Features

I was only 34, yet felt I could not look attractive again.
Daily Mail, 31st March 1998
By Stephanie Zinser

The prospect of needing a colostomy bag would fill any young woman with horror. Yet former HeartLine charity director STEPHANIE ZINSER, 34, faced up to the terrifying surgery and came through it determined to spread the word that people are dying of bowel diseases rather than confronting their fears. Here Stephanie, who lives with husband, Steve, 40, an investment banker, and their children Emily, nine, Jenny, six, and Katherine, five, in Cobham, Surrey, tells her searingly forthright story.

My first symptoms of ulcerative colitis – a progressive disease of the colon that causes ulceration – came when I was 24 and only just pregnant with my first child. At first, I thought I was having a miscarriage. My doctor diagnosed proctitis, a localised form of colitis. It was irritating and uncomfortable, and not helped by the fact that I was pregnant or was breast-feeding three times within five years and therefore had to be careful which drugs I took.
I became used to having urgent and unpredictable bowel habits, and suffered two or three attacks every year when my symptoms would flare up. It’s a condition that about 140,000 Britons suffer from and, unlike some, I never enjoyed a complete remission between attacks.

But I found it hardest to come to grips with the emotional effects of the illness. Even though my husband, Steve, was at ease with it, I found my self-confidence suffered from the outset.
Once I had been a slim, active and attractive young woman. Suddenly I felt unattractive, with a despicable disease that was constantly embarrassing me. Having the urge to rush to the loo undermined most of the activities I used to enjoy and take for granted; dinner parties, visits to cinemas and restaurants. Even intimate evenings alone with my husband were intruded upon.

My illness progressed gradually between 1988 and 1994. I stumbled along with various medications. What was once the subject of a good joke was now a soul-destroying feature of my life.
Instead of lying down with my husband at night, I was struggling to administer treatments, and would fall asleep on my side, crying inwardly. I often wondered what I had done to deserve such a humiliating situation. At several low points I seriously wondered if he would stay with me.

By 1994 the illness was worsening and, eventually, I was admitted to hospital. By this time I was suffering 14 attacks a day and feeling totally exhausted.

Treatment at this stage was intravenous prednisolone, a steroid. After ten days on a drip, I had improved enough to be allowed home to continue my treatment on steroid tablets.

It was great to be relieved of the worst symptoms of colitis, but I was not so happy about the side-effects of the steroids. I gained nearly 20lbs and had a moon face caused by high doses of the drugs.
I also started noticing excesses of facial hair. It was thoroughly depressing. My options were either to feel awful with the illness or look awful because of the cure.

This growing frustration was to continue for three years. I started taking a drug called Dipentum, to help lessen the acuteness of attacks, and continued using steroid foams, enemas and pills. I never took fewer than nine tablets every day.

But after a few unsuccessful weeks I was readmitted to hospital. This time it was serious. I had lost a lot of weight – something that had never happened before. Eventually, the hospital’s surgeon came to talk me through the last option – surgery. I was terrified. I knew an operation had always been a possibility, but I had kept my head buried deeply in the sand.

It happens in fewer than a third of cases, so I thought I stood a good chance of escaping the knife. I was told about Professor John Nicholls, a wonderful surgeon who specialized in colo-rectal surgery at St. Mark’s, in Northwick Park Hospital in London. He would remove my colon and might also be able to construct for me an internal pouch using some of my remaining small intestine.

It would mean that despite having no colon, I would not have to wear an external ileostomy bag – which is the same as a colostomy, but from the small intestine rather than the colon – permanently. A relatively new procedure, the failure rates were significant (about 10-15pc ion the first year), but for a young, otherwise strong person, It was worth the risk.

Even though I was to have an internal pouch, I had to have a temporary bag while the pouch was healing after the first operation. It sounded like a nightmare. I was 34, I wanted to wear short skirts, tight jeans and pretty dresses. How could I do that with a bag stuck onto my belly? How could I ever feel attractive or sexy again? I kept thinking how lucky I was that I was already married, because it would be even more horrendous trying to date with an ileostomy. The day of the operation finally came in January 1998. In the three and a half hours that I was in theatre, I had my colon removed. Professor Nicholls then took my small intestine, looped it into a W shape, stitched it together to form a pouch, and attached this inside me. Then he took a loop of small intestine higher up, brought it out through an opening on my stomach, and opened it to form an ileostomy - my temporary waste disposal system for the next eight weeks.

The first 24 hours were very sore. Then I discovered the painkiller Pethidine in a big way. Each shot would remove me from my body and take me off to a comfortable sleep for a couple of hours. It became almost bearable. Within 36 hours, I had lost most of the drips, the drain, and the epidural. The physiotherapist even had me up and walking slowly.

In the 12 days that I stayed in hospital, I learned to empty and change my own appliances. Luckily I am not squeamish and quite practical, so it wasn’t so bad. I had been so worried that I would freak out after the operation, and here I was, coping really rather well.

Back at home, I was always incredibly tired. My sides ached and I was dizzy every time I stood up. I had little appetite and had lost more than a stone since the operation. I was put in touch with two people who’d had the pouch operation. It was comforting to speak to fellow ‘kangaroos’, who knew what I felt, and who had come through the other side intact.

Yvonne and Dick acted as my props. They were both young people leading active lives. I chatted to them, and they sent me information about the pouch group and IA – the Ileostomy Association.
By four weeks, I finally decided to try the school run. I was a little nervous about how I would be received - what people would say, how well I would cope with all the questions, whether I would notice people looking at my stomach for tell-tale bumps.

I stayed in the car most of the time, spoke to two or three people, and was fine. If I was sensible about draining my bag regularly, you really couldn’t tell that I was wearing anything, even with a fitted skirt. This was such a relief, and it meant that I was already wearing tight skirts as if to prove the point, and wave two fingers back at my illness and what it had done to me.

One evening I went to watch my eldest daughter in her school play. I looked around me and saw 300 parents and children. Only one had an ileostomy – me. At that moment it dawned on me that life wasn’t fair. The next day I wallowed in self-pity. I did nothing but cry. And then the clouds lifted a little. I started thinking about the reversal and how nice it would be to see my tummy again.

On March 6, I was readmitted. The reversal was a much shorter procedure. Where the part of my small intestine that had been sticking out of my body was stitched up and popped back inside again. It took about half an hour. Within thirty-six hours I was up and about, off my drip and finding that my new internal pouch wanted to work - and within four days I was back home.

There are certain precautions I will have to take in the future, as there are potential problems with a pouch. I do have to watch what I eat, as some foods will have a worse effect on me than others. But the upside for me as a pouch patient is enormous - the possibility of leading an active, healthy life with no more colitis, more energy, a positive and confident body image and a flat belly to fit inside a Lycra skirt.

One common casualty of this kind of illness is the sexual side of a couple’s relationship. The sufferer may feel terribly unattractive and need extra reassurance. Throughout the long years of my illness the thought that it would destroy my marriage, and make my husband feel he was married to ‘faulty goods’ was a real worry. But Steve has told me that he has never altered the way he sees me. He married me as I am, and to him I am exactly the same as I was in 1986. I am a very lucky girl.

"A splendidly detailed book... it will be a life saver for a great many people" Claire Rayner

"An invaluable book for anyone with a bowel or digestive problem" Prof. R. John Nicholls, FRCS

Click here to buy