Victoria Fenner – “There is life after having a bag – and for me its 100% better”

A patient who had a permanent stoma created after suffering with severe IBD has credited the operation with giving her a “new lease of life” and reassured others facing the same surgery that there is nothing to be afraid of.

Victoria Fenner had her entire colon removed at Colchester General Hospital on 26 January 2016 after living with pancolitis – a very severe form of ulcerative colitis – for nearly a decade.

And although she admits that she found adjusting to the stoma extremely difficult in the early days, she now credits it with making her life 100% better, is relishing every day and can once again pursue the hobbies she loves.

Victoria was diagnosed on 24 December 2009 after suffering symptoms – such as needing to use the toilet very regularly – for some time. It was after passing a large blood clot that her GP referred her to the hospital where various tests, including procedures such as a sigmoidoscopy and colonoscopy, confirmed she had pancolitis. Although she was prescribed medication to keep the condition under control, the drugs also impacted on her immune system which meant she regularly suffered with other illnesses.

The situation came to a head two years ago when Victoria, who works for a local law firm, was rushed into hospital with a temperature of 40 degrees after she collapsed while taking a bath at her home in Colchester.

“I just generally felt really unwell – everything was blurry and my temperature kept spiking. I was going downhill rapidly,” said Victoria, who is now 47. “I was in hospital for approximately a week when my consultant told me that the only real option was to have my colon removed as it was at risk of perforating.

“At the time I was devastated. I’d been told about stomas and bags by my gastroenterologist, Dr Shenoy, when I was first diagnosed, but never thought of myself as being ill so didn’t think I’d end up with one. The surgery was carried out as an emergency, so I only had about 12 hours’ notice of it happening, which didn’t give me much time to come to terms with it. I was scared, but fortunately I knew two people who already had bags so was able to talk to them. They were a Godsend – I could ask them anything and knew they would answer honestly as they had been through the same thing.”

Following her surgery, Victoria decided to giver her stoma a name – Gertrude – to help her cope with the change. And although she says the strategy may not work for everyone, she feels it played a key part in helping her successfully adjust to life with a bag.

“Giving my stoma a name somehow helped detach it from me. If I woke up in the night and there had been a leak, I would tell myself that Gertrude hadn’t been well and everything would be fine,” she explained.

“And now my life is so much better – I wish I’d had the surgery a lot earlier. Before the operation I didn’t like to leave the house at times in case I needed the toilet urgently, which meant I couldn’t go on long journeys or flights. But now I can do anything – I recently flew up to Edinburgh and have also taken the train up to Carlisle and I am planning more trips further afield, while I also go to the gym, swimming pool and sauna, just like I did before.

“I was in Colchester General Hospital for a total of seven weeks, which included a week in intensive care, and the care I received from all of the hospital staff was amazing. The stoma nurses were – and still are – always available if I need any help or advice. I’m also more than happy to talk to anyone else who is facing surgery or would like to hear more about living with a bag.  I really would not be where I am today if it wasn’t for the care that I have received at the hospital and, in particular, my surgeon Miss Sharmila Gupta and her team.

“I’m very pro-stoma and am proud of Gertrude, as she both saved my life and gave it back to me. I still need to be careful with some of the things I eat, but feel like I’ve been given a whole new lease of life and now the only way is up.

“I would urge anyone else in the same position as I was to seriously think about having a bag. There is still a lot of stigma surrounding it, but there is life after stoma surgery, and for me that life is 100% better. It’s nothing to be scared of, but can really make all the difference in the world.”

As a reversal was not an option for Victoria, she had further surgery on 23 May 2017 to carry out a completion proctectomy (removal of the rectum) and repair a parastomal hernia, again undertaken by Miss Sharmila Gupta.

She said: “I was scared of another major surgery but it all went very well and now, nearly 2½ years since my first operation, I am living my life to the full again. I could not have done this without my friends, employer and the NHS and staff at Colchester General Hospital.”