If you suffer with Crohns disease or Ulcerative Colitis you may be eligible to take part in this survey being conducted by a St. Mark’s Hospital Research Fellow. See below for further details and follow the link or scan the QR code if you feel you are eligible and would like to complete the questionnaire.
St Mark’s Hospital Foundation is dedicated to funding groundbreaking research at St Mark’s Hospital and supporting the training and education of its medical professionals. By donating today, you’ll help St Mark’s continue its vital work; caring with guts for the thousands of individuals affected by complex bowel diseases.
And there’s more—thanks to the generosity of our matched funders, your donation could be doubled, making an even greater impact!
To read more about the work of the St Mark’s Foundation and to donate, click on the button below.
In this our 30th anniversary year of the Red Lion Group, we continue our journey back in time to early versions of our ROAR! magazine. In this article, we go back to issue #53 published Summer 2017 which contained this article on the subject of Recommended barrier creams for people with a J Pouch.
Names have been anonymised for publication on our website.
The Roar! Guide to the top 10 Barrier creams for J Pouch – by Roar! editor, Christopher Browne.
Anal soreness and irritation are two of the most unpleasant after-effects of a J pouch op. So here is our user-friendly guide to the top 10 products to help you banish those bedtime blues!
How many of you have suffered from soreness, irritation and rashes? Quite a few I should think from the number of times these daily discomforts are mentioned at the Information Day workshops. They can affect both men and women. But what products can we use to help clear them up and where can we buy them?
Here is our top ten guide to the most highly rated creams and lotions based on your own experiences and some authentic medical evidence.
We’ll start with Calmoseptine ointment which Red Lion member Tracey S says she depends on and refers to as “a bit like a very thick calamine lotion and a product that I have found both very gentle and effective”.
Visit the US-based website https://calmoseptineointment.com for more information.
{Note from GB – this product is not officially distributed in the UK but can be found online, on eBay or Amazon, for example}
Adds Tracey: “The other cream I use when my skin is at its most sore is Ilex Skin Protectant. It really does the job in terms of protection…It’s very gluey and can stick your bottom together a bit but the instructions suggest you use a top layer of Vaseline to avoid this, and it really does the trick!”
For more information see https://www.ilexhealthproducts.com
One of the most highly recommended creams at the female workshop at this year’s Information Day was Sudocrem, a nappy rash treatment which you can buy over the counter at most supermarkets and chemists. For further information see https://www.sudocrem.co.uk
Equally effective, Red Lion members agree, is the award-winning Cavilon barrier cream. You can buy this product on prescription as a pump spray or cream – though the latter is easier to apply apparently.
To find out more, see https://www.3m.co.uk/3M/en_GB/Cavilon-Durable-Barrier-Cream/
The brand name Clinell covers a group of hand and skin care products which their manufacturer Gama Healthcare describes as “antimicrobial disinfectants”.
The Clinell spray or wipes are used for anal soreness and rashes and can be ordered from https://gamahealthcare.com/range/universal-range/ .
While Vaseline, which many of us use as back-up to other products or as a regular ointment can be bought over the counter at all main UK chemists.
Hydromol is another ointment that is recommended by several of you. It helps treat dry skin and eczma-related conditions and can be bought on prescription or ordered from https://hydromol.co.uk/products/hydromol-ointment/
St Mark’s Hospital recommends sufferers try small doses of Metanium. This ointment is usually used to treat nappy rash but can be used by adults as well. It is sold by all the main UK chemists.
An oft-mentioned lubricating gel for catheter users – both male and female – which eases catheter insertion and helps guard against infection is Instillagel or lidocaine.
{Note from GB – Instillagel and Lidocaine have anaesthetic properties and are available on prescription. An alternative over the counter product recommended for catheter users is KY Jelly}
Our former Red Lion membership secretary, Susan Burrows, {who sadly, has since passed away}, said “At the Information Day workshops most people agree that certain drinks and food can increase anal irritation and there is some consensus that the condition does improve as the skin in that area adapts. Everyone – both male and female – finds using creams and lotions an excellent way to relieve irritation – and if you are lucky enough to have a bidet that can really help application too.”
