no relief

Another week has passed since our last blog post and unfortunately my GI symptoms, while not getting worse, are unrelenting. I continue to receive IV nausea medication , as well as periodic hydration as appropriate. My pancreatitis has been extremely painful at times as well. For those CF-ers out there: mine feels like a burning and tearing at my mid gut and it wraps around to my upper right back. I also get overall abdominal cramping and lots of nausea/vomiting. And it is almost always associated with eating. And it does not matter what I eat anymore. It used to be, several years ago, that once I took omitted lots of the fatty foods and decreased my dairy intake, I didn't have a pancreatitis attack for about 8 years. Slowly over the last 2 years, however, the symptoms have become much more frequent despite my dietary changes. I can be as careful with fatty foods and large portions as can be and still the symptoms creep up. I will continue to do my best staying hydrated and eating small frequent meals and snacks.

My out-of-state docs are working on getting me a GI doc who specializes in Gastroparesis. This doc will not be able to improve my symptoms-we have already done EVERYTHING possible to treat the gastroparesis. It's important that people reading this-friends, family, folks with CF, etc., know this. I cannot reverse the gastroparesis. I say this because we continue to be asked about this. There seems to be a continued idea that the gastroparesis gets better. The flares can be less frequent and severe but there is no way to reverse the gastroparesis or make it go away. I can only do my best at maintenance-diet, appropriate medication therapies, good blood sugar control; and, address flare-ups as they come.

Eric and I head to Colorado this Sunday to meet with the CF team there. We are hoping to get some opinions and perspectives on the types of CF GI issues they've seen; and, also to make sure we are on track with my maintenance and flare-up plans.

Even thru this flare-up we are taking advantage of fall time and friends and of course football!!! We cannot believe Hattie turns 2 this November!

We continue to look forward to reading the emails and blog comments that you all send our way. Thank you, lil warriors out there! We love you.

See you when we get back from Denver.

Love, Kristen