What’s the lifespan of a J pouch?

Have you ever compared your pouch to the famous Joey pouch of a kangaroo? I suspect not and nor have I, writes Roar! editor Christopher Browne.  However it’s an interesting – if slightly far-fetched – comparison and, so far, no one has had one for more than 45 years so we don’t yet know an ileopouch’s precise lifespan. What we do know is that several Red Lion Group members have had their man-made miracles for up to 45 years, as a recent RLG poll shows, so it is interesting to hear their views of long-term pouch behaviour.

Let’s start with RLG member Pam Everitt who has had her pouch for 42 years. She had a Parks pouch fitted in 1981 – five years after that historic moment in 1976 when the first one was created by Sir Alan Parks and Professor John Nicholls at the Royal London Hospital (then known as the London Hospital).

Pam noticed the first symptoms of UC (ulcerative colitis) soon after the birth of her first son in 1978. She was treated with enemas and several types of medication including prednisolone and a few years later, to her and her husband Jim’s delight, she gave birth again, this time to a daughter. 

However to Pam’s chagrin the UC flared up again and she was admitted to Cambridge’s famous Addenbrookes hospital near her home in St Ives, Cambs. This time her consultant advised her to have pouch surgery – “it was then a fairly new op” she says.

Pam had a two-stage op which “took a lot of getting used to”. Then the following year – 1982 – Pam and her family moved to Cornwall and her health slowly improved. She used a Medena catheter for two years “and can honestly say I haven’t had any problems since 1982 – 42 years ago”, she says.

“I eat and drink anything I want to and even went on to have a third child, a son, by normal delivery. He weighed a healthy 8lb 3oz!,” she says proudly.

“I lead a normal life, holiday abroad and now enjoy being a granny. I go to the toilet on average four times a day and feel very fortunate that I was lucky enough to be ill at the right place and at the right time and that my surgeon did a good job.” 

Pam recently joined the Red Lion Group. “I felt it would be good to be in touch with like-minded people and it is a great reassurance to know I am not alone,” she says.

Pam’s story is an encouraging one and we at RLG wish her all the very best for the future. Which brings me to a piece of pouch history. RLG member Sylvia Panford is also one of the world’s first pouchees, in fact No 9 in the pecking order.

She was admitted to the London Hospital in 1977 with a serious bout of UC. She was offered a permanent ileostomy but refused. Then her registrar told her about a revolutionary new operation created by a surgeon called Alan (later Sir Alan) Parks. “The first operation went well and I was the proud owner of a stoma,” she says. Parks then carried out a second op to create a pouch. Sylvia had a few complications but the third op was successful and in 1978 – 45 years ago – she was the proud owner of a pouch.

Since then, apart from a few glitches, Sylvia’s pouch has been problem-free. She joined a yoga club and a swimming group and in 1988 (10 years after her final pouch op) she completed a marathon and has done several more. She also joined a walking club and says: “It’s actually a drinking club with a running problem and is known as Hash House Harriers!”

Sylvia moved to Portugal five years ago. “I have had a few small problems but I show the doctors my RLG Medic Alert card and they are able to order me prescriptions which is such a relief,” she says.

As she says now: “A very special thank-you to Sir Alan Parks for creating the pouch.”

One of Sylvia’s fellow patients in the London Hospital was Jean Reed. Like Sylvia, Jean had been suffering from UC and her doctor decided the new ileoanal pouch would be the ideal solution for her as there was also a possible threat of cancer. 

And that, ladies and gentlemen, is how Jean became the world’s No 10 pouch patient.

It was during her three-month recovery period in hospital that Jean met Sylvia and they have remained close friends ever since. Like Sylvia, Jean joined the Red Lion Group and still contacts her friend to talk about mutual pouch issues.

“My pouch has been OK most of my life. I’ve had a few blockages but other than that it’s been fine,” says Jean. 

However last year misfortune struck when Jean had a stroke and she now needs to use a wheelchair. “But,” as she says, “the pouch keeps working with no pain and I haven’t had a blockage for two years.”

Janindra Warusavitarne, St Mark’s Hospital consultant colorectal surgeon, says: “The longevity of the pouch is a question I am always getting asked. 

“The answer is we know that about 10 to 15 per cent of pouches will be either removed or defunctioned with a stoma or complete removal of the pouch over a period of 15 to 20 years. So we assume that the rest are functioning reasonably. 

“But the reality is that we have never investigated that concept and ultimately as the pouch was created 40 plus years ago we won’t know what the ultimate longevity is for quite some time. 

“The pouch is created to improve quality of life and this is a concept that is very individual and cannot be measured accurately. 

“My final words are that in most cases a pouch will last forever (ie a person’s lifetime) but whether it will continue to function in the way that improves the quality of life for an individual is the question we don’t know the answer to.”

A version of this article first appeared in 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.