I have always wondered when is the right time to have surgery, and why is it only offered as a last resort?
People suffer for years and years with a reduced quality of life never really knowing what living without pain and toilet trips is like.
Gastroenterologists will do their upmost to control the diseases like IBD by medicines of all shapes and sizes, and these medicines have some very nasty side affects. Is it worth putting these things in our bodies compared to having surgery? Why isn’t surgery an option sooner or discussed like steroids and biologics are discussed?
The reason surgery is considered a last resort is the fact that recovery can be slow with complications, but I think if surgery was an option sooner then the chances are there would be less complications and quicker recovery times.
I feel that there needs to be much much better knowledge surrounding stomas with great real information from all the teams involved. I understand that this won’t cover everyone’s form of bowel disease, but if they can add surgery as another form of “ medicine” that the patient can decide about, surely it can only be a good thing? I realise that if you are relatively well you might not want to consider surgery or a stoma but the next time you might not be so lucky, in that case you would be well prepared for the surgery and it hopefully wouldn’t be such a scary prospect.
The stoma teams could get you in touch with ostomates or people with internal pouches even as a normal step in clinic for all IBD patients whether surgery is on the cards then or not, make it the norm to talk about and not a taboo “ This is so scary I might need a stoma, what will it be like? What does it look like? What will I look like? “ etc etc.
I had an emergency surgery that caused me so many complications and I truly believe I was left too long before I could see a surgeon, but not only that, I had no idea what was to come for me and I would have been so much better with preparation and better health pre surgery.
Don’t make surgery a last resort but another option.
In years gone by - I think the surgery was considered as a last resort because of the"stigma" of stoma surgery - what sort of life were you going to have with a bag on your stomach?? No-one one talked about that type of thing. Bags were hidden - not attractive - that world has changed - sure aren't some people wearing their bags on the outside at beaches! For my own part I would always have thought of surgery as one of the obvious options - a better life ahead with a stoma than a miserable life without one because it wasn't be sold as a positive option.