Stories

World champion fitness model swaps stoma-bag for J-pouch

Body image is the most compelling reason why most of us opt to have an ileal pouch. So someone who not only chooses to have an ileostomy but is brave enough to flaunt her stoma-bag in front of hundreds of people as a world champion bodybuilder is truly unique.

After several painful spells of ulcerative colitis, Falmouth-based Zoey Wright had an ileostomy and then took up bodybuilding to improve her fitness and to help regain her strength. Then in November 2017 the 26-year-old was crowned Overall World Champion Bodybuilder in the Pro Elite bodybuilding championships in the UK.

“I chose to step on stage, despite my stoma-bag, to prove to myself and others that the impossible is possible and ever since it’s been my mission to face new challenges and defeat the odds,” said Zoey who since winning her title has become the face of USN, the leading sports nutrition brand.

“When I saw my surgeon after the ileostomy he asked if I wanted to have a J-pouch fitted and I said I am fine –  I’m actually enjoying my life with a stoma-bag and it has caused me no issues whatsoever,” she said.

However after winning her world title, Zoey started having problems in her pelvic area “so I spoke to my surgeon and said I had changed my mind about having J-pouch surgery,” she said.

The Cornish athlete is now due to have the first stage of her two-stage J-pouch operation at the Royal Cornwall Hospital, Truro, in the next few months.

Someone’s Looking After Me

Karen Hawkins’ journey from purgatory to pouch took three years and at times the going was extraordinarily tough. She can hardly believe her luck now that she has a healthy pouch and a baby too.

How life can change. Three years ago I had been struggling with ulcerative colitis for six years. I never felt well and I used all the strength I had to work. I had not believed for sometime that I would live to be thirty. This was something I would occasionally mention when I was particularly low and it did not help my husband one bit.

Surgery was suggested whenever I had a short remission, but I told myself, if I could have a remission, I should get better.

A holiday of a lifetime was planned, Jeff thought the rest and relaxation would be of benefit. We flew to Barbados. A beautiful country, but all I could think of was the flight, how would I manage? A couple of weeks before we were to leave the colitis flared up with a vengeance. Up went the steroids and the whole regime began again. Whether it was the pressure of the holiday or just bad luck, this time I could not kick the colitis to touch.

I had been in this situation four years before. The theatre was booked for my ileostomy. My colon was swelling out of control, I was X-rayed every day. Someone was looking after me, the day they were to operate I had a reprieve. The doctors could see an improvement.

It was considered that the holiday would let me rest and I might improve. I was to fly. I don’t remember much of Barbados except the bathroom and bedroom and the recurring nightmare that the ‘witch doctors’ would get me. I could not eat or drink, I was dehydrating fast in the humidity. I was distressed that my husband was having such a poor holiday that should have been such fun. I did not think I would get home. How I wanted to embrace the NHS.

Laying in the hotel bed I knew I could fight no longer. The diseased rat inside me had won: it had to go. I would have to have an ileostomy. It had previously been discussed on many occasions that I might like to have pouch surgery. A fine idea in theory, but what if it went wrong? What if I could not cope? What if I were incontinent? Well I was worse than incontinent now and I had blown it. There was no way I would get elective surgery now, I knew I was an emergency. I was taking 65 mg of prednisolone; it was 55 mg before I left home, but everything was leaving me so fast I just wanted some of the steroids to get me home.

The flight home lasted a gruelling 10 hours with a change at Tobago. My memory of the whole journey is a blur. I just gritted my teeth and closed my eyes. Please God get me home.

We returned Sunday afternoon. I was so exhausted. First thing Monday morning I was calling my consultant. ‘I am so sorry, you’re right: I need the operation’. They knew I must be really bad to ask for surgery. I was admitted that day and put on intravenous steroids and saline drips.

My skin was blistered, not from the sun, but from the high dose of steroids I had been taking. I was too unwell to have an operation. Not only the NHS but someone else was looking after me.
For the next two weeks the physicians cared for me, getting me strong enough for surgery. I needed nourishment to repair, I had not eaten for two weeks. I was transferred to St Mark’s. I was sure the surgeons would turn me down for any elective surgery as I had let myself deteriorate so badly. They held no promises. I had to have a colectomy, that was in no doubt, but what they could do, they could not say until they got in there. With all things considered like the high doses of steroids, my poor condition, who could say? I woke from the surgery. I don’t care, I’m still here. What did they do?
They had made me an ileo-anal pouch in one go. My God, I’m going to have to look after this, someone’s looking after me.

