Maggie's Centre, Charing Cross Hospital
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? All what?
“The large colon. All of it.”
I was stunned. “Does it have to be all?”
“Yes, and the anal canal, as well. Up to and including the rectum.”
Yet only three minutes before she had said reassuringly, “You do not appear to have cancer yet in your colon.”
So far so good, I thought.
“But,” she continued relentlessly, “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 in your colon over the past year or so because the inflammation of your cells has lasted for so long. As you know, you have had Crohn’s Disease, or ulcerative colitis, over the last twenty-five years. Well, 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. However, then the NHS can do nothing more to prevent you from getting cancer.”
As I reeled from this information, a sudden alarming thought occurred. “Then, if I have the operation, will I have to wear a colostomy bag?”. I could scarcely pronounce the word. She nodded.
How long for? “Forever”.
It felt 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.
So this was like a bolt out of the blue. I had merrily laboured with my Crohn’s Disease over the last decades. I had been told that the disease was incurable, but manageable. ”Your back passage is still a little angry today,” commented the head doctor, a description that had my female colleagues at work in stitches. I could live with that. The disease was an irritant, true, but at least it was painless, despite its uncertainties. The condition had caused me to undergo hospital 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 far 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. I had become a past master on clearing myself up afterwards 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 going to the gym, or having a very busy schedule for my work in the Polish community. It did not stop me and my wife going around the world last year on an 80 day cruise.
However, in November I had seen 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. As I came in, he looked kind of sad and shook his head gloomily. “I’m afraid,” he told me, “I have given you this treatment for 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 as she metaphorically displayed her scalpel. “Some surgery” indeed!
The new advice was such an unexpected body blow that I was left with a dilemma. Should I take this radical step to prevent a cancer which may, or may not, have 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? Well, firstly a colostomy bag is the wrong description for my case. That would have applied if only part of my large bowel had been affected and only that part of it had to be removed. In my case the whole of my large bowel or colon would be removed, my rectum sealed up and my waste would pass through the small bowel directly into a little plastic pouch attached firmly to my torso. This would be called an ileostomy bag. It would consist of a grey coloured leakproof plastic pouch with a simple velcro seal at the bottom. I would be able to empty it, when necessary, some five to eight times a day, and then change the bag every other day or so. It would be a lifetime commitment. There would be some nurses at a stoma unit in my local hospital to supervise my progress and arrange for my supply of fresh bags and other necessary accessories to make those regular changes. Otherwise, I would be on my own. 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. Luckily most were in the rare column, 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 simply - “death”.
On the other hand, the operation, which is helpfully called a laparoscopic panproctocolectomy, is not exactly the cutting edge of surgery and it would remove the risk of developing cancer of the colon. There would be no need for chemotherapy, no long-term pain or risk of eventual death from cancer. For my surgeon it was a fairly standard operation, under general anaesthetic, and she would normally be able to perform it through keyhole surgery. She would slowly be removing my infected large colon through my right side until she reached the link with the uninfected small colon. This would be allowed to protrude for an inch or so from my body, like a little red stump. She would then place the stoma pouch over that. I had this weird image in my mind of my surgeon slowly and patiently pulling out my one and a half metre long colon, hand over fist, wondering when she would finally see the link to the small colon pop out. Gotcha.
And I would not be on my own. Some 200,000 people in the UK have a stoma pouch, including famous singers, comedians, surfers and other 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 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 to myself, “Alright, let’s do it!” Some of my friends urged me to wait, but I saw no need to delay. I did ask my GP earlier for a second opinion, but then let it go. I asked the surgeon to give me a not-too-distant date that would at least allow me to have a scheduled book launch for my latest publication which described our 80-day cruise around the world. After that I was committed.
The day before the surgery a stoma nurse at Charing Cross Hospital explained many of the ins and outs of living with a stoma pouch and pinpointed a spot on my right side where she expected my small colon to emerge. She marked it with a black pen. When I got home, I took a selfie of my face and upper torso, with the mark of doom clearly visible. It was the last picture of my body without a stoma pouch.
Next day, I turned up early in the morning in Charing Cross Hospital. A team of surgeons, doctors, anaesthetists, and nurses were ready for me. The operation 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. I could feel some hard discomforting stitches between my bum cheeks protecting my newly sealed rectum. My stomas were being drained regularly by the ever-patient nurses. Within a few days, prompted by my eager surgeon, the staff had removed the catheter and the Robinson’s bag.
