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Brenda’s Story

As you can read here, my stoma story began in September 2014 when I had my first surgery; a subtotal colectomy and temporary illeostomy. I wasn’t too friendly towards my little stoma to begin with, not realising at the time that I wasn’t recovering satisfactorily from the surgery and finding everything difficult to cope with. Six weeks after surgery they performed a colonoscopy and told me that the crohns was back and was in the whole of my colon. I was put on Methotrexate and told it was the last medication they could try as everything else I’d tried had not worked for me. My consultant said that he had never known it come back so quickly. I just thought lucky old me.

In February 2015 they discovered an abscess in the surgical wound which required more surgery and a vacuum dressing. Unfortunately the vacuum dressing and my stoma pouch were too close together and caused so many problems, either the vacuum dressing would lose its seal or my pouch would become unstuck and leak. After around six weeks of coping with this the surgeons decided to remove the vacuum dressing and for the next two months I had to go to see the nurses on alternate days to have the wound packed.

During this time I began to feel a little better, more like myself at last and felt more friendly towards my stoma. I even gave her a name, Stella, mostly because if we were out in public and I needed to let my partner know I had a problem we could use the name as code so no one else would know what we were talking about.

Finally in June 2015 the wound healed and I felt well enough to start getting out and about at last and we did manage to get away for a couple of days here and there.

Around September 2015 I began to feel really sick and dizzy, my hair was falling out daily and I was not very well at all. Unfortunately although the Methotrexate seemed to be keeping the crohns at bay it was obvious that it was yet another medication that didn’t agree with me. The decision was made to remove the rest of my colon and in November 2015 I had the surgery for that. That’s when life changed.

The difference in me since the surgery in November is nothing short of remarkable. Once my colon was gone and my stoma made permanent I didn’t look back. At my six week check up with my gastro consultant I literally bounced into his room and he couldn’t believe the change in me. Since this surgery apart from a vitamin D supplement I have been medication free. My hair has grown back and I feel really well. I do realise that with IBD you never know what’s round the corner but my philosophy is enjoy being well while you are!

I love my stoma because she has changed my life so much for the better. I go anywhere I want to go with no worries (I do always have spare supplies in my bag) I wear what I want within reason remembering my age. I will talk about having a stoma to anyone who’s interested. I’ve recently started having my photo taken with my bag out when we visit somewhere new and I’m hoping eventually to do a small album of the photos in the hope of spreading awareness and maybe encouraging others to not be worried. I’ve climbed to the top of Burgh island in Devon whilst on holiday and felt so proud that I could do it. Some days I walk for several miles just for the exercise and the thrill of actually being able to do it. Before my stoma I spent months of getting exhausted just walking from my seat on the sofa to the front door. I keep to a low residue diet now and so far it working perfectly for me.

One of the biggest events that has happened to me since my surgery was in June last year just after my abscess wound had healed. After sharing my story I was contacted by Pelican and asked if I would do a photo shoot modelling specialist clothing for ostomates for a brochure. I excitedly said yes then discovered it was for swimwear. Oh my goodness was I nervous about that but I did it and it was an amazing experience!

I have so much confidence now, I tell myself “you have a stoma, you wont go all your life without a leaky bag” and I think that attitude helps me a lot as in the early days I was devastated when I got a leak. I just believe accepting  that accidents can happen but its not the end of the world is the best way to look at my life now.

I have a radar key which has been a life saver. I think its an awful shame that people are unaware of our invisible illness and some feel the need to comment or scowl when we use disabled toilets but I will always use them. We need toilets with more space and a sink and its just as simple as that.

I’ve had so much wonderful support particularly online from ostomy companies and from other ostomates who have become personal friends. I’m still in the wonderful #getyourbellyout support group on Facebook because without their support I would never be where I am now. I’m now supporting others when I can in the hope of giving something back to the group.

So that’s me as I am right now feeling good and so happy with the way things are. Oh and my lovely little stoma is now called Rosebud because finally I love her and wanted to give her a pretty name.

When I was told that I was going to have a bag I was devastated and in preparation I bought wipes and latex gloves and anything else that would create a barrier that would stop me touching the stoma. Never in my wildest thoughts did I think that I would end up loving her and being so grateful every day that I have her.

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