Colostomy: So, Where's Your Bag?
Being told the pain in my butt was not haemorrhoids, but two tumors each about the size of a golf ball, was a shock. Having a biopsy in such a tender and very sore region was a shock. Being told the biopsy confirmed the tumors were cancerous and needed to be surgically removed was a shock. Undergoing radiation and chemotherapy for thirty-three days pre-operation was a shock. Giving myself an injection on each of those thirty-three days, as well, was a shock. Trying to cope with the news of having to carry a colostomy bag for the rest of my life was a shock, but the biggest shock of all was none of these.
“What are my chances, Doctor?” I asked my surgeon, Dr Ctercteko.
“Your condition, as it is now, is life threatening, Mr McLennan.”
Now that was a shock.
It was also the only thing I could put out of my mind. All the other shocks were physical, and situations I had to deal with, so I figured my mind was busy enough with these factors without having to worry about dying. Everything I had read about having cancer was to remain positive and the thought of death was certainly not a positive thought. I told myself to deal with the things I could control and dying was not one of them.
My operation was scheduled for 6.00 a.m. and I can clearly remember opening my eyes late in the afternoon, seeing my wife, son, daughter and son-in law all standing in front of me. I don’t know if I smiled, but I tried to as I realised I had made it. No more cancer, no more pain and everything to look forward to.
Getting used to the colostomy bag was a challenge. The surgeon and his crew had fitted a transparent one so they could monitor my ‘stools’, they said. I was shown how to change the bag and it wasn’t long before I was allowed to do so on my own which was a relief as it was quite embarrassing but, I’m sure, only to me. I had the bag for life as my tumors were so low in the colon, almost at the anus, the operation was not one that could be reversed as was sometimes the case. I didn’t care so long as I lived and was rid of the pain in my bum!
I decided to refer to my ‘wearing a bag’ rather than carrying one as a result of a comment from my sister, Janice. I hadn’t seen her for some time and the first time I visited her after my operation she said, “So, where’s your bag?” I patted the left side of my tummy and told her it was tucked away out of sight so I didn’t have to worry what colour shoes to wear that matched!
That was back in December 1994 and I must pay tribute to the Colostomy Association in Australia, where I worked at the time and had the operation, and New Zealand, my home country, where I have since retired. The staff is wonderful, caring people who cannot do enough to ensure your comfort and quality of life. My surgeon and his crew were wonderful and saved my life.
There are a number of incidents, both amusing and awkward, that have occurred over the years and it is these that make you appreciate the fact that there are times when other people get dragged into your world unwittingly and without complaint.
They also help to remind me that I am still alive, enjoying life, and no longer threatened by any aggressive tumors after 14 years. While some of the incidents were not funny at the time, they have since provided a good laugh to those unlucky enough to hear about them.
Some six months after the operation I visited my local doctor for a blood test and his okay for me to have a check-up colonoscopy. “What exercise are you doing?” he asked me.
“My son and I hit a few golf balls over on the football fields now and then, and I walk a mile or so each day to get the paper from the local shop,” I replied.
“Good, good. May I suggest you play a full round of golf once a week as well. The swing is good for you and the walking is invaluable,” he said.
It was on one of these golf rounds that we had a stranger ask if he could join us to save him waiting another half hour or so to tee off. Now, I must point out that I am the worlds biggest hacker when it comes to golf and my son, although much better
than me, was no Arnold Palmer. This stranger, though, was really good and it must
have irked him to wait for me especially, to catch up to his long hits. When we reached the 15th hole he asked me to hurry up as he needed to go to the toilet. I suggested he just disappear into the nearby bushes and go.
“No, no, you don’t understand,” he said. “I need to sit down, you know, a number two,”
Oh, I see,” I replied. “Well, I don’t know what your problem is but I went on the 10th tee.” He looked at me strangely then took off across the fairway towards the toilet block. We didn’t see him again.
My wife and I had taken the train into Sydney for some Christmas shopping and were approaching Parramatta on the return when I felt my bag expand suddenly. I patted the area and it felt like I was hiding a football inside my trousers. I suddenly noticed an unpleasant odour and was really worried.
“We better get off here so I can go into McDonalds and change,” I said to my wife.
“I think you better,” she said screwing up her nose.
I patted my back pocket where I always carried two spare bags, wipes and nappy sacks to dispose of the used ones, only to discover it was empty. I didn’t say anything and as soon as the train stopped I was gone, hoping, no, praying that the toilet was available. Fortunately it was and I locked myself in and discovered that the bag had detached itself completely and I was a mess. My undies were soiled as was my shirt to say nothing of my tummy and the tops of my legs, and I had no change of bag.
