Why I volunteered for a Stoma.

 

When I met the surgeon at St Mary’s Hospital, I was not ready for her sucker-punch.

“We have to cut it out. All of it.”

“All? The whole large colon? Does it have to be all?”

“Yes, and the anal canal, as well. Up to and including the rectum.”

Only three minutes before she had said reassuringly, “You do not have cancer yet in your colon,” So far so good, I thought.

“But,” she continued remorselessly, “you have high grade dysplasia cells (what??) along the whole length of the large colon. According to past practice, these cells will almost inevitably become cancerous. It has been building up over the past year or so because the inflammation of your colon has lasted for so many years. As you know you have had Crohn’s Disease, or ulcerative colitis, over the last twenty-five years. The cells are now too weak to resist a cancerous growth.”

“What other option do I have?” I asked.

“Well, you can do nothing at all, and continue with your current treatment, but then the  NHS can do nothing prevent you from getting cancer.”

As I reeled from this information, a sudden alarming picture emerged. “Then, do I have to wear a colostomy bag?” She nodded.

How long for? “Forever”.

It was like a death sentence. I only knew a couple of distant acquaintances who had worn stomas, but I did not know the details of how they lived and had never discussed it with anyone in the past. Living with such a bag seemed like some kind of life changing disaster, like going blind or losing a limb. This may have happened to other people, but, thank the lucky stars, it was not supposed to happen to me or someone close to me. 

This was like a bolt out of the blue. I had merrily continued with my Crohn’s Disease over the last decades. I had been told that the disease was incurable, but manageable. It was an irritant, but at least it was painless, despite its uncertainties. The condition had caused me to undergo infusions every six weeks, and the pleasure of a colonoscopy every two years, but this way of life seemed acceptable and bearable in the long run. I could imagine it continuing in the same way unchanged into the future.

True, Crohn’s could be treacherous at times, with its occasional urgency taking you by surprise, especially when your self-control might relax as you neared a restroom. It left me embarrassed every now and again, as on a bus, or on the high street in Tunbridge Wells, or in the middle of the Alexanderplatz in Berlin, but I had become a past master on clearing myself up to disguise the mishap. In fact, I described living with Crohn’s Disease with a certain relish in my travel journal “Chasing Phileas Fogg: 80 Days on the Borealis”. I am 77 years old, but the Crohn’s did not  prevent me from working for a Chamber of Commerce two days a week or having a very busy schedule for my work in the Polish community.

However, in November I saw the head of the Gastroenteritis Clinic in Hammersmith Hospital for what I thought would be another routine appointment monitoring my progress with the Crohn’s. He looked kind of sad and shook his head gloomily. “I’m afraid,” he told me, “I have given you this treatment as long as I could, but now we need to find more drastic solutions. We have observed the possibility of cancer, following the results of the latest colonoscopy samples we have taken. This may  require some surgery,” he said ominously. He recommended  an appointment for me at St Mary’s in Paddington with a surgical team. And so, I found myself in the presence of this lady surgeon with her alarming announcement.

The new advice was such an unexpected body blow that I was left with the dilemma. Should I take this radical step to prevent a cancer which had not yet invaded my cells? Or should I tough it out and carry on as before. Many of my  friends counselled against surgery, although my wife felt that perhaps the surgical option had a certain logic to it.

I read up the literature on it. What did wearing a stoma, or colostomy bag, entail? My rectum would be sealed, my large bowel would be removed, and my waste would pass through the same small bowel directly into a little plastic pouch attached firmly to my body, which I would empty when necessary and change every other day or so. It would be a lifetime commitment. There would be a stoma unit at my local hospital to supervise my progress and arrange for my supply of fresh bags and other necessary accessories to make those regular changes. It sounded dreadful.

What were the dangers, apart from the obvious? An operation is always risky, there would be an uncomfortable stay in hospital. The brochure helpfully listed the risks, whether common, less common, or rare. Most were rare but these could include hernia, wound infection, nerve injury, sexual dysfunction (oh dear!), significant bleeding, blood clots, abdominal fluid collections, and finally something headed briefly as “death” .