A leaflet on skincare from St Mark’s Hospital advises: “If you are leaking pouch contents onto your skin, there is a possibility that you will become sore. This is more so than with ordinary stool as pouch contents contains digestive enzymes and can be quite corrosive. The best way to prevent soreness is by cleaning as soon as you can, and meticulous attention to removing all trace of stool. There are also many different creams that can help with sore skin or used as a barrier. The success of different creams seems to be very individual – it is worth experimenting to find the best one for your skin. It may be worth contacting your GP or stoma nurse for advice on available products.”
So, dear readers, if you know of any other creams, ointments, lotions or sprays that are recommended by healthcare professionals and have worked for you, please contact Gary Bronziet at membership@pouchsupport.org
Christopher Browne
ROAR! Editor
Stephen Woods commented “I find Bepanthen is very good. Not the cheapest, but readily available and tube lasts ages as you really only need a thin smear. Quickly soothes even very irritated skin“
To read the original article and the rest of issue #53 of ROAR! you can download the entire issue below.
ROAR! is the magazine of the Red Lion Group that is published twice yearly. If you are a member of the Red Lion Group, you will have online access to ALL issues of ROAR! going back to issue #1 which was published in 1994. If you would like to find out about membership of the Red Lion Group please go to pouchsupport.org/join/
In this our 30th anniversary year of the Red Lion Group, we continue to our journey back in time to early versions of our ROAR! magazine. In this article, we go back to issue #3 published Summer 1996 which contained this article on the subject of Pregnancy and childbirth with a J pouch.
Here is an excerpt from the article that featured in that issue.
From Rome to Raphael – How pregnancy and childbirth affected Rachel Abedi’s 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.
To read the original article and the rest of issue #3 of ROAR! you can download the entire issue below.
This year we will be celebrating the 30th anniversary of the founding of the Red Lion Group and we would like to express our gratitude to the founders of the group which continues to flourish. Tim Rogers only recently stood down from the committee and I am delighted to say that Prof. John Nicholls is still a patron.
ROAR! is the magazine of the Red Lion Group that is published twice s a year. If you are a member of the Red Lion Group, you will have online access to ALL issues of ROAR! going back to issue #1 which was published in 1994. If you would like to find out about membership of the Red Lion Group please go to pouchsupport.org/join/
Related Posts
Updated 30 July 2024
We previously announced a new study into fistulae being undertaken by Dr Easan Anand, a Research Fellow at St Marks Hospital. As a reminder, a fistula is an abnormal connection (or tube) between an organ, vessel, or intestine and another organ, vessel or intestine, or the skin. They are particularly troublesome to treat – the best cure is for the body to close the fistula naturally using scar tissue. But this takes a long time and the “tube” has to be kept open during this time to prevent a closed area developing into an abscess. Hence the use of a Seton drain to help keep the fistula open whilst it is healing.
The goal of the research will be to evaluate the success of treatments for fistulae and identify the optimal method(s) to achieve the best outcomes for patients. Dr Anand will be building on work started by Dr Lillian Reza and Consultant Phil Tozer on this project. One of the fundamental challenges is to develop a questionnaire which patients can complete to evaluate their quality of life (QoL). The tool can then be used to measure the success of treatments in a standard way.
By way of an update, Dr Anand reports that there have been delays in finalising the pouch fistula quality of life scale (abbreviated to PAVFQOL). This scale is essential and will be the first and only scale which is specific to pouch-related fistulae, so it is well worth taking time to ensure it is right. Hence to all those pouchees who volunteered to assist with the research, Dr Anand sends his profuse thanks and asks that you be patient for a few more months whilst the scale is finalised. He will then be rolling out the questionnaire for volunteers to complete.
If you are a pouchee with a diagnosed fistula (either now or in the past) and you would like to join up and take part in this research then please email Dr Lillian Reza at l.reza@nhs.net. All information will be treated in the strictest confidence and the research project has been improved by an independent ethical committee.