Emptying a stoma, and closing it up afterwards with a velcro seal, proved child’s play, if initially a little messy. The real problem was to learn how to change the stoma pouch by myself. 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, before the stoma nurse’s next visit, 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, a bowl of warm water, three or more biodegradable dry wipes, a moist barrier film wipe in a little sachet, 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 this array. After that, when the nurse arrived, I proceeded systematically to make the change. It took less than 2 minutes. I pressed down the sides of the stoma now sticking to my body. The pouch held firmly, like on a kangaroo. I was now the master. 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. At first, while still in hospital, the contents would just pour out, but then I was barely eating and limited my food intake to soft things like soup and rice pudding. As soon as I had recovered my appetite and had moved on to more solid food, my output became thicker and left the bag more grudgingly. In time I had to squeeze it out, like toothpaste out of a tube. However, my diet had to change. 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 I should learn to chew them and eat them slowly. I should avoid driving a car for some 6 weeks, stop any strenuous exercise or lifting any weights, but otherwise be active.
Within 24 hours of leaving hospital, I was indeed out walking, buying newspapers, meeting friends in cafes, travelling on a bus. For my wife’s birthday, two weeks later, we travelled by Elizabeth Line for a 3 day "dirty" weekend to a riverside hotel in Maidenhead. My manhood was thankfully intact. 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. As my last intake of food would be the previous evening, the morning procedure was not normally interrupted by sudden spills from the stump of the remaining colon. By the way, for those interested, the output is normally odourless, unless I had eaten some pungent fish or curry. I tended to drink less alcohol, as this generally made my output watery. I could even sometimes smell the alcohol even if I hadn’t drunk a drop. It would probably have been after a rich ready cooked meal, like a ragu. The red wine content would have made itself known. I do not feel embarrassed by the pouch and its content when at work or in a pub or café, even though it might just occasionally gurgle softly, and it would not normally require emptying until the evening.
Some domestic issues that arose in my experience. Those tight Armani jeans pressing on my stoma was not such a good idea. They had to go. I needed to buy some looser clothes, especially trousers. An alternative was to have three pairs of my current trousers shortened by about three to four inches, and then to wear them under the hips, reinforced by a pair of sexy black braces.
A month after the operation I did have one relapse, when I suddenly felt faint and found myself vomiting violently. Things had calmed down by next morning. I’m not sure to this day what caused this relapse, except that I had probably been dehydrated while carrying a heavy bag of shopping over an extended period. After that, I always took care to drink at least a litre of water a day, sipped gradually between meals. The advice is not to gulp great amounts of water at once, not to drink during a meal, and not to drink too late in the day. Otherwise, you would find yourself peeing every hour or so at night and losing out on your sleep. Mind you, those occasional nighttime trips to the loo were interspersed with the most vivid and colourful of dreams. I learned to sleep on my back so as not to crush my pouch. My wife had to put up more often with my snoring, but apparently it was rhythmic and subdued, rather than intrusive. I think she was being kind.
At one stage I noticed that the right side of my groin had become red and sore, perhaps from the proximity to the pouch. I managed to deal with that by using a liberal sprinkling of baby powder on the affected area. Apart from that, I appeared to have had no unexpected side effects. The pouch never leaked as I made it sure it was sealed properly each morning.
After 5 weeks I came back to work. I had wanted to return at least a week earlier. However, the relapse set me back and my return was rescheduled for the following week. The employers were exceptionally generous. They suggested that in the first few days I arrive only in the middle of the morning and work just for 5 hours. By then I had mastered my driving. That was after trying out several emergency stops in my underground car park, much to the consternation of my fellow residents. It was a 15 mile journey to work, but luckily I drive against the morning traffic flow as my work is outside London.
The same week I returned to work I saw my eager lady surgeon. She checked my stoma, poked around my tummy to ensure it was still soft, and obligingly checked progress with the stitches which had been decomposing in my bottom. To me, they were still an irritation. It felt like someone had stuffed a bunch of cloying marshmallow up my behind. However, to her they were “a beautiful sight”. The resulting long scar along the rectum appeared to be free of infection and the delicate smooth skin that had formed alongside was now a permanent fixture. I would get used to it. After all, it was merely ornamental now, and not functional. So, all in all, I got a good school report from her.
