Louise's Story


My Name is Louise

I am a 32-year-old female with a permanent ileostomy named Bertha. I’m a mother, girlfriend, daughter, best friend, auntie and granddaughter to my family and friends.

My hobbies are reading and shopping (typical female). I am also an advocate and try my best to raise awareness for my illness and stoma. I have penetrating refractory Crohns disease and was diagnosed 14 years ago. In the last 8 years I have lost count of the amount of surgeries I have under gone, the total number so far is in the 30’s.

My first ostomy was undertaken during emergency surgery to save my life. If we roll back to nearly 8 years ago as I’m typing this I was pregnant with my daughter who was now nearly 2 weeks over due and not showing any sign of making an appearance. I had absolutely no idea what I was just about to put my family and friends through.

I went into natural labour but due to unforeseen scar tissue my cervix would not dilate and I was in active labour for 3 days and taken down for an Emergency C-section when the baby and myself was in distress.

My C-section took over 5 hrs to be completed due to scar tissue and struggles getting into me that in the end they used hands to rip the scar tissue to get my daughter out. I underwent general surgery that day and was placed back onto the maternity unit.

What happens next is how I got my first ileostomy. Within two days of having my daughter I contracted sepsis, faecal peritonitis and pneumonia. They had perforated my bowel and fistula during the C-section and hadn’t repaired the damage as it was missed.

I remember taking this in and not having a clue as to how serious this was and thought I would be treated within the next few days and on my way home. I vividly remember kissing my daughter goodbye and waving to my now ex-partner as they wheeled me down for a CT scan.

3 weeks later I came around off of an induced coma with tubes and wires sprouting everywhere. I had spent 3 weeks fighting for my life and scaring the living death out of my mother. 24 hours after coming off of life support and being at least lucid enough to understand what had happened. I had in that time been down to surgery 20+ times, sometimes twice a day to have the infection cut away. The induced coma was due to my heart, I kept dying on the operating table and was in acute renal failure so my whole body had gone into shut down mode.

I had an open wound which spanned the full length of my stomach, I had lost all my central abdominal muscles and had a biological mesh holding in what was left of my intestines. I also had a temporary ileostomy. This ostomy saved my life and for that I will be ever so grateful.

I spent the next 2 and a half months in hospital. In this time, I had to learn how to walk, talk and eat again. I underwent daily physio and was attached to Vac machines to help close my open wound along with a 6-month stint on TPN to help with what I couldn’t eat.

I will always be grateful to the hospital as they allowed me to have Maisie my daughter in hospital with me as I was recovering and on the mend. It also meant I had the chance to bond with her as I had missed out on the first month of her life. She was my reason for getting stronger and getting out of hospital as soon as I did.

The last 8 years have had ups and downs. I’ve had a failed re-section, abdominal surgery and now a permanent ileostomy and due in the next year or two to have what is left of my large bowel removed and my rectum sewn shut.

My first ostomy was done without my consent due to mitigating circumstances. My mum signed the papers and said anything as long as she lives. I will never hold that against my mum as she has always had my best interests at heart and for that I am grateful and lucky. I am one of the rare few individuals to have survived that level of sepsis and still here to spread and raise awareness.

Having an ostomy doesn’t impact my life. I have turned it into the positive. Both the temporary and permanent ileostomy have saved my life and improved my quality of life. Having this doesn’t mean I am ugly or disfigured. This ostomy has made me grow and learn as a person. I may not be perfect or the ideal in the eyes of others but I am my version of perfect and I am happy with that.

Many thanks for reading

Louise xxx