Regards
David Davies
RLG Chair
You can view the original article on this study below.
Have you ever been diagnosed with – or treated for – a J pouch-related fistula and would you be interested in taking part in a St. Mark’s Hospital based study?
If so, would you like to help Dr Easan Anand with a research study he is leading into outcome measures for fistula treatment? Outcome measures include such things as pain, quality of life and incontinence and it is important for these to be standardised so researchers around the globe can work with the same outcomes.
Easan is working at St Marks Hospital under the supervision of Phil Tozer and Ailsa Hart, who have both given webinars for RLG in the past
You can take part in this study if you have ever been diagnosed with or treated for a fistula related to pouch surgery and you are over the age of 18 years.
You can email Easan on lnwh-tr.pavfcoms@nhs.net if you have any further questions.
Easan will be holding an introductory study management group meeting on 18 March 2024 at 7:00 – 7:30 pm on Teams. This will be purely an introductory discussion and is a fantastic opportunity to find out more about the study if you are considering taking part.
If you would like to attend, please email Easan on lnwh-tr.pavfcoms@nhs.net to request the Teams meeting link.
The International Journal of Colorectal disease recently published a paper “Prevalence of ‘pouch failure’ of the ileoanal pouch in ulcerative colitis: a systematic review and meta‑analysis” by Zaid Alsafi, Alice Snell and Jonathan P. Segal which is an important study into the subject. Below, RLG chairman, David Davies reviews the paper. You can download the full paper at the end of this article.
One of the important questions for pouchees is how long is their pouch likely to last? It is a regular question during webinars, during the zoom pouch forums and on the J-pouch support Facebook group at RLG and reflects a general concern that pouches will deteriorate over time. There are lots of references to pouch failure rates in medical publications – the generally accepted wisdom is 10-11% and publications from all over the world quote 2-15%, depending on many variables. No one knows for sure how many pouch surgeries have been carried out, which makes it difficult to estimate the failure rate.
Another way to estimate pouch failure rate is to look at the published medico-scientific literature from clinical trials, where extensive data is meticulously collected. But most single clinical trials are not very big, tend to involve a small, localised population and are not necessarily representative of the wider situation.
Medical researchers from Imperial College, London, have recently gathered together the data on pouch failure from a number of similar studies. In a paper published in the prestigious International Journal of Colorectal Disease the researchers’ collected data from many clinical trials and analysed it through a “meta-analysis”. Care has to be taken with meta-analyses to ensure that the data from many different sources can be summed up and analysed together but, if so, then the conclusions are likely to be more robust than from individual studies because the numbers involved are much larger. The investigators specifically focussed on adults (aged at least 18 years) and who had their surgeries due to ulcerative colitis. Pouchees will be reassured to hear the estimates of pouch failure rate from this meta-analysis were surprisingly low.
The researchers included data from 26 clinical trials conducted between 1978 to 2021, presumably including countries outside the UK. These studies involved 23,389 people and therefore present a huge amount of data for definitive calculation of pouch longevity.
The results of the meta-analysis are dramatic, as follows:
| Description | Mean failure rate (%) | * Range (%) |
|---|---|---|
| Pouches less than 5 years old | 5 | 3-10 |
| Pouches between 5 and 10 years old | 5 | 4-7 |
| Pouches greater than 10 years old | 9 | 7-16 |
| Overall average pouch failure rate | 6 | 5-8 |
*95% confidence limits (i.e. 95% of the data points occurred within this range)
In other words, for pouches less than 5 years old the mean failure rate was only 5% (with the range 3-10%). For pouches aged between 5 and 10 year the mean failure rate was also 5% but with a narrower range (4-7%). For pouches greater than 10 years old the mean failure rate was 9% (range 7-16%). And the overall prevalence of pouch failure was 6% (and within the range 5-8% for 95% of the patients followed).
