There’s Life after Stomas
Two for the price of one! Sounds good, doesn’t it? Not when it’s two holes in the head, or, what I have — two holes in my tummy.
How I got two for the price of one
The story had started 5 years before. I thought I had just about come to the end of the menopause when the process began to reverse itself. At first I assumed that it was because I had been under enormous strain and no longer was, but as it got worse I booked an appointment with the doctor. But before that, it got so bad that I called an ambulance. I think the doctor who examined me thought I was exaggerating, but she booked me in for tests anyway, and a good thing she did. I had cancer of the womb. Apparently changes in the womb lining during menopause can cause this. They operated and removed it, and said that as it was still wholly contained within the womb which they had removed intact with keyhole surgery, I did not need further treatment or checkups. I was discharged the next day. And after a painful few weeks then a few more limited weeks, I was back to normal. I started by walking short distances on the flat, and gradually worked up to walking to the highest point of the hills.
Fast forward 5 uneventful (healthwise) years, though with hindsight my energy levels had gradually decreased. One day I felt sudden pain and had the trots, and it did not feel at all like a normal upset stomach. It felt like a blockage. I went steadily downhill and could barely eat or sleep or go to the loo. I lost 56 pounds. After what seemed like forever I got the results of tests. The cancer had come back. A 4 inch by 6 inch tumour had filled the space vacated by my womb (which is presumably why I had not felt it) and was now eating into my bowel. I’d need a colostomy — cutting out the damaged part of the colon along with the cancer, and redirecting the remaining end of the colon out through a hole in my tummy so output flows into a bag. My bladder looked untouched in the x-rays, but they would not be sure until they operated.
When I woke up from the operation, it was to find that I had two bags, not one — a colostomy and a urostomy. By then I was weak as a kitten, and when the bed I was in turned out to have a dip in the middle, I could not even roll over when the nurses asked me to. Learning to manage two bags with zero stamina was quite a challenge. At first it is rather like learning to drive. If you focus on getting one aspect right you forget another, and it seems like you need more than one pair of hands and eyes. And your new twins have NOT learned how to behave. (Will they ever?) Trying to get a clean bag on when they decide to misbehave is an absolute nightmare. But for most people they settle down after a few weeks.
I was lucky and did not have any complications, for example serious infections, and although it was a struggle, managed to convince them that I was OK to discharge after two weeks, as originally planned. I took my recovery slow and steady and started with gentle walks on the flat and weeding the garden, and built up from there. I was back at work 8 months after the operation, having proved my fitness by going climbing around trees and zipwiring 6 months after the op.
It’s life, Jim, but not as we knew it
There is so much to learn about your new addition(s). Fortunately there is often help, even if not in your own country. In the UK, we have Colostomy UK and the Urostomy Association, and on social media there are also groups for people such as double baggers and athletes with stomas (you’d be amazed what some of them can do). There are also lots of helpful videos on Youtube. Go to Colostomy UK’s and Urostomy Association’s web sites for further details of any aspect that interests you.
There are also local groups to join if you are lucky. Ours are attended by representatives of ostomy equipment suppliers to show you what’s available, stoma nurses and some very brave ostomates who travel a lot (pre-pandemic) to give talks.
The wonders of technology
Stomas have been around a lot longer than you’d think, dating back to 1706. Napoleon Bonaparte used a goat’s bladder as a colostomy bag. He died of stomach cancer. Dwight Eisenhower had Crohn’s disease and had an ileostomy. Rolf Benirschke played 7 seasons in the NFL with an ileostomy (Colostomy UK has a rugby team). Queen Elizabeth The Queen Mother, Fred Astaire and Red Skelton were also ostomates. Only in the 1970s did pouches begin to resemble the relatively comfortable practical ones we wear today.
There are a whole range of bags and accessories available. Which is just as well, as we are all different. We are different shapes, the stomas may be in different places (e.g. in a crease or too near the belly button), stomas can be innies or outies and come in a variety of sizes. Our skins vary too — people can react to the materials used for some bags while others are fine with them. It can take a lot of trial and error once new stomas have settled down to find the best combination of supplies for you.
The advantages of having a stoma
Some people, like me, would not be alive if it were not for the operation that gave us our bag(s). For others, it is the end of a long illness that kept them virtually prisoners in their own home, having to stay near the loo. The bags gave us our lives back.
For women, a urostomy means being able to pee like a man, which is a lot quicker (unless there’s a queue/line). And if we happen to be standing behind a bush outdoors, it is doubtful if anyone would guess what we were doing. I have yet to find out if they are any good for writing in the snow — no snow here. And if we have a colostomy too, we never need to sit on a public loo seat again.
While we still have to dash to the loo if we get the trots, the need is not quite so urgent or uncomfortable. And I, at least, find that although I do still feel ill, my stomach no longer churns the way it used to.
We can also use a night bag so we need never get up in the night to pee again, and can strap on a leg bag in the day if necessary.
If we break wind, it goes into the bag which has a filter, not under the noses of those near us.
The disadvantages of having a stoma
Having one bag or more (some have more than two!) can be a major hit on one’s confidence. For those who got their bag(s) unexpectedly, for example after an accident, it is a lot tougher to deal with psychologically. For most of us, the fear that a smell may escape or that we have a leak can be a big worry. If you smell something bad, is it the sewage farm, has somebody near you farted, or do you have a colostomy leak? If condensation or spilled beer drip from the bottom of your glass onto your lap or thigh unnoticed, is it that or do you have an urostomy leak? If you want to start a new relationship, when do you tell your new potential partner, and how? Will old or new partners be able to cope and still love you? Will you still have a sex life?
Obviously dealing with the bags is tiresome and a nuisance, but if they are relatively well behaved it soon becomes routine. Most of us take spare bags, supplies (e.g. medical adhesive remover, wipes) and clothes with us when we go out, and/or keep some in the car and/or office. If we have a leak and need to change a bag when out, particularly if we need to clean up and change our clothes, we need a loo fast, and need a loo with some facilities normally only found in a disabled loo — so we are entitled to a Radar key to let us enter them. So we have to be well organised or it can take a little of the spontaneity out of life. While technically disabled, we generally only need a few small accommodations for our bags. Most of the time we are just like everyone else.
Unless you live in a country where the national health service picks up the tab (as is in the case in the UK), the supplies can be very expensive. And for some people, they will have the expense the rest of their lives (some stomas are temporary, while healing goes on).
Since travel can upset anyone’s digestion, we have to take a lot of extra supplies with us when on the move, including bed protectors. But all forms of travel are still possible for the determined — flying, hiking, mountain climbing, etc. As are sports.
Over 50% of people with a stoma develop a hernia, thanks to the weakening of the abdominal wall. With two stomas, I guess it was inevitable that I would get one, having two stomas. Undressed, it looks unsightly. Dressed, and I simply look fat. And fortunately it is not causing me any trouble. But hernia belts are just one of the extra supplies ostomates have to get, to prevent or contain hernias.
That’s life
To sum up then, stomas can be PITA, but for most of us they definitely beat the alternatives and we can live with them. Most people have never heard of stomas, and do not realise that perhaps at least one of their friends, family, neighbours or colleagues or favourite celebrities has one or more.