 Every since my sister-in-law was diagnosed with cancer my struggle with Crohn's disease has become progressively worse. My doctor told me that stress doesn't cause Crohn's disease, but you cannot tell me that stress doesn't exacerbate the disease. I keep telling myself that if it doesn't get better I will make an appointment with my gastro doc, but each week I never do. Frankly, I am terrified at going back on medication.
This morning, I decided to weigh myself as I've been staying away from the scale. If nothing else, the darn thing will tell the story and it did. I am down a full 5 pounds since I was at the doctor's office 3 weeks ago. While most people would jump for joy at losing some weight, this just depressed me. However, it also explains the severe muscle pain I've been experiencing since Crohn's affects your joints etc along with whatever autoimmune crap is going on in my body. As the muscle pain has eased off, the pain and exhaustion from Crohn's has gotten worse. The pain this morning is pretty severe and I plan to head home and rest. After my sister-in-law was diagnosed, I had a severe flare, but then it improved. After I hurt my foot I flared, but then it improved, somewhat. Today, it's a full blown attack filled with everything that goes with Crohn's. Worst of all, I am so not hungry. I ate a little bit this morning but I really can't do food until I feel better. I leave for Hawaii the week after next and I plan to enjoy myself with food or without it. When I come back, if I am not better, I will pull up this blog and make myself call the doctor. But seriously, the medications for Crohn's make me so sick. Methotrexate darn near killed my liver, Remicade gave me eczema and chronic hand infections for over one year, and prednisone makes me crazy. This new drug that has done absolutely nothing, is so damn expensive no one could afford it. The flare today is without question moderate to severe. This is no mildly active disease and that just pisses me off. I did everything everyone told me to do from eating clean to limited carbohydrates and once again I believed that it would work even though time and again I have proven to myself that it doesn't. Frankly, I don't want to believe I have Crohn's disease so when the pain goes away, I forget about it. On another level I am encouraged that I was able to stay off the heavy duty medications for 18 months without ending up in the hospital for a prolonged stay. So, in a way, I have shown myself that you can go on and then off the heavy stuff, even if the doc thinks I am nuts. I just don't understand why they make you go on those medications then refuse to wean you off when you are better. I am sure someone with more intelligence than me can explain why, other than how the chronic inflammation makes everything worse. I shall attack this flare as usual, no food to let the digestive tract rest other than broth and maybe chicken soup. I dunno why it helps, but it does, and for that I am grateful. These are the side effects of Remicade which was the best drug in the world for taking out my Crohn's disease:
Serious Side Effects of Remicade (Infliximab):
This what bothers me most about going back on Remicade: Those who have been using Remicade for a long time, especially those whose disease is very active, may be more likely to develop lymphoma. So there you go. As my doctor says, "There are no good options." I will go home, make myself rest, then finish the book I am editing. After that, I am going to go to the lake and maybe float on my air mattress. Then I will go home and rest some more. Hopefully, I can kick this flare's butt before it gets worse. Yet the other side of my brain says, "Who are you kidding?" Comments are closed.
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