The results suggest that previous estimates were on the high side and that pouch failures occur at approximately 6% in adults who had their surgery for ulcerative colitis. The researchers conclude “The overall prevalence of pouch failure in patients over the age of 18 who have undergone restorative proctocolectomy in UC is 6%. These data are important for counselling patients considering this operation”. Indeed it is an important consideration for people contemplating the pouch operation.
Hopefully this sort of analysis will provide definitive and reliable data to inform people who are trying to decide between a pouch and a permanent ileostomy.
David Davies
Chair – Red Lion Group
You can download the full paper below.
We have decided to delve back into our ROAR! archives and share some of the articles with you – and in the year in which we celebrate the 30th anniversary of the Red Lion Group, what better place to start than ROAR! Issue #1 announcing the launch of the Red Lion Group on Sunday 10th April 1994.
Here is an excerpt from the article that featured in that issue.
The Launch of the Red Lion Group
This is the first newsletter of the Red Lion Group which is a support group for people who have a pouch or are considering having a pouch operation. The group was started by people who had their pouch operation at St. Mark’s Hospital, London but anyone is welcome to get involved. In this first article Tim Rogers recounts the launch of the group on Sunday 10 April 1994.
I went up to Aintree this year to see the Grand National. I lost about £20, but I didn’t mind because the following day Rachel Nicholson Abedi and I chaired the first ever meeting of the Red Lion Group. The group is largely made up of past patients of St. Mark’s Hospital in London who have made the transition from ileostomy to pouch.
A pouch is constructed by stitching the end of the small intestine in such a way as to give holding capacity, and plumbing it through to the anus. The operation is suitable for people who have suffered from ulcerative colitis and is a direct replacement for an ileostomy. While having an ileostomy takes some getting used to, it does allow people to be free from the chains of inflammatory bowel disease. Gone forever are the days of ill-health, urgency and planning your life around lavatories.
Patients undergoing a pouch operation lose the bag, but all the old fears about incontinence return. It was partly for this reason that we formed the Red Lion Group: to help people to decide whether a pouch is for them, and to give support to people who already have a pouch. A small band of us had been meeting once a month or so on a Thursday afternoon to plan the launch of the Red Lion Group.
When the big day arrived we did not know quite what to expect. Dansac kindly sponsored the event by laying on the venue in the beautiful grounds of Syon Park in southwest London and Mr. John Nicholls, one of the surgeons who pioneered the procedure, agreed to give a talk about the history of the pouch operation.
As Rachel and I sat nervously at the front of the conference room we counted that almost 100 people had turned up. Rachel stood up and spoke about the origins of the group which was the brainchild of her and the stoma-care nurse at St. Mark’s Hospital Celia Myers. Then I spoke briefly about the events that had led to this first full meeting before introducing Mr. Nicholls.
Mr. Nicholls’ talk was entertaining and informative. We were told that ulcerative colitis drives people to surgery in many ways. Some need it because the urgency ruins their lives. Others find that their health gets eaten away and they lack the energy and vitality to do things that everyone else takes for granted. By having an ileostomy people’s health is restored and they can go out and about safe in the knowledge that they are not suddenly going to have to go any moment.
People have a pouch operation for purely cosmetic reasons and so it is crucially important that people only undergo the procedure if they really want it. The operation is not suitable for sufferers of Crohn’s Disease. The operation has evolved over the years thanks to the genius of some gifted surgeons to arrive at today’s state-of-the-art ‘W’ pouch.
There was an animated question and answer session after Mr. Nicholls’ talk. The question of cancer-risk in pouch patients was raised. Mr. Nicholls said that although there had only ever been one case of instability of the pouch lining which could possibly lead to cancer he insists that each of his patients undergo a biopsy every year. Not all surgeons follow this example and this was perhaps the biggest talking point of the day.
The question of conception, pregnancy and birth came up. Mr. Nicholls recommended that women with pouches give birth by Caesarean section to minimise any damage to the bowel, but there is absolutely no reason why people with pouches should not have children. Indeed it turned out that there were three or four mothers with pouches at the meeting.
