When people ask me about some of the harder aspects of living with Crohn’s Disease, I tell them about the chronic pain, the exhaustion and weakness, the lack of appetite, the lack of desire to do anything, and the constant doctors’ appointments. Most people can understand those challenges to some extent.

What healthy people can’t seem to understand is that I must constantly fight with my insurance company.

Take, for instance, getting my Stelara injections. They must be ordered through a specific mail-order pharmacy that my insurance company designates. Each time I need a refill, which is all the time, really, because they won’t let me get more than one shot at a time, I have to call the pharmacy to tell them I want the refill. Inevitably, I am transferred two or three times, and with each transfer I’m required to state not only my name and birth date, but my address and my insurance information. Each new customer service person will tell me to hold on for the next person because she can’t help me with what I need. Then that person will make me start all over again.

Usually after about three transfers, I get to the person I need, but each time, the person finds something wrong with my request. Either my account has been deleted and needs to be restarted all over again, necessitating another 15 minutes of repeating the same basic information, or my pre-certification no longer exists. (For certain specialty drugs, you have to have a special pre-authorization from your insurance company, which requires your doctor making a call and dealing with the insurance company). This can take up to two weeks before I can even get started on attempting to get my medication. Or there is some other unknown, seemingly stupid and incredibly maddening, problem.

I need my medication every eight weeks. On average, to get my medication cleared and sent, it takes me two to three weeks of phone calls of about 15 to 20 minutes each, most of which I’m on hold. That means I only have a couple of weeks directly after my shot until I have to start the process once more. I find I have to give myself breaks and gear up to go through it all over again. And again.

I dread the insurance company ordeal. I dread all the phone calls and all the red tape. And many days, I’m not even sure it’s worth it.

Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to inflammatory bowel disease.