Sarah’s stoma story – My incredible life with a stoma

18 August, 2020

Sarah tells us about her life pre stoma surgery, the positive impact it’s had on her life, and how she’s #TacklingTheStomaStigma

“My name is Sarah and I am 30 years old. I was diagnosed with Ulcerative colitis at the age of 16. Being diagnosed at such a young age was really difficult. I was going through my GCSE exams and I found I was having to rush out mid-exam to use the toilet. It was so embarrassing. Being so young it was a very lonely process, my friends didn’t understand so I didn’t really have anyone to speak to about it.

Through the years I have been on numerous medications: Asacol, Pentasa, Azathioprine. Unfortunately these oral meds did not work for me; my body would not absorb Asacol and Pentasa.  Azathioprine worked for a few years but, unfortunately, it reduced my white cell count too low,causing neutropenia. It was then decided that I needed to start biologic drugs. I began on an Humira injection every two weeks. These were then increased to weekly but, unfortunately, my body wasn’t able to retain enough medicine for it to work. I then moved onto IV Infliximab. This worked well for around two years but my body then grew antibodies against this medicine, so I was moved onto Vedolizumab in October 2018.

2018 was a big year for me: I went to USA in April 2018 to compete in the cheerleading world championships; I got married in July 2018;  I then travelled back to USA in August 2018 for my honeymoon. I returned in September and it was shortly after this that I had to change onto Vedolizumab. It felt to me that my body had held out so much for this important year that it couldn’t cope anymore.

In April 2019 the Vedolizumab stopped working for me and I became unwell. I was rushed into hospital and had to have emergency surgery (subtotal colectomy). This has left me with a stoma and a small part of my end colon left (the rectal stump). They decided to leave the stump, in case I wanted to have reversal surgery/J pouch.

Pre–operation living with Ulcerative colitis was very hard. I spent the 14 years before my surgery on strong medications and only around four years where my Ulcerative colitis was fully controlled. During these years I ALWAYS said that I would rather die than have a bag. Looking back now I wish I had had a more open mind about stoma surgery. The life that having a stoma has given me is incredible. I wish I had undergone surgery years ago. I love my new life and I love my stoma. I live daily without pain and can enjoy things I could never normally do. I now have control over when I want to go to the toilet, rather than having to rush off to the toilet worrying that I will have an accident.

The first six weeks in recovery were the hardest. As I was fairly active it was tough not being able to do things that were once very simple – for example lifting the washing basket or cleaning my teeth.

However, as I started to feel better, I focused on myself for the first time in a long time! I have achieved so much since my stoma surgery. I have become a level three qualified personal trainer. Along with my best friend I have started my own cheer-leading team. I have enjoyed three amazing holidays with my family, friends & partner.

I actually feel like I have been given a new lease of life.

Before my surgery I didn’t have control of my illness, instead it controlled me. I would try to counteract this by adapting and changing other aspects of my life, such as my food intake and my exercise levels, in the hope this would make make me feel good. Looking back I can now see that this was no way to live.  Now, I feel more confident within myself and my body and how I look than I ever have before, and it’s all because I feel well! I named my stoma Stella and she is now fully a part of me that I love.

Because I feel so passionately about promoting awareness and positivity for people who have IBD, stomas or are potentially going to have surgery I created an Instagram page @positively_stella. This page is all things stoma & IBD related! I have posted my top stoma tips and openly shared my stories and experiences I have had with Stella. I have shared videos on how to change your bag and have gained such positive feedback from those who have followed me.

My aim is to raise awareness and show people out there that this is normal, it is my normal and no matter what you are going through in life, it is your normal, don’t let society tell you otherwise.

Colostomy UK offer support and reassurance to people on every stage of their journey ‘living with a stoma from pre-op onwards through our 24/7 stoma helpline, Instant messaging service, Private Facebook group, Tidings magazine, and advice literature. To find out more visit https://www.colostomyuk.org/support/