It’s finally starting to make sense

Hi all, I’m in the middle of a really intense workup and I needed to share this with people who might understand. I just got off the phone with my GI doctor and things are finally starting to make sense — but also feel really overwhelming.

My stool tests came back with a lot of blood and white blood cells, which she said is from scabs all throughout my colon — likely from serious inflammation. She made it very clear this isn’t IBS, this isn’t in my head — she told me plainly, “You’re sick.”

I also have pancreatic insufficiency (my elastase was really low), so I’m not absorbing nutrients properly. They are worried about wasting syndrome. They also mentioned possible pancreatitis and even that my liver might be involved — which I’ve read can all be connected to Crohn’s.

They’re rushing my colonoscopy, endoscopy, and CT of my pancreas, and checking my vitamin levels and nutritional deficiencies next. I have a swallowing study in August too. It sounds like my whole digestive system is affected.

The weirdest part? I’ve been telling people for years that something was wrong. And now that it’s all showing up on tests, it’s honestly terrifying — because it feels like it’s progressed more than I realized. Multiple organs. Malabsorption. Bleeding.

If you’ve dealt with multi-organ Crohn’s or pancreatic involvement, liver involvement, gastric paresis, how did you handle it? Did treatment help? Were you able to get stable again?