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Sarah’s #superstoma

09 August, 2017

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My stoma didn’t save my life but it was a welcome relief to the problems I was having at the time. I was diagnosed in 2007 with a rectovaginal fistula. A fistula is defined as an abnormal connection or passageway between two organs or vessels that normally do not connect. In my case, a hole between anus and vagina, so it was more accurately ano-vaginal. These fistulas can be caused by trauma during childbirth, symptoms of Crohns disease or Ulcerative colitis, or sometimes from complications during surgery. My cause is a bit of a mystery as none of the obvious reasons seemed to fit. I’d had my ovaries out as a precaution after losing my mum to ovarian cancer in her forties and thought the spotting I was getting may be something to do with the HRT I was now taking. Things got worse though, much worse, and I began passing poo vaginally so finally plucked up the courage to go to the doctor. I was booked in for a repair with a 70% success rate. I didn’t even consider that it wouldn’t work but just two days post op my symptoms became much worse.

This will definitely go down as the low point in my whole journey. Each time I went to the loo I leaked poo vaginally for hours. I find it hard to explain just how awful I felt. It’s not the sort of thing you tell people. It’s dirty. It’s embarrassing. It’s wrong. After two visits to my surgeon the option of a temporary stoma was suggested. In one way the thought of a bag was a relief. But will people know? Will I be able to go to work? Will it be noisy? Will it smell? With the help of my brilliant stoma nurse, Simon Turley, the online Ostomyland forum and Colostomy Association I realised this was the best option for me. I had instant relief from the fistula when the stoma was formed and although the plan was for another fistula repair followed by reversal it didn’t quite end up that way. The fistula was eventually fixed, following seven repairs over four years but all the surgeries had damaged my sphincter muscle. I could try a reversal but would most likely suffer incontinence. By this time I had accepted the stoma and managed it very well by irrigation. There was no way I was going to swap this for rushing to the loo for the rest of my life.

I don’t like my stoma and probably never will. I do have down times and suffered a hernia which was thankfully repaired at the same time as my rectum was removed due to mucus and pain issues. But I am determined to enjoy life. My family have been amazing throughout the whole saga but still keep me busy and don’t give me time to dwell on the bad things. I work full time as a Research Scientist but I am passionate about helping those facing a stoma and raising awareness. It does sometimes feels like a second full time job but if I can help one person feel less scared than I did then I will be happy. I have made so many friends through getting involved with the Colostomy Association and my involvement in the stoma world continues to grow. I absolutely love it. A stoma isn’t something anyone would choose but so much good has come from having mine I have to be grateful in so many ways.

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