It was in 1997 that I found out I had Crohn’s disease. I’d never heard of it before my diagnosis, and so, wondering what my future held, I was handed an information booklet, which pointed to patient support groups, like Crohn’s and Colitis UK. Not knowing anyone else with bowel disease, I suddenly found myself feeling very alone.
What was worse, within two years, my large bowel was so inflamed that I had to have 80% of it removed. I ended up living with a temporary ileostomy for a year before I had the happy news that my remaining bowel could be reconnected to my rectum. At last, I would again be able to go to the toilet the traditional way.
After a few years of reconnection, however, I found I was getting diarrhoea on and off, and it was gradually becoming worse and worse. Returning to my gastroenterologist, Edmund, for help, he sent me for a SeHCAT scan. I took a pill, waited a few hours and then lay down as a scanner swept over my body from above. A week later, I did it again. It turned out I had bile acid malabsorption, which meant my body wasn’t absorbing fats as it was meant to, and so everything was coming out as diarrhoea. I was sent home with some powders and tablets that were meant to get my stools back into shape. I was less than delighted to find that when the powders were mixed with water they looked like wallpaper paste and were about as palatable. The tablets, meanwhile, were particularly large, so much so that people who have trouble swallowing can’t take them.
‘they looked like wallpaper paste and were about as palatable’
Unfortunately, neither medicine worked for me. Wherever I went, I still needed to know exactly where the nearest toilet was, and I was always anxious about whether I could make it in time. What if someone else was in there? This is a frightful thought for someone with bowel disease. My toilet anxiety kept me in the house, except for when I went to work. Even though I lived close, coming home from work could itself be an ordeal, as I rushed back to beat my bowels. Worst of all, I had stopped joining my partner Paul when he went out, and this was putting a real strain on our relationship. I felt so frightened that I was just existing in life and eating to stay alive and not for pleasure, because it went straight through me. I felt really depressed and went to counselling to try and help. This time it didn’t help me because I was still going to the toilet such a lot and things needed to change.
Home alone, I had plenty of time to go online and read about the experiences of other people living with bowel problems. For 3 years, I kept seeing ostomates posting about how their stoma had set them free. At last I’d had enough, and thought I’d take their advice. I had a life to live outside my four walls. I got back in touch with my gastroenterologist, and asked him to send me to a surgeon who could give me back my stoma, and with it my life. The surgeon and I met, and we talked things over. We agreed that I should be given a permanent ileostomy and have my rectum sewn up; there would be no going back. On 19 December 2016 I had my operation, and Bert my stoma was born.
Waking up with Bert in the high-dependency unit, I found myself closely monitored by a particularly lovely lady called Nicola. She even came to see me on the normal ward a week later to wish me a merry Christmas. I was still in on Christmas Day. I had the ward to myself; it was lovely and peaceful. On Christmas Day I had all my tubes out so I could finally get out of bed. After a night there, I was let out onto a ward. My troubles weren’t over yet, as later that day I started being sick. Soon my sick bowl was filling up every 2 or 3 hours with green bile, which was awful and very draining on the body, especially when it needed time to heal after such major surgery. I was whisked away for a CT scan, and it turned out that my remaining bowels—which should have been moving things along with a steady wave-like motion called peristalsis—showed no sign of moving at all. My bowels, and thus my stoma, were asleep. The scan revealed this to be the result of a postoperative ileus, a common complication of major bowel surgery where the bowels stop moving for a few days as they recover from the shock of the operation.
‘I had a life to live outside my four walls’
The vomiting every couple of hours continued for another 5 days. It went on through the night, and I felt terrible knowing it was keeping the poor people on the ward from getting a good night’s sleep.
After a couple of days, the team decided to catch the bile in my stomach using a nasogastric tube. Having a tube put down your nose and throat is not a pleasant experience at first, even with a drink of water to help it go down, but the sickness at last began to subside. My bowel had twisted a little, so a catheter was inserted through my stoma into my bowel to help straighten it out. It took 5 days for me to go a whole 24 hours without vomiting. That meant that the tube could finally be removed. I asked to pull it out myself; it felt weird as it was coming out, but oh so good when it was gone.
I could eat again! I had to start off with light low-residue foods that my stomach could tolerate digesting, so I began with jellies, Madeira cake and tuna sandwiches. I went home a couple of days later.
Though it is not without its challenges, my ileostomy has given me exactly what I wanted. Gone are the days when I had to draw up a toilet strategy every time I left the house, making every trip outside into a scouting mission for the nearest public loo. Each morning, I step out of my door without fear of an urge to rush back inside within moments, where I would go straight to the loo and take a long while to build up the courage to try again. Getting to and from work is now no trouble, and I can once again enjoy going out with my partner and my friends, bringing us closer together. It has made me far more relaxed and happier within myself. Having the ability to leave the house when I want has done wonders for my fitness, and I have joined a gym to get myself a bit healthier, which actually has been a lot of fun.
‘It has made me far more relaxed and happier within myself’
I went from being housebound to flying out to Spain twice a year to meet my parents who retired there, and my partner and I have been on a fair few holidays abroad to southern Spain and to Barcelona. We have also been boating on the Norfolk Broads, which was great fun.
Air travel with an ileostomy turned out to be fairly easy. I’ve not had any problems with ballooning, which is when the stoma bag fills up with air and becomes rock hard. I have also had no trouble with security when going through the scanner. There was one occasion when I was randomly selected for a search; I told the customs officer about my ileostomy, and we chatted about it while she undertook her search, and then I went on my way. She was very professional. She asked why I was wearing a support band, and I told her that, because I have a high stoma, it keeps the bag secure and stops it from flapping about. I asked her if she wanted to see the stoma bag, but she said no. A lot of airports have now had training to deal with people with stomas, and it makes journeys much less stressful when going through security.
I’ve found the key to a liberated life with a stoma is good care. I make sure to wear the appropriate support garments to lessen the risk of a hernia. At first I did have problems with the pouch not sticking to my skin. Luckily, I was made aware of the wide range of different pouches. My stoma protrudes a little, so I was recommended to try a convex bag. After ordering a few samples, I found the one that suits me best, and I haven’t looked back since.
When I change pouches, I try to keep it simple and avoid putting too many products on my skin. All I use is adhesive remover to help the pouch come off, a wet swab to wipe my skin clean and a dry swab to pat it dry. I then wipe all over with a barrier wipe before fixing the pouch, making sure it is secure and will not leak. When it comes to keeping skin healthy, I personally think the less you put on it the better. I’ve found showering without the pouch also helps keep the skin healthy by giving it a few minutes to breathe.
After 2 years of being able to get out there and enjoy the world I live in, I am loving life with my stoma. There are certainly challenges, and carrying a change of supplies in case of leaks can be a bit of a burden, but I have been lucky so far, with no leaks now I have a stoma bag that sticks fully to my skin. At first I couldn’t find a bag that would stick, as I have a dip in my stomach.
Eventually, after 8 weeks, I found one that does stick. You have to persevere and keep telling your stoma nurse if you are having trouble with bags and leaks; they will try to find the best solution for you. I encourage people going through a tough time with bowel disease not to panic and, above all, to see if a new approach can help you enjoy life fully.
Sue Taylor lives in the Midlands, UK, where she likes nothing more than a book and a glass of Bailey’s in bed. You can find her on Facebook.
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