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:

1. 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.

2. I blow a small puff of air into a new pouch before I put it on, so the walls do not stick together.

3. 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.

In my first post I promised you this one for Wednesday 14 October. It is a week late. I found errors in the data behind another project of mine, and spent the week fixing them. Build on bad data and everything on top is wrong.

In the summer of 2013 a surgeon took out the part of me that was trying to kill me, and brought the end of my colon out through a small opening on the left side of my belly. That opening is the stoma. Over it I wear a bag. I will wear one for the rest of my life.

Before the operation I was frightened, and to be honest a little pessimistic. My daughter, Apeksha, turned me around. She pointed to my cousin, who was fighting cancer in her brain. “She has only one brain and no options,” she said. “Look at you. They cut here, join it at another place, attach a device, and you are up and running.” My cousin had been given six months to live. She lived four more years.

She was right. But nobody tells you what “up and running” actually involves.

The first weeks

Before the surgery, my ostomy nurse and my surgeon marked the spot where the stoma would go: on my left, just below the line of my belly button.
They chose it so that I could wear normal clothes, sit normally and be a normal person. Thirteen years later I am grateful for that mark every morning when I get dressed.

The first days after were rough, and the gas pains were the worst. Surgery puts the bowel to sleep, and until it wakes up, nothing moves. Before the operation my body had its own system: stool reached the rectum, a reflex told me it was time, and I decided when to go. Now the rectum was gone, and that system with it. My bowel had to learn a new exit, like a child learning potty habits all over again.

Apeksha had done some research and told me to drink tea. I had not tasted tea in fifty-six years. I drank it. The gas came out, my stoma came alive, and I felt I was in heaven. Later I learned that surgeons in Germany had published a trial less than a year before my operation: patients who drank coffee after bowel surgery got their bowels working sooner. Nobody on my ward had mentioned it. For me, it was tea.

In the hospital my ostomy nurse, Michele, showed me how to change the bag. I called her my Guru then, and I still do. At home I did my first change myself, as the boss of the operation. In the weeks I was too weak, my son Abhishek was my hands: he changed my bags, dressed my wound and bathed me, under my instructions.

The things that actually matter

I promised you four or five things that matter. There are six, and they are what works for my body. Yours may be different, and your ostomy nurse is the person to ask.

1. A two-piece system. The flange stays on the skin; the pouch clicks on and off. It is easier to empty and it is cleaner. I use Hollister’s two-piece with the lockable flange. The lock, with its little handle, gives me confidence. Nobody pays me to say that.

2. Empty early, empty often. A heavy pouch pulls on the appliance and damages the seal. I empty the moment I feel heavy.

3. A little baby oil inside the pouch, so the output slides down instead of sticking.

4. Watch what goes in. The goal is output that is neither hard nor liquid, and what you eat and drink decides it.

5. Give the stoma a bath. You get a clean body, and every day you get a chance to inspect the skin around it for infection or any change.

6. A hernia support belt. I have worn an ostomy support belt for thirteen years, whenever I walk, work or travel. It holds everything in place, so my intestine stays where it belongs. I am always aware I am wearing it. A belt is there for security, and security means there is something to protect.

   

The liners I had to fight for

For some years I used the best product I have ever had: flushable, biodegradable liners that sit inside the pouch. When a liner is full, you flush it away, and the pouch stays clean.

Getting them was a fight. Medicaid did not cover liners at all, and my clinic could give me only two or three pouch changes per appointment. So I paid out of my own pocket, and the price went up every year until a single liner cost 55 cents. It stopped being affordable.

I also wrote to the manufacturer, and I did not hold back about how he was running his business. His reply was calm and professional. He had tried everyone from the government to the corner store, and in his view the big suppliers did not want a product that would cut into their own sales. I have always admired that in North American entrepreneurs: you can push them hard, and they answer with courtesy.

So I did what I have always done in business: I worked around it, and invented my own techniques for a clean, environment-friendly routine. That is a post of its own.

Later, when a supplier sent me poor-quality appliances, I simply changed supplier. Your stoma deserves quality, and you are allowed to choose.

The hard thing nobody told me

I wanted to travel and move around without fear. Nobody told me that a stoma turns you into a man with luggage.

Here is what goes everywhere with me. Pouches. Flanges. Scissors. Adhesive remover. A small air freshener. A small bottle of blue liquid that stops the smell. A travel roll of toilet paper. Loperamide tablets in case of loose motions. My diabetic finger-prick meter. My passport and travel documents. Photographs of my stoma with a letter from my doctor, because in those days the people at the security check had never heard of one. And two small cards from the United Ostomy Associations of America: one for security screening, one that asks a shop or office for urgent use of its restroom.

The meter once helped someone else: a woman in our social circle felt unwell, we measured, found her sugar had dropped, and got sugar into her straight away.

With all that to carry, I researched, and found a travel vest with forty-two pockets. It is a ScotteVest, and nobody pays me to say that either. Everything has its own pocket, and I made myself a pocket map so I know what lives where. The weight sits on my shoulders, not around my stoma. The one I wear now is my second in thirteen years, a birthday gift. I wear my supplies, and I go where I like.

An ordinary day, thirteen years in

Ordinary. That is the point.

At night, when I wake to empty, I record it in an app: the time, whether the output was normal, little or more, and its grade on the Bristol stool scale, the chart clinicians use to describe stool from hard to liquid. During the day I empty as soon as I feel heavy. And I keep the pouch so clean that I can show my stoma to anyone, at any time, to teach them what one looks like.

That is my why. I make the invisible visible, so that others can master their own path, and so the next generation does not have to start where I started.

