#Crohn's disease
Crohn's disease is an inflammatory bowel disease (IBD). It causes inflammation of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. Inflammation caused by Crohn's disease can involve different areas of the digestive tract in different people. I take a medication called Remicade which is a type of chemotherapy that targets the T-cells in my body which lowers inflammation. I get it through IV and it takes me about 4 hours to complete. I get my infusion every 4 weeks. I have started to build up antibodies so the amount of antihistamine I have to take has doubled. #Dysautonomia: What Is Vagal Nerve Neuropathy? Vagal nerve neuropathy is a condition in which the nerve is damaged and is sending wrong or weak signals to and from the body and the brain. Since the vagal nerve is connected to so many different organs, manifestations of this neuropathy can include difficulty speaking, constant belching or coughing, nausea or irregular digestion or pulse. After visits to Stanford and extensive testing it was determined that the type of neuropathy I have is autoimmune activated. It affects my heart rate for which I have to take medication, it also affects my blood pressure for which I have to take medication. Which means... I take one medication to slow down my heart and another to up my BP. It also affects my digestion by not allowing food to pass as quickly as it should. And it just adds more pain to the rest of my digestive tract. I also loose my voice frequently. I never know when it is going to happen and it may last a few days or just a few hours. My blood pressure, even on medication, is always low and so I can get extremely light headed and even faint. In addition I have supine hypertension which means my blood pressure can sky rocket when I am laying down. Some days I get super lucky and everything works like it should. The physician said that people with my condition live about 5 years, but what that really means is that 5 is the average. So, I'm shooting for 10 years. I've always outdone myself anyway. Now that that is behind us, I can say that the holidays are always hard on people like me. There is so much to do, so much fun to have, and so many people to love that I don't count my spoons like I should. See spoon theory here. Consequently, I end up exhausted which is where I am now. Sitting in the hospital getting a Remicade infusion. I lost a bucket full of blood yesterday so being scheduled for Remicade today is a good thing. When stuff happens Two weeks before Thanksgiving I woke up with a red eye. It felt uncomfortable so I thought I should go to our urgent care clinic. I didn't not want pink eye for the holidays. The urgent care people didn't think I had pink eye so he called an ophthalmologist he knew and got me in right away. I STILL thought I had pink eye. Before I saw the doc, a physicians' assistant did all the usual stuff, weight etc. Then she stood me up in front of an eye chart and asked me to cover my left eye and read the chart. I completely and utterly freaked. I started screaming, "I can't see!" Rather than go through the hysterical details, it turns out that if one eye is having difficulty with vision the other eye compensates. While I would have thought that ridiculous a few months ago, I don't anymore. It's true and it's real so if you have #Crohn's disease make sure you get an ophthalmologist which is not an optometrist. See difference here. The ophthalmologist was a nice guy. He even did an MRI on my eye which impressed me. Once I got back into his office and he'd read the report, he informed me that I had significant inflammation in my eye and the kind I had was more than likely caused by active Crohn's disease. To read all the different conditions Crohn's can cause in the eye, click here. He handed me a bottle of liquid prednisone for use in the eye. By the second day my eye cleared and I followed the docs instruction to taper down. By Thanksgiving it was back so I grabbed my bottle of prednisone and put it in and just like before and it cleared within a few days. I called the office on Monday and explained my situation. The receptionist became quite upset with me as prolonged use of the drug can cause eye pressure to sky rocket. Well, hell, no one bothered to tell me. By the time I got in to see the doc the eye had cleared at which point I was instructed to call if it came back again. The inflammation came back on Christmas. The doctor wondered why I hadn't used the Prednisolone which irritated me so I explained what the receptionist said and he said, don't listen to her. *frustration* Dry eye You see the commercials on television about dry eye. I confess to blowing them off and muttering at the television to tell the advertising public to go buy some Visine. I had no idea how incredibly painful severe dry eye can be. Your eyelid sticks to your eyeball and when you open your eye it's like sandpaper scraping across your iris. Seriously, only the devil could have thought up something like this. My GI doc told me that Uveitis generally will come in flares and most of the time will not permanently damage the eye. I am constantly flooding my eyes with artificial tears and I do use prednisolone when the cornea is inflamed which is most of the time. Now it has moved into my left eye as well so I squint a lot. The worst part is my vision which remains blurry and my inability to withstand bright light like, um, you know, typing on a damn computer. The screen drives me nuts and I blink a billion times a minute. I asked my ophthalmologist if it was bad to stare at a computer screen too long and he said, "Does it bother you?" I nodded. "Then limit yourself to just a few hours per day, if that." After he stared at me a minute he asked, "Have you thought of giving up the computer?" I shouted, "I'm a writer!" He said, "Well for now you are not." I have decided to just do short blogs from here on out but at least I wanted to explain why I haven't been around much. I have said a somewhat good-bye to Facebook and when I do check it, it is just for a quick glance. Same with Instagram. If I post, I post to Instagram which also populates Twitter and Facebook. I miss my contacts with my buddies on Facebook, but until this clears this is all I have. You would think that now I no longer have the pressures of working my stress level would go down and my health would improve. It's been two years almost to the day when this latest flare began and while I can say that some areas have improved I have also ended up with new issues. Maybe the universe is trying to tell me something. So, until next time, Namaste Comments are closed.
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