Reading everyone’s stories has helped me so much. Here’s mine:
I have had ‘digestive issues’ since being hospitalized while on vacation in Iceland in 2013. I had diarrhea, abdominal spasms, thrush and iritis. Crohn’s was suspected, but follow up tests didn’t bear it out. I had less serious flare-ups thereafter which seemed to be caused by food allergies. After a short course of prednisone, I would be fine for awhile. Eosinophilic colitis was suspected or some sort of indeterminate IBD. After I had an impacted kidney stone in 2019, something different started. The spasms were under my right rib—not painful but uncomfortable at times. I had dry face flushing, bloating and loose stools. All through 2020 and 2021, I was on and off prednisone. A CT scan in January 2021 noted an area of thickening in my right transverse colon. My gastroenterologist said this was the same area with a lot of pseudopolyps noted on a previous CT.
Through all this, I continue to walk 4 miles a day, workout twice a week with a trainer, and eat a whole foods diet. I try all sorts of supplements, restriction diets, acupuncture, and hypnosis.
By July 2021, I was in bad shape. I was still on prednisone. I was in tremendous pain; my legs were swelling up, I developed thrush. I was nauseous. My gastroenterologist thought I might have an infection. We did bloodwork, urine and stool testing. The only thing that came back was a CRP of 208. This being Covid times, it took a few weeks to get a CT. I saw the report and it mentioned the spot where I had the pseudopolyps and previously noted thickening; I thought nothing new had turned up, but the covering gastroenterologist called me and said to go to the ER.
I remember being told I had some sort of blockage in my colon; they were going to try and put a stent in to open it up. I developed a DVT and had to have an IVC filter put in. They told me I needed surgery. I was in so much pain I couldn’t advocate for myself.
And then, I don’t remember anything. I wake up and have no idea what has happened. I’m trying to talk, but no one can hear me. PAIN. They don’t want to give me pain medication because it can affect my breathing. I finally get some fentanyl. My arms are huge and heavy like wet sand. There are purple dots all over my hands. My skin is yellow and waxy looking. Later someone comes by and looks in my throat. He tells me to hold still and he pulls something that looks like a PVC connector out of my throat. Then someone comes by and says it’s time to get me up and into a chair. I try to get up. Then I see my legs, they are also huge. The therapist tries to help me up but my legs give out—it will be two months before I walk again on my own, but I don’t know this yet. The nurse asks me why I’m in the hospital and I tell her it’s because I was infected by a biological weapon the Taliban released.
It gets worse. I thought the nurses were part of an environmental group that wanted to kill people over fifty because they use up too many resources. I had to convince her not to kill me.
I moved to a step down unit a few days later. I had a feeding tube; I needed insulin and Lasix and Heparin. I was so itchy and in so much pain. Tylenol did not help at all. Finally things started to go my way: I passed the swallow test, my edema was resolving, my staples were taken out, I stopped needing insulin, my pulmonary emboli resolved, I could walk a few steps with a walker if someone got me to a standing position. I was learning to change this surgery drain on my stomach—I didn’t know it was a colostomy I was given while I was in septic shock due to an anastomotic leak —I had never heard of or seen any kind of ostomy before.
I came home in a wheelchair almost a month after I went to the ER. My family set up one of the kid’s old bed downstairs with the commode and walker we still had from my mother-in-law. I was so nauseous all I wanted was orange juice. I was in pain everywhere, I couldn’t walk, I would break out in rashes, sweats, I stuttered, my hair was falling out, I cried all the time; I wished I hadn’t made it. But very slowly, I got better. I walked a little more, ate a little better. I’m now almost a year out, and except for more hearing loss, some memory problems and stiffness in my hands, I have recovered and back to walking four miles a day.
I had heard of sepsis but I was never prone to infections and never knew anyone with sepsis. I requested all 7,000 pages of my hospital records. The days when I was in shock are difficult to read: intubation, sedation, blood transfusions, pressers, antibiotics, echocardiogram, and almost unbelievably, a second surgery while septic. My husband said I was in a massive amount of pain the two days between my colon resection surgery and the onset of sepsis. On the second day, he said I began having trouble breathing and when he got the nurse, they sprang into action and whisked me straight to the ICU. After my colostomy surgery while I was on life support, I took a turn for the worst and wasn’t expected to make it. I never imagined you could even get a blockage in your colon or that abdominal surgery could wreak such havoc. I still feel scared, scared that I will get sepsis again and won’t recover as well.