The problems of uveitis (an eye disorder) and arthritis linked to ulcerative colitis were also discussed. Some patients had been led to believe that a pouch would cure them of these disorders. Mr. Nicholls said that the link between ulcerative colitis and uveitis and arthritis were still obscure but progress was being made, as it was in the search for the origins of ulcerative colitis itself. He told one questioner that there was every chance that by the time her son grew up ulcerative colitis may possibly have been eradicated through genetic engineering.
……
To continue reading this opening article and the rest of issue #1 of ROAR! you can download the entire issue below.
This year we will be celebrating the 30th anniversary of the founding of the Red Lion Group and we would like to express our gratitude to the founders of the group which continues to flourish. Tim Rogers only recently stood down from the committee and I am delighted to say that Prof. John Nicholls is still a patron.
ROAR! is the magazine of the Red Lion Group that is published two or three times a year. If you are a member of the Red Lion Group, you will have online access to ALL issues of ROAR! going back to issue #1 which was published in 1994. If you would like to find out about membership of the Red Lion Group please go to pouchsupport.org/join/
Related Posts
The St Mark’s Hospital Stoma and Internal Pouch care team is in the process of conducting a study on gastrointestinal effects of Covid in stoma and pouch patients and they have asked us to share the link to their online survey.
See the link below for further information and to take part if you choose to do so.
Roar! editor Christopher Browne speaks to Haresh Ruparelia, son of the original ileo-anal pouchee
Remember the turbulent 1970s? Some of us do and RLG’s new treasurer Haresh Ruparelia certainly does even though he was a mere toddler at the time. He also recalls the events of that decade for a completely different reason. In 1972, Haresh, his parents and his two young siblings were forced to leave their home, jobs and schools in the African republic of Uganda during the dictatorship of Idi Amin. “After considering Fiji at one point, my father Pravinchandra (known as Pravin) moved the family to the UK. He managed to find work quite quickly and chose to settle in Ilford, East London,” said Haresh.
“a desperately difficult
period for my parents”
Haresh Ruparelia
Then fate struck the family a second time when in 1974 Haresh’s 35-year-old father was diagnosed with ulcerative colitis (UC). “His symptoms soon became chronic and physically he had gone from being a fit, strong and healthy young man to someone who was frail, very underweight, unable to work and seemingly staring death in the face,” he said.
“As a child I was protected from the seriousness of it all, but knowing what I have since found out, it must have been a desperately difficult period for my parents,” Haresh explained. Pravin was first admitted to St Mark’s Hospital, then based in London’s City Road in 1974. However, as his symptoms worsened, he was re-admitted two years later in 1976. In July of the same year, he had the first part of a radical new operation. It was of course the first stage of an ileo-anal pouch – shaped out of the small intestine to replace the need for the large one – which had been created by the hospital’s consultant surgeon Alan (later Sir Alan) Parks. The operation, which was also performed by Mr Parks, replaced the more conventional option of an ileostomy. Pravin was the first of a group of five patients at St Mark’s and the London (later Royal London) hospitals to have the revolutionary surgery. Just over a year later, Pravin had his final closure and became the proud owner of a pouch.
“This pioneering surgery gave my father and the family a new lease of life. Following surgery my father’s physical condition recovered significantly and as a result he was able to start living a normal life again. “He was able to return to working full time, earn a decent living for the family and fully enjoy social activities too. This in turn allowed the entire family to live normal lives for the many years that followed,” said Haresh.
“My father’s experience of the pouch was generally good. He had to use a catheter to empty the pouch and therefore needed to keep equipment with him wherever he went. He preferred to use disabled facilities wherever they were available and took care regarding the size and timings of meals when out and about,” added Haresh. “I suppose that to him these were trivial inconveniences in light of the condition he had suffered prior to surgery – and preferable to having an ileostomy.”
