Despite all this piffle I have been staying in touch with the UC blogosphere. And in particular was provoked into thought by this post on the The Knife you See, and a comment a friend made to me about how far down the 'chronic illness' road I have travelled. At the start we have questions, many questions, and duly recieve answers. Answers that I think we believe. In time the answers don't seem to hold up. May be they stop working. Maybe new questions render them redundant. So, next come the questions that cannot be answered so readily. These questions begin to give us an insight to the methods of finding answers to our original questions. We find that the answers to our new questions are unobtainable or subject to new leaps of faith. A crisis of confidence occurs. If this were a religion we might be doubting our god. We are forced to find a new framework within which we can restore belief. I stopped asking questions and started to look for the answers myself. First from without, and finally within.
I still do not understand why my UC causes massive inflammation in my limbs. I have been told unequivocally by a rhuematology professor that this is the case. At the time when the gastro docs were assuring me the only stone left to turn had a stoma under it, the rheumy prof pretty much told me that was the only course of action. I had made a big fuss for a second opinion through which I had been referred to his care. He basically kicked me into the long grass. I was damn sure they were wrong then. I still am.
I am not anti-surgery. I am not anti-drugs. I have not lost all faith in western medicine. What I am is sure that this disease is so variable and varying that we have to break out of the regimented methods of dealing with it. So many people I know have had to take exactly the same journey: 5ASA's, preds, azathioprine, 6MP, Methatrexate, Infliximab... surgery? Colostomy? Ileostomy? Perhaps peppered with alternatives along the way. But look at the blogs. People finding success, and indeed failure, with so many combinations of approach. But different. Different. Different.
I was trying to find a way to express all this when I stumbled upon this in an interview with the venerable old Willie Nelson:
"I think everyone has to decide for themselves. I think there's a scripture in the Bible [Luke 4:23] that says: "Physician, heal thyself". I think we all have to look at ourselves and say OK, I think this would be good for me, or I don't think this would be good for me..."As it happens he was talking about marijuana! But I like the sentiment.