It is my greatest fear having had to be hospitalized twice already this year for my Crohns disease it will progress beyond medical treatment.
I take Pentasa and get the Remicade infusion. The two front-line treatments for Crohns disease. But yet I still have had two partial small bowel obstructions this year alone.
Why should this create such a big fear in me? Well I am already missing half my small intestine. If the part that is bothering me now does not respond to medical treatment then it will have to be removed surgically.
Having this section remove could possibly put me over an edge where I become, in the words of my doctor, "a nutritional cripple". I would no longer be able to eat. I would be hooked up to a machine 12 hours a day for my nourishment. But this won't keep me alive forever.
It is my greatest fear that I will not get better, I'll have surgery, I'll then be on TPN and finally die. I don't want to die in the next year.
I don't.
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That is really tough to read. We all have to die but most of us don't know how so it takes the edge off. If I were you I would do exactly what you have been doing. Live to the fullest. Travel, fight, race and everything else. We especially need to be sure we see eachother while we still have the time. Heck I could be gone tomorrow. If you are going to be in SLC July 4th then we need to be as well. Just need to chill together. Love ya. J
ReplyDeleteit is my fear. doesn't make it reality.
ReplyDeletebut it is a very slight possibility. and i am very afraid of it, though.
This post broke my heart.
ReplyDeleteKeeping you in some prayers.