Last Thursday, I had my gallbladder out in a routine, out-patient procedure. From the off, things didn’t go well.

First, the nurse slid only about half of the needle into my hand for my IV. She pulled out the sharp and then stuffed the rest of the tiny flexible tube in, piercing the wall of my vein. Besides the stuffing process hurting, that wasn’t evident, until I went into the operating room and they started to push the anesthetic. My hand felt like it swelled up like a balloon – it was really painful. The anesthesiologist noticed something was up because I didn’t fall asleep. The anesthesiologist nurse noticed my hand, and they hurriedly pulled out the IV and pulled down my arm from the elbow repeatedly and I felt liquid all over my hand. My hand stayed swollen for days, but it was really the least of my worries.

Their second stick, in my forearm, stayed in the vein and they pushed the second round of anesthesia. It worked a treat. I woke up a few hours later, pretty groggy and a little bit something more than sore. Over the next several hours, the pain built and built. I was screaming and panting and it was awful. My nurse went to lunch, so another nurse came to check on me and was shocked that my nurse hadn’t administered any pain relief “hours ago.” The pain relief didn’t really work, and I stayed in pain for hours until I couldn’t stay awake any longer. They sent me home, since it was an outpatient facility (attached to the hospital). They said it was normal for the CO2 reabsorption to be “uncomfortable.”

The next day, Friday, I tried a sip of smoothie and the pain built up again to excruciating levels. I was out of my mind. My husband took me to the ER and I was stashed in Hallway G on a stretcher. For about 20 hours. And about half of that I didn’t have a doctor assigned, so I didn’t have anyone prescribing any kind of medication. It was obviously overloaded when I got there – even I could see that. I had Bob explain to people what had happened, but eventually he had to go – him sleeping in the ER with me wouldn’t do him any good and he couldn’t do anything for me. The pain would build to excruciating levels – 10 the worst I’ve ever felt – and stay there for a few hours, then let up a bit. I will try to describe it to you. My gut on my upper left side would seize up – beyond tolerance. You know how sometimes your foot cramps and your toes start heading off in different directions and it just hurts? That was happening to the top quadrant of my whole abdomen. I think my diaphragm was getting caught up in it because I couldn’t breathe. I could not breathe. I could draw in about a fifth of a breath – there was a concrete wall that stopped any further lung expansion. You can’t scream when you can’t breathe! The ER doc who had my case rolled off and had me admitted to the hospital, but there were no beds available, so I laid writhing in my own sweat on the stretcher another 10 or 12 hours until there was space for me, with no doctor and no nurse. Random people came by to ask me about why I was there. One turned out to be the GI doc, who turns up again later and we like him. Another was a woman who just flew through and applied cold wet washcloths to my forehead and my neck. She was an angel. She didn’t ask me questions, she just saw pain and how hard I was sweating from it, and she did what she could. I am not ashamed to say that it was a kindness that made me dry cry then (and wet cry now) to think about. I had my blood taken several times.

There were other people in the ER and I can tell you it was hellish. Some people were not in excruciating pain and I hated them. I hated them so much. They could laugh and talk. Their whole life wasn’t pain. Some people were suffering from mental delusions and were yelling to nurses and talking to people who weren’t there. My stretcher got hit a lot by other people wheeling things. The lights stayed on the whole time. I did have an IV in the crook of my elbow, and they kept me hydrated. Bob came back to me and it felt better to have him there, even though the pain was the same.

