Good morning everyone. I have had my colostomy since March 2020 and have not had a good night's sleep since.
I am constantly waking up to check to make sure my pouch is okay... not squished, not full, etc. Does anyone get a good night's sleep? And if so, what is your secret?
I have sleep problems also, but usually after a few nights with poor sleep, I am so tired that I get a good one in. I stay in bed after my wife gets up and can get a couple more hours of sleep before noon.
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Hello SallyNBC.
The subject of sleep is quite interesting and there has been a great deal of research done in this area. Sleep deprivation can result in serious mental health problems so it should be addressed and resolved asap.
Research suggests that many people think they are not getting a good night’s sleep when in fact they are getting ‘enough’ or an ‘adequate’ amount. Researchers found that people who simply ‘rest’ can gain as much ‘benefit’ as those who think they have been ‘asleep’.
Whereas others believe they are sleeping well, yet are not getting the benefit from their experiences.
As an example of this phenomenon, I will share with you my own and my wife’s different experiences of ‘sleep’.
I was always convinced that I was a ’good’ sleeper because I would go to bed/sleep and not wake up until morning. I also had the ability to sleep anywhere and everywhere no matter what disturbances were going on around me. I would sleep on the train to and from work to such an extent that I would have to set an alarm to wake me before I reached my relevant station. I would also boast that I could even go to sleep standing up, in broad daylight.
My wife was the opposite, in that she would wake up at the slightest sound or other disturbances. Amongst many other things that disturbed her sleep, she complained about my snoring and stopping breathing.
Being a dutiful husband, I had an operation on my uvula, which was supposed to be an instant cure! Needless to say, despite being extremely painful and expensive, the operation was a total failure.
I then insisted on being admitted to a specialist sleep and respiratory clinic for observation . After the first night there, they instantly diagnosed me as having a condition called ‘sleep apnoea’ . Apparently, I was kidding myself when thinking that I slept well, because they ‘proved’ that I was waking up at least 50 (yes 50!) times per hour because I had stopped breathing (and I had never realised this). They put me on a Continuous Positive Air Pressure (CPAP) machine and, like a miracle, overnight I was ‘cured’ . The snoring stopped and I no longer needed to ‘sleep’ at all times of the day as well as night.
My wife also started to get a ‘good’ night’s sleep as she no longer needed to worry about whether I was going to wake up from long periods of not breathing.
This is my ‘secret’ for a good night’s sleep. But it should not be kept secret because sometimes these things need to be shared to help others.
That aside: many of my ex-clients suffered with disturbed sleep , mostly because of nightmares and/or anxiety of one sort or another. I rarely ever recommended medication for their conditions because the side-effects and addiction problems could eventually become worse than their lack of sleep.
However, some of them did find relief in things like counselling; hypnotism; yoga; and the many other forms of relaxation techniques available.
Almost all of my ex-clients had been abused in one form or another and, once the root-cause of their sleep disturbances were identified, it became relatively easy to help them find a solution to their present day problems.
I was tempted to relay some of those stories here, but feel that it would stray too far away from your original post. ( if I have not done that already – sorry!)
I hope that you find a solution soon.
Best wishes
Bill
Hi Sally,
I have insomnia thanks to chemo and menopause, and I use cannabis gummies. I take two (5 mg each) about an hour before bed, and they relax me so I can finally fall asleep. Make sure to get Indica gummies as the Indica plant is what gives your body that total body high. I don't smoke weed as I don't want to damage my lungs, but I swear by ingesting it. I'd much rather take a natural remedy than a synthetic drug made in a lab. You can get cannabis gummies at most dispensaries - just be sure they are Indica. Good luck!
Hi Sally, I wish I had a solution to offer you, but I'm right there with you. I've had problems with sleep for a few years now, and getting the ostomy has certainly not helped. I have to get up to pee, and now I also have to get up to empty my pouch, and my need to empty and need to pee don't always coordinate with each other! I'm like Xnine, I'll have few bad nights and then utter exhaustion finally gives me a good night. Sometimes I think it's anxiety about not sleeping that keeps me from sleeping, a self-fulfilling prophecy! I've tried CBD gels and sometimes I think they are helping, but it may just be a placebo effect. I'm a little afraid to try the THC ones as I don't like the high that comes with it and I'm afraid that all it would do is make me stoned, lying in bed trying to get to sleep! If you haven't tried either, that might be a place to start, as many people do swear by them.
