“The bag for me” – Rebecca’s story

I was 29 years when I started to experience extreme pain, bloody stools and an overall feeling of being unwell.  I was due to go away with a group of friends when I came down with what I thought was a bad case of gastro.  I was that unwell my sister had to come to my house and collect me from the bathroom floor.  The following week my symptoms became worse and I remember being taken to the local hospital from work where I was discharged that night.  Two days later I ended up in emergency where I was diagnosed with UC, and I spent over a month in hospital.

Three quarters of my bowel was severely ulcerated.  They started the hydrocortisone which my body loves so my symptoms reduced.  Once I came off that everything deteriorated.  I remember the surgeons came to see me on the Thursday before Easter and said if I had not improved before Tuesday, I would be booked in for surgery to have my large bowel removed.  I remember crying and feeling numb.  Tuesday came around and I improved slightly so I started a week of cyclosporine via IV before going on to tablets.

Three years down the road and, despite taking many tablets to hold it at bay, my UC flared up again severely.  This time I tried a faecal matter transplant which gave me a few more years of a somewhat normal life, but once again the UC came back.  This time I tried infliximab with the hope that would be a winner – unfortunately it did not work for me. In 2020 I became pregnant with my first child and at the same time my UC flared.  For nine months I was in and out of hospital whilst taking the safest medication for my unborn baby.  My little girl arrived and we were back trying more therapies – adalimumab and vedolizumab.

Twelve months after having my daughter I went in for a colonoscopy as I wasn’t feeling well with active UC. I woke up in recovery and was told I was having my large bowel removed the next day.  I knew in the back of my mind that this was going to happen one day so I thought ‘how bad could this be, I’ll get my life back’.  The surgery went well and a few months later I was living a life I hadn’t had for many years.  I could eat, go out without having ‘emergency stops’ and I was healthy.  I had a great stoma with minimal leaks or disruption to my life and, to be honest, changing my stoma bag was easier than a dirty nappy.

In 2022 I became pregnant with my second child and was told it may not be easy with an ileostomy.  As my son grew in my tummy, I started to have regular visits to the emergency department as he was pushing on my small bowel which was causing blockages.  After the first blockage, the doctors were able to ‘unblock’ me with keyhole surgery but, the second time, my bowel perforated causing me to get a new stoma (lucky it happened 3cms from my old stoma). This with a premature baby at 32 weeks and a five week stint in hospital.  This time around my stoma was not as friendly and I was leaking daily. I remember thinking “if this is my life now I don’t want it.”  After a few months working with my stoma nurse, we found the ‘bag for me’ and I once again I have a life. When I am mentally ready for my next surgery I will make my ileostomy permanent.

I could write for hours on living a life with UC and the challenges that come with it — including the pain, the fatigue, side effects from the medication and at times the embarrassing situations.  I guess I am writing a snippet of my story to let others know that life with a bag is manageable and lead to a better quality of life compared to the years of living hell without it. This is especially the case with a great medical team around you and family and friends who care and support you.

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