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.

My Catheter Conversion

By Christopher Browne

I’ve just had to pay a large fine for wasting hospital time – or at least I should have done. That’s the view of a stomacare nurse when I told her I’d started using a Medina catheter for the first time.

“Just think, you’ve spent twelve years hanging around in hospital waiting-rooms, going to appointments with puzzled consultants and making worried phone calls about your troublesome pouch when all you had to do was use a catheter,” she told me.

And she was quite right of course. For in 1996 I was given one of these long thin plastic tubes by a nurse specialist at St Mark’s to try and clear my reluctant pouch.

I went home and after eyeing this gangly-looking object a few times, decided to take the plunge. I pushed it up my backside, and waited for some action, but nothing happened. “There must be something stirring in there,” I thought to myself and tried again a few days later. But once again not a drop. Niente. Nothing.

The next day I phoned the nurse specialist who’d given me the catheter and told her I couldn’t get it to work. She was philosophical and said I’d have to find another way to solve my  problems.

So I forgot about catheters until earlier this year when I saw Simon McClaughlin, a St Mark’s research fellow, about my pouch-emptying difficulties. He tested, scanned and probed with aplomb as he sought to find the causes. All the results showed a fairly normal-looking pouch. “But I’m having all these blockage problems whenever I go to the loo,” I said. The refrain I’d used with every other consultant I’d visited. He said the various post-pouch ops I’d had for ulcers and dilation had left scar tissue and lesions in parts of the anus.

I had two options. One was to use a Medina catheter. The second was more drastic. Abandon the pouch and have an ileostomy.

I booked an appointment with Beccy Slater, a pouch specialist nurse at St Mark’s. On the day of the visit, Beccy asked me to lie on my side and gently inserted a catheter up my backside. A few seconds later a giant tidal wave cascaded down Harrow-on-the-Hill (at least that’s what it felt like). For my pouch emptied like it had never emptied before as kilo after kilo seemed to pour into Beccy’s red bucket.

“You’re doing well,” she said reassuringly. Then she handed me the catheter and asked me to do the same. I took the plunge and “whoosh” another outpouring. “This is turning into something like fun,” I thought when I realised the catheter really worked after all. Beccy was positively glowing too and I went home a happy man.

That was six months ago. Since then my life has been transformed. I can relax, instead of mildly straining, on the train to work, I can write news stories without having to pause for a comfort – or in this case discomfort – break and I can visit friends and go to dinners, parties and social events feeling upbeat and cheerful. I even went on an eight-hour flight to Miami with no real problems recently.

Why did my catheter conversion take so long? There were two reasons. The first was ignorance. The nurse who first gave me the tube assumed I knew how to use it. However instead of pushing it seven or eight inches up my backside, I’d assumed it started about two inches from my so-called entry-point. So my weak thrusts were in vain.

The second reason was reluctance. No one exactly relishes endoscopes, surgical devices or thin plastic pipes being pushed up their backsides, however many times they might occur. But some are braver, or more determined, than others. I was one of the others.

However Mr Timid has been replaced by Mr Bold. I have used the catheter every day since June this year, visiting the loo two to four times – instead of nine to 10 times – in 24 hours. Each time I use four to six syringes of water (this depends on liquidity and some people may need less) to help ease the stools through. At first I used Lignocaine on the tip of the catheter. I now find wetting it works too.

Each visit takes 9-12 minutes which is only half-an-hour a day. Before I spent at least 90 minutes in the loo. I also find I don’t need to go to the lavatory the normal way anymore. I go just after breakfast and immediately before bedtime and try to fit in at least one visit in between – although I found using a catheter at work tricky at first. My company’s loos are grouped side-by-side with slim partitions between them. My solution was to use one that had been set slightly apart from the others on another floor in the building. Fortunately most offices have self-contained loos and you’ll find those slightly longer visiting times are offset by only needing to go once during the working day (some may need two visits).

Six months later I am living a simpler, easier and more controlled life. In the day I am a buoyant, far more sociable and, I like to think, effective human-being. Just as Simon said I would be. I also sleep better as I don’t have to get up in the night to go to the lavatory.

My advice is this: if you’ve ever had any qualms about using a catheter, persevere or make an appointment with your local pouch specialist and ask him or her to show you how it works. You may be reluctant at first but once you’ve succeeded, you’ll never look back.
As for me, I’ll always be grateful to Simon and Beccy for converting a once bashful patient into a Catheter Convert.

If you’ve any concerns or want to discuss using a catheter, please contact me on 07939 110842 or cbrowne@brownemedia.co.uk I’ll be happy to talk to you. Or for a more professional opinion speak to your hospital’s stomacare department.

You can read all about Medina catheters in Simon McLaughlin’s exclusive survey in a  recent issue of Roar!

From Rome to Raphael

How pregnancy and childbirth affected my pouch

Knowing that many pouch owners have trouble conceiving, I feel almost guilty that my baby began more by chance than design, his existence more the result of a romantic weekend in Rome than of concerted effort.

However, once I discovered that I was pregnant, all sorts of questions began to worry me: would my pouch, created three years ago, be squashed by the growing baby? Would my absence of colon limit the baby’s nourishment? Might the pouch be damaged during childbirth? If I opted for a caesarean section, would the incision hit adhesions, and the wound heal properly given my already extensive scarring?

