So for those who don't know me; in 2022 I almost died of pancreatitis, it was a bad time. I was put in a coma and was saved by the hard work of the doctors, nurses and support staff of the NHS. I spent 4 1/2 months in hospital relearning how to walk and eat and over the past year have had a bunch of cool complications from that event.
We never really found out the cause and since then pancreatitis has continued to loom over me. Every time I eat and feel anything unexpected in my abdomen I am hypervigilant that my pancreatitis is returning and that I'll be hospitalised again.
Last week that fear became a reality. That also might end up being a good thing.
My experience of pancreatitis begins with back pain. I'm pushing 40 by this point and back pain is hardly uncommon for people my age, but this is constant, cannot be relieved by changing position and ultimately feels like a knife being driven into a tight knot in the back. This persists until it becomes impossible to sleep through the discomfort.
This is the symptom that woke me up last week. In the middle of the night I felt it combined with a stabbing pain in my abdomen, followed by vomiting; and remembered with terrible clarity the weeks of that pain I endured before my first admission. I woke my wife and, terrified, resolved to go to A&E.
At the hospital we went through the standard gamut of blood tests which confirmed that something was going on, and I sat in urgent treatment waiting for a bed to free up. The NHS is an institution under resourced by a government that seeks to destroy it and replace it with medical insurance that would force most working class people into debt so crushing they could never escape it.
As such the wait is long, and I spend a good chunk of it on the floor in a side room because every other position is worse. They don't have an answer for what I have yet (spoilers; it's pancreatitis) and so they can't prescribe pain relief. So I wait. My wife waits with me and I have to look up at her stricken face as she looks down at me powerless to do anything to help.
Being ill sucks and the toll it takes on the people who love you is terrible.
Eventually I have a CT scan (abdominal pelvis with contrast for you radiology fans out there) and a while later am moved into a cubicle where a doctor finally administers IV morphine. The feeling is fuzzy, the relief immediate. My abdomen still hurts a lot, the muscles strained from the vomiting, but the tension I had been unable to release from my body flows out of me and I fall asleep.
At one point I wake up and my wife is asleep in the chair beside me with her head laid by my side on the gurney. I feel grateful and guilty for putting her through this.
From there I eventually get moved to a surgical unit. It's here that we learn that after over a year of speculation we finally have a root cause for my pancreatitis; gall stones. Getting in early and not waiting until my condition for worse means we caught the gallbladder in the act. Motherf-
Sometimes the gallbladder produces stones and sometimes those stones interact with the pancreatic duct, causing the pancreas to decide the world is ending and move all of it's stocks into burning the gaff down. Their own gaff, where they fucking live. It is a dumb and anxious organ. I can relate.
The result was that a few days ago I had a very sexy cholecystectomy. As you can guess that's them taking the gallbladder out, in this case via keyhole surgery which has left me very tender but massively reduced my time to discharge from hospital. The doctor on ward rounds gave me the option of discharge the following day before he went away and spoke with his consultant who said; "Have you seen his history? Not a fucking chance, tell him he's staying" (I assume).
So is that it? Gallbladder gone and pancreatitis no more? Well- Maybe.
Pancreatitis isn't well understood. Gallstones are indicated and the most likely cause of pancreatitis in me. Other causes could be alcohol; which some doctors love to bring up as their pet theory, or cholesterol. Studies are ongoing into pancreatitis (my medical records are part of one of them) to understand the causes and also the varied survival rates among severe pancreatitis sufferers. So with that said there is a possibility it could return and despite everything I have to be constantly vigilant to make sure I am ready if it does.
Which brings us to the last thing I want to talk about, which is living with pancreatitis.
On the grand scale of things my living adjustment for pancreatitis is quite tolerable; I have to take synthetic pancreatin with every meal which allows my body to process things like fat and complex carbohydrates. I also no longer have a gall bladder, this means my body doesn't have a reserve of bile which is used to break down fat as it passes into the large intestine. As such for the next few weeks I need to be on a low fat diet and slowly introduce fats to build up a tolerance.
More difficult for me is the uncertainty around my body. I've never lived a particularly healthy life but before my illness I at least felt like I understood it. Where it hurt, what was wrong, how to know how to communicate that. These days my stomach gurgles and I find myself performing an itinerary of everything I've eaten to see if there's something in there that might cause me to suddenly collapse.
The uncertainty is draining but the vigilance I feel is worth it, and if there's one thing to take away from all of this it's; if you can please don't wait until it's unbearable to get help, please go early if you can and if it's nothing at least rule it out.
If you read all of this; thank you! I really appreciate it.
I just needed to get it out somewhere and because resources can be a little difficult to find/confusing about pancreatitis please feel free to ask if you have any questions and I will answer as best I can about my experience with the illness.