An initial announcement that the Red Lion Group Information Day and AGM, 2019, will take place on Saturday 27 April at St Mark’s Hospital, Harrow. This will be another action-packed day catching up on the latest topics of interest to pouchees, potential pouchees and relatives and friends of pouchees! All welcome but numbers will be limited. Please keep the date free! More information will follow as the agenda firms up.
A research team of doctors at St Mark’s Hospital want to speak to people who have had a colectomy and ileoanal pouch due to their inflammatory bowel disease. They particularly want to speak to people who chose to have this surgery due to the finding of changes in the colon lining (called dysplasia). They want to learn how to better communicate and support patients through the process of deciding whether or not to have a colectomy and pouch for this condition. They can only do this if they hear directly from people who have experienced this and can tell them their stories and what worked or didn’t when speaking to their doctors. If you are interested in taking part then please do read the information via this weblink.
or you can email firstname.lastname@example.org for more information.
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.
The Kangaroo Club – a pouch support group based in Oxford – is holding its next annual Information Day on Saturday 6th October 2018.
Cost: Free of charge
Time: 10:00 a.m. – 4:00 p.m.
The aim of the Kangaroo Club Information Days is to give a chance to meet other people who have had colorectal surgery or who are eligible for such surgery. As well as time being given for informal discussion with other attendees, there is a full programme of more formal sessions led by medical staff from the Oxford Radcliffe Hospitals NHS Trust .
The Information Day on 6th October 2018 will include a full programme of sessions covering:
- Colorectal surgery as a specialty
- Pouch surgery: developments and variations
- What is normal?
- About Occtopus and The Kingston Trust
- Round table discussions – as suggested by pouch owners and for their supporters
- Questions and answers with the Colorectal Nursing team
For more information and to register to attend please click here
We look forward to seeing you there.
Revolutionary pouch report puts St Mark’s Hospital top of the league
Here are some key findings about pouches and pouchcare from the frontline – i.e the UK’s and Europe’s leading surgeons and specialist bowel centres.
(You can download the full report from the image on the left).
St Mark’s Hospital carries out more pouch operations than any other hospital in the UK and Europe – with Universitair Ziekenhuis Leuven in Brussels second, Edinburgh’s Western General Hospital third and the Churchill Hospital, Oxford fourth.
These are the findings of a recent survey, the Ileoanal Pouch Report 2017, published in July 2017 by the Association of Coloprotoctology of Great Britain and Ireland (ACPGBI).
The report covers the outcomes of more than 5,000 patients including 500 under-20s who have had pouch operations under the care of approximately 150 surgeons.
Among the report’s most significant findings are:
- Someone in the UK is diagnosed with Crohn’s Disease or Ulcerative Colitis – the two main forms of Inflammatory Bowel Disease (IBD) – every 30 minutes;
- At least 300,000 people in the UK have IBD in one form or another;
- About one-in-four people with UC will need an operation at some time during their lives, with pouch surgery being one of the most common procedures;
- The most popular type of pouch is the J-pouch, while the once-popular S-pouch and W-pouch have largely been phased out;
- Approximately one-third of today’s pouch operations are carried out laparoscopically – i.e with keyhole surgery;
- Most patients spend 10 days in hospital when they have a pouch operation. However, a surprisingly high 27.4% of patients need to be re-admitted within 30 days of their operation:
- Approximately 80% of pouch operations are successful and restore patients to a high quality of life;
- St Mark’s Hospital has carried out 159 operations in the past five years.
The report which was first published in 2012 makes the following key conclusions:
“There is clearly a compelling argument for centralisation of pouch surgery. The procedure is performed infrequently within a repertoire of surgical options available to patients having had a colectomy or needing proctocolectomy.”
“Intimate knowledge of all surgical options, considered experience in guiding patients to the option that may best suit them, and back-up from the specialised multi-disciplinary team is paramount in providing the best possible service for patients.”
“While there are undoubtedly some centres that are currently offering pouch surgery at low volume with good outcomes, this report indicates that they are probably the exception rather than the norm. And the future is likely to take a more pragmatic view when it comes to ensuring good outcomes and training the next generation of specialist surgeons.”
Like the first Ileoanal Pouch Report in 2012, the 2017 version is based on the latest data from the SWORD HES database and the Pouch Registry, a leading database set up by St Mark’s Hospital’s Emeritus Consultant Surgeon and Red Lion Patron Professor John Nicholls in 2015. The data is sourced from voluntary information supplied by half of the UK’s and Europe’s specialist bowel surgeons. surgeons.
You can download the full report from the Resource section of the Red Lion Group Web site.
Click here to Download.
This article appeared in ROAR! Issue 54: Christmas 2017.
You may have noticed that the discussion forum has been dropped from our new web site. This is because we have decided that in this age of social media, Twitter is a more appropriate platform. So going forward, our new Twitter account RedLionPouchSupport (@PouchRed) will be the new way to interact with the Red Lion Group and other Pouchee’s and people with an interest in the subject.
So please Tweet your questions or comments to @PouchRed.
We hope that in time, that RedLionPouchSupport will evolve into the leading discussion forum for informed discussion about Pouch’s and Pouch related topics.
The 2018 Information Day took place on Saturday 12 May 2018 at the St. Mark’s Hospital in Harrow.
We were delighted to welcome over 80 attendees including pouchees, potential pouchees and medical specialists
2018 marks the 40th anniversary of the invention of the Pouch at St. Mark’s hospital and we were delighted to have Professor John Nicholls one of the pioneers and foremost experts on the subject as keynote speaker giving his personal reflections on 40 years of the pouch operation.
David Davies with Stephen Want, RLG member, who gave a talk about his experience as one of the earliest recipients of the pouch
David Davies with Lisa Allison after her presentation on the subject “Pouch Surgery Complications“. Lisa is a Pouch nurse specialist at St. Mark’s hospital and former Chair of the Red Lion Group.
David Davies with Dr Jonathan Segal of St. Mark’s hospital, after his presentation “Pouch Research Update – medical & surgical perspectives” .
David Davies with Mr Janindra Warusavitarne of St. Mark’s hospital, after his presentation on the subject “Modern developments in Pouch Surgery“.
David Davies with Miss Sam Evans after her presentation of “Fertility, fecundity and pregnancy with a pouch“. Sam is a Clinical Nurse specialist in pouch care at St Mark’s hospital.
There were also a number of work shops and of course food & beverage.
You can find recordings of the presentations from this years event here on the RLG web site.
We look forward to seeing you all again next year!
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.
You can read all about Medina catheters in Simon McLaughlin’s exclusive survey in the current issue of Roar!.
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.
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.