Should We Be Talking Surgery Earlier?
A question I'm often asked, and one that I’d like to pose to you is, "Do you think our healthcare team should be bringing up surgery sooner rather than later?"
In my case, I wish surgery had been bought up as an option immediately.
Surgery following my UC diagnosis
I had surgery less than a week after my ulcerative colitis diagnosis. When they told me that I needed it, I didn't know it was even a thing. I'd been given a booklet about ulcerative colitis immediately after diagnosis. That booklet had led me to believe that with the right treatment, and possibly a few dietary changes, I should be able to lead a normal life.
I believed it. Why wouldn't I? I was 19 years old. I’d gotten sick basically overnight, and the disease had progressed very rapidly over the following 2 weeks. I was well before that. I'd not had any previous experience in the healthcare system. I trusted them.
Ileostomy for ulcerative colitis
I honestly can't remember who told me that I was going to need surgery. Just that it was a stranger to me. I can only assume that it was a doctor. They said that my colon needed removing and that I would have an ileostomy.
They said that meant pulling my intestine through my abdominal wall and a bag would collect the feces there. I had no real expectations because I had never heard of ulcerative colitis just a week prior. I did not know that you could remove someone's colon. I did not know what a colostomy bag was.
I was happy for it to go ahead, simply because I wanted the pain to end, and to get back to normal.
Totally unprepared for what to expect
I met a stoma nurse before the surgery went ahead. She came to mark up my abdomen where the stoma would be created. She actually told me that the stoma would resemble a dog's nose. To this day, I still don't understand that comparison! She showed me some bags, which was helpful. Before that, I was imagining some kind of supermarket carrier bag! Then surgery happened.
Nothing actually prepared me for the gore of it all. Seeing my intestine poking out of my abdomen and the black stitches holding it in place made me feel faint! The drains, catheter, and huge midline incision were overwhelming.
We should talk about IBD surgery earlier
So, back to the question. I've spent many years in the online IBD community. I've seen so many people trying to deal with the shock of needing surgery. A day that they never imagined would actually come, despite seeing other community members going through it.
Yes, I believe that surgery should be mentioned very early on in a person’s IBD journey.
Surgery is a big thing. It takes a lot of mental preparation, as well as physical. Being healthy before the surgery usually leads to better outcomes in terms of recovery.
Yet it's still seen as a last resort, meaning that people are often incredibly unwell and weak going into it. For many, surgery indicates that all treatment options have been exhausted, leaving no options for any subsequent flares, which is obviously a problem in people with Crohn's disease.
We can be more prepared
Even if it’s just mentioned in passing – to plant the seed – it’s worth mentioning. It gives people the opportunity to step away and read about it, and to talk to people that have been through it.
Ideally, in my mind, people should be given information and/or directed to reliable resources by their healthcare team. It gives people the chance to be able to say, if and when they are ready, "Actually, I think I would like to go the surgical route sooner rather than later."
The psychological impact of long or recurrent flares can be enormous. It affects so many areas of our lives. Surgery can be a way back to a quality of life that we consider to be much more nearer our normal, healthy life.
That’s my view on it. I’d be interested to hear yours?
How open are you about being diagnosed with IBD?