Fear of Leaks: Sleepless Nights!

Hi everyone.

I am so tired but cannot sleep...the fear of having a leak keeps me awake even though I am here alone...Does anyone else have this problem? I've had a permanent ileostomy for 18 years due to ulcerative colitis and used to feel so lonely and depressed. This site has been a godsend and after meeting so many wonderful people and reading their ostomy journeys, I now feel part of a huge family. We all have good and bad days but we are alive....thank you all for your friendship and take good care of yourselves.

Best wishes,

Angela

Britathrt60.... Hey, I really think each one of us at times worries about leaking. Angela, have you talked to the doctor about your sleeping pattern and worries? Listen, even if you didn't have an ostomy, we never have control over the intestines. Please don't beat yourself up! I go to sleep, but I have a plastic shower curtain under my fitted sheet. On top of the fitted sheet, I have a cotton liner and a disposable liner placed under me. Sure, no one wants to soil themselves, but some things cannot be helped. If that even happens, no one will know but you... You have to sleep to live... Please talk to your doctor, perhaps he can prescribe something for you to relax. I hope this helped, hang in there Angela.

Angel

Hi. Yes, I have the same problem. I can't sleep either. It's not fear of a leak that does it to me, it's PTSD. I'm only about a year into this ostomy thing and I can't seem to get the surgery and everything else I went through out of my head. It comes back, especially, when I try to sleep. I'm hoping it'll go away eventually. I hope your fears do too. Easier said than done, though. Isn't it?

Wish you the best. You take care of yourself too.

Sleepless in Fargo

I was always a side sleeper, but it causes leaks, so for two years I slept on the sofa to retrain myself to sleep on my back. I use a Chuck pad under the sheets. Unfortunately, I'm sleeping on a bed now and always roll on my side. I leaked three days in a row. Now I'm a bit frustrated. I'm getting a long pillow to try and prevent that. Also, I find 420 to work for sleeping and appetite. The hospital Dr. recommended it. I will say before the surgery, I couldn't make it from the bed to the bathroom. Lots of accidents. Every wake up, look down to realize the Goodyear blimp is taped to your side, lol. Please, no Hindenburg, don't blow up! Hang in there!

Hi, just see your Dr. I have a sleep disorder and see a neurologist for it. I have to take something to make me sleep and stay asleep. Sometimes this doesn't work. It will make you very tired indeed. I got a waterproof mattress pad. I also end up on my side. I have to say since I use the pad, it has relieved my anxiety about leaking on the bed. Take care. We are all here for you.

Rebecca

Hello Angela. As Rebecca says, do have this sleeplessness checked out properly. It might be something that can be alleviated and might not even be anything to do with the stoma effect. When I was checked out, they found I had sleep apnoea (which I knew nothing about) They gave me a breathing machine  (CPAP) Continuous Positive Air Pressure, and I have never looked back. It changed my whole waking life having cured the exreme tiredness I felt during the day after not sleeping at nights. I'm not saying that you have this, but it pays to have a thorough check on these things to ascertain more precisely what is going on.

Best wishes

Bill 

Britathrt60--I'm four years in and still suffering from diagnosed transitional PTSD. Problem is, transitional PTSD won't go away without resolving the causation, and being unable to change what happened to me keeps me from feeling that is possible. Whenever I try to sleep, my mind immediately goes to my situation. I haven't been able to get over it, and I doubt I will ever forgive it because my surgery was not necessary and never should have happened, and there is nothing I can do about it. The lawsuit supposedly was to give me justice, but justice doesn't cover my emotions and the money has not bought sleep and happiness. I sleep only in a recliner, in roughly 2-hour spurts, getting up to empty to avoid leaks. I don't go out, except for necessary doctor's appointments.

The above advice is sound. An antidepressant may help with your feelings, and a sleep aid may help you to get the much-needed sleep. This may seem hypocritical coming from someone who has been unable to resolve these issues for myself, but please don't let my shortcomings and inabilities interfere with your own sound judgment. This site has proven very supportive, so be sure to avail yourself of the good intentions of these members.

