My Stoma gave me Freedom

Amy Davidson tells us about living with Hirschsprung's Disease

Originally published on: December 2nd, 2022. Last modified on January 5th, 2023

Amy Davidson was born with a rare bowel disease called Hirschsprung’s Disease that affected her from the age of four months old. Throughout childhood, Amy suffered with severe digestive issues, which got worse as she got older. After several behavioural, medical and nutritional treatments that failed, medics were stumped and diagnosed her with idiopathic chronic constipation (idiopathic meaning unknown). Eventually, she went on to meet a colorectal surgeon and had surgery to have an ileostomy, which has transformed her life.

This is Amy’s story…

“I have an ileostomy because my large intestine couldn’t function on its own. I had symptoms in line with severe Hirschsprung’s Disease (which is a condition where the nerves in the large intestine don’t work) from four months old, which continually got worse as I got older. I was tested for every possible condition, referred from professional to professional and I undertook a combination of behavioural, medical and nutritional treatments throughout my childhood. Nothing was successful. I was diagnosed with idiopathic chronic constipation, which means that the professionals couldn’t work out what was wrong with me.

I had constantly talked about wanting to travel abroad and help with charities

“Growing up was very difficult. My body was in a very unhealthy cycle for multiple years. I would constantly go between four and eight weeks without opening my bowels. And for one to two weeks following this, I would have constant faecal overflow. Alongside this I was also dealing with sickness, nausea, debilitating abdominal pain, intestinal spasms, major abdominal bloating that made me look like I was pregnant, and feeling constantly exhausted. 

“As a little girl I had constantly talked about wanting to travel abroad and help with charities supporting those living in poverty. I would read all the letters from charities that came through the door. I would love going to charity shops with my nan, picking up all their leaflets and buying pin badges, and I always watched comic relief on red nose day. 

“Despite still being very ill, I first went to Africa in 2017 with a charity called ‘International Needs UK’. It was an absolutely incredible experience which amplified my passion. Since then, I have been to Kenya, Sierra Leone, and Zambia and supported various projects from home in the UK. 

I struggled mentally more and more

“As I got older, and my condition worsened, I struggled mentally more and more. I thought I was going to have to give up my job as a care assistant in a nursing home and the work I do with charities in Africa. Multiple times between the ages of 18 and 20, I wondered whether I really wanted to live anymore. 

“In early 2018, I was referred to a colorectal consultant. He ran a transit study which showed that my digestion almost completely stopped at the large intestine due to lack of muscle movement and that my bowel was massively distended after years of damage, and multiple impactions. From here I had three separate major surgeries. The first surgery, in 2018, to remove three quarters of my large intestine. The second in 2019, to create my loop ileostomy. Then the third surgery in 2020 to remove the remaining  quarter of my bowel and to make my loop ileostomy into a permanent one. To say I felt almost immediately better after the creation of my stoma is a massive understatement. I am beyond grateful for the opportunity I have been given to live a fulfilled life, and that novelty will never wear off.

I am beyond grateful for the opportunity I have been given to live a fulfilled life – that novelty will never wear off.

“And now? My life is everything I could have ever dreamed it would be and more. I work as a healthcare assistant in a specialist NHS Bladder and Bowel Care clinic, and I still go back to the care home to work shifts when I can. I have an amazing and supportive family and lots of wonderful friends, all of whom mean the world to me. I have done numerous qualifications to assist my career and charity work, I am currently planning two trips out to Africa for 2023, and I am getting ready to do a skydive to raise money for one of the charities I support. 

“I hear a lot of people talk about how their stomas gave them their lives back, but as someone who has had their condition since they were a baby, I had never experienced life without being unwell. I think that my curse and my saving grace throughout my life was that my body adapted around my illness as I got older and therefore I was able to have some sort of ‘normal’ functionality. My stoma gave me the freedom I had never had. And, more importantly, the ability to use that freedom as a way to help others.”

Further Information

You can find more information on stomas, stoma surgery and more patient stories on our stoma care hub.

The Bladder and Bowel Community offers a home delivery service where your prescription stoma bags, stoma care items and prescription medications can be delivered directly to your door. Simply arrange a call with one of our advisors to find out more.

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