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

Generally, I have a sense of humor. Not this week or last.

The love for your kids is never-ending. When you have one with Ulcerative Colitis and another with Diverticulitis and what they are calling Pre-Crohns, life can get pretty rocky. Last week (and this) was/is no exception.

One kid went in for a colonoscopy the doctor couldn't finish because of the flare, then ended up in ER with a high fever and vomiting, and then BACK to ER with a blood clot. Now the kid is on blood thinners which is not good for the flare and has to go to the Coumadin Clinic starting next week. The pre-filled syringes my child has to inject into the tummy area scares me to death.  In fact, the whole episode frightened me into a panic attack. I HATE being out of control as do my kids. Something else I passed down along with weak genetics.  The despair I feel when my kids are ill is doubled when I think that the faulty gene they received is from me.   It took me hours to discover that the anesthesia used in a colonoscopy has a side effect of blood clots. While the doc said it was a strange coincidence, I think it's the meds. There is no history of blood clots on either side of the family so hopefully this will be a short stint in blood thinners. Just after we got the blood clot figured out the next kid ends up in the ER after a bout with the flu. Now this one is schedule for a CT scan and colonoscopy in the next few weeks.

I don't want Remicade for my kids or Humira or Enbrel. I want a cure. I am willing to be a guinea pig in any experiment so check out my contact page and contact me if any are available. Since the genetic sequence is so bad in my family I hold out little hope for my grandchildren except for a miracle which can always happen.

It is true that Remicade has given me my life back, but it comes with extremely sensitive skin. I tried a tooth whitening toothpaste last week that sent me screaming to the kitchen for a glass of water when I couldn't reach the faucet. It was like acid in my mouth and I will stay with natural toothpaste for now--no strong chemicals or additives. The curious thing was I didn't see any burns on my tongue, yet it hurt for hours afterwards. Then there's the eczema and sometimes intolerable itching.

As usual, when faced with something I can't control I get mad. I prefer to stay away from people because I end up saying something I don't mean. I'm talking about throwing the dishes against the wall mad. Yes, the kids have seen me do that. Usually it has more to do with grief, but watching my kids suffer and knowing they got the gene from me, makes me furious.

Can't we just get a cure?