A Writer's Life Interrupted #crohns #uc #ibd

This last hospital visit had me begging for a colostomy. The pain was overwhelming, debilitating, and let me not leave out excruciating. I don't think I've ever experienced the pain scale at 10. When they hit me with the morphine I could literally feel the drug hit the pain receptors in my stomach and intestines and put the fire out. I embarrassed myself in front of the hospital staff and I am sure the patients in the hallway. I not only screamed, I cried, hysterically. 

I have had Crohn's in my mouth, stomach, duodenum and large intestine. This was a first in my descending colon and rectum and for the love of God, hopefully the last. I had no idea people could survive in that much pain. Generally, people with my condition will have a temporary colostomy allowing the rectum to rest and heal. In my case, it would have had to be permanent because I have no healthy tissue left. That was hard to wrap my mind around. 

In any case, Crohn's has a nasty habit of appearing someplace else even if you remove it. So, I opted out, considering it as a last resort, and agreed to another run with Remicade. On Tuesday, I will be seated next to my sister-in-law while she is having an infusion of chemo and I am having Remicade, a different form of chemotherapy that targets the immune system and kills it. I've been on Remicade before, but had to go off when I was struck with an unrelenting staff infection that would not give up. 

It took me a year to recover from the infections and while I am nervous about going on Remicade again, staying the way I am now shoots quality of life to zero.  Really, there is no decision here. It has to be done. The daily fevers and pain are wearing me out. I was also given a liquid diet high in protein to at least attempt to start the healing process. It is a no sugar, vanilla flavored, Ensure-like liquid that will deliver the nutrients I need three times a day or as much as tolerated. I've lost a lot of weight and hopefully this will put me back on track. 

At least I hope so. If not, I'll be sure to let you know. 

Thank you for stopping by!