As a kid I had chronic constipation. In my early twenties I had my first colonoscopy (not quite as much fun as drinking legally – but welcome to adulthood); diagnosis: Irritable Bowel Syndrome with Constipation (IBSC). As a result, I became a vegetarian; considering my limited college diet, essentially I no longer got pepperoni on my pizza. I still farted relentlessly, but it smelled less like rotting meat and more like rotting peat. Skip ahead a decade to when I met my meatarian husband, who cooked, which I did not, at least not willingly. So, we wrestled, he mostly won. No pork, no game, no duck or lamb, but we would include chicken, turkey, and a bit of lean beef into the rotating menu. While I had to be selective about what I ate, as long as I could have a glass of wine or two with the meal, frankly, I made do.
My first son screamed coming out of the womb and didn’t stop screaming for weeks. Turns out he had a reason: major food intolerances and sensitivities. As parents of colicky infants do, I researched the hell out of this. I checked books, purchased numerous remedies, restricted my diet, and with every feeding, I had him in one arm and my phone in the other combing through forums, papers, advice columns, and so on. In 2005, research into gut bacteria was still nascent, but plenty of natural health folks were writing about it, and a lightbulb flickered over my head. Obviously, I had underperforming gut flora, which meant that my son started with an empty of impoverished gut. If Sandy had birthed him, Sandy of the iron stomach, the kid would have been eating hotdogs at 4 months and giggling. But sadly pregnancy and childbirth didn’t work that way then. So we had to wait until solids were in his diet, but after that I had him mainlining yogurt. By the time he was five he could keep up with his dad.
During this time, I started my own probiotic rich diet. Going into my 40th year, I had become the poster child for fermented and probiotic foods: sauerkraut, cottage cheese, yogurt, kombucha, tibicos, kimchee, apple cider vinegar. I still eat these foods religiously. I brew my own kombucha and tibicos to cut down on expenses. With a select set of supplements, I manage to keep my digestive system tuned.
Well, that is until the end of 2013 and beginning of 2014, when I kept getting gassier and gassier after eating things. Embarrassingly so. I was purchasing Gas-X at Costco. Then at the end of February the episodes had gone beyond embarassing and had grown ridiculously painful. Until then Pitocin induced childbirth had defined what 10 meant to me on the pain scale. But I was starting to rethink that. I ended up in the E.R. after a horrible episode, where, to my surprise, they found a gallbladder full of stones. Ah ha. Gallstones were my new 10. I scheduled surgery for a couple of weeks and went on a no-fat diet, no alcohol diet. Angel food cake and meringue cookies were my new go to survival food. I shed a few pounds I had been carrying since 2011 and my last pregnancy. I deliberated about having the cholecystectomy (gallbladder removal). Living without a gallbladder meant that I would likely always be on a lowfat diet. There are worse things in the world, certainly, but the prospect of permanently giving up ice cream and cheese was utterly devastating. But the doctors said it was my best option, and 10 days recovering after the surgery experiencing no more pain made the prospect bearable. Then I had a gallstone attack. My first thought was, what the hell? I don’t have a gallbladder. There may have been some swearing, followed by despairing wails, followed by desperate phone calls. The surgeon shrugged, and recommended I find a GI doc, which I did – but not because my insurance made it easy for me. Very nice fellow, who reviewed my case and shared that a tiny percentage of gallbladder removals fail to remove gallstones in the common bile duct. 
So a claustrophobic hour in the MRI later, we identified them: three little stones harmless on their own, but when they ganged up periodically they plugged the duct and held my digestive system hostage. Like little gut thugs. The GI guy scheduled a procedure: an endoscopic extraction of the stones, ECRP. A couple days later, on April Fool’s day 2014, I woke to a smiling GI doc reassuring me that he took my tiny thugs into custody. Give it a day or two, and you will be right as rain. Apparently, not immediately, because I went home in intense pain. Four hours later and multiple oxycodones later, I graduated to a new 10, possibly an 11. We called 911. Two heavenly paramedics treated me to fentanyl on my ride. A CT scan and some blood work later, and I was admitted to the hospital. So, in a fraction of ECRP cases, the pancreas gets pretty pissed off. Guess who won the award for most rare exceptions to the odds? You got it. I had pancreatitis.
Your pancreas does two major things: regulates blood sugar by producing insulin and produces and releases digestive enzymes through your common bile duct as your meal enters the small intestine. Pancreatitis is the inflammation of the pancreas, typically when the digestive enzymes get backed up or are released early and irritate and break down the pancreas: a kind of internal cannibalism. The sum of it: pancreatitis f*cking sucks. Using the pancreas causes excruciating pain. There’s no cure for pancreatitis. No medicine to fix it. You just have to give your pancreas a break and use medication to manage the pain. So? you ask, why does that suck so much? Think about it. How do you give an organ that does something automatically in response to eating and drinking a break? Well, you stop eating or drinking. In mild cases when your blood tests show no major elevation in your pancreatic and liver values, you can reduce to a liquid diet for a week, and resume eating a low fat diet. If your blood tests send off alarm bells, they admit you, put you on an IV, set you up with a PCI to parcel out your desperately needed dilaudid, and refuse to let you eat or drink anything for days. In my case, nine days with a couple of ice chips, followed by a final day of liquids before sending me home with Percocet and a strict diet.
Actually, one day in the middle they gave me a nasal feeding tube and shoved 1600 calories into my small intestine bypassing my stomach. It was horrifying. The tube triggered my gag reflex so much, that I could not stop dry heaving. I pleaded with the doctors to take it out, insisting that I could survive without the calories for a few more days. I grabbed the cellulite on my ass showing them I still had a few pounds to spare. They caved. Maybe the sight of my ass, maybe watching a 45 year old who hasn’t bathed in five days beg, gag, then beg some more triggered a sympathetic reaction. Whatever it was, they took it out, and I continued the fastest weight loss plan ever.
So, I get home, take digestive enzymes with low-fat selective meals and am supposed to get better. I could even add a glass of wine back in after a few months. Acute, single-incident pancreatitis. And that was the plan, but then July 2014 and May 2015, and now again in December 2015, I have had flare ups. The first two involved a couple days of a liquid and yogurt diet, extra enzymes and then back to normal. Now I’ve finished my 5th day of jello, yogurt, broth, apple juice, coconut water, tea, and apple sauce. My initial blood tests on Friday showed my lipase and amylase values within the normal range but with elevated liver values. I had hoped that meant it was a little episode, but here I am. I still intermittently have diarrhea, nausea, chest tightness and upper abdominal gnawing pain. After each tiny meal, I vow to never, ever eat again. The pain is deep and persistent and makes it difficult to focus on or engage in anything. Tramadol just scrapes off the sharpest edges, giving me enough time after digestion is complete before my stomach hurts wanting more food, to write this post or catch up on email.
I admit to being petrified that my pancreas is in real trouble. What if I never get to drink a glass of wine again? What if I have to curtail my already highly refined diet even further? What if I have to live with this pain for the rest of my life? Will I still be able to fake it and smile and exchange pleasantries with people or will I turn into a cantankerous middle aged woman who finds little pleasure in life?
They design the pain scale to be universal tool for the assessment of pain, but gut-wrenching pain can be fear or sadness or exhaustion or despair. Either they should change the name to Universal Physical Pain Assessment Tool, or I need some other faces and options.