Advice please, how to sleep for at least six hours at night…..

I had my Ileostomy 9 years ago and have had a big learning curve all this time. For about 6 years following the op I was using Dansac bags recommended by hospital. I carried on using these bags, simply because I knew no better. I thought that bags that occasionally leaked. Bags that left loads of glue behind when removed, therefore having to use spray glue solvent, and bags becoming blown up like balloons was normal.

Then I read and advert for free sample from coloplast, I tried their "Sensura mio" bags and never looked back. No more glue remover, no more leaks, so comfortable and soft, forget it's there, My big problem now is the prescription supplier expecting me to order the average 28 bags a month, when I can actual shower each day and still wear a bag for a week, try to change every 3rd day, but completely forget. My original bags would have fell off in 3 days. So simple to empty, no inflamation, never ever come unstuck. The other big advantage for me is that adhesive is so good when removing bag it's like having a wax hair removal at same time.

Best of luck  John

Hi Artsie, thanks for the reply to the other post, sounds as if you had quite an operation. Mine was similar but without the extra cut!

I had an ileostomy for a year and I don't sleep well at the best of times so I would wake up and feel the bag, normally it would be blown up with air so I had to empty it once a night. I tried to keep my output fairly thick because my stoma was a slightly odd shape and if was difficult to get a perfect seal around it and although it didn't leak it could irritate the skin if too runny. I did find at night though that thick output didn't pass down the bag and I ended up squeezing it out like toothpaste.

At six weeks from the op I would suggest that staying on the 'eat small and more often' is a good plan. If you find the output is too thick, and assuming you aren't taking loperamide, then perhaps you need to drink more? It is difficult getting the balance right so trial and error.

If you sleep well and are afraid of sleeping through an accident and you have been having a regular changing time at night I have read of people who set their alarm for that time so can go to sleep ok at the start of the night.  I was never good at counting sheep, not enough fingers and toes, so if I can't sleep my 'go to' is an old walkman music thingy and I find that if I listen to some fairly light music I normally don't ever hear the end. I might try and convert to my mobile and use Spotify sometime!

Not being able to sleep is really frustrating thing, I completely sympathise with you and hope you find a way around it.

All the best, John

Hi John, thanks for your reply, it’s comforting to understand that what I’m experiencing is par for the course.  I think you’re right about me not drinking enough during the evenings, and spot on with toothpaste output. So annoying to have to really focus on sorting it when I’m half asleep. I will try to drink more fluids at night. I generally do eat a lot less than I used to. I will experiment with your suggestions. 
thanks again. 
Artsie

Just quick update for others reading this who are having same sleep deprivation as I did.

Six weeks since operation which left me with two incisions either side of tum, one on naval and caesarean type lower down, so of course I had to sleep on my back and I would wake when uncomfortable or the bag needed emptying. 
Last night was the first rested sleep I had because I was able to sleep on my side, had such a shock when I woke up to feel a huge bag calling for my attention and as I had a little Galaxy chocolate and small red wine as it was my birthday the output was perfect.  Now please don’t think I am advising chocolate and wine for a nights sleep however it did mean I was still sleepy and went back.

Long may this continue, not the wine and chocolate, the sleep.

Hi Artsie, good to hear that. Happy Birthday for yesterday and if the wine and chocolate works for you, go for it!

Cheers, John

Happy belated birthday Artsie .

For the first few years after my initial stoma I used to find I could eat and drink most things until 1pm. After that my output was hit and miss.

Soft fruits like Strawberries or raspberries etc can still present problems for me whatever time of day I eat them. Thank goodness for bananas and stewed apple.

forgot to say sleeping on my back with a pillow either side of me helped me sleep - don't know why.

Thanks for Birthday wishes Crankshaft and KathH2. I feel so much better having a comfy night. Thanks for all your help. Best wishes 

Happy belated birthday from me too Artsie. I used to wake up every 2 hours in the night to empty my bag but used to do it half asleep! The most I ever went was 4 hours (after quite a bit of alcohol!) and I had to support the bag with both hands! I used to sleep on my side but used to fold a small towel up and pop it under the bag so it felt a bit supported?

Hope you manage lots more comfy nights

Take care

Karen x

ps I remember going on an ‘After Cancer’ course and a bloke there was complaining that his stoma didn’t seem to realise that the clocks had changed and he was having to get up an hour earlier………I had to bite my tongue

Karen  I am a two hour girl too. It just makes me feel so annoyed that I’d had my new borns and was sleep deprived years ago and it’s  like Groundhog Day.

You did make me chuckle mentioning the man complaining about a lie in.

Wow. A good nights six hours would make me happy.

Whoopee had me up two hourly last night and there’s me thinking I’d cracked it. Thanks for you message and birthday wishes.

kind regards Artsie