It's been a long time since I posted. I was really ironic that when I decided to post again, the first post I read was yours.
I was diagnosed with Chrohn's at the age of 19, but know that I had suffered long before that. I'm am now 64 years old.
First of all I'm surprised that the drs and nurses at the hospital did not know that experiencing a high fever and/ or chills right after a colonoscopy are symptoms that require a call to your dr. asap. I just had a colonoscopy this morning and on the post GI endoscopy instruction sheet it says to report these symptoms (as well as some others) to you dr asap. It's amazing how uninformed some hospital professionals are.
As far as surgery and recurrence of CD: I have had 3 surgeries and have had a recurrence each time. It's 2 years since my last one. My colosnoscopy shows active disease in the same area (ileum). I don't think that each time the disease gets worse as you were told. This disease is not a one-size-fits-all. Some have recurrence after surgery and some are not so lucky. The only reason I agreed to my last surgery was that I needed to have my gallbladder removed and surgeon said he could remove the extremely narrowed bowel at the same time. Before then, I was only able to eat a very low-residue diet, and was extremely afraid of another blockage. I understand totally when you say you are afraid to eat. Food became a very scary issue for me too.
I know that the meds for this disease have some scary side effects, but I chose to take them for a better quality of life.
I was on Humira once every other week, and now will be taking the shot every week. Medication is all trial and error. You have to find what works for you.
So sorry you are going through this. This site is great for "talking" to people who really understand what you're going through. Hang in there! Hope you find a dr that helps. Sending you hugs. Potty Pooper