Who is Stephanie Zinser?

A woman with the guts to be honest
The Daily Telegraph, 21 March, 2003
By Christine Doyle

Bowel disease is a taboo subject. Christine Doyle meets a woman who not only talks about it, but wrote a book as well.

Stephanie Zinser places a bowl of strawberries and mango between us. She looks a picture of health as we talk about her reasons for wanting to write a wonderfully detailed book about the digestive tract.

Indeed, Zinser, a former investment banker, hopes that The Good Gut Guide will become the “Dr Spock of the gut”, essential reading for those gripped by any digestive trouble from attacks of spasm, flatulence, constipation or gastritis to more acute inflammatory conditions or cancers.

Zinser, 39, has first-hand experience. For more than 10 years, she lived with acute ulcerative colitis (UC), an inflammatory condition that started when she was 25 and pregnant with the first of her three children. The disease occurs when the lining of the colon or main bowel becomes sore and inflamed and develops tiny bleeding ulcers. Pain, diarrhoea and “a desperate urgency to rush to the nearest loo” dominated her life, she says.

During the worst flare-ups, Zinser was “taken short” more than a dozen times a day, often for months at a time. Extreme cases may eventually require surgery, as she did, to remove the ulcerated part of the colon. Those with milder cases manage to avoid the scalpel and develop drug and dietary strategies to keep the condition in remission for as long as possible.

Sufferers generally develop the disease between the ages of 15 and 35, and it affects more than 100,000 people in Britain. Unknown environmental triggers interacting with a genetic susceptibility may explain many cases, but the basic cause is unclear.

Smoking does not irritate the gut in UC, though it is implicated in Crohn’s disease, another major inflammatory illness. Interestingly, recent research suggests that nicotine patches ease acute ulcerative flare-ups, but do not prevent them occurring.
When Zinser’s troublesome bleeding started, she had never heard of UC. “First, I thought I must be having a miscarriage,” she says.

“Then, I thought it must be piles, caused by the weight of the baby, and that they would disappear after the birth.”

When the bleeding and diarrhoea continued after her daughter’s birth, the first diagnosis was proctitis. This inflammatory gut condition is confined to the rectum, and taking drugs and avoiding possible food triggers usually drives it into long remissions.
In Zinser’s case, however, the sinister inflammation and ulcers spread into the colon and began to “track” around its length, like a slow fuse.

She took drugs such as Salazopyrin to ease the symptoms and encourage remission, adjusted her diet to avoid high-fibre food that can aggravate this particular bowel condition and “squirted foams and liquid retention enemas up my bum”. These measures were largely in vain. Zinser’s remissions became fewer and fewer and the flare-ups more acute. “I was determined to keep family life on an even keel, but with three small children, I was permanently exhausted – and moon-faced with anti-inflammatory corticosteroids.”

Eventually, in 1998, after suffering profuse, uncontrollable bleeding and several emergency stays in hospital, Zinser’s treatment options had narrowed to one. Her surgeon, Professor John Nicholls, recommended removing her entire large bowel.

“I knew it would be complex and painful – and it was,” Zinser says. “At the time, though, at the age of 34, I was frightened and concerned about having to wear a colostomy bag for the rest of my life. I mistakenly believed I would have to wear huge, loose clothes, never enjoy scuba diving or even bask on a beach again.”
However, surgery of the bowel is advancing rapidly. In a two-stage operation, a section of Zinser’s small bowel was “refashioned” to form a natural, internal reservoir for digestive waste, so that she could start using the lavatory almost normally. She wore an external colostomy pouch for only a few weeks while her “new bowel” was healing, and was euphoric when she finally came home with her “revamped gut”.
This operation is not suitable for everyone, but, almost five years on, Zinser has not been disappointed. Within a few weeks of being discharged from hospital, she felt her energy and confidence return, and resolved to try to lift the taboo that surrounds bowel disorders. “I know the humiliation first hand. Bowel diseases are like skeletons in the cupboard that we never talk about, and it is time to give all those skeletons an airing.”

When ulcerative colitis was first diagnosed, she felt embarrassed and ashamed, and told no one except her husband, Stephen. “He had to know why I was always rushing to the bathroom. I felt it was affecting my femininity. There is nothing romantic about this disease. I would have preferred to have almost any other disorder – something gynaecological, perhaps. You expect women to have such problems. I didn’t wallow in self-pity, but I did sometimes ask: ‘Why me?’
“I even began to feel I was becoming worthless. I am very lucky though – Stephen was fantastic. Nothing ever changed between us.”

Zinser devotes a chapter of her book to the way a serious gut disorder can affect your body image and your ego, lead to anxieties about your sex life – “for some people, it can be a passion killer” – and at times make sufferers miserable and depressed.

“My experience, I think, pinpoints how much of these things are in our heads,” she says. It is because of what we are brought up to think about. We have a great love of scatological humour. It might defuse some fears, but, by God, the jokes don’t make good reading if you have an acute gut disorder.

“I decided quite early on to start talking about what was wrong with me. I felt that if I was asking friends for favours, like picking up the children from school and so on, they deserved to know what was wrong. And I wanted close girlfriends to understand. Nobody really knew anything about ulcerative colitis. Most were sympathetic and horrified for me rather than at me. They knew I was not infectious - and I was not going to spoil their carpet.

“Only one person was really horrible. She told me a great aunt of hers had my problem, and called it “that disgusting disease” as if I had brought it on myself. I remember thinking this must be how women with breast cancer felt before all the awareness campaigns.”

Yet, with so many advances ion surgery and drugs, most sufferers can be optimistic. Zinser has never looked back. “I can eat virtually anything now,” she says. “I feel that I have been cured.”

“Talk destroys taboos, and information saves lives.”

"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

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