Ok, I don't really like talking about my bowel movements and such, but I've found that I must do it in my continued search for answers about my CF. So much of what I've experienced seems to go against "normal" CF. Yes, I know there really isn't any norm and that every case is different. Here's what is currently bothering me about mine:
I've been tested twice for faecal elastase and both times I had very high counts (around 450 the first time and 500 the second). However, I still suffer from floating stools, grease floating on the water, and very foul-smelling stools/gas. I am a small person, only 5'6" and currently 120 lbs, and I find it very difficult to put on or maintain weight. I was absolutely tiny as a child, being 45 lbs at 10 years old and not breaking 100 lbs until my sophomore year or later in high school. When I was diagnosed with CF earlier this year, they started me on Creon and I took it with every appropriate food but it didn't seem to make any difference. After maybe 4-6 weeks I stopped taking it and now only take a couple when I am having particularly fatty foods (which means almost never).
Has anyone else had similar experiences? I've researched the faecal elastase test and it seems to be the new standard way of testing for pancreatic sufficiency. But I wonder if perhaps a different test were done, I would maybe be found to have mild pancreatic insufficiency. My wife and I are no longer in the Marine Corps, and we are waiting for our new medical insurance to kick in before I get any other testing. But the only accredited CF center and CF specialists in Hawaii are at Tripler Army Medical Center, which is no longer available to me as a civilian. So further testing would have to be done either out-of-state or at a non-accredited center.
Thanks for your input and suggestions!
I've been tested twice for faecal elastase and both times I had very high counts (around 450 the first time and 500 the second). However, I still suffer from floating stools, grease floating on the water, and very foul-smelling stools/gas. I am a small person, only 5'6" and currently 120 lbs, and I find it very difficult to put on or maintain weight. I was absolutely tiny as a child, being 45 lbs at 10 years old and not breaking 100 lbs until my sophomore year or later in high school. When I was diagnosed with CF earlier this year, they started me on Creon and I took it with every appropriate food but it didn't seem to make any difference. After maybe 4-6 weeks I stopped taking it and now only take a couple when I am having particularly fatty foods (which means almost never).
Has anyone else had similar experiences? I've researched the faecal elastase test and it seems to be the new standard way of testing for pancreatic sufficiency. But I wonder if perhaps a different test were done, I would maybe be found to have mild pancreatic insufficiency. My wife and I are no longer in the Marine Corps, and we are waiting for our new medical insurance to kick in before I get any other testing. But the only accredited CF center and CF specialists in Hawaii are at Tripler Army Medical Center, which is no longer available to me as a civilian. So further testing would have to be done either out-of-state or at a non-accredited center.
Thanks for your input and suggestions!
