Going through ostomy surgery and recuperating with nobody to help you learn how to properly care for an ostomy must be terrifying. Some hospitals don’t have stoma nurses or even colorectal wards, and this is very sad to me.
During my hospital stay, there were times (not many I admit) where night shift nurses in my ward were sparse, so I was taken care of by the agency nurses. And although they were lovely, many had never seen a stoma before and knew nothing about caring for it. One time I had a leak and wasn’t overly confident to sort it our myself. The only nurse who knew what to do was very busy, so the agency nurse came to help me. She looked completely stunned, so I suggested she help me change my clothes and bedding and I would sort out the stoma—she was more than happy with that arrangement. I had to take the bull by the horns and do my bag change myself. May I add that I was feeling very unwell and struggled to move around at that point, I wasn’t being lazy.
On various forums that I’m a member of, it seriously concerns me that some ostomates leave the hospital unprepared and are left to figure things out on their own. Some don’t even know how to order their next lot of ostomy supplies, this is not good. The only real help they get is from online forums and blog sites – and although this is useful – it is by no means medical instruction, essentially just personal experiences. The other thing that totally amazes me is the number of people who have extensive peristomal skin issues. Even after trying various remedies nothing is working, so they're left to struggle on their own. I had sore itchy skin one time and it drove me insane, but nothing to the scale of my fellow ostomates.
Whenever I’m in a situation, like the time my stoma had a cut, rather than panicking and running straight to A&E, I’m able to call my wonderful stoma nurse Kate. She runs through all my symptoms, makes suggestions and lets me know if it’s necessary to see a doctor quickly. Without her help, the fear of what’s happening to me would be so overwhelming. Just being able to talk to Kate about different situations with my ileostomy puts my mind at ease and gives me confidence that I can handle certain things.
When you’re new to an ostomy, there are so many questions and things that can go wrong. If you’re lucky enough to have a stoma nurse, you’ll have an expert to help you through those insecure moments. Stoma nurses are there for you—this is why they need more praise, as do colorectal nurses. To my heroes everywhere, thank you for doing your job so well.