Louisa suffered years of bowel problems after the birth of her first child. She was told there was no alternative but a colostomy bag for life. Then she underwent the APPEAR procedure, and it changed her life.
“The problems began after the birth of my son Charles in 1997. I had a very traumatic delivery and afterwards it was obvious something was wrong with my bowel.
At the time I didn’t realise it was anything other than an ordinary birth. I thought ‘it’s my first child and this must be what it’s like’.
I was in labour for 22.5 hours, and in the end they used forceps. I had a third degree tear that went into the rectum and a third degree episiotomy.
I was a PE teacher, 28 years old and physically fit so I did get better, but over time I couldn’t open my bowel without pain.
My GP said I had a fissure – a general tear in the back passage. He gave me creams and suppositories and I learned to manage.
My daughter Megan was born four years later in 2001 by Caesarean section. But things then escalated and it was really traumatic to open my bowel.
My husband James said he couldn’t see me in pain and distress any more – I had to go to the doctor.
We decided go private to speed things up – we had to take out a loan to pay for treatment – we’d got so desperate.
Then came a turning point, and to this day I think it must have been fate. A doctor at the Nuffield Hospital in Brentwood had been to a conference and heard a lecture about the research being undertaken at the GI Physiology Unit of The Royal London hospital in Whitechapel and referred me to Professor Norman Williams’ team.
I still thought at this stage that I had something minor. I thought they’d give me cream or something to sort it all out, that there’d be a cure.
The consultants at the Royal London established that I’d suffered such severe nerve damage in childbirth that sensory nerves were not sending messages to my brain that my bowel needed to open. Essentially my bowel was locked shut.
I was so shocked. I started to cry. Were they saying I had to live like this for the rest of my life? I was told the only treatment was surgery and a colostomy bag for life.
They offered to put me on the research programme. And of course, I said ‘yes’. I wanted to try absolutely everything else first before I agreed to colostomy. I was only 33. I had a one-year-old and a five-year-old. I was still a full-time teacher.
People don’t realise what it does to you when you can’t get rid of the body’s waste. I’d been in constant pain. I couldn’t eat well. I’d lost weight. I was always tired beyond belief. For months on end, I couldn’t complete a week at work.
From that moment on, I had lots of treatment which was monitored for research purposes.
By 2006 my bowel function started to become difficult again. I didn’t tell anyone, not even my husband. I didn’t want to worry anyone, and I didn’t want to believe myself that things were getting worse.
We went on holiday to Australia with my family. We stopped in Singapore on the way and on the second day I realised I had an impaction. I had to accept then that I was losing bowel function again and needed medical help. My life was governed by a routine of laxatives, suppositories, pain killers and anti-spasmodic medication.
On returning home I underwent further tests which confirmed my loss of nerve function in the lower bowel; a colostomy seemed the only remaining option. My health was deteriorating rapidly.
Most people will experience constipation at some point in their lives, but to live with chronic constipation is a different matter altogether. The pain when trying to go to the toilet was often so bad that I’d vomit. My stomach was distended. I had constant headaches, ulcers in my mouth, brittle hair and nails and felt drained of all energy. It was completely debilitating.
Then the consultants at the Royal London offered me the APPEAR procedure which took place in January 2009 and completely changed my life.
As soon as it was done, the pain in my back went.
I had an ileostomy whilst the surgery healed and almost didn’t have it reversed – I was scared of being ill again.
But when it was done it was unbelievable. I was in hospital for 12 days and within a few weeks I never looked back. My bowel function was back – I’d had zero function for years. For the first time in 14 years I felt totally normal. I still can’t believe it.
If I’d had surgery in 2003, a colostomy would have been the only option.
It’s only because of research that I have a pain-free life. I can go on holiday when I want, go to restaurants and the theatre and cinema, eat normal food, do things with my children.
My husband has been a rock. We always thought it was going to be all right in the end. We had the same conversation 100 times – it would be all right, we just had to get through it.
I think it was fate that I ended up having the APPEAR procedure. I was in the right place at the right time with the right people and I was very willing to try everything.
My husband and I wanted to have a real celebratory holiday in April 2011 so we went to Las Vegas and the Grand Canyon. When we got there it was so emotional. I couldn’t believe we had got this far and it had taken so long. It was quite a defining moment. We thought ‘let’s draw a line under it – we’re not looking back any more’.
The impact on my parents, my siblings, aunties, friends, my husband James and my children for all those years was enormous. In some ways I think it was harder for them than for me. When you’re watching someone go through that sort of trauma and you can’t do anything you feel helpless.
My little girl was only seven when I went to hospital for the APPEAR procedure. She was blown away. In the last six weeks leading up to the op I couldn’t really do anything with her or my son. I was just lying on the sofa all the time – the pain was so out of control.
Now I really appreciate the freedom to do what I want and what my children want me to do. I can be spontaneous about things for the first time in years.