Approximately three years ago I was diagnosed with Crohn’s disease after a lifetime of digestive issues. Aside from two other flare ups, it was quite manageable until this year.
Since January I have been on disability due to Crohn’s. It wasn’t until early October that my sed rate finally fell below 90. My spirits were up and I was feeling closer and closer to getting back to work and a normal life.
However, about three weeks ago my symptoms started to return and are now back with full force. With severe joint and muscle pain, erythema nodosum all over me, and a sed rate of 118, I have definitely had the wind taken out of my sails.
In the middle of this relapse, my disability insurance provider sent me paperwork for proof of continued disability. I brought this paperwork to my doctor on Oct. 17th, to be filled out and faxed to the insurance company.
At my visit with my doc, he continued to push Remicade and Humira. I told him that I was apprehensive to try either as I know someone who passed, due to lymphoma, after being on Remicaid. The thought of Humira didn’t (and still doesn’t) really appeal to me either. He told me he was going to put the paperwork through for Humira anyway since I already had a negative PPD (is that the test for tuberculosis?) test earlier this year.
I told him “fine” but I still wanted to explore my options, which I did, and now I have an appt. with a naturopath on Tuesday. I told him that I just wanted to work with him and the Naturopath to exhaust all my options before I try the Humira. I am well aware that people with Crohn’s are pre-disposed to lymphoma anyway but I am too afraid that this drug might increase my chances – just a weird gut feeling (like I need another one ;)
His response was, “Well I’m not sending in the disability paperwork if you are no longer under my care”. WHAT??!!! Then he yelled at me and said that he thought I was in trouble. Yes, I do understand that but I am not going to be backed into a corner of Humira. Not until I truly feel I have no other choice. This is ridiculous!!! I gave him this paperwork two weeks ago. In the meanwhile, I have had bloodwork twice and have been put back on Cipro and Flagyl by HIS prescription!! If I wound up in the hospital today, I would list him as my doctor. I am obviously still under his care, like it or not. Besides that, HE is the one who has not sent in the paperwork after two weeks. I only told him about the Naturopath yesterday. What was he waiting for??
I cannot believe this.
I am sorry for the lengthy post but I had to vent my frustration and thought this might be a good opportunity to hear if anyone else had such frustration with a doc.
Thank you, fellow Crohnies and I hope everyone is feeling better every day.
Thank you all, so much, for your replies. I never thought of calling the insurance company and informing them of this situation. I have to admit that I was feeling sort of helpless and backed into a corner. I understand what Erica is saying and I appreciate that he wants to see me treated. I am not counting Humira completely out, I just want to exhaust my other options and I have not yet explored the naturopath...path. I don't see why integration of something else, or even a second opinion, has caused such a problem with him. I had hoped that he would be more open-minded. It's a bit disappointing.
By the way, I thought I had put this in my 'signature' but I can't seem to get that to work - Prednisone, Asacol, Pentasa, Enticort, Cipro and Flagyl, LDN.
Oops! There it is. Didn't work the first time!
Darn tootin', Navy! I have thought the same thing! I know doctors work hard and I do appreciate it. I just wish all that work wouldn't close their minds so much. Not every doctor, of course, but most.