“Pouch surgery was extremely successful for my father and for that the family will forever
be indebted to the late Sir Alan Parks and his team”
Sir Alan Parks
After those first five pouch operations, Mr Parks and his senior registrar, John Nicholls (later Professor Nicholls and a patron of RLG), wrote an article titled ‘Proctocolectomy without ileostomy for ulcerative colitis’ 1 for the British Medical Journal. In the report, Pravin is referred to as the first case to have a pouch fitted. Commented Haresh: “A point made in the BMJ article about the importance of temperament was perhaps applicable in my father’s case. He was a very philosophical person and not shy. This perhaps allowed him to put himself forward as one of the early candidates for surgery and subsequently helped him to cope with having to use a catheter. “The other significant factor that helped my father cope with his illness and the surgery was the presence and support of my mother. She coped with so much whilst Dad was ill and always remained by his side, providing practical and moral support through the darkest hours before the surgery in 1976 and thereafter when living with the pouch, the ileostomy and the related issues that arose from time to time.”
“This pioneering
surgery gave my
father and the family
a new lease of life”
Pravin Ruparelia
And Pravin’s life with a pouch was mainly incident-free for almost 40 years until 2014 when he developed pouchitis and due to complication with the pouch needed an ileostomy until he died in January 2022 aged 82.
“Overall, pouch surgery was extremely successful for my father and for that the family are grateful and will forever be indebted to the late Sir Alan Parks and his team, Professor John Nicholls and everyone involved for all the hard work in pioneering the surgery, providing treatment and support to patients pre- and post-surgery and for sharing the knowledge with the wider medical profession and patients. “Dad could have gone to beautiful, sunny Fiji when he left Uganda… but he came to England, had the fortune of being referred to St Mark’s Hospital and the rest is history,” added Haresh.
AND A VERY HAPPY FOOTNOTE: RLG is delighted to welcome Haresh Ruparelia as our new treasurer!
A version of this article first appeared in ROAR! issue #66 – Winter 2023. If you would like to read other articles like this, why not become a member of the Red Lion Pouch Support group? You will receive printed copy of ROAR! twice a year and have online access to archive ROAR! editions going all the way back to issue number 1, published in 1994. See pouchsupport.org/join for further information.
Red Lion Group member, John Weight, describes his journey from UC sufferer to pouch recipient (hospital waiting lists were not the only problem!) – and recounts some of his pouch adventures.
As John Weight points out: ‘Surgical procedures and patient outcomes have undoubtedly improved since I had my pouch operation. And new pouchees are now far less likely to experience the number of adhesions, subsequent bowel obstructions and emergency hospital admissions that I did. In short, the patient journey today tends to be much smoother than before.’
It all started in 1979 when I was diagnosed with UC, or was it Crohn’s? It took doctors 10 years to decide before they erred on the side of ulcerative colitis in all probability. My bowel healthcare problem had been getting progressively worse. I was down to 9st. 4lbs and a daily dose of steroids was not having any apparently beneficial effect. Surgery was suggested several times but a colostomy bag or ileostomy for an active young man was not an acceptable option for me.
In 1988, I was referred by my local consultant to Central Middlesex Hospital for an in-depth internal examination. At the end of my stay the specialist consultant came to my bedside and told me that my large bowel lining was showing signs of dysplasia (a pre-cancerous stage) and that surgery was now very strongly recommended. I was stunned but I still expressed my reluctance to go down this path. However, he went on to tell me of a relatively new surgical procedure involving the formation of an internal ‘pouch’ instead of an ileostomy.
This seemed too good to be true. He asked me if I would agree to a referral to the consultant surgeon John Nicholls at St Mark’s Hospital, then based in London’s City Road. As the senior registrar to Sir Alan Parks, he was one of the pioneers of this technique, later becoming a professor and, of course, a patron of the Red Lion Group.
Several months passed before I travelled to City Road to meet Mr Nicholls. He was very direct in his approach and very thorough in detailing the surgical procedure involved supported by some freehand sketches – a wondrous piece of re-plumbing and not without risks that he was also careful to explain.
