WARNING, STOMA PICS IN POST
I would not have managed without my wonderful stoma nurse, Kate.
Some hospitals don’t have stoma nurses or even colorectal wards, and this is very sad. To have major bowel surgery with the formation of a stoma and no one there who really knows what to do, must be terrifying. There were times ( not many I admit) where the night shift on my ward was thin on the ground, so we were given agency nurses and although they were lovely, many had never seen a stoma and knew nothing about looking after one. I had a leak once and wasn’t overly confident to sort myself out, the one nurse who knew how to do it was very busy, so the agency nurse came to help. She looked pretty overwhelmed so I suggested if she could help me undress and sort my bedding out, I would sort the stoma, she was more than happy with that. I had to take the bull by the horns and do my bag myself. Can I just add that I was very unwell and struggled to move about at that point, I wasn’t being lazy.
This is why stoma nurses need more exposure, they care for people who have had a massive life change with a big body image issue. They deal with poo on a daily basis as do the colorectal nurses ( another breed of nurse that needs more recognition).
When you get a stoma there are many questions and things that can go wrong. If you are lucky enough to have a stoma nurse you have someone available for those scary moments. On the various forums that I am a member of, I am very concerned about some of those ostomates who are overwhelmed and more or less left to their own devices, sometimes not even knowing how to order their next lot of supplies, this is not good. The only real help they get is from the online forums and sites and although this is helpful, it is by no means medical and is really only other peoples experiences. The other thing that totally amazes me is the amount of ostomates with very extensive sore peristomal skin. After a long time of trying various remedies and nothing happening, that’s it, they are left to struggle. I had sore itchy skin one time but nothing to the scale of these poor patients and it drove me insane.
Stoma nurses are there for you.
If you get a blockage or are unsure if it is a blockage, rather than panicking and running straight to A&E I can call Kate and she will run through my symptoms and if necessary will see me fairly quickly. Without that, the scariness of what is happening to you can be overwhelming. Same goes for any pains and bleeding, you worry about hernias and any damage you have done to the stoma.
An example for me is a couple of weeks ago when I was changing my bag, I was shocked to catch a glimpse of the underside of Tomas, because he droops down a bit it is difficult to get a good look. I seemed to have cut Tomas quite deeply ( in my mind anyway) and I was terrified what damage I had done and HOW I had done it. It looks like a ridge and it had a dark bruise/ blood line. I shouted my husband and he took a couple of pics for me to see it properly.
I think because it droops I might be catching it on the base plate, which is not good because it will always be like that then, as my stoma is slightly in a dip at the bottom too. I kept my eye on it for a few days and decided I should ring my stoma nurse. Would it heal ? would I need something doing ? eek. I hadn’t noticed any bleeding which is why I didn’t know I had done anything at all.
I went to see Kate and she put my mind at ease and gave me some tips to try and heal it and stop it happening again. We were not entirely sure why it occurred but at least I have someone to have a look and keep their eye on it. I also got the added benefit of her checking the whole stoma and skin at the same time.
As an added bonus, I asked her to write a piece for my next blog about the day in the life of a stoma nurse, so watch this space.