It has been a gnarly few months, y’all. If you read my last post, you’ll see all my excitement about running and health and ra ra ra sparkles and confetti. And stretching, of course. Unfortunately, what happened next involved zero running, crappy health, and confetti that is still packed away, waiting to be thrown in victory. If you’d like the full story, read on. If not, scroll down for the short version, in bold.
In mid-February, I started to have severe abdominal pain. I was diagnosed with a kidney infection and given a round of antibiotics. I also had my IUD removed, which made a huge difference because that thing was the worst. When I was feeling better, iWill and I celebrated with a gigantic, decidedly non-vegan but crazy delicious bacon cheeseburger and fries. Thirty minutes after finishing my dinner, I had one of the worst stomachaches of my life.
The next day (Monday), I went back to my doctor, who referred me to a GI specialist. After mashing around on my belly, we realized the pain was localized in the right side of my upper abdomen. When I had the bad stomachache, the pain ballooned through my chest and went into my back right shoulder blade. The GI doc ordered a CT scan that day and scheduled an endoscopy/colonoscopy for the following week.
The CT looked fine, but within 3 days of seeing the GI doc, I couldn’t eat anything without severe pain. The only way I could get any food into my body was by taking a tiny bite of a Saltine cracker, waiting 20 minutes, and then taking another bite. Repeat for an hour an a half until the cracker was gone. After two days of this, iWill and I headed to the emergency room. This was at the beginning of March. I was admitted to the hospital and spent the weekend undergoing a series of tests (all the ‘scopies, plus a HIDA scan that tests gallbladder function and more CT scans).
Every single test and blood work came back normal/negative. One doctor diagnosed me with IBS and another diagnosed me with inflammation of the stomach, caused by the kidney infection. These diagnoses came within 10 minutes of each other. Essentially, nobody knew what was happening, so they just told me to wait it out. I was released on a Tuesday.
The following night, the pain was so severe we were back in the ER. I was given pain meds, more tests, and again, no answers.
I went back to the GI doctor, who said, “Look. All your tests are normal. Clearly there is something wrong but at this point, we can’t know what it is. You could have cancer in your pancreas the size of a pea and we wouldn’t know for another 18 months. Your pain is real but there’s nothing we can do.” He sent me to a pain management specialist.
At this point, I started looking for a new GI doctor. Weeks went by, with incredible pain. I was tethered to the couch, unable to work. I had lost 20 pounds in 6 weeks and was miserable and weak. Finally, I got in with a new GI doctor, who said it might be my gallbladder and it was worth visiting a surgeon. On April 1st, we visited the surgeon, Dr. Reimel, who agreed and scheduled the surgery for the gallbladder removal for the 9th.
Surgery went well and my gallbladder showed signs of scarring and disease, consistent with at least 6 weeks of the pain I’d been having. The surgeon also noticed my bile duct was oddly tapered. The bile duct is usually about the size of a finger. Mine started that way, but tapered to be the size of string. She brought in a GI specialist to look at the pictures they took during surgery.
The GI specialist, Dr. Brandabur, told us that the gallbladder surgery might not cure all the pain, due to my strange bile duct. The plan was to go home from the hospital, recover for a few days, see if I could eat normally. If I could, great. Done. If not, I needed one more test, an ERCP, during which he might put in a stent to help my bile duct drain properly. An ERCP carries a lot of risk, so we wanted to avoid it if at all possible.
Unfortunately, the pain didn’t go away. I’d try to eat and then boom, 30 minutes later the pain would come back. We scheduled the ERCP for Monday, April 15th. At this point, I was really scared because of the risks. Pancreatitis is a big one, and usually includes a 2-3 day stay in the hospital with IV antibiotics. I hate hospitals and really didn’t want that to happen.
Before the procedure, Dr. Brandabur came to the prep room and walked through the entire thing. He drew pictures, explained everything, and said it should only take about 30-45 minutes. I would be under anesthesia and wouldn’t remember anything. We all hoped this would be the end of the stomach issues.
The next thing I knew, I woke up in the ICU, choking because I was on a ventilator. My arms were in restraints and I had no idea what was going on. After about an hour or two, once the doctors knew I would breathe on my own, they removed the breathing tube. My mother had flown in for the gallbladder surgery and was still in town, so she was there with Will and they both explained what had happened.
Simply put, my anatomy is weird and my duodenum was perforated by the scope. This is apparently extremely serious and dangerous. Dr. Brandabur told me later that he turned the scope and was suddenly staring into nothingness, which is a very scary thing. I was moved to the ICU, put on all sorts of antibiotics, and knocked out on the ventilator to try and let my body work fast to heal and keep me from going into sepsis.
This complication happens to roughly 0.6% of people who undergo the ERCP. It is awful, y’all. I had an NG tube for over a week, draining the bile from my stomach out through my nose. It was as unpleasant as it sounds. I had two drains put in my body, one on the side of my pelvis and one in my lower back, both to drain the bile and other fluids from the perforation. They put in a PICC line, so they could feed me through tubes in my shoulder.
And this is all just from the complication. The main issue, the weird anatomy, the pain that sent me to the hospital, has not been solved.
Here’s the plan: they worked hard to get me stronger in the hospital, and my body cooperated. I got to come home last night, finally. I still have one drain in my back and I’m still eating through a tube in my shoulder and getting antibiotic infusions every day. Dr. Brandabur was able to put in a stent, but it isn’t a permanent fix. Picture a cocktail stirrer plugging a dam. It won’t hold for very long. The goal is for me to heal, get as strong as possible, for the next 3-4 weeks, or as long as the stent holds. Then, we’ll head back to the hospital for a larger surgery. At this point, we have no idea what they will do when they cut me open. They don’t know and won’t until they get a good look at what’s happening inside.
It’s scary but I trust my doctors completely. Dr. Reimel (my surgeon) saw me every single day during my hospitalization and my case has been discussed with every single surgeon on her team. Apparently my weird anatomy is very exciting for them. As we get closer to surgery, we might have more ideas about what it will entail. For now, I just know it will be big and the recovery will be long.
This has been very difficult but I’m so lucky. I have an amazing support system. Will has been incredible and has learned how to do all of the things involved with my IVs, drain, and “food”. My mother is still here and will stay as long as it takes to get me settled into a new routine at home. It takes 20 hours for the TPN (my food) to infuse, so I’ll be carrying a backpack with my food inside at all times, even when I leave the house. My sister keeps coming down from Olympia and took many nights in the hospital with me so my mother and Will could get rest. I wasn’t alone at all, during the entire 11 day hospital stay.
I don’t even have the words to explain how much better I feel just by being home again. Nothing about this has been easy, but it would have been so much harder without everyone in my life, visiting, checking in, sending notes and messages, and just showing me that I’m loved and cared for. I’m incredibly fortunate.
I’ll update again as soon as we know more about the next surgery. I hope it’s the final surgery and the last obstacle in my way before I’m on the path to healing.
Thank you for all your good thoughts throughout this experience. I cannot even tell you how much they are carrying me through. Love you all.