Statistics at the time recorded a 1-in-10 chance of failure – an acceptable risk I thought, not that I had much choice now, so an in-patient stay was booked for the stage one operation – a colostomy and the construction of a J-pouch. The stage two closure would follow two months later. I could just about cope with that! My employer agreed to give me four months’ paid leave so all I had to do now was wait.
My first in-patient booking was postponed so all plans and arrangements had to be stood down – which meant another long wait.
In the meantime, I thought I would spend a weekend in Oxford visiting friends and taking my mind off the impending ordeal and perhaps enjoying a curry and a few beers. Unfortunately, it was not the curry that put me back in hospital again but the cryptosporidium parasite that had been piped in that weekend from Farmoor Reservoir which supplies Oxford’s water.
The news bulletin at the time advised children and the elderly to take extra care as the “parasite can cause gastrointestinal illness with diarrhoea in humans”. So, for someone like me with UC it was a disaster!
I spent two weeks in High Wycombe General Hospital on 40mg of intravenous prednisolone before my condition was brought under control. Once back on my feet and feeling better I returned to Oxford – this time to include a light game of tennis. But it wasn’t long before the ambulance was on court – I had ruptured my left Achilles tendon! I put this rather unfortunate accident down to the fact that my muscles and tendons must have been weakened by the earlier high doses of corticosteroids.
So, off to Oxford’s John Radcliffe Hospital for a knee-high plaster cast with an embedded high heel to reduce the strain on the tendon. It would be some months before this would be removed and my rescheduled bowel operation was only a few weeks away!
The taxi arrived alongside the entrance steps to St Mark’s Hospital. The driver jumped out and opened the rear door for me as if this was a celebrity arrival – get me out of here! I struggled to extract myself from the rear of the taxi holding a pair of aluminium crutches loaned by John Radcliffe Hospital.
Once afoot there was no stopping me as I hopped up the entrance steps. There was no going back! The pre-admission nurse looked a little perplexed. I tried to pretend this was just another routine hospital visit – I’m a regular now, well into double figures since the start of my UC. She filled in the requisite pre-admission forms and checks and then disappeared.
Half an hour later she returned – “I’ve spoken to the surgical team, and they can rig up a hoist for your [plastered] leg”. It seemed like a marathon getting this far but I was ‘in’, and Mr Nicholls would very soon be scrubbing up.
And so it came to pass that I slowly emerged into a new world without a colon, a tummy with a railway track of staples down the middle and tubes coming out of every orifice! “Are you awake Mr Weight – would you like a sip of water”? Within hours I was being escorted around the ward with one crutch and a saline drip instead of the other to avoid any risk of deep vein thrombosis.
My progress was good, and I was discharged after two weeks with ample supplies of colostomy bags and stoma templates. I bought a pair of high-waisted trousers to make life a little more comfortable. The promised two-month wait for the return leg became three before I was finally booked in for the closure. At last, I would be ‘normal’ again, all joined up and no plastered leg encumbrance this time.
The next 10 days in St Mark’s passed fairly quickly – getting used to my new bowel configuration and getting fit again by walking up and down the stairs to the courtyard garden as often as I could with the occasional loo stop. The nursing staff omitted to tell me about the pouch stool acidity caused by the residual gastric acid, so I was a little sore initially. The acidity would have been neutralised by my large bowel had it been present. So, this was the time that meticulous cleanliness and barrier creams entered my life.
Two months after being discharged and I was back for a post-op review. I had been getting leakages, typically when out shopping. My pouch output seemed quite fluid. The consultant thought I might have pouchitis and prescribed 500mg Metronidazole suppositories. I have been on them ever since – over 33 years. Without them I simply could not survive. For years now I have been using two to three suppositories a week on average – they seem to keep the inflammation in check even though repeated use of antibiotics is generally not recommended.
Some years later another consultant suggested a two-week blitz of Ciprofloxacin and Metronidazole tablets to completely remove the inflammation rather than maintain it at a low level. However, within five days of completing this regimen the pouchitis had returned.