However, she had more dramatic news. A post-operation analysis of a polyp from my rejected colon revealed the presence of a category one tumour. This suggested I had indeed had stage one bowel cancer before my op. However, there appear to have been no lymph nodes affected. Because of this and because of the low level of cancer, my surgeon was optimistic that it had been nipped in the bud. To be sure, I was to have my liver and lungs checked and I would be under observation for the next five years to ensure the cancer had not spread. Also, she had appointed a Macmillan nurse to monitor me, as well as the stoma unit nurses at my local hospital. I was going to be quite spoilt with all this extra support. Despite the remote possibility of this cancer returning, I was delighted with the news. It confirmed that my operation had indeed been a necessity.
A scan, which included the introduction of a contrast liquid, concluded that my lungs and my liver were not infected with cancer. My cheerful surgeon was delighted as well, but she did add a note of caution in that the cancer could sometimes return, especially in the next two years.
In fact, I was called in by a doctor at my local hospital. It was like a mystery visit, as he was not sure why he had called me in, and I did not know what ailment I was supposed to be complaining about. Then, on checking his notes, he realized he was that “second opinion” that I had temporarily sought before my operation. He was delighted to hear that I had had the operation already, as that would have been his advice in the circumstances. He also prodded me about and gave me the third degree and his conclusions reflected that of the original surgeon. I was cancer free and recovering well.
My lovely Macmillan nurse introduced me to a Health and Wellbeing Event for stoma and cancer patients at Maggie’s Centre, an isolated bright orange pavilion in the grounds of Charing Cross Hospital. It had a comfortable lounge, a kitchen, an isolation room, and a lecture room, surrounded by a little garden. A male nurse gave us a lecture, which included pictures and videos of young stoma-bearers showing off their pelvic muscles and young attractive female models wearing little round stomas over their bikini bottoms. We were told that wearing a stoma would not prevent us from swimming or surfing, running, or playing football, or pursuing whatever activity we carried out before. Some of those present chimed in with their experiences, including an elderly man who eventually had the courage to display his stoma while sunbathing in his swimming trunks at the poolside in Benidorm. I could imagine the resulting advert, “If you can wear it in Benidorm, you can wear it anywhere.” The guy got a round of applause like at an alcoholics’ anonymous session. There was a real element of camaraderie here. This was followed by a lecture on sex and cancer, but I dozed off for that one.
While, mostly, I still shower wearing my stoma pouch, one of the true occasional joys is to have a morning shower immediately after removing yesterday’s pouch and before fitting the new one. The sheer pleasure of that warm water cascading off my completely naked body with its exposed little stump of a small colon, can only be experienced by a true stoma bearer.
I did find after some time that I seemed to be losing weight, especially after a shower. I would be short of breath and quite tired after just walking to the shops and back. I did undergo a period where there was panic by my GP over an excessive strain on my thyroid hormones after my heart rate was observed as higher than 150 beats a minute. I was prescribed the appropriate medication, and I was told to continue eating and drinking sufficiently to see me through the storm. Nothing simpler.
Now, 6 months after the operation, all I can say is that (touch wood) life is good. I eat well, sleep well, show off my grandad dance moves, enjoy my long 4 mile long canalside walks, travel to work by car two days a week, remain active in my community work, and travel by plane to Poland for the book fair. I can still occasionally pop into the gym. On those occasional hot summer afternoons, I lay down with my shirt off in the park, happily displaying my stoma pouch. Nobody cares or comments. I now wear an NHS supplied reinforced belt around my torso which offers me greater protection against hernia if I am carrying a heaver load or bending down. With that I was even able to drag over a 50 litre bag of soil for my wife from the underground car park to our balcony, although that was pushing it a bit.
On a second visit to a cancer patients’ gathering at Maggie’s, I listened with respect as other patients described their experiences, their ups, and their downs. I felt a little bit of an intruder as I was the only one in the circle who had not experienced chemotherapy. Other patients warned me that I would not be advised of the possibility of the cancer returning until it was large enough to consider treatment, so I should not accept a statement that I was “cancer free” as being definitive. But I was also impressed with their attitude, especially those patients, like me, in their 70’s and 80’s, that, whatever happened, they appreciated that they were getting the best treatment possible, and that, although cancer could always return, we should all make the most of our lives and enjoy them for as long as we are given the time to do so. I then remembered the apt words of Robert Browning, which I quoted back to them, “Grow old along with me, the best is yet to be”.
Wiktor Moszczynski
