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From the archives -How pregnancy and childbirth affected my…

From the archives – How pregnancy and childbirth affected my j pouch

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.

ROAR – Issue 3: Summer 1996

Download Now!798 Downloads

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/

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From the archives -the launch of the Red Lion…

From the archives – the launch of the Red Lion Group

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.

ROAR – Issue 1: Summer 1994

Download Now!744 Downloads

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/

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How pregnancy and childbirth affected my j pouch

From Rome to Raphael – How pregnancy and childbirth affected my j 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.