Tuesday, September 4, 2012

Things Are Looking Brighter and Brighter

"...and hope will NEVER disappoint..."

See why I find it to be foolish than to be anything but hopeful?

I had a surprise appointment with my new GI. And it could not have gone better. He was warm and friendly, down to earth and knowledgeable. He took plenty if time to listen to me. I cried the first two minutes as I told him how afraid I was of the J portion of my G/J tube coming up out of my esophagus again...

...and then he said that it was silly to keep trying to deal with this awful G/J. That makes two of my new doctors that do not like G/J tubes. He said that people with reverse motility/peristalsis should not have G/J tubes. He agrees with my primary and IR -- I need a separate J tube, and today he made a referral to surgery.

I never thought I'd be so excited for surgery. But I am!

Dr. K (my GI) thought long and hard about who to refer me to. He said he did not want to refer me to a surgeon that was going to try to "fix" my gastroparesis. No more talk of gastrectomy. No more talk of gastric pacemakers. No more talk of "bucking up" and trying to become 100% oral.

This is my life and he thinks I've been through enough that he doesn't want a surgeon that doesn't really know me getting into my personal business.

I've been referred to Dr. P and she is here in my home town. It will be a straight J tube placement. She is supposed to be excellent.

He also wants to try me on another formula. Currently I take Peptamen Junior 1.5. The only problems he sees with this is that it is 1)it is only partially broken down and 2)it is 1.5kcal/cc, making it a high calorie formula. He doesn't like to use high calorie formulas when feeding the small intestine. He said that 100% broken down, lower caloric density formulas can be run faster with fewer problems. He had a great understanding of gastroparesis. I am so excited to add him to my treatment team! I see him again in six weeks.

I will be keeping my G tube. Currently I am back to venting (draining air and bile from the stomach) 24/7 due to the horrific vomiting I'd been experiencing. It's improved greatly.

He also said that my GI pain may not be neuropathy after all. He said that the jejunal tube may in fact be causing friction on my small bowel, causing all sorts of irritation and pain. So it may be that once the G/J is gone and I've recovered from the J tube surgery, I will be pain free!

Honestly that kind of annoys me. All this time I'd been trying to talk to the team in Columbia about this and they never listened. It took twenty minutes with Dr. K and we are already lightyears ahead of the progress I'd made in a year with GI at University.

My appointment with the surgeon is October 3rd.

In other news, my appointment with the HealthPlex went very well. I saw my weight for the first time since 2009. I was shocked. It was a lot lower than I thought it would be. Then they did my assessment and my upper body strength needs work, my cardiovascular system needs work, but my lower body strength and flexibility are looking great. I go back again tomorrow for orientation and to get my tailored workout plan!

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