I found not eating after 6pm helpful regarding sleep. For a while in the early days if I stuck to the above meant I only got up once in the night about 2am to empty the bag.
For some unknown reason it helped if I didn't look at the clock to see the time.
As you mentioned getting five or six hours of unbroken sleep is bliss. I often suffered with pain in my stomach which usually meant an adhesions flareup. I was advised by stoma nursing staff to take co-codamol. This worked threefold; It offered pain relief, slowed down my output and helped me sleep. I'm not advising anyone to take this medication. Professional medical advice is vital. This medication is codeine and paracetamol combined so needs careful monitoring.
Nick X - this is tricky but in the early days when I had a lot of sore skin (which bled) round the stoma (excoriation they called it) armed with gauze squares, old towels and waterproof bed squares I surrounded the uncovered stoma site to let the air get to it. I had to stay awake to manage it but it worked for me and the skin started to heal. I took this advice from my Stoma nurse. I did this a few times during the day and night for a few weeks. I'm not suggesting you do this but keep pressing your stoma nurses for advice.
Kath
"don't think about tomorrow"
Nick X - to this day I have 'nodgels' (?) at the edge of my Stoma site - they go all the way around the stoma and bleed a bit but I have no pain. My Stoma nurses have seen these. They weren't too worried as long as there was no actual blood in my stools.
I'm rather proud of my firm stools (anti depressant meds responsible for their firmness). Strange ice cream cornets come to mind - minus the 99 flake.
Keep on at them they need to advise you. I know how exhausting and exasperating this can be - and this was before the virus.
Kath
"don't think about tomorrow"
Hi Kath. Are the nodules around your stoma granulomas? I had this earlier this year. The treatment was done at home by the stoma nurses as the stoma clinic is not running at the moment due to Covid. The treatment is silver nitrate and is done weekly for 4 weeks. They also recommended that I used Hyperseal washers with my pouches but I find I have leaks when I use them.
Love Kim x
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