Does your doctor really matter?

I didn't realise things were that bad for you.

It absolutely sucks when the meds don't work like they should and make you even worse. I've had countless bad reactions to meds; and on the occasions where I didn't have an immediate reaction, my Crohn's would flare up a few weeks or months after starting the drug instead - literally the exact opposite of what it was meant to do.

The only med that ever worked for me, albeit temporarily, was Pred. And the fact that it didn't even seem to work for you initially worries me a bit. There can only be two reasons for that: 1) you are steroid-resistant or 2) the source of your pain is not inflammatory, which could indicate a fibrotic sticture, that is, a narrowing in your bowel that is formed from fibrotic scar tissue rather than inflammation.

If you do have fibrotic scar tissue, no current meds can treat that, not even Pred or Remicade. Surgery is usually indicated.

I saw what you said about anaesthesia, but surgery could be the solution for you. A lot of people get relief for years that way. I understand the desire to give up on your meds, to give up on doctors. But your Crohn's isn't going to go anywhere. It's going to continue festering away, causing more damage, until one day you need emergency surgery.

If you have never spoken to a colorectal surgeon, now sounds like a good time to start. It doesn't commit you to having surgery; you just get to find out what your surgical options are.

Just called Charlotte Gastroenterology to find out about the Dr. John Hanson someone gave me. First would only be a 30 minute "Introduction visit" (would not prescribe during visit was told) and nothing open for 1-2 months out. They can not give an idea of when a real follow-up appointment would be scheduled after that.

Hi web,

Question: would your inexperienced GI Dr work in conjunction with the Mayo Dr? My sons GI did with a GI Dr from Cleveland Clinic.
If your GI is hesitant to prescribe Humira due to of lack of experience ... It's a red flag... Run now fast. You need another Dr. Make some other appointments even if they are 3 months out. Also see about getting on a cancellation list for several other GIs or go back to a Mayo GI to get the Humira started. its hard but you need to be your own advocate. no one else will do it. Good luck

Sorry your suffering