Hi Tine,
Firstly, I hope you're healing well and that everything is now working as it should do.
My experience of hospital care was mixed, the stoma nurses were really kind and informative, I also got visited at home every week or so by my stoma nurse, it was really useful during the first few weeks and months when I was getting used to how things worked. Very useful for those "oh my gawwwd" moments you something doesn't look or feel right with your stoma, it's re-assuring to have a medical professional come round and tell you all is alright.
Now I'm on my two feet, so to speak, my nurse doesn't need to see my anymore but I can still call for her help and advice if I get stuck with something, called her the other week in fact to get a new template drawn up as my stoma appears to have shrunk in the last few months.
I have to say though, that the level of understanding, both on a practical and an emotional level from the rest of the NHS staff was a pretty mixed bag, generally speaking not great and when it was poor, it was very poor. I was suprised that a lot of the generic nurses and care assistants didn't seem to know the difference between a colostomy and an ileostomy, for instance, neither did the dietician who came round to advise me for that matter.
In fact, come to think of it, I spent my first post-op week in hospital thinking I'd had a **colostomy** because the nurses had misinformed me! I can laugh about it now but it's incredible, really.
An example of how poor the emotional support is: When the surgeon in charge of my overall care broke the news to me me that I would have an operation and wear a bag, I was devastated. I tried to tell her I was afraid, that I wasn't a seventy year old man, I was only thirty and still had a life to lead, that I was scared this would stop me living the life I knew, but all I got back from her was "well, we have nineteen year old girls who have this done....."
Oh.
So that's alright, then!
I remember trying to tell a nurse on the night shift that I was scared, this was actually before the above conversation when they were still trying to medicate me, the machine had malfunctioned and had stopped pumping the medication, I told her I was scared because if the medication didn't work they would have to take my colon out but she just basically told me I was making a fuss and that a lady on another ward who had to have her breast cut off hadn't made as much of a fuss as me!. Ie, pull yourself together! I know the other lady must have gone through hell as well, but as terrible as it is isn't having a breast off a cosmetic thing? Wheras having your colon out changes the way you go to the toilet, what foods you can eat, what you can drink, maybe how some people perceive you, potentially your entire lifestyle could be changed.
I guess it doesn't really matter if having a breast off or a colon out is more important - the point is, as a patient, I was scared about what I was going through and I didn't feel my fears and concerns were being addressed - if anything, I felt they were being belittled.
[Disclaimer - a year on I now know that surgeon's decision to operate has improved the quality of my life immensely and that I owe her a debt of gratitude, I also know the nurse was only trying to help me in her own way and that a lot of my fears were founded through a complete lack of knowledge and ignorance about ostomies - I hadn't even heard the word stoma before I was taken into hospital, for instance - but I'm just trying to get across that the emotional support for people due to have an ostomy isn't always great]
A year afterwards, I actually met a healthcare professional who by coincidence happened to have a stoma and it was great to talk to her, share common experiences and tips etc.......part of me says I would really like to talk to people who are about to have the op or have already had it and are having difficulty re-adjusting, to use my experience to let them know that things won't be as bad as they fear and maybe I will do that in time...........but you know what? If I'm honest, when I was laying on that hospital bed with all kinds of thoughts of devastation going through my mind and some grinning bastard had come through the curtains to tell me life with a bag would be a-ok, at the time I probably would have just swore at them, but then it was a rather emotional time!
Sorry, Tine, I've gone on a bit there. In short, this isn't a service I was in the right mental frame of mind to benefit from when this was all very new, *but* today if someone who was in my position contacted me to ask for help or some of my time then I would never turn them down as I know what a lonely experience this can be (even with a partner, there are some things that you just have to have lived yourself to appreciate, good or bad!). So maybe in time I would register with my local hospital or ostomy foundation as a volunteer.