Thirteen years ago my daughter told me I would be up and running. I am. Not because a stoma is easy, but because I had a good nurse, a careful surgeon, a son who was my hands when I could not use my own, a belt, and a vest with forty-two pockets.

I am a patient, not a doctor. This is what works for me. Your ostomy nurse and your care team decide what works for you.

This Monday, 26 October: How I sleep through the night with a colostomy. For years my brain stood guard over the bag all night. Here is how I learned to stand it down.

My last chemotherapy dose was on the second of February, 2014.

By then I had stopped counting in weeks and started counting in battles. Six of them. Each one three weeks long — fourteen days of Xeloda tablets every twelve hours, one bag of Oxaliplatin through a drip, then a week off so my blood could come back to me. By the fifth battle my veins had had enough of the whole business. The nurses had to go hunting for them. My oncologist offered to put a port in my neck and I said no thank you, I will take the pain, it is only for a few days.

Seven days after that last dose, on the ninth of February, my granddaughter was born.

I had been writing my cancer story for nine months by then. I wrote it on my iPhone, in the Evernote app, lying flat in bed, because after the surgery I could not sit. Thirty pages, typed with two thumbs in the dark. I wrote about the diagnosis in India, at my niece’s wedding, where my friend waited until after the ceremony to tell me. I wrote about the twelve-hour operation. I wrote about the man from administration who came to my bedside at half past seven in the morning, on the day they were going to cut me open, to ask who should decide what happened to my body if things went badly.

Somewhere in all of that, I had started thinking about my own departure. I did not use that word. I am not a man who says the word. I said flight.

And then she landed, and I wrote this at the bottom of the last page:

My granddaughter’s flight has landed — and my flight is cancelled, to make room for her flight.

I did not think much of it at the time. It was one line, written by a tired man on a telephone in a dark room, at the end of a very long document. Thirteen years later I think it may be the truest thing I have ever written, because it turned out not to be a sentiment. It turned out to be a set of instructions.

What a cancelled flight actually means

It does not mean you are free. It means you are still standing in the airport, with all your luggage, and nobody has told you where to go next.

Here is the luggage. A permanent colostomy — a stoma on my left side, and a bag, for the rest of my life. Chemotherapy-induced peripheral neuropathy, which is a long name for the fact that during chemotherapy I could not touch metal below seventy degrees without pain shooting through my fingers, and that thirteen years later my feet still go cold in a way that no sock has ever fixed. No pulling, no pushing, no lifting over ten pounds. No lawn mowing. No snow blowing.

And two numbers given to me by science and medicine: a one-in-four chance that I would die of it, and a twenty-seven percent chance that even if I did not, it would come back and we would begin again. Small numbers on a page. Not small at all when they have your name written next to them.

So for five years I did not really live. I reported. Every three months I went back to the University of Chicago and they scanned me and looked for the enemy, and every three months I got a small piece of my life handed back to me on a temporary basis. You cannot make plans on a three-month lease. You cannot decide what to do with your seventies when you do not know about next April.

Then, in 2018, they told me I was clear.

That is the day the real problem started, and it is the day almost nobody writes about. Cancer treatment gives you a plan for every single day. There is a schedule. There is a room to go to, a drug to take, a person whose job it is to tell you what happens next. And then one afternoon it stops, and they hand you your life back, and there is no protocol at all.

Nobody told me how to sleep with a stoma. Nobody explained why my feet were cold. Nobody sat me down and said: here is how to build the next twenty years. I got a bag, a follow-up schedule, and a car park ticket.

What I decided to do with a cancelled flight

Three things. I have written them on the wall, and I mean them literally, not as a slogan.

1. No medicine until I die. I want to be clear about this one, because it is easily misunderstood. I took every drug they gave me in 2013. All of it. Radiation, Xeloda, Oxaliplatin, morphine, the lot — and I am alive because of it. What I mean is that I have spent thirteen years trying to earn the right not to need any more of it.

2. No nursing home until I die.

3. Stay mobile until I die.

These are not a biohacker's manifesto. They are a grandfather's arithmetic. My granddaughter is twelve years old. In 2013, lying flat after surgery, I could not even change my own bag — my son Abhishek had to do it for me. I am trying to engineer a life where my granddaughter only ever knows her grandfather standing on his own two feet, fully independent, and walking into the room under his own power on the day she gets married.

That is the whole reason. Everything else on this blog — the sleep data, the golden paste, the six categories, the protein formula, the arguing with an AI at three in the morning about a stoma pouch — is downstream of one line I typed with two thumbs in a dark room in February 2014.

What this is

In January of this year I started asking better questions. Not of doctors — I have excellent doctors, and I will name them, and they saved my life. Better questions of myself, and of an AI I have taken to calling my AI Vaidya, at the hours when no clinic is open. Six months and thirty-six chapters later I had a protocol that gets me sixty-nine minutes of deep sleep with a colostomy, and no night wakings, and no tablets.

On the fourth of July I gave the whole system a name. 3BsLog. Independence Day, which I did not plan and now cannot ignore.

I am going to publish all of it here. The war, the years afterwards that nobody warned me about, and the method — including the parts where the method was wrong, because those are the useful parts. If you are living with a stoma, or waiting on a scan, or standing in the airport with your luggage wondering where to go next, some of this will be for you.

A breast cancer survivor named Brandie Sellers wrote something I put at the top of my story in 2013, and I have not found a better reason to write in public since:

no one would be inspired if I sat at home in the dark.

So — not sitting in the dark. Starting here.

Next Wednesday, 14 October: thirteen years with a stoma. The things nobody tells you, and the four or five that actually matter.