Friday, January 28, 2011

It all began when... part 2

     We had just been told our 12 year old son had Ulcerative Colitis.  My head was spinning and I felt a clammy tingle run through me. "But he's only 12," I said.  The doctor informed me that it was quickly becoming a disease that affects more and more children.  I have to know a cause.  Something this drastic has to have a cause. There was no real answer to that question.  Too much Motrin as a baby, heredity, auto-immune, just because .... there was a different answer each time I asked.
      Before we knew it we were swept up into the world of UC!  Barium Malts, CAT scans, Clonoscopes, Morphine drips and pain that was with out end or limit.  Each time a procedure was done my weak little boy would look up at the nurse and say, "Thank you."  It was the most heart breaking thing I have ever been through.  I never wanted my child on steroids. Never thought I would even have to consider it. But the Colonoscopy showed a horribly bloody ulcerated colon that was almost swollen shut.  We had no choice.  So with tears streaming down our cheeks we relented to the prednisone.
     After five days in the hospital he was sent home with an appointment to see the GI who had diagnosed him.  Where we live there is no Pediatric GI so the GI we saw in the hospital agreed to continue to see him since he has treated some children during his residency.  Maybe had I not been in a sleep deprived traumatized state I might have seen this as my second really bad idea.
     Our first visit was shocking.  Silly me thought, "Ok this was horrible but we just take the medication and in a week we will be fine."  But now I was being told that this was a life long illness and he would be on prednisone for quite awhile.  NOOO I don't want that!  I really don't want my child to have to live with this disease!  Then very nonchalantly the doctor informed us that if the prednisone didn't work we could always take his colon!  Like it was pulling a tooth or throwing away last years jacket.  No big deal.  I was horrified.  But I could hear God whisper No. I asked the doctor that day if it had any thing to do with what he ate.  His answer was no.
     We left the office with prednisone and now Colozal. There had to be something else.  Some other way to treat this illness.  My husband and I don't rely heavily on prescription medications and avoid them as much as possible.  Years ago, my husband had taken me to an Integrative Medicine Doctor in Baton Rouge.  She had helped me when I had been ill and no doctor could figure out why.  We knew if we got Jacob to this doctor she would help him.  And she did.  After identifying 3 "nasty bacteria" in his colon,  she handed us a book and said, "if you follow this diet fanatically and continue on it he will get better".
       That book was Breaking the Vicious Cycle...the diet SCD. The answer to my prayers. Finally, we had an option we could live with.  I read the book and was so grateful to understand the disease and the effects of the diet.  I jumped in and began cooking.  I was used to recreating recipes because I have insulin resistance and have had to revamp recipes for years.  But I also know what I can handle and what I can't.  Which means I am about 99% sugar free.  I know that I can handle a little ketchup or salad dressing without having a reaction.  So this is the frame of mind I began the diet with.  OK third bad idea.  I thought it was ok to have ketchup just not all the time.  He could order breaded chicken at a restaurant.   We just removed the breading.  And he wasn't getting completely well.
     By the 7th month Jacob was like a little old man.  His joints hurt so bad he could hardly move around.  My normally active young man was sleeping all the time.  In the mornings, I literally had to bounce the bed up and down to get a moan out of him.  I couldn't get him to move.  I began to dread it in fear I wouldn't get him to wake up. He also began having trouble breathing.  It was July and very hot.  Just walking from the car to a store or taking a shower would cause an asthmatic type reaction. You guessed it now he was on an inhaler.  I looked up the Colozal and this was every side effect mentioned.
     So I made an appointment with his GI doctor and promptly asked that he be taken off the meds.  By this time our Doctor decided I was a problem but he agreed to cut back the Colozal and wean off Prednisone.  Prednisone was down to 5mg and Colozal was still at the maximum dose.  Did I mention that I discovered that there were no studies for Colozal in children for that long of a period of time?
     Slowly he started feeling relief from the side effects and seemed to be doing ok.  Then tragically my father passed away.  He had been ill for a long time but his death really upset the boys.  Jacob needing to feel better one day while out with friends drank a lemonade and took a bite of cotton candy.  Three days later the nightmare began again.  Only this time it was worse! To be continued...

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