I’m so excited to start this post off with a positive! I’m 19 days into January and PAIN FREE! This is such a huge deal for me, I can’t even process it.
Okay, so I’m not 100% pain free; more along the lines of 70% but it’s still a dramatic improvement from 2015. Thankfully, it’s less frequent and doesn’t last very long either, meaning I’m not exactly disabled by the pain as I was last year. I’m still getting my head around saying last year. I actually survived 2015.
After well over a year of being seen by multiple private specialists in and around London, my parents and I lost hope in the private medical care system simply because nothing was being done. I’d had countless tests done, all coming back negative meaning the doctors had literally nothing to go on in order to make a concrete diagnosis other than my pain. Considering there was no visual evidence to support the pain, it was hard for them to figure out what was going on inside me and I think they pretty much gave up after increasing my daily pain relief and putting me on 3000 units of Creon a day.
During my hospitalisation in November last year, I was referred to a hepatologist at Royal Surrey County Hospital – a tertiary care centre. Because I wasn’t getting anywhere privately, we agreed it was best to get another specialist opinion and I had the consultation last week. (Downside to the NHS: everything takes at least a month or two to happen!) I was seen by and am currently under the care of the hepatology surgical team who informed me that the Sphincter of Oddi Dysfunction (SOD) diagnosis has been confirmed. WAHEY.
After having a procedure in December, they discovered slight inflammation in the bile duct which suggests a possible latent gallstone (from my laparoscopic cholysysectomy) had recently passed through. This would explain the recurrent attacks of excruciating pain which landed me in a&e so many times last year as well as my intolerance to codeine and morphine. The slight issue with SOD is it’s unpredictability; I have no way of knowing when another attack will take place or how destructive it will be. The surgeons have come up with a potential solution, one which has been brought up by a number of my surgeons and consultants: surgery. A cutting of the sphincter muscle will reduce it’s overactivity which is the fundamental cause of pain everyday, however there are many risks associated with such a rare and risky operation. Most importantly, it carries the risk of internal bleeding and pancreatitis. Having had one attack of acute pancreatitis already, I’m not too keen to have another one as it left me in hospital for a week, attached to a IV opiate drip. It also carries the risk of severely damaging your pancreas, another obstacle I’d rather avoid.
The next step is to be seen by a hepatologist consultant who will discuss his opinion on the surgery and whether the pros outweigh the cons. He’ll then liaise with the surgical team and they’ll come to their professional conclusion before consulting with me. It sounds awfully similar to my last consultation with my private specialists, but this time round I’m definitely more positive as they’re going to get to the root of the problem regardless of the methods they choose. Knowing what health condition I have and that something is going to be done about it has put my mind at ease already!
Clarity. That’s all I needed. And now I’m much happier and more optimistic, too. The possibility of a pain free future is looking increasingly likely!