I’m Amy, I’m 30 & I live in Yorkshire in the UK. I live with my husband, Ben & we also have an adorable little Whippet Cross to make us a family of 3. I have a younger brother and grew up living with him & my Mum & Dad & our family dogs.
I work as a Social Media & Marketing Specialist for Comfizz, a company that specialises in stoma support, mainly physically with stoma support garments but emotionally too. I also hold accounting qualifications with the Institute of Chartered Accountants in England & Wales as that is the sector my job was in before finding my current job back in April 2022. I also do health work, such as blogging and content on my Instagram to share my experiences of daily life with Inflammatory Bowel Disease and a permanent ileostomy.
Tell us a bit about your bowels!
For as long as I can remember in my life, I’ve had bowel problems & suffered from malnutrition. Inflammatory Bowel Disease and bowel problems do run in my Mum’s side of the family and we sadly lost my uncle in 2012 due to complications of Ulcerative Colitis.
At the time of my Crohn’s Disease diagnosis at the young age of 7, I was the third youngest in the UK known to have it. I struggled with a lot of symptoms as a child and these impacted my life significantly such as debilitating stomach pain, loss of appetite and lost a lot of weight, feeling cold even when it was warm, achey joints, diarrhoea and toilet trips of sometimes more than 20 times a day, narrowings in my bowel which then caused constipation, anaemia, nausea and fatigue. I also suffered with side effects from medication such as a swollen face from steroids, hair thinning & acne. I missed out on a lot of school time because of this but still managed to do well in school and have always loved learning.
As a child, I was understandably very apprehensive about colonoscopies etc and staying in hospital away from home. I was put to sleep for medical investigations such as colonoscopies as this was the only way I’d agree to have them. I was treated for Crohn’s Disease of the small intestine.
When I moved up to the adult clinic when I was 17, I had more scopes etc. These actually showed that my Crohn’s was in my colon (large intestine), rectum and anus and that I also had Crohn’s inflammation at the bottom of my esophagus. This meant that the wrong area of my body had been aimed at with treatment for 10 years, meaning my disease was very severe. I started on Azathioprine and took that along with some steroids for about a year until blood tests showed warnings of a decline in my liver function and a scope showed that the medication wasn’t working. I was steroid dependent for 10 years and this was super tough. I then moved on to having an intravenous medication called Infliximab (also known as Remicade) and tried this for a year before finding out that everything was too far gone and that surgery was my only option.
August 2011, aged 19, Stacey Stoma, my ileostomy, was formed permanently, meaning I had my colon, appendix, rectum and anus taken away. Surgery was very touch and go and they found a benign tumour, the size of a watermelon, in my colon which, if left a few hours, I was told I wouldn’t have made it. I lost a lot of blood in surgery and it took considerably longer than expected. I received blood transfusions and woke up in a lot of pain. This was both life-saving and what would grow to be life-enhancing surgery.
11 years on
Life with a chronic illness and stoma isn’t a walk in the park, but it’s a walk in the park I can actually navigate because of my ileostomy. I am still breathing thanks to my hospital team and my ostomy. I have been mainly medication free since my surgery for my Crohn’s Disease barring a few times where I’ve needed intravenous steroids for small flare-ups and needed hospital trips for severe dehydration to get intravenous fluids and anti-sickness.
I have experienced so many things I could have only dreamed of pre-surgery. I’ve been on road trips, started singing lessons & performed live, enjoyed many a countryside walk, been able to hold down a job, been well enough to get a dog, been able to look forward to meals out, worked with stoma companies and thankfully been able to help so many and raise stoma awareness…the list is endless. I know ostomy life isn’t just perks and that there are things that I still have to contend with such as fatigue and iron-deficiency anaemia. I also have to dilate (widen) my own stoma because of a narrowing I’ve developed just behind my ostomy and sometimes, this needs to be done in hospital. However, these trials are nothing compared to what little life I had before my surgery. I love so many things thanks to my ostomy giving me the chance to develop my love for these things such as reading, countryside walks, baking, clothes & putting outfits together and also following a passion of mine – singing. I go to singing lessons and they are so therapeutic for me.
Having an ostomy didn’t mean the end for me and thankfully it is the same for so many people. It was just the beginning.