Sleep and Leaks

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infinitycastle52777

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 anyone have any suggestions? 

Lee

colingemmell46

Hi, 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 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

I wear a ostomy belt at night it stops leaks and eases my mind and helps with sleep. 
Go night sleep tight 

Cplumber 

infinitycastle52777
Reply to Cplumber

Cplumber

I wear a belt all the time. I don't have leaks too often, but I had 2 defective bags from the same box that had holes in them. But what got me about the night time 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 6 months of wearing a bag.

Lee

infinitycastle52777
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

 
Words of Encouragement from Ostomy Advocates I Hollister
imperfect

I’ve been an osty since 1996 and I still get anxious at night if I’m traveling or ate something which 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

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

Time! that's what you need knocks your confidence for a few days when you've had a leak you will soon be back to sleeping all night again within another day or 2...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 of....fingers crossed your leaks are few and far between like mine are 

Justbreathe

It sounds as tho 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 3 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 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 a depends at night until the fear has subsided.  jb

gentlejohn

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

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 thru your mouth while slowly counting to ten. Hold it in for a couple seconds and then exhale thru 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
Reply to AlexT

That maneuver sounds good, Alex. 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 of explaining it in detail.

infinitycastle52777
Reply to AlexT

AlexT

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 till 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 K lettered medication although I just thought of one now Klonopin. I was amazed at how many med 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 2 medications for sleep? I got to sleep about 2am last night and was awake at 4:30am. I just laid there from then until 6am.

Lee

infinitycastle52777
Reply to bowsprit

bowspirit

I know one way I used to sleep. Alcohol. But I don't drink anymore. Haven't in 8 years. (incase you are wondering no i am not a alcoholic) But I don't drink now for health reasons. 

Lee

infinitycastle52777
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
Reply to Justbreathe

justbreathe

i tried a convatec product before that caused me lots of problems. I got a travel pack from hollister per my ostomy nurses request. it came with a nice travel bag but i ended up using a different bag to carry supplies with me in, one that holds a water bottle as well. it's sort of a purse backpack kind of thing. i didnt get a travel card with my kit i dont think. when i first had my ostomy i did wear depends for the first couple weeks. i didnt like it though because i felt weird. my mom used to sing the "im a big kid now" jungle at me. i had another leak, but in the day time, due to a hole in the wafer that i didnt 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
Reply to Ben38

ben38

they were up till a couple weeks ago, few and far between. in the last 2 weeks i have had 4 leaks now. two were do to defective bags (there was a hole in the same place on both bag) 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
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

Hey Lee, I just had a night time leak yesterday morning… I woke up at 7am and usually am half asleep when I do a finger check of the skin around the wafer to make sure it was dry, and suddenly realized I’ve been leaking for a while! I wake up in a panic and realize 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 my right side of the 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 to 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
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 till 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 tshirts. But my ostomy is up higher than most people's. Several inches away from my waist line. I do deep breathing when I go to bed. I am going to try the 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

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