For the first 10 years of living with my pouch I was not troubled with it at all. I put weight back on, I travelled all around the world, played football, windsurfed, skied, and swam – life was back on the fast track save for a few unpleasant derailments – the dreaded adhesions and attendant agonising bowel blockages. Most times these would sort themselves out within a few hours or overnight. However, on four occasions a hospital in-patient stay was necessary – twice in Luton, once in Walsall and once in Male in the Maldives.
The Walsall stay was the scariest – no bowel movement for seven days. The surgeon was seriously considering operating when suddenly there was some movement. I think it must have been the onset of panic. I can’t say how happy I was to get out of there unscathed! The Maldives experience does merit some mention as the costs were covered by a Red Lion Group recommended insurer at the time.
The episode occurred the day before we were due to leave Komandoo Island to return to the UK. After a night of severe colicky tummy pain my wife Debbie called the island resort reception for a doctor. The nearest was stationed on a larger island nearby, a 30-minute high-speed motorboat away. On arrival the doctor administered some painkillers and muscle-relaxing medication and arranged for a transfer to a hospital in Male, the capital of the Maldives.
I had to go back on the motorboat with the doctor to the neighbouring island where I would catch the scheduled seaplane flight to Male. Debbie frantically packed our suitcases while I looked on helplessly. Four of the resort staff turned up with a wooden door that had just been removed from its hinges – this was the best they could do for a stretcher! – I was loaded on board and lugged along the sandy track through the palm trees to the jetty, stopping along the way for each of the bearers to change corners and swap load-bearing arms.
Overhead, the sun burned down both blinding and cooking me on this makeshift hotplate. By the time we reached the jetty the colicky pains had returned. I was carefully laid down to rest while my wife settled the hotel bill, and the boat was prepared for departure. I don’t remember much about the sea or air journey to Male, just the acute pain and the concerned faces of helpers and onlookers. At the airport, a water taxi and then an ambulance ride got me to the allotted hospital.
I was put on a drip and given some more medication and allocated a room with two single examination beds but no bedding. My wife checked in at a nearby four-star hotel – the one the BA pilots used as it turned out. By 5pm that day my bowels started moving again and I began to feel a lot better – even so I had to spend the night at the hospital for observation. The other spare bed in my room was in continual use with the comings and goings of local patients and their families – I think it must have been an A&E side ward.
At one time a pregnant woman was there with an extended family of about eight people. It wasn’t possible to get any sleep until about 1am when everyone had eventually filtered away into the night. The next morning, I needed to get discharged quickly – as there was every possibility I could still catch my 10:00am BA flight home and return to the original holiday schedule. A young man from a local travel service company that our tour operator used to facilitate the transfer of its clients to and from the outlying islands turned up early to help me with my discharge. He had visited me in hospital the night before and was thus au fait with my predicament. He was an absolute star – helping with the discharge process, arranging the preparation of my hospital bill, and getting the medical report written up for my insurer – and all before 9:00am!
A truly amazing achievement! I grabbed all the paperwork and ran with my supporter to a waiting cab. Debbie was there with our luggage in the boot. We rushed to the airport and ran to the BA check-in desk. They were waiting to rush me through as my wife had chatted up the BA pilots the night before and explained my predicament.
I got to my seat and looked around at all the people meticulously stowing away their hand luggage as if nothing had happened. I had just travelled through some seemingly highly eventful time-warped journey and been deposited in seat 36B.
“Did you enjoy your holiday,” asked the lady seated on the aisle side of my seat. “Beautiful place, lovely people,” I recounted – “still, it will be good to get home”.
Footnote: It’s worth highlighting the much improved surgical procedures and patient outcomes since 1989. And that new Pouchees are unlikely to experience the number of adhesions, subsequent bowel obstructions and emergency hospital admissions as John did.
A version of this article first appeared in the Summer 2016 issue of ROAR! If you would like to read other articles like this, why not become a member of the Red Lion Pouch Support group? You will receive printed copy of ROAR! twice a year and have online access to archive ROAR! editions going all the way back to issue number 1, published in 1994. See pouchsupport.org/join for further information.
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