“Life’s disappointments are harder to take when you don’t know any swear words.”
-Calvin & Hobbes (Bill Watterson)
I am broken and Husband apparently forgot to buy the extended warranty when he purchased me.
It recently occurred to me that you might be curious about this mystery illness I’ve casually glossed over and mentioned here and there. This post will not be witty. It will not be full of wistful prose. It will be an open, outright, and frank discussion on the reality of my life. So here it goes, try and keep up.
Basically, I have broken pancreatic (or biliary) ducts. For those of you not in the know, because seriously who really wanders around going “Wow today I want to learn all about the pancreas”, I will explain. So lets get a little anatomy lesson first.
Three organs produce digestive “juices” that help break down the food you eat. These are the pancreas, the liver and the gallbladder. The biliary ducts act as the plumbing system for these organs. The biliary ducts allow bile from your liver to be released from your liver. The pancreas is the organ normally know for being responsible for producing insulin, which is used to control your blood sugar. But the pancreas also is responsible for producing a number of hormones and also enzymes that further help breakdown food in your intestines. Bile is required to digest the food you eat. Extra bile is stored in the gallbladder until its needed, this is a good organ to have but not necessary so when you have gallbladder problems surgeons normally just remove it. The gallbladder is basically the middle man between the liver and pancreas, because it holds bile until its needed. The biliary tree is basically all the ducts that connect these three organs and transport the bile and pancreatic enzymes to the intestines. So just to make sure we’re all on the same page here…. Bile comes from the liver, through bile ducts, into the pancreas, extra bile is stored in the gallbladder, extra enzymes are added by the pancreas, then all of the bile is transported through the common bile duct into the intestines to break down and absorb your food. Got it? Good.
So now that you understand basically how this system works, you can begin to understand my condition. There isn’t really an official “name” to the condition (like Lupus or Diabetes) I have but it basically referred to as Pancreatic Duct Strictures. My condition isn’t really just one thing, its more like a lot of little things causing huge problems. Pancreatic duct strictures can be the result from several things like infection, cancer, gallstones, or for unknown causes which is my version. My doctors have no idea why I suddenly developed these strictures. A stricture is basically a significant narrowing of the duct, causing a much smaller hole for everything to go through.
These strictures cause huge problems though. Because my ducts become so narrow, bile that normally would pass through the pancreas is backing up into my liver. And because the liver also filters the body of toxins, these toxins are also included in the bile on the way out via the bile ducts. So all those toxins building up in my liver cause for a lot of problems. This whole cascade of problems is where my illness lies. The liver and pancreas cause me a lot of pain. They also give me a lot of nausea. And when my liver is particularly sick I get unbelievably itchy. Because apparently all those toxins that build up in the liver cause a reaction similar to an allergic reaction and cause itching that no allergy medication can fix. The damaged liver also causes fatigue and arthritis symptoms. And because my pancreas isn’t being used like it normally should be, because of the duct stricture within the pancreas itself, my pancreas is slowly atrophying. Basically, its shrinking and slowly dying because it’s not being used, just like muscles do if they’ve been in a cast too long!
At this point I’m sure you’re wondering why this hasn’t been fixed yet! Well that is a simple answer, it can’t. Well that’s not entirely true. There is a major surgery that is an option that requires basically my whole digestive system to be literally taken apart and re-wired. This is very serious and normally reserved for last case scenario. Transplantation might also become an option later on if my liver and pancreas become damaged enough.
But we do have a temporary fix and this is why all this comes in cycles. About once a year, or sometimes more often if my liver starts getting really sick, I have a surgical procedure called an ERCP. This procedure is done under general anesthesia, that uses endoscopes, like they use for colonoscopies, to take a closer look at the inside of my pancreas and all the ducts. During this procedure my doctor inserts a temporary stent into the strictured area, to re-stretch out the stricture. But obviously this is temporary and the ducts start to clamp down again.
After my ERCP, I normally develop pancreatitis. This is a complication that occurs in 40% of patients after an ERCP, but due to my already scarred ducts and repeated procedures, I’ve developed it every time. Pancreatitis is literally hell on earth. Imagine the worst pain you’ve ever had then multiply it times ten. And all the narcotics they pump through my veins barely touch the pain, they basically just sedate, numb and make me not care about the pain. I’m live in the drugged state that isn’t sleep because I hurt so bad that sleep is impossible but it isn’t awake because of all the chemicals. Normally I lose two weeks of my life to a drug-induced haze following my surgeries.
But then, I’m better again. Its more than better, I’m fabulous again. Its like one day I wake up and all the pain, the nausea, itching, fatigue is gone. I am incredibly healthy for about six months and then I begin my downward slide again. Its a horrible, never ending cycle. But it is my life, and Husband and I have adjusted to it.
My last surgery was in August of last year and I am pretty sick these days. The downward spiral towards my next surgery is getting shorter. I’ve postponed my surgery to about as far as I can go. Husband and I were hoping to try and push my next surgery out until August again in an attempt for me to be really healthy at the end of this year. We are going to Disney World in December for our five year anniversary, because we never were able to take a honeymoon because I needed to have an ERCP right after our wedding and then Husband was deployed to Afghanistan for a year about six months after our wedding. And then life got in the way as it normally does. I’m also going back to school full time and didn’t want to be sick my first few months, while trying to get back into school mode.
I figure this is a good stopping point for right now. The rest of the story will be in my next post. I just don’t want to overwhelm y’all with too much at once. Because I know it is a crazy story.