Ask Lemmy

Fucking Crohn's Disease sucks. All of my "adventures" with it have been painful, but the one that takes the cake:

A couple of years ago, my GI wanted me to do a pill endoscopy test, which is where they basically have you swallow a pill that has a camera embedded in it, and it takes pictures while it traverses your insides. You're supposed to naturally "pass" it like anything else you eat, but in my case I did not, and it got stuck. My GI did not believe me, and it just kept getting worse and worse. To put a timeframe on things, this happened in early February of that year.

I had ER trip after ER trip throughout that year, they determined that it wasn't going to pass on its own and needed to be surgically removed, but since it was not "life threatening" they couldn't just wheel me into an OR immediately and have it done, it had to be scheduled. Took forever to find a surgeon to schedule me under. One of the times that I was in the hospital due to this, the doctor on my "care" team wanted me to do what she called a "supreme bowel cleanse" to see if that would dislodge it. I was hesitant to do it, but I was pretty much willing to do anything at that point to end this nightmare, and only because she promised me that if it didn't work, they'd take me into surgery and do it the old fashioned way. That ordeal was terrible, I've had Crohn's since before I was a teenager, I'm very used to doing colonoscopy prep - this was far worse than that, the pain was unbearable and the amount of bowel cleanse that they gave me must've been right at the border of their ethical limits (or at least, I imagine that has to be a thing, right?) and plot twist she did not hold up her end of the bargain when the pill still did not pass, instead she gave me a few days worth of pain meds and discharged me the next day.

My condition continued to get worse and worse, yet my operation wasn't scheduled till early July. The hospital that the surgeon worked for agreed to pre-admit me into their care 2 months in advanced because it got to the point where I could barely even hold down regular water and I had to be put on IV nutrition with a PICC line and all.

Fast forward to the operation day, they ended up having to do two surgeries in one go, the first being to remove the pill, and the second was to try to fix the damage that had been revealed on the camera. The moment I woke up from the operation I was screaming in pain, and begging them to put me back under (which they could not do). They kept giving me pain meds and I'd end up passing out eventually from the pain, wake back up, and the whole ordeal would start again. Eventually they put me on one of those self-administered pain med pumps where I could click a button every so often and it would give me some pain medication through my IV.

I didn't end up going home until the very beginning of September (first week I believe), and I had arrived there sometime in the middle of May. I will never do one of those pill endoscopy tests ever again. I also switched GIs since my current one at that time had refused to listen to me when I told her something was wrong at the beginning of the "experience".