantities of disposable bags and stuff. 

Sorry for the long-winded reply but I hope you are able to resolve your own problems in the near future.


Best wishes

Bill 

 

Ben38
Oct 24, 2023 12:21 pm

Time! That's what you need. It knocks your confidence for a few days when you've had a leak, but you will soon be back to sleeping all night again within another day or two. We get leaks at times, whatever we do or don't do; it's just part of bag life. Most likely, your bag just filled up with gas and pulled the base off. Fingers crossed, your leaks are few and far between, like mine are.

Justbreathe
Oct 24, 2023 1:07 pm

It sounds as though you need to try different products - a one-piece system, for example. If you do, make sure it has a tape seal all around the perimeter. My Convatec 22771 from Med180 (my supplier) has not failed me (so far). However, it has no loops for a belt, which some folks require.

When I was a new ostomate three years ago, I received (free of charge) a very nice travel case from Convatec - I did not request this, and I think a WOC nurse may have requested it. It included product samples and an airline travel card to show to a flight attendant, giving them a “heads-up” notice that you are an ostomate for restroom considerations. The travel kit has this information stamped on the inside - ConvaTec me+ 1-800-422-8811 if you wish to get further information about it. Included is a booklet on me+ support. This may be useful to you.

In the meantime, if fear of a leak is the reason for not being able to sleep, perhaps you could try wearing Depends at night until the fear has subsided. jb

gentlejohn
Oct 24, 2023 1:11 pm

Try wearing an ostomy belt. I always wear a belt and have never had that problem. I also commonly have to empty during the night when I have to get up and urinate.

AlexT
Oct 24, 2023 4:35 pm

You pay a therapist to tell you to say a word for each letter of the alphabet to get you to fall asleep? 😂 I need to change professions. Try this... go to bed, close your eyes, inhale through your mouth while slowly counting to ten. Hold it in for a couple of seconds and then exhale through your nose slowly counting to ten (in your head, not out loud). Repeat. A clear calm mind will make you fall asleep and controlling your breathing will let you relax. No charge for new clients. 😁

bowsprit
Oct 26, 2023 6:24 pm
Reply to AlexT

That maneuver sounds good, Alex. I will try it. Actually, I know of one even more effective method that will make you sleep like a log, but I am a bit shy about explaining it in detail.

infinitycastle52777
Oct 27, 2023 12:43 am
Reply to AlexT

Alex

She taught me breathing exercises to do, but so far they have not worked. I did breathing exercises for 30 minutes and was still awake. So that is when she told me to name things for every letter of the alphabet, which I did 12 times with different themes. I think it made me more awake actually because if I ever got stuck on a letter in that theme, I just racked my brain until I came up with an answer. It even made me, in the morning, look up words to fit my missing letter. Like, I couldn't think of a medication starting with K, although I just thought of one now: Klonopin. I was amazed at how many medications I could name that I have been on! But I think it made my insomnia worse. Is it not bad enough that I already take two medications for sleep? I got to sleep about 2 a.m. last night and was awake at 4:30 a.m. I just lay there from then until 6 a.m.

Lee

infinitycastle52777
Oct 27, 2023 12:48 am
Reply to bowsprit

bowspirit

I know one way I used to sleep: alcohol. But I don't drink anymore. Haven't in 8 years. (In case you are wondering, no, I am not an alcoholic.) But I don't drink now for health reasons.

Lee

infinitycastle52777
Oct 27, 2023 12:50 am
Reply to gentlejohn

Gentlejohn

Maybe that is my mistake, I don't get up in the night to empty. I do wear a belt all the time, the one that hooks into my bag.

Lee

infinitycastle52777
Oct 27, 2023 1:03 am
Reply to Justbreathe

Just breathe.

