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News

Would you like to help with research to improve…

Would you like to help with research to improve patient care?

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.

Stories

The remarkable story of the world’s first pouch patient

The remarkable story of the world’s first pouch patient

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


Admitted to hospital

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


First pouch patient

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


Mainly incident-free

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.

  1. You can download a copy of this historic paper below. While researching his fathers pouch history, Haresh came across correspondence which confirmed that his father was indeed the patient referred to in that paper as Case number 1.
    ↩︎
Parks Nicholls Paper 1978
Parks Nicholls Paper 1978
Download Now!1772 Downloads

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.

Related Posts

  • What’s the lifespan of a J pouch?
    Date
    August 8, 2023
  • Gold and silver for St Mark’s pioneering pouch care team
    Date
    April 20, 2023
  • Ileo-anal Surgery – A Guide for Patients
    Date
    April 11, 2022

Events

Ileo-anal Surgery – A Guide for Patients


Ileo-anal Surgery for Ulcerative Colitis – A Guide for Patients

Republished 11 April 2022

Zarah Perry-Woodford

Stop Press – Zarah Perry-Woodford will be participating in the Moderated Q&A session on Pouch Care at the Red Lion Group Internal Pouch Information day at Central Middlesex Hospital on Saturday, 14th May 2022.

In 2016, St Mark’s Hospital Academic Institute proudly announced its first ever book publication “Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients”, written by Zarah Perry-Woodford, lead nurse – pouch and stoma care, St Mark’s Hospital.

Zarah has worked at St Mark’s hospital since 2002 and as the lead pouch nurse and practitioner since 2005 providing expert care to patients with ileo-anal pouches.

The book is an invaluable resource for people living with or considering an internal (Ileo-anal) pouch or J-Pouch. You can find out more about the book and how to purchase by clicking on the image below.

The Red Lion Pouch Support Group is delighted to announce that Zarah will be participating in the Moderated Q&A session on pouch care at its Internal Pouch Information Day to be hosted at Central Middlesex Hospital on Saturday, 14th May 2022.

You can find out more about the Information Day and reserve your place by clicking here.

Register your place soon as places are limited!

News

UC cases are rising, reveal St Mark’s Hospital experts

UC cases are rising, reveal St Mark’s Hospital experts

Ulcerative colitis is rising, says a study by three St Mark’s Hospital specialists in the March issue of the Royal College of Physicians journal.

That is the finding of a paper titled “Ulcerative colitis: an update” by St. Mark’s consultant gastroenterologist Professor Ailsa Hart and gastroenterology fellow Jean-Frederic Le Blanc and former St Mark’s research fellow Jonathan P Segal.

Yet – fascinatingly – as the number of uc cases grows, so do the treatments and techniques used by hospitals and gastroenterologists to help cure and combat the problem.

To find out more about this cutting-edge research click here.

Stories

Video: Considering a J-Pouch? What you need to know.

Mr Toby Hammond talks about J-Pouch Surgery – Recovery Time, Risks and Benefits

New committee member Michelle Martin has made the first of a series of videos about the pouch featuring her own surgeon Mr Toby Hammond as the presenter.

The idea for the series was prompted by Michelle’s experiences of ulcerative colitis and what exactly made her decide to go ahead with J-pouch surgery.

Says Michelle: “In 2017 I had an emergency operation to remove my colon due to undiagnosed ulcerated colitis. It was a total shock. Suddenly I was living with a stoma and everything in my life had changed. 

“Initially, my main focus was to have my stoma reversed, however over time I got used to my stoma, I felt well for the first time in years and I didn’t want any more operations.”

However, she wanted to find out more about the second option – having an ileo-anal pouch fitted. “I spent a lot of time talking through my options with my consultant Mr Hammond [Toby Hammond, consultant general and colorectal surgeon at Broomfield Hospital, Essex], but I found that away from the hospital there was limited information that would help me make an informed decision. 

“I eventually decided to go ahead with the operation and just over a year later I couldn’t be happier,” says Michelle. 

As she points out: “I know deciding to go ahead with the operation is a difficult decision, and I wanted to help others in a similar situation. I approached Mr Hammond and he was more than happy to support the project, and I hope this will be the first of many videos that will help people living with a J-pouch.”

You can view the video on YouTube below.

The Red Lion Group would like to thank Mr Toby Hammond and Graham Fisher, cameraman and editor, for both giving up their time for free and helping to produce this informative film.

If you would like to become a member of the Red Lion Group, you can sign up by clicking on the button below.

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