On the other hand, the operation, which is helpfully called a laparoscopic panproctocolectomy,  would remove the risk of developing colon cancer.  There would be no chemotherapy, no long-term pain or risk of eventual death from cancer. For the surgeon it was a fairly standard operation, under general anaesthesia, and she would normally be able to perform it through keyhole surgery. She would slowly remove my infected large colon through my right side until she reached the link with the uninfected small bowel which would be allowed to protrude for an inch or so. She would then place the stoma over that. I had this weird image in my mind of the surgeon  slowly pulling out my one and a half metre colon, hand over fist, wondering when she would finally reach the link to the small colon.

Some 200,000 people in the UK have a stoma, including famous singers, comedians, and athletes. It would not prevent them from being active. I was told that I should be able in time to continue my work and my community activities as before. After all, Napoleon had a permanent colostomy bag following a gunshot wound, and it did not prevent him from continuing quite a busy lifestyle, including coronations, mistresses and staging quite a few battles all over Europe.

I took a deep breath and said, “Alright, let’s do it!”  Some of my friends urged me to wait, but I saw no need to delay. I asked the surgeon to give me a date that would allow me to have a book launch for my latest publication describing my 80-day cruise around the world with my wife. After that I was committed.

The operation in Charing Cross Hospital lasted 7 hours. Staying in hospital for 8 days was a drag, but one I had expected. Initially I was linked to various 12-hour infusions, with a so-called Robinson’s bag draining my single kidney (I had once donated the other kidney to my wife), a cluster of cannulas on each arm, while my poor willy was intimidated into submission by a catheter collecting my pee. My stomas were being drained regularly by the ever-patient nurses. Within a few days the staff had removed the catheter and the Robison’s bag.

Emptying a stoma, and sealing it up afterwards, proved child’s play. The real problem was to learn how to drain the stoma yourself and then how to change it. My initial two attempts, supervised by a special stoma nurse, left me so stressed that I nearly fainted each time. However, I realised that this was something I had to overcome as I would be responsible for this procedure for the rest of my life. So, I lined up the necessary accessories. These included the new bag cut to size to fit the stump of the protruding small colon, the ice-cold spray to remove the old bag glued to my side, the bowl of warm water, three or more wipes and the black plastic bag to collect the debris at the end. I placed them on my bedside tray in the order of their use with the opened black bag first. Then I took a photo of it. After that I proceeded systematically to make the change. It took less than a minute. I pressed down the sides of the stoma now sticking to my body. I was the master now. Obviously, there was still a lot to learn but my recovery was beginning. I was ready to leave the hospital and face the world.

The initial aim was to ensure that my waste was not too watery. Initially the contents would just pour out, but as soon as I had recovered my appetite and had moved on to more solid food, my output became thicker and left the bag grudgingly. In time I had to squeeze it out, like toothpaste out of a tube. However, my diet had to change. Still, I now had to cut the crust off my bread, and the skin off my fish or potatoes, avoid stringy and high fibre foods, peas and sweetcorn, raw fruit and veg, and items with pips like grapes and strawberry. I should choose white bread rather than brown, corn flakes rather than weetabix, tea biscuits rather than digestives, soft eggs rather than hard boiled. Apart from that I could eat most foods but should learn to chew them and eat them slowly. I should avoid driving a car for some 6 weeks, avoid strenuous exercise and lifting any weights, but otherwise be active. Within 24 hours of leaving hospital, I was out walking every day, buying newspapers, meeting friends in cafes, travelling on a bus. For her birthday we travelled for a 3 day "dirty" weekend in a riverside hotel in Maidenhead. We travelled there by Elizabeth Line. As for heavy shopping, my wife and I switched temporarily to ordering our main food through supermarket deliveries. This was the new reality.

I had learned to change the pouch every day in the morning before breakfast so that the procedure was not interrupted by sudden spills from the stump of the remaining colon. By the way, the  output was normally odourless, unless you had eaten some pungent fish or curry. You would not normally be embarrassed by its content when at work or in a pub or café, and the bag is not transparent.

(to be continued)