I tried a Convatec product before that caused me lots of problems. I got a travel pack from Hollister per my ostomy nurse's request. It came with a nice travel bag, but I ended up using a different bag to carry supplies with me, one that holds a water bottle as well. It's sort of a purse backpack kind of thing. I didn't get a travel card with my kit, I don't think. When I first had my ostomy, I did wear Depends for the first couple of weeks. I didn't like it though because I felt weird. My mom used to sing the "I'm a big kid now" jingle at me. I had another leak, but in the daytime, due to a hole in the wafer that I didn't catch when I put it on. I was less upset about that though because it was a minor leak and only got just a little on my clothes, not like the nighttime leak.

Lee

infinitycastle52777
Oct 27, 2023 1:10 am
Reply to Ben38

Ben38

They were up until a couple of weeks ago, few and far between. In the last 2 weeks, I have had 4 leaks now. Two were due to defective bags (there was a hole in the same place on both bags). Those I actually contacted Hollister and told them the box number and UPC number and what the problem was, and that losing 2 bags was not good for me as my insurance only allows me a certain number a month. To their credit, they apologized and sent me 3 replacement bags within days of my complaint. The other was a problem with a defective wafer that had a hole in it. I've never had so many problems with my products before. Then the nighttime leak was because somehow the bag got detached from the wafer. That was a first for me. I do have trouble with my bag filling up with air overnight. Sometimes it gets so full of air that when I open it to empty in the morning, everything bursts out.

Lee

bowsprit
Oct 27, 2023 6:05 am
Reply to infinitycastle52777

You did exactly the right thing. Alcohol disturbs sleep patterns; people who exceed drinking limits don't get enough sleep. Excessive worrying is another sleep denier. Try to relax and let the world go by. Best wishes.

Borikua610
Oct 27, 2023 4:47 pm

Hey Lee, I just had a nighttime leak yesterday morning. I woke up at 7 a.m. and usually am half asleep when I do a finger check of the skin around the wafer to make sure it is dry, and suddenly realized I had been leaking for a while! I woke up in a panic and realized that my leak lifted the wafer off the skin and (I call it mushroom) mushroomed the stool onto my skin around the bag and dripped down the right side of my body. My physical ileostomy area also has an open wound in the middle of my abdomen, and the ileostomy is to the right of the wound. The stool was kind of everywhere around the bag, dripping down my right side, and I was wearing sweatpants to stay warm overnight, which also got ruined, along with the blanket I had over me.

I haven't had one of those leaks in weeks because I normally can't wear pants at night. If I do, I always leak. I put a new bag on but usually, if I can't sleep, I have alarms for certain times to wake up and empty the bag and then go right back to sleep. Just before I get in bed, I do make sure the bag has enough air in it so the stool slides right out of the stoma area and it's empty. Once I know it's ready, I hit the pillow with a bit more confidence. If it takes me a bit to fall back to sleep, I try to relax my jawline. When someone is anxious or stressed about something, relax the breathing and relax the jaw. Sometimes it's an unconscious response to something. If all else fails, I try to play that one game on my phone to help me relax. It could be a color game where it doesn't take too much thought, or something else simple to ease you back into a calming state. Once you're in a comfortable position to fall back asleep, it should be no problem!

Hope this helps!
Angie.

infinitycastle52777
Oct 28, 2023 2:05 am
Reply to Borikua610

I am going to get a library book tomorrow. They say if you aren't asleep in half an hour, you should get up and do a quiet activity until you feel sleepy. So, I am going to try that. I totally know the feeling of waking up to a mess. What do you do in the winter if you can't wear pants to bed? All my pajamas are pants and t-shirts. But my ostomy is up higher than most people's, several inches away from my waistline. I do deep breathing when I go to bed. I am going to try tensing and releasing parts of the body from the toes to the head tonight and see what that does. If I have no luck, I will tell my psych nurse she needs to up my sleeping med.

Thanks for sharing your experience with me.

Lee

Kas
Dec 17, 2023 12:43 am
Reply to Bill

Bill,

I wish you were my neighbor so you could teach me how to make these!

Kim