There was plenty of toilet paper and I used a huge amount, with water, to clean myself up, and then proceeded to wrap the balance of the roll around my midriff like a bandage. Round and round it went until there was none left. I had thrown my soiled undies and shirt (thank goodness I had a light jacket with me) in the waste disposal unit along with the used bag and made a hasty exit. Now I was praying that the next train wouldn’t be long. My wife said if she had known I was going to be that long she would have had a meal. I had taken twenty minutes. I had no idea what might have caused the reaction, which was sudden and explosive but, thankfully, was home in less than an hour without further incident.
The same thing happened at a football match. I knew my bag was fairly full and in need of a change but the game was nearly over and my team were behind, but attacking aggressively. They scored a try on full time which gave them the win and I jumped up out of my seat throwing my arms in the air to celebrate the winning points when I felt something give. I sensed rather than knew that I was in trouble with my bag, so I grabbed Wayne’s arm and explained that we had to go, and fast. We called into my daughter, Dianne’s house for a change and a shower to be told that the bathroom was being renovated and the water had been disconnected. I had to do the best I could to make myself presentable enough to get home.
My wife and I were flying home from visiting Wayne who now and lived in Baltimore. Our flight was from Baltimore to Chicago to Los Angeles to Sydney, a trip of about 20 hours give or take. The flight from Baltimore had been cancelled due to a fuel problem and we were transferred to another aircraft. I usually ask for an aisle seat — in case I need to rush off to the toilet with little warning — and one had been allocated for all three flights. However, when we were given our new seats for the changed flight which was a smaller aircraft, as we came from a Boeing 767 down to a Boeing 737, I was given the middle seat of three. I said nothing as the flight was just
over an hour so I should be fine. Janet, my wife, was sitting somewhere else on the plane as they couldn’t give us seats together for some reason.
A lady occupied the window seat and had her tray down and papers and documents all over the place including the arm-rest. The aisle seat held a big-built man who kept complaining to the cabin crew that the change of aircraft was inconsiderate, unnecessary and a complete inconvenience. Only 15 minutes into the flight I needed to go to the toilet as there had been some unexpected activity which had ballooned my bag and I wanted to check it. Considering the grumpy man next to me I decided to try to hold on — as no odour was a good sign — until I got off at Chicago. No such luck as I then had the urge to pee. I had been while waiting in the terminal so was taken by surprise especially as the need became rather urgent. Still, I tried to hold my discomfort in check and as a result wriggled around altering my position to ease the urge.
Suddenly, and quite loudly a voice boomed out, “You’re a real wriggler aren’t you. What’s the matter with you, got ants in your pants?”
That was as much as I could take so I blasted back, “Do you know what it’s like to suffer bowel cancer and have to wear a colostomy bag for the rest of your life. I asked for an aisle…”
“I’m sorry, sir. I’m dreadfully sorry. Let me…”
“seat, but I drew the short straw and was seated next to you. I hope my bag does the right thing and comes off…”
With that the man was up out of his seat apologising profusely, “I’m really sorry, sir. I was way out of line. Please feel free to visit the lavatory and do so as many times as you like. It won’t bother me in the slightest. I’m terribly sorry.”
I got up and without another word went to the toilet only to discover the bag was filled with wind and would have deflated through the filter in a few minutes, so was not a problem. I released the wind anyway, relieved myself and walked back to my
seat and felt every pair of eyes in the cabin on me as I returned to my seat.
The man jumped up and moved into my seat telling me to please take his aisle seat and again apologised. On arrival at Chicago, he wished me a good trip and hoped my quality of life remained high as he rushed off. I resisted the urge to call after him that it would be if I could avoid him and people like him.
While they were awkward and embarrassing moments, nothing, but nothing, can be worse than the same thing happening in bed in the middle of the night. The “Oh, no” comes after waking up and knowing things are not right. I dare myself to feel around the bag area, knowing from the odour what I will discover. My hand involuntarily recoils now soiled with the stuff, which means I can’t touch anything, as I try to get out of bed. It is pitch black and I don’t know the extent of the problem or even if any has spilled onto the floor. It has happened only twice, but it is still a nightmare having to wake my poor wife telling her I need an urgent shower and we need to change the bedding. Holding myself, to avoid further spillage, I take off to the shower.
I have had the same thing happen while travelling as a passenger in a car, enjoying a drink in a Washington DC bar with family and friends and in the middle of a game of ten-pin bowling, but I am no longer embarrassed by the situations as I have learned to say that my plumbing is a little different and just move on.
The inconvenience and mess is just a part of my life now, and in spite of it, I realise it is better to do this now and again than to be dead 24 hours a day.