I made my recovery very carefully and strategically, careful consideration was made about everything I did. This chance was not going to be taken away from me. I did not want to crumble, so I took it easy.
I did not want the pouch not to work, so as hard as it was after so long, and as scary as it was, I began to drink when allowed, and gave myself very simple foods to start.

Within a few months I was swimming 60 lengths a day in an effort to build up my strength. I noticed I had a life already. The pain of the surgery was negligible in comparison to the colitis.

I was well, I was cured. I wish I had done it sooner. In September 1996 Jeff and I had our very first child, a precious baby daughter, Ellie. We never thought we could be this lucky, we were told for so many years I was just too ill to consider children. If I had carried a child full term, would I have been well enough to look after it?

The fact was that I was so well during my pregnancy that my friends and neighbours did not know I was pregnant, I just got on with life. I appeared so well. When the baby was born – by caesarean – I was asked ‘whose baby?’. When I said she was mine, neighbours said, ‘But I saw you working the other day, I saw you down the road and thought you looked so well’. I am now 32 years old, I had just one operation. I am well and we have our family that I can care for. Someone is looking after me.

When Rita Went Travelling

Sandy Hyams has some good advice for those whose attitude is “have pouch, will travel”.

However many times I travel abroad, I still get a kick out of it. I love the atmosphere at airports and the experience of flying. I think it must be in my blood; my father was in the RAF when I was born. So when I had to cope with an ileostomy for a year, I vowed it would not spoil my holiday plans. And it didn’t. With a brand new pouch for a travelling companion, I didn’t foresee any problems.

I have christened my pouch Rita Reservoir. My ileostomy was known as Stromboli Stoma because he was always erupting. So it only seemed right to give my pouch a name, too. And because my system had to adjust and my dietary habits be re-educated, Rita was born.

My husband Eddie and I had enjoyed a few days in the sun over the Christmas period, which passed, unbelievably, with no complications. The flight was short and the hotel a high standard (that is, first-rate hygiene in the kitchens). I was extremely careful what I ate and drank, perhaps erring on the conservative side. I didn’t want to upset Rita at this early stage of our relationship.

So when we were preparing for an extended trip earlier this year, island-hopping in the Canaries, I was confident that nothing could go wrong. Rita was six months old and I thought she had cleared all the hurdles by then. Looking back, I realise how over-optimistic and complacent I was.

The first inkling I had that perhaps things would not go as smoothly as I hoped was when I had three “accidents” during the night in the space of a week just prior to leaving. My surgeon put it down to stress and anxiety and advised me to increase my dosage of medication. Until then I was taking six Loperamide and four Codeine Phosphate daily – which gave me a gratifying average of five or six trips to the loo each 24 hours.

I am one of those people who make lists of lists. Not that I’m a worrier, just conscientious. Packing and organising my life, especially for a trip of nearly six weeks, always throws me into a state of panic, not to mention paranoia and confusion. It was no wonder I was under stress.

As I am still prone to leakage I had to find room in my case for bulky items like sanitary towels. I never thought I would be wearing them again! I also took a few Incopads to protect the mattress – extra reassurance in case of humiliating accidents in strange beds. (Sleeping on top of a towel is a good substitute if you have this problem.) But I carried all medication in my hand luggage. To lose a suitcase containing all my “stoppers” when I don’t know whether I can get to a chemist doesn’t bear thinking about! I had also taken the precaution of getting a prescription for Metronidazole should pouchitis strike. (Thankfully not needed!) Another useful remedy to pack is an oral rehydration product such as Dioralyte that quickly replaces lost body salts if you get diarrhoea.

I always keep an emergency kit with me, tucked into my handbag. (I realise this could present difficulties for male pouch people!) There’s a slimline ST, sachets of disposable cleansing tissues and a tiny plastic box which I’ve filled with the soothing cream I use. Away from the comforts of home – or hotel – I have found the kit indispensable, especially if I’m out for a meal.