These worries might sound silly now, but they were pretty real to me at the time, so I decided to see a private specialist obstetrician for ante-natal care. My anxiety about being treated as a ‘normal’ mother-to-be on the NHS was heightened when I attended an ante-natal clinic at my local hospital. At each visit, I was seen by a different junior doctor, none of whom seemed to know about pouches, let alone any pouch problems associated with pregnancy.

In the end, the cost of private care was too high, and actually proved unnecessary. I asked to be put on the books of a consultant obstetrician at the local hospital, who reassured me with his knowledge of my situation, helped by an informative letter from my pouch surgeon.

The hospital consultant explained that one risk of having a caesarean was that an adhesion might accidentally be cut (the pouch itself is too far behind to be in the way), perhaps making swift additional surgery necessary to fix my digestive plumbing. However, an advantage of being at a large NHS hospital was that surgeons would be on standby in case that happened. I still preferred this option to the risk of rupturing an adhesion during labour.

Pregnancy had no effect whatsoever on my pouch, certainly in the early months. The baby settled to the left of my central scar, perhaps because adhesions to the right (where the stoma had once been) left him too little space to manoeuvre. This meant that my belly looked a little odd, and the scars didn’t stretch as much as the skin, but it felt fine.

I had to go to the loo (pouch) a little more frequently during the last month or so of pregnancy, but the consolation was that I did not suffer from constipation, which is otherwise common during pregnancy. My diet remained the same, with the addition of multi-vitamins and more fluid, and I put on weight as normal.
I must admit to feeling great relief when my pouch surgeon recommended an elective caesarean, although I could have opted for natural childbirth had I really wanted to. Somehow I felt unperturbed by the prospect of an operation – I was after all an old hand at abdominal surgery. But the rumoured agonies of natural childbirth were utterly horrifying to the uninitiated. Stitches in my tummy I can cope with, but there – no thank you! Better the devil you know…

I was fully conscious during the birth, although numbed from the diaphragm downwards by an epidural. Giddy with hope and anticipation, I giggled all the way through the operation, and was able to welcome Raphael as soon as he made his grand, if undignified, exit (or should I say entrance?). The epidural also meant that I did not have to recover from a general anaesthetic, which was a blessing.

I then spent five days in hospital, standard for post-caesarean recovery, during which I learned the basics of baby care under the much appreciated supervision of the nursing staff.

A close eye was kept on the wound, and the transition from drip to fluids to solid food was made slowly, because this had been problematic after pouch surgery.

The point where the caesarean scar crossed the long central scar took a little longer to heal than elsewhere, but six months on is almost invisible. Because of the scar tissue, I may only be able to have one, or at most two more caesareans, but a hat-trick will be quite sufficient.

My life now is unrecognisable from my ‘pre-Raphaelite’ period, but the pouch has remained efficient and trouble-free. Obviously, women must make their own decisions about pregnancy and childbirth, guided by medical expertise, but I hope that my experience will help to reassure and encourage. My journey from Rome to Raphael was not a difficult one, and now I am thoroughly enjoying the fruit of my (lack of) labour.

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.

Stuck in Paris with nowhere to go – The…

Brian Gaherty happened to mention to one of his fellow Red Lion members that while on holiday in Paris a couple of months ago he developed an alter ego. This was a mistake because he was ordered to spill the beans in an article for Roar!

One thing about suffering from any sort of bowel disease is that you tend to lose all sense of shyness in telling others about problems “down there”, but in Paris I was to take this one stage further.

There is a lot of talk about equality, but in Paris, ladies, this just isn’t true. I know, because in the toilets of those famous bars and cafes you get the proper pedestal jobs while we men are often faced with the simple hole in the ground.

For those of you that have never seen one, how can I describe them. Well for starters imagine seeing a hole in the ground the size of a dinner plate with the imprints of a pair of size 20 feet facing you – that’s an old fashioned French toilet.

Or let me put it another way: it rather looks like someone has done a midnight flit with the toilet and I half expect the police to burst in to take plaster-casts of the footprints left behind.

In the days pre pouch I would use them with the best of them, crouched over the whole with my feet lost in those footprints, tense with the anticipation of hearing the plaintive cry of the last intrepid person to use it welling up from below.

Out I would walk to the sound of squelching feet from the footwear sodden by the tidal wave that results from the flush, back into the bar to listen to the French saying “There goes another Englishman who fell for the old ‘let him use the old hole in the ground rather than that new toilet you installed for us’ ploy…”

Happy days – but that was before I developed a scatter-gun approach to pebble dashing the porcelain and so I have succumbed to my alter ego, who I would suspect the Sun to term “loony uses Ladies Loos”.
Of course, this being France, it is not as big a deal as sneaking into the Ladies in the UK. Often you find that the ladies and gents share the same entrance way, usually with the men’s urinal in the foyer next to the wash basin.

My favourite bar at least separates the urinal with a pair of saloon doors so that you can throw in an entrance fit for the climax to High Noon, and it is handy being able to continue your conversation without any interruptions for your call of nature.

So, back to my last visit to Paris, and after several visits to prospective bars for a drink and bite to eat, only to leave after a whispered “it’s a hole” and having given up on finding a bar where the loo-nappers had not preceded me, I gave in to my alter ego and sidled into the Ladies for the first time and never looked back.
I haven’t seen any reports in the local press yet about a woman being shocked to find a man coming out of their loo but there’s time yet. In the meantime does anyone know the French for “I can explain officer”?