Can someone please explain to me how a person sitting at a desk can make a decision that can completely alter someone’s life without even knowing anything about them? Let me explain, nearly 6 years ago my husband was diagnosed with Ulcerative Colitis. However, his case has always been difficult and they can’t say for sure it is that or Crohn’s. The two diseases are so similar that making a diagnosis can be rather difficult. Apparently Crohn’s can affect everything from your esophagus to your colon and U.C. is just your colon/intestines. Well my husband only exhibits symptoms in the intestines and not the upper GI so diagnosing specifically Crohns is difficult. At least that is what we have been told.
The first 3 years of his disease were horrible, constant flares which include urgent trips to the bathroom, bloody stools, and horrible pain. The first GI doctor we saw was very nice but after so long he referred us to a different GI at Wash U, which is supposed to be amazing. While I have no doubt it is a wonderful medical facility, unfortunately we did not have the best of luck there. The first visit we saw the doctor but everytime after we only saw the nurse.
Unhappy with this we searched for a new doctor. This doctor acted like we were stupid for wanting a second opinion. He told us we need to accept this was his life now, and nothing is gonna change, he won’t get better and we can look on the Internet just like he can to find out information on this. We left this appointment feeling stupid and depressed.
At the referral of a friend who’s husband has the same condition we found our current doctor. He put him on Humira. This is a powerful drug that you inject to yourself, it can have bad side effects and increases your risk for different cancers. The medicine worked great though and finally got him in remission after 3 years! He was on it several months and stopped taking it since he seemed fine and actually did great for about a year and a half.
Now for the last 4 months he has been having problems. The doctor just decided to put him back on the Humira. Unfortunately now we have new insurance. We did all the required tests to get the medication, and now the insurance company is denying the doctors request. It feels as though our light at the end of the tunnel has burnt out. Their reasoning is he does not have a skin condition or Crohns. The doctor did not put Crohns because he is not sure, but it can be used for UC and hes been on it before! Sighs. Unfortunately this medicine is around $1000+ for every injection and he requires two a month.
Two days after we were denied, my husband was admitted to the hospital once again. They are hopeful that his hospital stay will speed up the appeal for his medicine. Our fate is in the hands of someone who knows nothing about him. Until then we are left to wonder what will become of him if we do not get this medication. It is my vow as his wife to do everything I can to get this approved though! I will not give this up without a fight!