As we pouch (and ileostomists) need to drink plenty of liquid at all times, a small plastic bottle of water goes with me on long car journeys. This also means I can take my tablets on time wherever I am. From where we live out in the sticks in Norfolk, getting to Heathrow or Gatwick can be a three- or four-hour drive, and it is often not convenient or possible to find somewhere to stop for refreshments.

At least we had pre-booked seats near to the loo (just in case) on all our flights. The longest leg was the first one, to Las Palmas on Gran Canaria. I must admit I had a couple of glasses of wine with my meal, which probably accounted for “using the facilities” three times during the journey! If you advise the flight crew of your predicament and that you’re likely to take longer than the average person (especially if you have to wash and cream yourself), I have found them all sympathetic and willing to help.

Am I just unlucky or have other people come across the “knock on the door” syndrome? This happened to me not only on aircraft but in hotels, restaurants and public conveniences too. When I finally emerged, I would just apologise and explain I had a medical problem. Most people were understanding. I also get embarrassed by what I call the noise factor. Sometimes it’s more explosive than others – but there isn’t much you can do about it. Sing loudly? Have a phoney coughing fit? Continually flush the loo?

I don’t know if it was the fact that I was eating less cautiously, drinking more coffee or having wine every day – or a combination of all three – that took my daily count up to seven, eight or even nine. I decided to relax and hope it would improve. In fact, it didn’t settle down to six or under until we were back home a while.

Something I have learnt, to my cost, is that red wine makes my output extremely watery. However, one tip that I picked up during the ileostomy days works equally well for pouch people. I just chew a few marshmallows which almost immediately thickens up and slows down your output. I always take a bag of these sweets for just such occasions.

Another thing to remember in hotter climates is to drink plenty of liquids (and I don’t mean wine or beer!) to stop you dehydrating. Too many sweet, fizzy drinks are not a good idea either, so I consume vast quantities of still bottled water.
The extra visits to the loo were more of an inconvenience than anything else. It meant we daren’t chance a long hike through the spectacular scenery of La Gomera, one of the smallest and least spoilt of the Canary Islands. We had to plan our days around the times I was likely to be taken short so that I was in reach of a clean loo. And it meant we couldn’t watch the Holy Week processions in Seville where we stayed a few days to break our journey on the way home. Imagine a football crowd, treble it, and think of finding a toilet on the streets of the city!

However, I would not let any of it mar my enjoyment. When in Spain, we do as the Spaniards do and eat late in the evening – at 9.30 or 10 o’clock. I worried needlessly that it would cause problems getting up in the night. In fact, dining later seemed to have the opposite effect and I was able to sleep through and often didn’t need to empty my pouch until 10 or 11 the following morning.

One thing I was able to do that I never dreamt would happen again: I wore a bikini for sunbathing! I have heard of women who are too embarrassed to show their war wounds, particularly if they have “tram lines” down their middle. Fortunately my surgeon had followed the same cut for the second operation and I was left with a neat furrow and what now looks like an old-time vaccination mark where the stoma was. Maybe I’m a good healer but, with gradual exposure to the sun, the scars have grown fainter. I would not advise this for people who don’t tan easily, though. After all, it is new skin that is growing.

I have compiled my own list of Do’s and Don’ts when travelling abroad, most of which are just good common sense:

• DO take sufficient supplies of medication and carry them in your hand luggage
• DON’T drink tap water or washed salads (unless you know it’s safe)
• DON’T put ice cubes in your drinks (ditto)
• DO peel fruit before eating
• DON’T experiment with exotic new foods on holiday – you don’t want a tummy upset
• DO drink more liquids than usual in hot climates to stop dehydration
• DO have fun – after all you deserve it

One of the main differences between having an ileostomy bag and an internal pouch is that you can nearly always calculate when you will need to empty a bag and plan accordingly. With a pouch, in my limited experience, you never know when one might come. “They” tell me things will improve, even up to five years after the operation. I hope “they” are right. But there is no doubt whatever – Rita is going to be a very well-travelled reservoir.