Patient perspectives – Sarah’s story

In the next few weeks, we’ll be bringing you stories from people who know first hand what living with the effects of bowel disease means.

We want to show that research isn’t just something remote done by people in white coats with petri dishes and microscopes. At the end of the day what we do is about supporting & improving people’s lives – from bringing about practical improvements in care & treatment in the here and now, to bringing hope of eventual cures through scientific discovery.

So, read Sarah’s story below to see just how your support of our work makes an incredible difference:

Can you give us a short biography about you & your experiences?

I had surgery to form a colostomy in 2007 due to a rectovaginal fistula. A fistula is an abnormal connection or passageway between two organs or vessels that normally do not connect. Mine was very low, so more accurately an ano-vaginal fistula. When my symptoms were at their worst it really was my low point, I leaked poo constantly and it was mortifying.  We still have no idea what caused the fistula but it was a tricky so and so and took four years and seven attempts to finally repair it. This was bitter sweet though, as by that point the surgery had damaged my sphincter muscle beyond repair. So I am the proud-ish owner of a permanent colostomy. I say proud-ish as I make no secret of the fact I don’t really like it. Unlike those with disease who feel much better after surgery, while I am very very grateful the stoma stopped the horrendous fistula symptoms, it hasn’t turned out as planned. However, while I don’t like my stoma, I accept it is what it is and I am not going to let it rule my life. I do everything I did before – and so much more….. I remember about 14 years ago my new next door neighbour was telling me about her hobbies and she asked me what ‘my thing’ was. It struck me that I didn’t have a thing. I had two small children and a full time job, how would I have time for a hobby? Well, while the kids are now no longer small, and I still have a full time job as a Research Scientist working on therapies to treat Duchenne muscular dystrophy, I have my hobby! I could never have imagined the huge positives which have come out of my  broken ‘bits’ but fairly early in my journey I felt I wanted to help others going through similar to me. I became a volunteer then trustee of Colsotomy UK and until recently was co-editor of their quarterly magazine Tidings. I am a member of the Association of Coloproctology of Great Britain and Ireland (ACPGBI) Patient Liaison Group,  am on the Specialised Colorectal Clinical Reference Group and an expanding number of clinical trial steering committees as a patient representative and an advisor for the IDEAL Collaboration. I am passionate about being a voice for patients. I started by wanting to save just one person from the fear and uncertainty I felt before my surgery, and I still see the patient at the centre of everything I do, but it has grown into so much more alongside this and I absolutely love it. I guess I found ‘my thing’ and somehow it does fit in alongside a full time job and family, and while I wouldn’t choose to have health issues or my stoma I look back at how it has changed my life for the good and I can’t help but be happy.

If there’s one thing you want people to know about bowel disease – what would it be?

This is in two parts. To someone facing bowel disease I want to shout that there is support out there and they do not need to suffer alone. Bowels are still a taboo subject to many and it can be hard to open up. But we all have bowels and they all produce poo, so reach out as I promise there are lots of people who know exactly how you feel. Also be reassured there are many many people working to treat, cure or improve quality of live with bowel disease so never lose hope. Secondly, to those who may never have been touched by bowel disease, again I would urge you to be open about the subject and talk about it. The more people that talk about bowel disease, the more awareness is raised and more support of patients and research will be possible.

What does ‘successful’ research look like – and what would it mean for you?

I am possibly the stereotypical image of research, in my white coat, pipette in hand. But there is so much more to research, and in the field of bowel disease, research can take many different forms. To name just a few, it can be looking at quality of life for people living with certain conditions, collecting data retrospectively, looking at the effects of new or alternative treatments. For me, as someone who suffered from a relatively unusual condition, this research may never find out why I had my fistula, but it could make a huge difference to how I live my life now, as well as help others who come after me. It’s back to my desire to help others suffer less than I have, and this research goes a long way towards this. And who knows what is around the corner for any of us, while I don’t like to think more could go wrong it is very reassuring to know people are striving to push the boundaries to find out everything they can to give me the best possible outcome.

What are your hopes and fears for bowel disease research?

When I first heard the BDRF vison ‘a world where bowel disease is eradicated’ I must admit I thought it was a little ambitious, and in fact BDRF go on to say that very thing: ‘It is a bold and ambitious vision – and deliberately so. The patients that we serve and the researchers that we fund demand this from us’. That made me stop and look at what BDRF have achieved and the work they are currently funding. And I believe they will not stop until they do succeed, and along the way they are changing lives every day. We all fear that the diseases will beat us but with the support of funding, the brilliant and dedicated researchers and the flow of amazing ideas I really believe it is possible!

Why do you think someone should support the Bowel Disease Research Foundation?

Like research, support comes in many forms. But at the end of the day, research costs money. I know as a day to day scientist that we aim to spend as little as we can to achieve the best results possible, and BDRF are the same. They are rigorous with their research strategy to ensure relevant research is carried out to best impact the areas of concern. None of this can happen without the generous support of donations. As someone who can benefit first hand from the work of BDRF I thank their supporters from the bottom of my heart. It sounds corny but I actually get a lump in my throat as I write this. This work saves and changes lives, and whether someone can make a donation, buy a t shirt, hold a fundraising event or fund a whole project, you can make a difference.