Hello Everyone!
I'm new to this forum and just wanted to take a moment to introduce myself! I was newly diagnosed this past June, but I have been stalking this forum for the past 3 months after I started noticing signs and symptoms that aligned with this condition. My initial diagnosis of ulcerative proctitis was classified as mild at the time of my colonoscopy based on imaging, biopsies, and symptomatology. Because my condition was ultimately unmasked by a bad case of food poisoning (oysters on the half shell - feel free to cringe), all other parasitic/ova/girardia/cdiff testing was ruled out as well.
Despite implementing 5 ASA enemas 1-2 times a day at a dose of 4 gm each, and eating a very bland diet, my condition advanced to severe ulcerative pancolitis just a month after. I was JUST discharged from the hospital this past Sunday after a ten day stay! Cdiff, and all stool studies were repeated and found to be negative. There was an attempt to transition me from IV to PO steroids that set me back 2-3 days during my stay. Thankfully, I have been symptom free on oral prednisone but I'm on edge....
The team taking care of me is a specialized group of IBD gastroenterologists who have done amazing things, but what I find concerning is how they have classified my case as "peculiar," because of how quickly and aggressively my condition advanced. They said it isn't common... Initially, I was going to the restroom 2-4 times a day/bleeding with q BM/had tenesmus/mucous etc. Once I started the 5ASA enemas, I noticed a difference just within those first few days and did great for about
two weeks. Things took a turn for the worse on July 23rd, and i started using the restroom 12-16x a day, I was unable to eat, and experienced pain that literally made me collapse at home. I lost around 12 pounds...
I guess what I'm trying to spit out is, has anyone else experienced such rapid progression from something so distal like proctitis to full blown pancolitis in such a short amount of time? I'm trying to stay positive, hopeful, and educated with all the current research out there; however, I can't help but feel concerned about
what they said. I'm getting married this coming October and I just want to be OK...talk about
timing, huh? I have my second colonoscopy scheduled this Thursday, and from there we are going to decide treatment options. Remicade being the big one...
Sorry, I'll shut up soon...I also just want to say how thankful I am for the wealth of knowledge my family and I have gained from everyone here. Everyone is so prompt to respond to one another, eager to help/brainstorm, and most importantly, provide such positive and encouraging words. It's truly what I and everyone going through this needs right now.
