25th anniversary special – from the first chairman of…

The first chair of the Red Lion Group reflects on the heady days that marked the launch of the Red Lion Group on 10 April 1994

I remember well my time in St Mark’s Hospital in City Road. I was very ill with a severe case of ulcerative colitis that had not responded to medication. I was admitted to the very old and rather shabby St Mark’s in London’s City Road in a very weak state to be treated with intravenous steroids and methotrexate. After some weeks I was advised to have surgery and offered a pouch operation by my surgeon Mr Peter Hawley.

I was warned of all the possible complications but I was so ill that I didn’t take any time to decide on surgery as soon as possible. All went well and, by day two, I was feeling so much better but very weak. Over the next two years I was readmitted to St Mark’s on numerous occasions because of obstructions due to adhesions requiring a number of major surgeries to combat the problem. This all happened over 30 years ago and now seems just like a bad dream.

Twenty-five years ago I was contacted by the St Mark’s stoma nurse specialist Celia Myers to see if I was interested in discussing ways in which we could help pouch patients and those considering pouch surgery. The group met in the then new St Mark’s Hospital in Watford Road, Harrow.

Celia’s name should go down in history as she was the inspiration that caused the group to come into existence. Tim Rogers, Roar’s designer, was there too. The names of the other founder-members are recorded elsewhere.

We were told that we needed a chairman to run the meetings and perform certain tasks and duties. No one seemed keen to take on this job so I volunteered.

I was chairman of a number of charity groups and medical conference organisers so I thought that one more job could be fitted in somehow. We decided to call the new charity The Red Lion Group and chose the cute little lion as our logo as we felt that it was non-threatening to new members.

After about two years the group had an established membership, a newsletter run by the same team as it is now, and we were a registered charity. At this point I felt that it was time for me to pass on the chair to new blood.

I have always maintained an interest in the group and receive Roar! regularly. I believe the group does a wonderful job because I have always maintained that no matter how experienced a pouch nurse or consultant may be only someone with a pouch can really understand what it feels like to have a pouch with all its peculiarities of sound and motion!

I know that when I was faced with the choice I would have loved to have someone to talk to who had been there, done it and got the T-shirt.

I am very lucky to have a pouch which behaves itself almost all the time. I have lived in Spain permanently for 20 years now and can eat anything and what’s more do. I have been admitted to hospital once here for an obstruction and was delighted to find that the surgeon in charge had been trained at St Mark’s by Peter Hawley and knew all about pouches.

I am looking forward with great anticipation to the April 2019 Information Day and the 25^thanniversary of The Red Lion Group. I hope to see lots of you there and swap pouch 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.

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”?

Three Ops and a Baby

Jo Driver found that ulcerative colitis was an  unexpected precursor to motherhood.

I was ten weeks’ pregnant when I had my first – and last – attack of colitis. Not content with having the usual morning sickness, indigestion, backache etc, I decided to be more dramatic!

However, having the colitis and the subsequent sub-total colectomy and ileostomy (at 12 weeks’ pregnant!) certainly prepared me for motherhood. Getting up numerous times in the night to go to the toilet was good training for the sleepless nights to come. Emptying my bag made changing nappies seem like child’s play.
There were other advantages, too. Of course, I had no piles or constipation to worry about. Plus I avoided the condescending pats on the stomach, because people were too afraid to touch something embarrassing! And no messy “accidents” at the birth, no worry afterwards about straining and bursting my stitches (mothers will know what I’m talking about here). I was also complimented on how clean my stitches were – strange, that!

Of course, there were some disadvantages: having to wear a garish, patterned pink, gold and green maternity swimming costume to “hide” my bag; having to have an indecently long stoma so that I could see it over my bump (I felt like a hermaphrodite!); best of all was having a bowel obstruction at 7 months’ pregnant , and being told I was in premature labour! I have to say, labour was less painful. Still, they gave me lots of entonox for the pain – highly recommended, or should I say a recommended high?! Obstetricians, midwives, delivery suite, scans – I don’t know – all that fuss for baby muesli….. Premature labour, my foot.
Anyway, back to my attack of colitis at ten weeks’ pregnant. To avoid puncturing my colon, it was decided after two weeks that I should have the operation. I christened my stoma George. The nurses were pleased at his arrival – they were all starting to get severe RSI from writing details on my stool chart.

George was very well behaved, unlike the stoma I had after my next op, the temporary loop ileostomy and formation of my pouch. I called him George II, although I think George III would have been more appropriate, as he was completely mad.

He would have outbursts in public – he didn’t care where: backs of taxis, barbecues, friends’ sofas, an Indian restaurant. That last one was the best – I had already used up my spare bag and I was miles from home. I decided that to avoid needing a skin graft, I’d better get to the nearest A&E (which, in my case, stands for Accidents and Effluence). Of course, I wasn’t really a priority on a busy Saturday night and resorted to sitting on a pile of magazines to soak up my “homemade curry” (I sat on a pile of Hello! magazines, on the grounds that what was coming out of my stoma would blend in nicely…).

Eventually, after a few hours (ouch!), I was taken to a room and shown a range of bags. I’d pull the curtain and try one on – no good, next please and what about shoes to match? They were all colostomy bags, but better than nothing. My poor husband had to drive from Enfield to Penge in the middle of the night, stopping off at shops on the way for bottles of water – he needed them to dilute his alcohol content, because he hadn’t planned on driving, and I don’t need to tell you what I needed them for. Poor George, it wasn’t his fault – he was just a funny shape and very close to my skin. And of course, it was all worth it in the end. But I must admit, I started making so many deposits, I thought I’d been reincarnated as a pigeon.
Conversely, my pouch has been impeccably behaved. Apart from getting an infection after its formation, and therefore not leaving St Marks until Christmas Eve – I’ll go to any lengths to get my husband to cook Christmas dinner! – my pouch has been wonderful. As are Mr Nicholls and his team; all the stoma nurses that looked after me; Mr Swift and Mr Hurley, and their teams from the Mayday in Croyden, and Mr Theodossi and his team from the same hospital. Oh, and of course Mr Clarkson, my obstetrician, who must have spent a few nerve-wracking hours overseeing my colectomy.

Yes, I’m glad I didn’t decide to become an eternal ostomist. OK, so I need soundproofing on my bathroom walls; my homemade curry results in  “Poucho Marks”  on the sheets (so strictly for when I’m on my own), and I’m buying shares in Sudocrem. But I made the right choice.

So if having an ileostomy isn’t your bag and you want to start using those bendy bag closures as freezer bag ties (very handy), go for it if you can. You don’t have anything to lose, apart from a few months off work! Blast the resulting itchiness…BOTTOMS UP!

By the way, my pregnancy went smoothly after my blip at 7 months and I gave birth naturally to a beautiful baby girl ( naturally to a girl – they’re stronger in the womb!). She’s now five and a half, with gorgeous red curly hair and blue grey eyes. Sally Louise, you were worth every bit of my story, and thank God for making you so strong…