New bowel operation that could replace colostomies
Damage to the lower bowel — as a result of childbirth, bowel cancer or gut conditions — leaves many patients needing a colostomy bag. Louisa Smalley, 42, from Brentwood, Essex, underwent a pioneering treatment to avoid this.
My problems began after the birth of my son Charles 14 years ago. I was in labour for 22 hours and after a forceps delivery I had a deep tear that damaged the bowel.
Afterwards, the injury wasn’t repaired, and as the months passed I found I couldn’t go to the loo without pain.
“My rectum was removed and a stoma created – this is an artificial opening to the bowel to which a bag is attached,” said Louisa Smalley
My GP treated me for a fissure (a tear in the back passage), prescribing creams and suppositories, but he didn’t realise the severity of the damage.
I learned to manage with the pain, but by the time my daughter Megan was born four years later (by Caesarean, because of my bowel problems), I was suffering from chronic constipation.
Sometimes I couldn’t go for two weeks. It was excruciatingly painful and I had constant headaches, mouth ulcers, brittle hair and nails — all caused by the fact my body couldn’t get rid of the waste.
In 2003, after being referred by my GP via the local hospital, Professor Norman Williams and his team at the Royal London Hospital told me I’d suffered such severe damage in childbirth that the nerves that indicate you need the loo weren’t working.
The only treatment was surgery and a colostomy bag for life — or I could join a NHS research programme into bowel dysfunction. I knew I wanted to try everything else before I agreed to having a colostomy. After all, I was only 33 and my children were young.
A year later, I had surgery to reinforce the walls of my lower bowel, which helped a bit. But my problems gradually returned and by the summer of 2008 I couldn’t go to the loo.
I was on a restricted diet to limit the amount of work my bowel had to do. I wasn’t allowed to eat anything with a skin, pip or pulp because high-fibre foods bulk up the stools.
I was at the end of my tether. I never managed a full week in work and it was impossible to plan anything with the children because I never knew from one day to the next how ill I’d feel.
“After 14 years of bowel problems I still can”t believe it. I do have to go to the loo a few times a day, but anything is better than the constipation,” said Louisa
I thought my only option was a colostomy, but in January 2009 I was offered a new procedure: Professor Williams’s team would remove my rectum (the lowest bit of the bowel), which clearly wasn’t working, and create a pouch to replace it.
They would try to preserve the sphincter muscles that control bowel function, so I could go to the loo normally.
I’d need to have a bag while the bowel healed, but the doctors said this would only be temporary.
There were no guarantees the surgery would work, but I had to take the chance.
The first stage took place in January 2010. My rectum was removed and a stoma created — this is an artificial opening to the bowel to which a bag is attached. The bag wasn’t pleasant, but it’s not impossible to live with.
Then last November, it was successfully reversed and I was able to go to the loo normally again.
After 14 years of bowel problems I still can’t believe it. I do have to go to the loo a few times a day, but anything is better than the constipation.
In April, we all went to Las Vegas and the Grand Canyon as a celebratory holiday. It was so emotional.
Now I can go on holiday when I want, go to restaurants and the theatre, eat normal food and have days out with my children without worrying about it. I’m so pleased to have my life back.
Norman Williams is professor of surgery and director of surgical innovation at Barts and the London Hospital. He says:
There’s no doubt colostomies save lives, but living with a bag that may leak or smell can be distressing.
Around 30 per cent of patients with rectal disease, particularly cancer, will require a colostomy bag after treatment.
Other causes of problems include ulcerative colitis, an inflammatory disease of the colon, and damage after childbirth, as Louisa had. If the rectum becomes damaged in some way it may be necessary to remove a section of it.
Until recently, if the patient’s problem involved the lower part of the rectum — the storage area that holds the stools until they are passed — they would need a permanent colostomy bag following surgery.
That’s because this area of the body is difficult to access and operate on.
Surgery would involve removing the sphincter, a ring of muscle that controls continence, then closing the anus and creating an opening for a colostomy bag.
However, thanks to funding from the charity Bowel & Cancer Research, I’ve been able to pioneer a technique that removes the need for a bag.
It’s called APPEAR (Anterior Perineal Plane for ultra-low Anterior Resection) and involves removing the diseased part of the bowel and fashioning part of the remaining bowel into a pouch to recreate the rectum.
The procedure takes five or six hours under general anaesthetic.
First, we make an incision from the belly button to the lower part of the abdomen, then free the rectum from its moorings. We remove the rectum through the perineum (the area between the vagina or scrotum and the anal canal). This allows us to retain as much of the sphincter muscle and its nerve supply as possible.
Next we bring down part of the remaining bowel and fashion it into a small pouch to recreate the rectum. To allow healing of the joins, the patient must have a temporary bag (known as an ileostomy) for a few months.
If all is well, the ileostomy is removed in an operation lasting just over an hour.
It can take up to six months for function to stabilise, but for some people it’s as little as two.
The operation is not suitable for those with advanced rectal cancer or whose sphincter is damaged.
Advances in surgery over the past 20 years mean we have been able to reduce the number of people who need a bag after rectal surgery from 70 to 30 per cent. I hope this latest procedure will reduce the need to 5 to 10 per cent.
There is a multi-centre trial around the world and 85 patients have been treated, with a success rate of two-thirds.
It is also no more expensive than other major bowel operations on the NHS. It is not available privately.
For more information, visit bowelcancerresearch.org; tel: 020 7882 8749.