All I really wanted to do was cry, be scared and to talk to someone who I could relate to
When I was first given the news that I needed emergency surgery to have a stoma all I really wanted to do was cry, be scared, and to talk to someone who I could relate to; someone who could tell me honestly what it would be like (as a 30-something with a young family) to live with a bag. The stoma nurses at my local hospital supported me excellently of course, but talking to someone in the same boat as me, was hard to find! I did know another lady locally to me who had ulcerative colitis, and was due to have surgery not long after I’d had mine, so only weeks after my own operation, I supported her and answered her questions from the very limited knowledge I’d gained in the months after my surgery. Subsequently she knew two other ladies who had stomas, so one night we all got together and we talked, and talked and talked.
I floated the idea of a support group to them
I started to think how amazing it had been to talk to other ostomates who completely understood what I’d been through, what I was dealing with and what the future might hold. It wasn’t long before the 4 of us spoke again, I floated the idea of a support group to them and they all agreed how helpful our evening chatting was and how much they had gained from it too. I also spoke to the stoma nurses at our local hospital who were very excited about our little acorn of an idea. In April 2014, our support group of just the 4 of us began. We came up with a name that reflected all the values we wanted and needed to be able to give to other ostomates locally. F.I.S.H.Y.S (Friendship, Information, Support & Help for Young Stomates) was born; our group was specifically aimed at 18-45 year olds in the Derbyshire area, and went from strength to strength. By June 2017 we were more than 85 members, including 10 committee members.
Providing support for 85+ members can be a huge challenge.
We like to keep things open, honest and positive, but it can be difficult sometimes to hit the right balance. Often, we have new members who are scared and worried about their impending surgery and how they will cope.
Our group is so diverse and varied; we have members who are terminally ill, members who are in hospital, members who work or are studying, some who are married, others are single, some have children, some are infertile. The diverse nature of our group means that on any one day, we are providing such varied support. All the committee members are volunteers and many of them have lots of other commitments; their volunteering is simply done out of the goodness of their own hearts and fuelled by a passion for supporting those who've been through similar situations as themselves.
Supporting others can be hard work, but providing this support is also unbelievably rewarding.
The nurses love what we do and appreciate the support we give. Their time is very limited so it’s nice to feel that we can provide a certain level of back up to assist the work of the stoma nurses. The best reward though, is when we’ve supported someone from before they've even had surgery and the idea of a stoma is just so scary to them, then, to see them come through surgery successfully, and find comfort in the information and friendship we provide. A few times a member has told me that they are so glad F.I.S.H.Y.S exists because it made them feel so incredibly normal and not alone! I feel so honoured to be able to help so many people when they are scared and are at their most vulnerable. If my own experiences and consequently setting up the group has been able to help just one person, it makes all the hard work, blood, sweat, tears and pain worth it.