Peace

Hey britathrt60, I agree, the sleeplessness really messes with your health and confidence. I used a waterproof mattress protector and large towels. Even wrapped my abdomen (wasn't a good idea sadly). I would set alarms to get up and empty, used a pregnancy/body pillow to help me rest/sleep on my side as it let me have the bag resting on something and had a hand towel over the stoma. (I also experimented with different angles (had a two-piece) which, for me, made a huge difference. Placing it almost horizontal let me lean it on the pillow. It felt like someone holding the stoma :) ).

Unfortunately, even minus the stoma, sleeplessness can still occur. As others stated above, the traumas seem endless.

Keep talking, keep asking, and be kind to yourself.

Hey britathrt60,

Sleeping is a prerequisite; you need it.

I understand the anxiety about having a leakage. I understand the emotional trauma around clearing up.

All of the above measures mentioned by Otomates are sound preventive measures. Plan for the worst and any potential damage can be minimized.

It is not easy. Be kind to yourself.

Collie

I used to be afraid of leaks at night and had several until I started wearing an ostomy wrap. In addition, I used the seals or Brava strips to help secure the wafer. I also sometimes wear a belt. Doing these things helped keep my pouch from moving around. I wake up at least once a night anyway to use the bathroom, so when I do, I just empty then. I started out with a plastic under sheet or towel on top. But now I don't bother. I'm a side sleeper and tried on my back, but when I try falling asleep on my back, it triggers my PTSD and makes me think I'm back in the hospital. So I found that the wrap gives me confidence to sleep on my side. Occasionally, I'll wake up because my hand touches it and I realize it's a giant balloon, so I quickly go empty! I hope you can find a way to make it work for you.

Hi. I know exactly how you feel. I have also had an ileostomy due to UC about 16 years ago. I haven't had a night without a broken sleep since then. I do sleep but never in a deep sleep as I am always conscious of whether the pouch needs to be emptied. I wake constantly through the night to check it and always get up at least once.

To be fair, in the whole time I have only had a leakage in the night maybe 3 or 4 times which is pretty good in 16 years. And that was in the beginning and once when I had a blockage and then it blew out! Let's be honest when it happens it is horrible, especially when you sleep with your partner, it is quite embarrassing.

If you eat a large meal close to bedtime, it will be more likely you will need to empty your pouch in the night. On the days where I have had my large meal in the middle of the day and just a small snack at night, there is a lot less output so I can sleep a little easier. I am a side sleeper which is fine at the start of the night as I always empty before going to bed. Usually about 4 hours in, I go to the bathroom but always find it hard to get back to sleep.

Maybe setting the alarm to ensure you get up to empty your pouch would work as it would give you peace of mind. I am thinking of trying this advice myself so I can have more of a deep sleep. It is so true we cannot function properly without a good night's sleep. I am sick of being constantly tired too.

Good luck with your plan going forward :)

Hey Donz.... I was sleeping on a couch the last couple of years, so I could only sleep on my back. Once I got used to that, I tried a bed out. So far, no night leaks. One time, I slept so deep I never woke to empty myself. I thought it was going to explode! I did have to use an alarm clock in the beginning, every two hours. I do miss a deep night's sleep.

Thank you all so much for your help and understanding... and for all your awesome suggestions... I am so grateful to you all...

Angela

I'm not sure, but I think I saw a nighttime drainage apparatus in the Edge Park catalog for ileostomy users. Research it online, there's something out there to help ease your minds so you all can get some well-needed sleep. I hope this helps. Good luck to you all. Crazy Granny.

Thank you for liking my profile. I like yours also. I wish you lived a bit closer to me, that way we could do things together. About your fear of leaks when you sleep, I have put a mattress cover made of plastic over my mattress. It has cotton material in it so you don't hear the plastic. Oh, though in the summer time I do sweat a bit. But at least I don't have to worry if I get a leak and spoil my mattress. And if I do get a leak, it is easy enough to wash my sheets. But I usually don't get leaks, I think I have had only 2 in over a year. Good luck.

Hi Bluejay...thank you for responding to my message...I really like your profile and wish we lived closer too...distance is always a problem but who knows, maybe one day we can meet. I like the idea of a plastic mattress cover that has cotton material in it...I'll definitely check it out.   I don't have many leaks either and am alone, so if it happens it's not too bad...having an ostomy definitely puts a damper on dating...no one can possibly understand unless they have one. This is an awesome site to meet others with the same...I'm so glad you wrote to me Bluejay, thank you again...take care...keep in touch.

Angela