The GI doc came back and told me that he thought he knew what was wrong, and that he could have his team assemble the next day for another surgery. I sobbed – again, with no tears – when he said I’d be in pain another day. The lady with the washcloths came back and leaned down close to me and said, “honey we are taking you to get an MRI now. The MRI will be able to show us what we need to do next.” She wheeled me to the MRI, helped me pee first (the darkest pee you ever did see), and loaded me in. I can’t remember how long it took, but I did remember I had to keep my eyes shut. She also had me hold my breath 3 times, which I couldn’t really do. I just didn’t have any to hold. The angel lady with the washcloths and the MRI said she’d make sure I could go straight to my room instead of the ER, and she somehow made that happen. So I went to a room, which I shared with a roommate. This must have been Saturday afternoon but time stop having meaning. My roommate didn’t believe her call button worked, so she just yelled constantly for nurses. She also couldn’t remember things, like that she was in a hospital and the hospital was in Olean, so she had her own problems to deal with. I found out later that 5 nurses called in that day, so the weekend was severely understaffed. I’d request pain medication, and they would be able to bring it to me 90 minutes later. At least I would still be in pain at that point. They kept giving me morphine through my IV. Here’s the thing. Morphine sucks. It made my limbs feel stuffed with cotton and extremely heavy. I could sleep. But it didn’t take away the pain. I was also getting antibiotics pushed constantly. I had to get Heparin shots in my belly (and once in my arm) so I wouldn’t clot. I got my blood taken several more times. My liver levels were in the hundreds, but should have been sub-10. At one point the doctor said my liver levels were down to 500 something and I said “is that good?” and he said “oh, oh no, but it’s going in the right direction.”

On Sunday morning, the GI doctor returned and said he could assemble his team that morning to see me. I wept (no tears). They had to have me get on a stretcher, and they wheeled me to an operating room. They administered the anesthesia very successfully and I was never so happy to be unconscious. When I woke up, the part of my belly that had been seized up had relaxed. I felt sore, like I’d had surgery recently. I was encouraged to have clear liquids and things like jello. It was uncomfortable, the feeling of eating still was pretty painful, but I had a little. The GI doc determined I had Sphincter of Oddi Dysfunction; here’s a key highlight:

In 1 type of SOD, the sphincter of Oddi goes into spasm. It clamps shut and can’t relax. Other times it may be narrowed from past inflammation. Your digestive juices back up into your pancreas and into the bile ducts of your liver. This causes intense belly pain.

The main symptom of SOD is severe stomach pain that comes and goes. The symptoms can feel similar to a gallbladder attack. You may have pain in your upper belly that seems to move, or spread, into your right shoulder. You may also have chest pain that feels like a heart attack. This pain is often very similar to gallbladder pain. But people still have this pain after their gallbladder is removed.

University of Rochester

The GI doctor determined I needed a sphincterotomy (of the gall duct, which is part of the pancreatic duct as well – they combine at the end) and did this via ERCP. I was sedated again, rolled onto my stomach, and he went down my throat with a scope and opened up the duct opening. What was likely happening was bile was backing up the duct into my liver and pancreas, casing the intense pain.

I had to stay at the hospital another day so they could watch me. Ultimately, I went home still not eating food (it hurt too much), but able to tolerate liquids. From the time of the second procedure on, they did not give me any pain medication, and I haven’t taken any at home either.

I went home Monday afternoon, not really sure what day or time it was, and collapsed in bed for hours. I was having a painful attack and was terrified of ending up back in the hospital. It did pass, and I spent the next few days in bed. Today I felt well enough to put on some very loose fitting clothes and take a short walk in the smokey air. I’m probably going to need a nap soon, this has been really tiring.

Today I was able to tolerate solid food for the first time – I haven’t properly eaten since a week ago, before the gallbladder surgery and I’ve lost 6 pounds. I think my body is a wily child-bearing body (aka, an idiot) and has been very quick to retain everything it can. So far today, I’ve eaten two applesauce cups, two pieces of toast, and some cheerios. Pretty good.

I’ve also been having some terrible nightmares. I dreamt I killed someone (it was a man who was going to rape me, but still, awful), and that I was stuck in an interdimensional toy store which sounds cool, but was really terrifying, because I had to keep a bunch of kids together and alive and it wasn’t going well. I had another that was really, really dark, that I can’t really remember now, which I think is for the best. Last night, my dreams were a bit better, but also had a central theme around my friend Susan who I saw the week before my surgery. My friend Josh said that his wife recommended journaling about the trauma because that way it gets out of your head, so that’s probably what I guess I’ll do, and this is part of that.

Now I am really wiped, and I still have the looming threat of the hospital bill to come. I think I better have a lie down.