Sphincter of Oddi Dysfunction, I’m Deadly Serious.

Shaved ice! Best to cure…heartburn, stomach acid, nausea, … and pancreatic attacks.

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Ever had trouble with your pancreas? A pancreatitis attack? Well, how would one know? You would know because it feels like you are literally going to die from the pain and you invite death. Anything is better than living with the pain you feel as it crushes your middle, right under your ribs all the way around to your back. You find yourself crumpled on the floor with searing heat overtaking your midsection. You can’t straighten up and are curled in a ball, literally stifling screams from the pain you feel.

The pancreas is a little organ or “gland”, inside of your body that resembles the shape of a fish. Your pancreas inflames and quits working. All of the nutrients you consume go through you, and you begin to rapidly lose weight and have trouble remembering the day’s, week’s and month’s events as the blood is slowly being redirected from your brain to feed the other organs in your body from completely shutting down leading to your death.

That was the first stage, a clear indicator something was wrong … but I just had the ‘fat lady surgery’, (the RNY weight loss surgery) a little under five years prior. I thought nothing of a rapid weight loss period as the weight loss came in increments over the first five years after surgery, this was ‘normal’. This is what we were taught in the classes, yes, you have to take classes before the RNY surgery. The memory loss? I attributed to fibro fog. Surely this was related to my cognitive difficulties from fibromyalgia? I was so sure. I was so wrong.

Fast forward; eleven lengthy hospital stays and seven surgeries later … I found out that I had a calcium blockage in my pancreas that caused the inflammation which in-turn resulted in an idiopathic (unknown) pancreatitis diagnosis as well as a permanent sphincter of Oddi dysfunction. (Meaning the duct that drains bile would not work correctly, creating a calcium deposit by a bile back-up that inflamed the pancreas.) How’s that for a big revelation that took four years out of my life and two years that I cannot remember one damn single full day from.

I ordered and reviewed my hospital notes, trying to regain my memory. My husband wouldn’t or couldn’t talk to me about it. Some form of sheer terror would show in his eyes everytime I questioned him. All he’d ever say is, “You lived, you survived, that’s enough.”

I searched through the medical records. I had signed two DNRs. Once my husband was called into the recovery room to attempt to wake me up from the anesthesia because the nurses in recovery could not. I was not expected to live through many of the surgical procedures. The procedures which included several ERCPs, Endoscopic surgeries with stent placements to enlarge the opening of the inflamed pancreas to finally remove the calcium deposit. My skeletal remains of a gallbladder were removed. I had numerous stent placements, CT scans, and scopes. I had a living will in the system. I had a drainage tube inserted that stuck out of my stomach for over a year. Some of these notes jogged certain memories, like that damn tube, but I am not certain of the rest…

The good news is there is an 80% recovery from pancreatitis. The bad news is I am in the 20% group.

But I am still here! I am still fighting! I am still educating people that idiopathic pancreatitis is real, of unknown origin, and can be lived with even though pancreatic attacks will continue to plague me for life. They happen ‘at will’ and ‘whenever’ they damn well feel like. My doctor told me to stop blaming myself and just learn to live with this. So I quit complaining about it. I put a stop to the ridiculous and very intrusive continued surgeries they wanted to try but could not say the results would benefit me in any real way. I can put up a good fight now, I know what to do when an attack hits and when to call it a day and check into the hospital for IV fluids and painkillers … but those check-in days are few and far between.

I got this!

 

2DE45478-3139-4A04-8299-57F000C3ECAC~Kim

8 comments

  1. I am sorry you have been through so much. I am so glad you have great support, that is always helpful. Wishing you wellness and comfort! Please let me know if I can do anything for you!
    Hugs, Alyssa

    Liked by 1 person

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