Friday, May 2, 2014

The Brain Infection Drug

You would think the day after finishing law school would be chill to the max, but you would be wrong. I had a 9 AM doctor's appointment and I was determined to get in a good workout before that so I would have the rest of the day to read for fun or nap. I had an early breakfast and headed out just after 6 with a goal of riding 10 miles before I had to go home and shower.

It was cold enough for a thin fleece and gloves this morning, which is not typical of Tennessee in May. I'm a cold weather lover so the crisp air made me incredibly happy. I picked an easy route because yesterday's hilly ride was exhausting. I knew it would mean burning fewer calories, but I was okay with that because I'm planning a more challenging route for tomorrow.

I'm a slow rider, so even though I left early I only had time for 10 miles before my appointment. My legs were tired, but I enjoyed riding slow and people watching. It turns out my early workout was a good call because things got pretty busy once I got back home.

I made it to my appointment on time, but the nurse practitioner I was supposed to see was running late. My gastroenterologist's office is rarely punctual in seeing patients, but the nurse practitioners are usually better about being on time than the actual doctor. I was annoyed at first, but then the nurse practitioner I was not scheduled to see came into my room and explained that she was covering all the nurse practitioner appointments because the girl I was supposed to see was in a car accident that totaled her car and injured her knee. I am all too familiar with how much havoc car accidents can cause in a person's life, so I forgave the delay.

Today's appointment was mainly to discuss my colonoscopy/ileoscopy results and whether or not I need a new treatment plan. It wound up being a more productive appointment than I expected. About four years ago my Crohn's symptoms got so out of control that I almost died. My family took me to the Mayo Clinic in Minnesota and their recommendation was diversion in the form of a "temporary" ileostomy. Technically, the procedure is reversible for me because I still have my colon, but after my recent scope (where the doctor examined my intestines with a little camera on the end of a tube), the doctor thinks my current symptoms might be caused by diversionary colitis, which apparently happens to people with ostomies sometimes. 

The nurse practitioner spent some time explaining the new treatment options that have come out since the last time I had to switch medications. She gave me three basic options. Two of the medications are from the same class of drugs, but I immediately refused one of them because it caused a deadly brain infection in a small percentage of patients during the clinical trials on Crohn's. She assured me that she had treated many patients with the brain infection drug with no problems, but mishap and mayhem follow in my wake and I prefer not to invite trouble when I can avoid it.

The other two medications sounded a lot better than the brain infection drug. The first one works the same way as the brain infection drug without causing brain infections. It should be approved to treat Crohn's by the end of the month and instead of weekly shots like the Humira I currently take, I would only need an IV infusion once a month. The other medication has not yet been approved to treat Crohn's, but my doctor has successfully convinced insurance companies to approve payment for Crohn's patients in the past and is willing to fight with my insurance company if they try to deny coverage. That medicine would be one shot every 8 weeks and there is a chance that I can give myself the injections like I do with the Humira I currently take. In any case, they both sound like they will be better than my current regimen. 

I had been having problems with my ileostomy so the nurse practitioner talked the ostomy nurse into seeing me immediately after I left my first appointment. It's a long story, but the short version is that my stoma (the piece of intestine that sticks out of my stomach so that poop can go into my bag) has a little lump on it that appeared a few months ago and has gotten bigger. The lump makes it harder to keep my bag stuck to my skin and I have been complaining about it every time I see the doctor. No one listened to me until today. The ostomy nurse looked at it and said that it was not dangerous, but that I would probably need outpatient surgery to fix it. I know that sounds bad, but I'm actually really relieved that someone finally took me seriously and that the problem is fixable. I have another appointment in a couple of weeks to go back to the nurse and she will have the surgeon who did my ostomy surgery look at it then. Hopefully I can get it taken care of before it becomes more of a problem than it already is.

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