Terry
Thanks, Terry! I was thinking the same thing... What if I get stoned and then lay wide awake, paranoid. LOL
Wish I was arriving here with the solution for a sleep problem. I have always been a world-class sleeper (one night the fire alarms went off, my husband got a ladder to get to the one in our bedroom that was the culprit... and then told me about it the next morning. I slept right through it.
But since my 1/3/22 colostomy surgery, that sleep talent is gone, gone, gone. I'm not worried about my bag at night at all, don't even consider it. I just don't get the deep sleep I so desire.
Someone here mentioned taking 10 mg Indica gummies. Holy cow, for me, that would be a 4-day high. I have Indica chocolate 5 mg a square. 5 mg and I'm uncomfortably high. Hate it. 2.5 mg and I get relaxed and sleep better. But then my husband and dog rise at 7 am, and it's like a herd of elephants coming through. I wanna sleep forever but can't get back to sleep. And often have a bit of a depressing hangover from that measly 2.5 mg Indica chocolate.
Sorry, I offer nothing but experience, but maybe trying Indica would be a good way to go.
Hi! So, a few issues here, sleep and the bag... I used to lie awake and want to check my bag to make sure it wasn't full. After a few months, I realized that if I don't check it, it's fine until I wake up. So, I programmed my brain not to touch or check the bag until it's time to wake up! And it has been perfect, no incidents! Now, for sleep, I use THC oil. It helps with a great 8-9 hour sleep, no hangover, and if I do wake up, I fall back to sleep. No negative thoughts of cancer either. I am stage 4. I use about 30mg of oil. It works for me. Yes, I am completely stoned for about an hour before I fall asleep, but I enjoy this time with my wife, catching up on shows. Just my thoughts and how I get great night sleeps!
I have a night bag which connects to the bottom of my day pouch. This bag holds two liters of liquid. There is a long hose which goes from the pouch to the bag. I sleep well as I have no reason to get up at night.
Hi Sally,
I too had surgery in March of 2020. I have the same concerns as you. I've had two "accidents" during the night. Both were because of a full bag. I set the alarm on my phone for 4 hours after I lay down. The alarm goes off, I check the bag (most times empty it) and try to fall back to sleep. Having confidence in the phone alarm relieves much anxiety. I think the days of 6-8 hours of straight sleep are gone for me. It's a fair trade for how life was prior to surgery.
Good health and rest to you!
SharkFan
I'm afraid my answer is medication - but not intentionally. Because of neuropathy from my chemo, my neurologist put me on 10 mg amitriptyline. Zonked me out every night. Because it got worse over time, my dose has been doubled - now I have trouble waking up in the morning! Sorry, not an answer for you, just a side effect of life after cancer - but at least it's LIFE after cancer! (Hit the 10-year mark! Celebrations!!!)
Hi Sally,
Until I learned what to eat, I had many accidents, especially because my ileostomy is prone to leakage. I don't sleep that well now for a few other reasons, but there's a couple things that helped. I fold over a hand towel (long ways) and roll the ends in and center it over my ostomy. Should there be an accident, it is contained.
Since I used to check it constantly too, especially since it burns if output hasn't fallen into the bag yet. I still do that, but I have to make my way under the center of the towel, but at least I'm less apt to have my hand rest on it since this too can cause accidents.
I also protect my bed with a puppy pad, then a flat towel* and a partial flannel sheet.
*(Beach towels often don't have stitching on either end that is prone to shrinkage, making it too bumpy to sleep on.)
I try to make it as gentle on the eyes since I can't deal with too many patterns and colors. I still set an alarm for every three hours, which is less than ideal, but the quality of sleep is better knowing that I have minimized the mess. I feel for all of us.
I completely relate to this, Terry. I try to use meditative or cognitive strategies (e.g. naming actors, musicians, etc.) or breathing techniques. Mostly, these are to no avail, especially when I'm worrying or obsessing about my very handsome friend! I do crash and get a good night's sleep eventually.
Sometimes it's hard to sleep when thinking about the opposite sex. Your mind kinda gets all flustered.
Hmm.. Sleep?? What's that?? Since 2016, I have not had a decent night's sleep with the bag.
My fear of taking any aids to help sleep is rolling over with a full bag.
Need a picture? Been there, done it?
No thanks.
I relieve my bag and my urine at the same time. Roughly 3 to 4 times at night.
I can set my watch to it.
Try getting back to sleep after dumping your bag out at 1, 3, 5 a.m.?
Now I wonder if sleeping upright in a recliner or chair lessens the need and worry "to go".
Sleepless in NJ.
Warrior.
