I had never heard of stomas or urostomies before I had my surgery in 1998 – I had a vague idea about colostomies but that was it. I was being treated for what we thought was cystitis, with no success, so my GP sent me for tests – and I was diagnosed with bladder cancer.
There was a steep learning curve before the stoma surgery, and I was lucky to be the patient of an experienced team of consultants based at Queen Elizabeth Hospital in Birmingham. I had a very good Stoma Nurse who was informative, supportive and down-to-earth. We had some laughs even in the midst of the joys of “stomatitis”! She started me off with a Dansac two-piece, and I’ve never looked back (although I do a bit of looking down, as we all do!).
Nothing can prepare you for learning to deal with the bags, stoma, and body image. I was very self-conscious, but I think that’s fairly normal? I went back to work (having had a hysterectomy at the same time “while we’re in there” as the surgeons so classily say). The hysterectomy – or ‘hysterical rectum’ as a friend of mine insists on calling it – became my ‘cover’ story for my 3-month absence. I worked in a quite spiteful environment and my life would have been made very difficult if I had had to explain the stoma. I was too vulnerable then, having been widowed in 1996. I’ve since become somewhat tougher, and would deal with it more easily now!
I subsequently married again, and moved to the USA for a few years, managing hotels with my American husband. (We have now retired to Somerset, and I am a homesick Brummie – or is that an oxymoron?!). Of course, I had to pay for my supplies in America, but luckily we were able to cope with that, sourcing the same Dansac product, and I had the benefit of phone chats and advice from a lovely lady who worked for them in the US.
I have been fairly active with gym, swimming, gardening and even a couple of abseils, but now just do some walking and cycling, and have had very few problems with leakage or the other issues that I hear about. My stoma nurse said to keep it simple (she suggested Calamine lotion for adhesive removal, sore skin etc), and her suggestions have worked for me so far! But nowadays both patients and suppliers are much more informed and we have more choice of products and sources of information. Plus, we have the UA to turn to…
Discovering UA was a blessing – meeting other people ‘just like me’ all living as normal a life as possible. UA publishes useful information leaflets and has a very good website. Their National Office and volunteers are around for a chat on the phone, in person or via email; at Open Days held around the country; and to offer friendly support before and after surgery.
Thanks for reading this, and my best wishes to everyone.