Jambo,
Last week I told you that for years my brain stood guard over the bag all night. This is the story of how I found that out, what I changed, and what my own numbers really show. Including the bad nights.
Measuring instead of assuming
In January this year I stopped assuming my nights were simply the price of a stoma, and started measuring. My Apple Watch recorded every night: awake, REM, core and deep sleep, heart rate. Every evening I logged what I ate, when I drank, when I bathed, when I went to bed, and every time I woke. Every morning I gave all of it to an AI and asked one question: why?
The AI worked out what was causing each problem and proposed a solution. I tested each one on myself, one night at a time. Some failed, some needed tweaks, and the ones that survived became my routine. On my own it would have taken me years, and some of it I would never have found.
Colorectal cancer left me three things that come out at night: a colostomy, nerve damage, and a body that runs cold. Here is what each one was doing to my sleep.
1. A colostomy: guard duty
On the night of 15 January I changed my pouch just before bed, the way I always had.
A new pouch is rigid. Its walls lie flat against each other. That night the output had nowhere to go. It piled up at the top of the bag and pushed back towards the flange. Half asleep, I kept adjusting it by hand to clear the pile. My watch showed that deep sleep did not come until around three in the morning. When the alarm rang, I pressed snooze.
When I gave the AI that night’s data, it diagnosed why I was waking up. Not a disease: the cause of my bad nights. And it was something nobody had ever told me. Deep sleep is where you lose sensation. My brain would not let go of sensation while it was watching the bag for a leak. It was standing guard.
I tested it. These are the changes that stayed:
I change the pouch three to four hours before bed, never at bedtime. By the time I sleep, it has warmed, softened and opened up.
I blow a small puff of air into a new pouch before I put it on, so the walls do not stick together.
A little baby oil inside, so the output slides down instead of piling up. I have used baby oil for thirteen years, and it works for me.
The air and the oil are known tricks. What nobody told me is that a brand-new pouch is stiff and needs hours to soften, and that changing it at bedtime was the cause of my stoma trouble at night.
2. Nerve damage: cold feet
During chemotherapy I could not touch metal below seventy degrees without pain. That stopped when treatment ended. What stayed is the cold in my feet. That I know is peripheral neuropathy: nerve damage from the chemotherapy. Thirteen years on, my feet always feel cold, so for years I went to bed in double socks.
3. A body that runs cold, and overheats
My whole body also feels colder than it did before treatment, and that I cannot yet explain. It could be nerve damage, cell damage or some other change in my body’s systems. It is still on my list to research.
So I slept under three blankets as well as the socks. But feeling cold is not the same as being cold. My body was telling me it was cold while, under all those layers, it was overheating, and my data kept showing wake-ups at one in the morning because I was too hot. The AI took the layers apart one by one. Today I sleep under a single bed sheet, with no socks.
It also gave me the best routine I have found in my life: a bath every night, then straight to bed. My body temperature stays steady all night, and I sleep better than I have in years.
And one more thief: the bladder
Night after night I also woke at about ten past one to pee. The AI did the arithmetic: I was drinking golden milk at a quarter past eight, and my kidneys took about five hours to pass it. Quarter past eight plus five hours is quarter past one.
Today my routine is simple. No water after my six o’clock dinner. A pinch of salt with a sip of warm water. And Viparita Karani, the legs-up-the-wall yoga pose, before bed. When I follow it, I sleep through. When I don’t, I wake about five hours after my last drink. I am still monitoring it.
What the numbers actually say
I want to be honest here, because honesty is the point of measuring.
Between February and early April I logged 71 nights in full. My deep sleep averaged about 40 minutes. My target was 45. I reached it on 28 of those nights. My best night of all, 26 January, was 69 minutes of deep sleep with no wake-up to pee.
My worst night was 4 minutes. I had worn socks to bed against my own rule, woke up hot at five past one, and woke again at ten past four from a stressful dream. One hot night and one bad dream, and the protocol could not save me.
That taught me the most important lesson of all. A protocol is not a switch. It is a habit. It works on the nights I work it.
And this October
It stopped working this month, because I stopped working it.
From 1 to 6 October I travelled to Houston and Dallas for a wedding. From 10 to 17 October I was in New England. In between there was this blog, LinkedIn, preparing for the Congress in Nairobi, my business and my home. My schedules slipped, my logs have gaps, and my sleep shows it.
So tonight I start again: the pouch changed early, no water after dinner, my bath, one sheet and no socks. That is the other thing measuring teaches you: you always know where to start.
Your turn. This week, note what time you wake in the night and what you did in the four hours before. Take your notes to your ostomy nurse.
I am a patient, not a doctor. This is what worked for my body, and it may not work for yours. Please do not cut your fluids or change your routine without asking your ostomy nurse or doctor first, because dehydration is a real risk with an ostomy.
This Wednesday, 28 October: I’m speaking at the Global CRC Congress. That day I fly home to Nairobi, the city where I was born, to speak there on 5 November.