That is me all the way!!!! I have had insomina for over 6 years now. i go to the bathroom 14-20X a day, I am always tired!!! I know its hard now but the body adapts, that is what makes us resilient. Since you have no colon, I think this is your new normal. My first year was hard, I have not had an 8hr sleep straight since Takedown. Most of us get up overnight to go to the bathroom at least once.

But do not worry, you will get use to things and it will become second nature. Try to get more naps, that is what I do. If I cannot get a nap in, my body seems to find energy some how as I think yours will too.

Everything will be fine dear

I do not know about anyone else but other than the period just post-op due to anesthesia and pain/suture lines or if I am having another medical problem, I sleep fine...yes, if I am not careful and eat too early or late my pouch will wake me up but I have very active daytime life...exercise, activity, breathing exercises plus work, etc so that by the time I hit the bed I usually pass out...

I have found that the best sleeping aid in the world (for me) is a heating pad...I have a cherry pit one that is about 2 feet long and 6 inches wide...3 mins in the microwave...I lay it down lengthwise on the bed and then lay flat on it...along my spine...the heat penetrates the muscles and within mins (seconds?) my whole nervous system seems to relax, muscle tension seems to release, my lower back unknots...and I fall asleep...(sometimes I turn it the other way, under my hips/lower back/pouch and that reduces all kinds of pain)...

It may not do the trick for you but it could become part of an arsenal of tricks that can help you to fall back to sleep normally.

Sharon

Thank you!

I definitely feel for you.  I had terrible insomnia when I was really sick from a long flare with UC.  It is the worst, not being able to sleep.  I tried several ways to get to sleep and nothing helped at the time.  I somehow just got through it and now have no trouble sleeping.  

Thank you!

JoeJoe,

Have you had any sleep studies performed?  I am a lifelong sufferer from insomnia ( as was my late mother, and my sister, neither of whom had IBD), but I find it comes and goes in unpredictable cycles.  The sleep study I had done found that I had a very low % of REM sleep (4% as opposed to 20% which I think is normal), as well as mild sleep apnea.  I was recommended to use a CPAP and tried it, but I couldn't sleep with it.  Anyway, a sleep study would quantify your amount of REM sleep and whether you have any sleep apnea that needs to be treated.

I did have sleep issues that predated colectomy, however they may have also been related to the large dosages of prednisone I was consuming until I had colectomy.  But like I said, there is no rhyme or reason to the quality of my sleep.  I tend to sleep better when I have had busy, physically exhausting days.  I think exercise and activity helps.

The only time I had real problems with sleep was when I still an bag. I was always afraid I'd turn over on it on my sleep. Wouldn't that have nice. I guess like CT, before the bag with all the steroids were not conducive to sleep either. Maybe try some tylenol PM or talk to doctor about something a bit stronger. Hope it ends for you soon.

Aimee

I had worse sleep with the bag emptying it every two hours.but yeah i find it hard to get more than 4 hours but when you do it feels amazing.I was thinking of trying melatonin or b12 plus calcium, magnesium.I remember a guy in hospital who was given a sleeping pill each night and he slept until they woke him up in the morning.I was so jealous but I'd probably wake up to a huge mess.but the first night before he took the sleeping pill he snored the worse I've ever heard but once he took the pill he was silent.so maybe it puts your whole body to sleep including your bowels? I don't know.would be nice though.

@JoeJoe Are you waking with a need to use the toilet, or is it just unsettled sleep? The potential solutions are very different between the two.

Scott, I have the illestomy bag. It's just a matter of not being able to sleep. I'll sleep for like 2 hours then will be up most of the night, then go back to sleep at like 5-6am for 2=3 hours. Just can't sleep.

I don't sleep well. If I wake up to go the bathroom I am sometimes up for a little while. I've had issues since my 1st surgery.

thank you. That is the same issue with myself too. Sure takes some getting used to.

I have a bag and have a similar problem.  I recently took 1 mg. of sublingual melatonin every night for a month, and am doing a better.  I've also found that mindful breathing is extremely helpful.  You can find many breathing exercises for sleep if you google that.  I still have to get up at least once a night to empty the bag, but I can manage that.  Hope you find an answer soon, these wakeful nights are miserable.

Thank you. I hate having the bag so much. My second surgery got put off another month, so I have to wait two more months till the second surgery, then wait about another two months till the final and third surgery.

The melatonin suggestion is probably worth a try, and is quite safe. Strangely enough melatonin seems to work best at lower doses. @n/a has it right at 1 mg - you might have to shop around to find that dose.

I use SuperiorSource for 1 mg. sublingual melatonin tablets.  Available at Amazon, Vitacost and other sources.

I started experimenting with marijuana edibles to help with sleep. For me they work great. I don't really get high off them or anything. I take a very low dose but it's just enough to chill me out. And even when I get up to go I'm able to pass right out as soon as I'm done.

It's worth a try.

I’ve had Chronic insomnia for years. Have had pouch since 1995. First used melatonin but I built up a tolerance at 10mgs so had to go off of it. Have used other sleep aids - gravol, CBD, THC, sleep meds, anti anxiety mEd’s, mindful sleep exercises, music, etc. Nothing works fully for me and finding as I age it gets worse.   Right now I am on 10mgs of Amitriptyline (an old anti depressant used for sleep now) and 20mgs indica THC butter in my tea per night. I get between 4-6 hrs sleep now.

Since having the bag removed and returning to work I sleep alot better even fallen asleep on the couch for eight hours at a time.sleep is very important to quality of life.you will get there JoeJoe it just takes time.

I really struggled with insomnia after my surgeries. I still do some at 1 year, but its better. I used to dread bedtime because I knew I'd be awake many times.

@Former Member posted:

Since having the bag removed and returning to work I sleep alot better even fallen asleep on the couch for eight hours at a time.sleep is very important to quality of life.you will get there JoeJoe it just takes time.

WoW! I have not slept 8 hours in over 6 years lol.

@n/a posted:

I use SuperiorSource for 1 mg. sublingual melatonin tablets.  Available at Amazon, Vitacost and other sources.

Thanks for sharing the melatonin you use, I just ordered some, hoping they work! 😴

I hope they work for you as well.  Just a heads-up - melatonin can give you incredibly vivid, crazy dreams.  Personally, I rather enjoyed having dreams again!

As I posted in the Medical Marijuana thread, my sister (who also has insomnia) told me these cannabis edibles work very well for sleep issues:

https://www.kivaconfections.co...avor/saigon-cinnamon

She lives in CA where marijuana is legal so she can just buy it. If you live in a medical marijuana state you can get a prescription from your doctor.

Be careful with melatonin. Melatonin made me feel depressed, be careful.

Sharon, your response struck a nerve with me. I use a microwavable buckwheat pellet sack around my neck for migraine relief and I wear bootie socks to bed. I don't have a problem falling asleep, but warm feet are relaxing and send me to slumberland even more quickly. Will try using the buckwheat sack on my back.

Here's another tip that might help those who have sleep issues. The advice I heard is to get ready for bed a couple of hours before going to sleep. The bright light in the bathroom while brushing teeth etc. makes your body think it's daytime again and wakes it up. Avoid bright light of any kind, including electronic devices for at least a couple of hours before slumber.

@roseviolet posted:

Here's another tip that might help those who have sleep issues. The advice I heard is to get ready for bed a couple of hours before going to sleep. The bright light in the bathroom while brushing teeth etc. makes your body think it's daytime again and wakes it up. Avoid bright light of any kind, including electronic devices for at least a couple of hours before slumber.

Thanks hon!!!! I needed to see this!