I’ve been thinking alot lately about surgery and it’s sometimes negative reputation and impact on the chronically ill.
When I was first diagnosed with Crohn’s disease and we were discussing treatment options for controlling it, I was positive that I could fight this without the need of surgery. I remained feeling that particular way for many years, even as I went on and came off several medications – noted here as Humira, Azathioprine, Mesalazine, Mercaptopurine, Infliximab and Methotrexate – my resolve to not want or need surgery stayed the same. I continued to have my blood work monitored, my colonoscopies and MRI scans scheduled to keep my team updated on the ins and outs of my disease during that time.
I blinded forgot that each failed medication brought me closer and closer to a scalpel.
It was the middle of 2015 and I was sat reading about the prospect of a new IBD medication being approved by NICE, Vedolizumab. I was fighting an abscess in my groin, Infliximab antibodies were growing higher and higher despite the Methotrexate; I needed a new medication. Vedolizumab would take three months to get into the NHS hospitals. My next appointment with my consultant was in a couple weeks time, I would ask about it then.
That consult we discussed not only this new medication but the prospect of what to do if this didn’t work for me. We had to be realistic. I was now being discussed as a possible surgical candidate for a resection. I had a troublesome stricture and narrowing around my terminal ileum. The only way to improve my disease was to remove this and hopefully it would make my treatments more effective. I agreed, this seemed logical and reasonable.
It has take five years to go from believing only in medicine to ‘fix’ me, to understanding that surgical removing what was wrong, was a disease management priority. It seemed that surgery has snuck up on me but in reality, I needed to reach an junction in my path – continue to try medicine or take a surgical option.
From May 2016 until now May 2019, I’ve had three surgeries to treat and better manage my Crohn’s disease.
Were these easy things to do?
No, but they were necessary.
Do you regret them?
No, they were needed.
Do they impact you more now, that at the time?
I am rectum less.
I am colon less.
I have shorter small bowel.
I have an midline incision which has been gateway to my insides three times.
I have an end ileostomy.
I have a healing perianal wound.
I have scars from dozen of cannulas and my PICC line.
I have the scars from burst abscesses.
All of these things are landmarks from my experiences – to date – with Crohn’s disease.
All of these things run through my head on a daily basis, creating fear and anxiety which requires medication to ‘control’.
All of these things affect how I perceive my body and how I think the world perceive me.
All of things mean a whole lot to me but nothing to anybody else.
All of these things remind me that being chronically ill is about making the best choices for you, right there and then. They remind me that nothing is smooth sailing and things can go wrong. They allow me to appreciate the smaller things in life, to not take things for granted. They give me hope and resilience. They give me comfort. They provide me with a map of my recent life. They might have changed my original body but they show I did not give up. They show that I allowed myself to be broken down and rebuilt. They show me that I can do it again, if needs be.
They teach me to entertain all options.
They teach me that my flesh is mine to cherish, no matter what it looks or feels like.