7 days after my j tube placement I was sent into the ED for lower abdominal pain. It started around my belly button, and went down to my pelvis.

After waiting..and waiting (12 hours), I was finally seen. The on call team was the same as many of my visits for my coiled gj tubes, so they knew my overall situation. Any full-time patients know how it feels to know more about yourself than doctors. It’s a scary feeling to have so much control. Anyways- 1 week post op for my jejunostomy tube placement, I went in with lower abdominal pain, and the team did a full ovarian work up. OVARIAN. Said everything was fine and sent me home. Fast forward 4 days, I went to bed with a small red ring around my new J tube, and woke up leaking puss.

I was sent into the ER again, this time I got taken back in less than 5 minutes. I was in the bay waiting for a bed for about 5 hours, and it seemed that every minute the pain got worse and the redness spread. By that night I was in a bed upstairs with a J tube so swollen it was mesmerizing. I couldn’t walk with the pain. And yellow puss was spewing out from underneath my bumper. I’ll never forget that feeling or that night. So scared of the pain, everyone wanted to poke me, I’d never even seen puss before, and to top it all off- those weenies in the ED were wrong last week. I had a brewing infection, and because they weren’t thorough enough, it’s now turned into cellulitis.

My admission was 2 weeks. 15 days. It took 4 days to get on the right antibiotics, and every wrong one we tried was a day it just spread and got worse. It started spreading around to my back, reaching my spine. I was reacting to everything- weird rashes, hives, vomiting, so dizzy I could hardly see. My mom stayed with me the whole time. Visitors are limited to only 1 per day right now because of COVID so she came everyday. The infection wasn’t reacting to most antibiotics because it was a resistant bacteria. My infection was a Pseudomonas bacteria. Pseudomonas is the germ they find on hospital mops. Hospital floors. It’s a strong, dangerous, and gross gross gross germ. A case was filed, because the only explanation for this is that my surgeon wasn’t performing a completely sterile procedure- my tube must have dropped on the ground or something like that. Insane.

Eventually we got on an antibiotic that helped stop the spread, but the swelling had already started folding over my bumper and burying it in my flesh. Although it was going down, now the bumper was buried and had to be pulled out. It was discussed for days until they finally said I had no choice. With a crappy anesthesia team who didn’t want to put me under, I laid there awake while they yanked on my new and currently infected J tube to loosen the bumper and pull it away from my skin. I screamed and screamed as this horrible resident kept lamely telling me “you’re okay” when, clearly, I was not. That day sucked. Take note- lidocaine jelly does nothing and is not effective on the abdomen.

They kept me until the puss leaking stopped and the redness started to go down, and I was sent home on oral antibiotics that made everything- water, my urine, my own saliva, smell a smell that made me vomit. After being home for 1 day, problems like pain and spewing of bile from my J tube site persisted, and I ended up being readmitted to check for an abscess under my bumper. We didn’t find an abscess, so I was put on a second antibiotic to help with some skin problems I’m having. I’m home now- finally. Incredibly uncomfortable, with my J tube feeling like it just came out of the oven- just burning my stoma and the skin around it. I hope it doesn’t feel like this forever. I think this infection and the swelling burying my bumper may have wrecked this stoma and created a lot of long term damage. I guess we’ll see. Just happy to be home now. Praise the Lord I made it out- I thought it was going to kill me. This was one for the books.