Ah, the joys of managing inflammatory bowel disease. Friends and family may hear about upcoming procedures, flare ups and hospitalizations, but we often shield them from the day-to-day. While taking on IBD there are so many puzzle pieces that have to be in place to keep the ship steered in the right direction.
These are all the parts moving behind the scenes:
How many of us have spent hours on the phone… trying to schedule mail-order pharmaceuticals, set up shipments and deal with the headaches of making sure we have what we need when we need it. It’s even more joyous when there’s an error in billing and you get charged thousands of dollars instead of your typical five.
How much time have you spent on the patient portal… writing back and forth with your GI and their nurses, trying to get to the bottom of what a blood test result means or asking about a symptom that’s worrying you? It’s always fun when blood work results are shared on a patient portal while you’re at work, levels are elevated and look worrisome, and there’s no explanation from your doctor as to why that is.
How many trips have you taken in your car to visit doctors, specialists, massage therapists? How many times a year do you have to travel to get blood work and anxiously await the results. I had to chuckle this week when the lady at the front desk of the hospital told me she recognized me. A reminder of just how often I’m stopping by to get my blood taken and go through tests.
How about all the text messages from the pharmacy saying your pills are ready for pick up…except you’re on so many, you don’t even know which pill they are referring to.
How many times have you gotten to work late or left early because of all the appointments, and then had to make up the time? Appointments that you’re often anxious about. Appointments that often leave you feeling emotionally and physically drained. Before you leave you set up a follow-up appointment and probably have been given direction to run to the CVS and get a vaccination since you’re immune suppressed from the drugs you are on or meet with a bone doctor or dermatologist, because IBD puts you at risk for other health complications.
How exhausting is it to keep all your medical bills organized and keep tabs on what’s covered, what’s not and if someone has made an error along the way. Don’t even get me started about what a nightmare it is when you switch insurance plans.
Each of these experiences just becomes a part of our normal.
Chances are you don’t even think twice about this. Sure you may get annoyed or aggravated when you explain to the tenth person on the phone why a bill is incorrect or why you need medication at a certain time.
For those us with Crohn’s disease or ulcerative colitis, stress and fatigue impact us on a whole different level. These day-to-day annoyances can often lead to us feeling defeated. It’s all part of the patient journey that people don’t see unless it’s their reality. If only there was a way to streamline the process across the board and make things easier for both patients and physicians.