After a long weekend in the ER, a real room, and now a room with a glass door/curtain in the transition unit I was still there waiting for relief and answers.
A brief background on my Crohns… I was diagnosed in 2002 and over the past 19 years have had years of flares, years of remissions, multiple initially successful and then failed medications, a bowel resection in 2011, a clinical trial, and many more things I can’t remember. For the first 17+ years my Crohn’s lived only in my small intestine. Then towards the middle of 2020 it went like fire to my colon. We are not sure why that happened. It could be easy to blame the pandemic. I think it has to do with stopping one of my medications that was working for my gut, but was causing an insane amount of squamous cell skin cancers. I had to have several surgeries including 2 on my face and ear. Dr. G and I chose to stop it because enough was enough getting my face cut apart. I’m not sure if that’s the entire answer. Dr. G thinks it’s more than that, but it’s something I think about daily.
Anyhow, back to now Monday evening. Dr. G came by after his day doing procedures. That morning I had a sigmoidoscopy by another GI and Dr. G wanted to discuss those results. They were awful. I had severe ulcerations and inflammation. Much worse than a scope I had only about 6 weeks prior. They did a biopsy and the hope that it was some sort of raging viral infection. The biopsy results would take a day or two, but Dr. G warned is that it was unlikely to be an infection.
He then presented us on the possible next steps. Two of them involved some medications that had some major safety concerns. I didn’t have a lot of time and the clinical trial drug I was on was still in my system. Nobody knew the risks of combining an unapproved drug that my body was still using with other very strong immunosuppressive drugs. The third and even worse option to me at the time was an Ileostomy. Google it if you are unfamiliar, but basically it is creating a hole in my abdomen where they pull out my small intestine, poke a hole in it, and attach a bag where the contents of my small intestine empty into. This gives my colon a rest because nearly nothing will go to it anymore. Wearing a bag means emptying it myself multiple times a day. THIS NEWS WAS DEVASTATING.
He left that night and I immediately broke down in tears. No option was a good one. I felt completely overwhelmed and scared.