While I'm not in pain, my symptoms seem to be worsening,
and I ended up calling the doctor today.
On Friday, I dropped my predisone 20 mg, down to 40 mg. I also stopped the Sucrafate and started the Cromolyn sodium (to stop the eosinophils from bursting). This was per Dr. Gonsalves' instructions. That day, I started having trouble digesting the formula. I did about 36 oz of formula and 1 juice box sample (about 8 oz). It took all evening to get rid of the allergic reaction (tingling in the mouth and tongue) that occurred from the allergy testing that day, which was inconclusive but showed a reaction for every food group. On a good note however, my blood work showed that the eosinophils are gone (not likely from my GI tissue, but it's still a good sign).
On Saturday, I spent the day at home, and again, the burning from the formula made it so I could only get the same formula and one juice box down again. It feels like I'm swallowing a fire ball, then it sits in my stomach, and regurgitates for hours. I called my primary care doctor, who ordered another sample to monitor to the c-diff. Unfortunately or fortunately, it was easy to get another sample, as every time I take the Flagyl, I end up ill and in the bathroom again. Last night, I tried my typical italian ice, and within minutes, I had an allergic reaction. It was strawberry - but it was the 3rd time I've had it this week, and this was the first time I had a reaction. It felt exactly like when I had the allergy testing done. I took an Alavert, just like they gave me at the allergist office, and the symptoms didn't go away until overnight. I seem to be starting to react to anything at this point; I'm not doing Italian Ice anymore.
Today, I took my pills, and waited about 3 hours before trying the formula. After two sips of formula, I felt like my esophogus was on fire. Within minutes - back to the bathroom. I called Dr. G's office and left a message; the on-call doctor said she wasn't qualified to decide what to do on my case, but to stay with liquids only today and call again tomorrow. I will call again in the morning, as I have to get the nutrients in some way. Putting something in me that is making my symptoms worse seems just completely dumb at this point; things are obviously too inflamed to handle this too. I've been able to get down 2 gatorades, 1 jello cup, and am starting on ginger ale. However, with each Flagyl I take, I end up back in bathroom. My tongue is still tingling, so I'm going to continue to take the Alavert as a precaution. It could be a reaction to the Cromolyn - it's just too hard to know at this point what I'm reacting to.
Tomorrow and Tuesday, Mrs. Wols is coming to help me with Drew/Lucy while Adam goes to work. (He's taken off over 2 weeks already, and HR has questioned his time off. If my health continues to be this up in the air, we'll probably file FMLA so he's protected in taking more time off.) I'm very weak and shaky, so I'll be grateful to have someone here - even to monitor me at this point.
I will place a call into Dr. G first thing. I'm not sure what's next if I can't get the formula down; I'd be willing to do a feeding tube or anything at this point - I'm ready to move forward and get better!! We'll probably pack up the car and head to the lab in the morning to drop off the samples, then just stay at home and be with the kids until we hear from the doctor to figure out what's next and what we need to do.
Cherie came by with food for the family in the freezer. She's offered to drive me downtown if needed, if Dr. G wants to see me tomorrow or Tuesday.
I'll keep everyone posted with the news we get in the morning, and if we need to head back downtown. I'm guessing they'll ramp me back up on prednisone, but there is no way to tell. I'm also not sure what will happen if I can't get the formula down. Hopefully we'll know more in the morning.
On Friday, I dropped my predisone 20 mg, down to 40 mg. I also stopped the Sucrafate and started the Cromolyn sodium (to stop the eosinophils from bursting). This was per Dr. Gonsalves' instructions. That day, I started having trouble digesting the formula. I did about 36 oz of formula and 1 juice box sample (about 8 oz). It took all evening to get rid of the allergic reaction (tingling in the mouth and tongue) that occurred from the allergy testing that day, which was inconclusive but showed a reaction for every food group. On a good note however, my blood work showed that the eosinophils are gone (not likely from my GI tissue, but it's still a good sign).
On Saturday, I spent the day at home, and again, the burning from the formula made it so I could only get the same formula and one juice box down again. It feels like I'm swallowing a fire ball, then it sits in my stomach, and regurgitates for hours. I called my primary care doctor, who ordered another sample to monitor to the c-diff. Unfortunately or fortunately, it was easy to get another sample, as every time I take the Flagyl, I end up ill and in the bathroom again. Last night, I tried my typical italian ice, and within minutes, I had an allergic reaction. It was strawberry - but it was the 3rd time I've had it this week, and this was the first time I had a reaction. It felt exactly like when I had the allergy testing done. I took an Alavert, just like they gave me at the allergist office, and the symptoms didn't go away until overnight. I seem to be starting to react to anything at this point; I'm not doing Italian Ice anymore.
Today, I took my pills, and waited about 3 hours before trying the formula. After two sips of formula, I felt like my esophogus was on fire. Within minutes - back to the bathroom. I called Dr. G's office and left a message; the on-call doctor said she wasn't qualified to decide what to do on my case, but to stay with liquids only today and call again tomorrow. I will call again in the morning, as I have to get the nutrients in some way. Putting something in me that is making my symptoms worse seems just completely dumb at this point; things are obviously too inflamed to handle this too. I've been able to get down 2 gatorades, 1 jello cup, and am starting on ginger ale. However, with each Flagyl I take, I end up back in bathroom. My tongue is still tingling, so I'm going to continue to take the Alavert as a precaution. It could be a reaction to the Cromolyn - it's just too hard to know at this point what I'm reacting to.
Tomorrow and Tuesday, Mrs. Wols is coming to help me with Drew/Lucy while Adam goes to work. (He's taken off over 2 weeks already, and HR has questioned his time off. If my health continues to be this up in the air, we'll probably file FMLA so he's protected in taking more time off.) I'm very weak and shaky, so I'll be grateful to have someone here - even to monitor me at this point.
I will place a call into Dr. G first thing. I'm not sure what's next if I can't get the formula down; I'd be willing to do a feeding tube or anything at this point - I'm ready to move forward and get better!! We'll probably pack up the car and head to the lab in the morning to drop off the samples, then just stay at home and be with the kids until we hear from the doctor to figure out what's next and what we need to do.
Cherie came by with food for the family in the freezer. She's offered to drive me downtown if needed, if Dr. G wants to see me tomorrow or Tuesday.
I'll keep everyone posted with the news we get in the morning, and if we need to head back downtown. I'm guessing they'll ramp me back up on prednisone, but there is no way to tell. I'm also not sure what will happen if I can't get the formula down. Hopefully we'll know more in the morning.
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