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10:49pm February 27, 2013
hoofbeats-and-hospitals: Finally an update! Since the last time I posted about everything I’ve gotten back more test results and been to quite a few different doctors. As far as my stomach is going, I went back to the GI doctor and she gave me the results of my Sitzmark Study. In a normal Sitzmark a person consumes plastic rings over the course of 3 days. On the 4th and 7th days they get an Xray. By the first Xray all of the rings should be in the large intestine and some may have already been passed. By the 7th day 95% of the rings should be passed. My first Xray looked normal, all the rings were in the large intestine but my second Xray was exactly the same as my first Xray. My large intestine was not moving the rings through at all! So, my doctor explained that my gastroparesis was not just effecting my stomach. The Gastric Emptying test showed a delay in my stomach emptying and the Sitzmark showed an extreme delay in my large intestine which means that my entire digestive tract is not functioning properly. She was concerned about my weightloss as well. I’ve lost about 15lbs in less than a month and she is considering admitting me and putting in a Nasogastric feeding tube in order to maintain my weight. Right now I am on an all liquid diet (Ensure and Orgain) and I have to be weighed weekly. If I continue losing weight she will admit me and put the tube in. I am also taking a ton of meds to try an speed up my stomach emptying: Cyproheptadine 1x daily Miralax 2x daily Omeprazole 2x daily Bitters Drops 2-3x daily Flagyl 3x daily Erythromicin 3x daily I bought this really cute pill carrier though! :-D And my fridge is stocked with every flavor of ensure so I can have some variety. I am scheduled to go to the Motility Clinic at MGH in two weeks for more specialized treatment and I will be having a rectal pressure test as well. I’m pretty nervous about that one so I’m going to ask them to sedate me. So that’s what has been going on with my stomach. I will be making another post momentarily to explain everything that happened at the genetic doctor. Fight like a zebra! I can’t stand most flavors of Ensure, so I have only vanilla, butter pecan (my favorite), and strawberry. Both Ensure and Ensure Plus depending on what I can keep down. There’s something else I do for tastes though. Certainly not for nutritional content! It turns out that nearly any food can be made into a soup. So my friend makes me soups (including some with stomach-settling ingredients like ginger) out of every possible kind of food she can think up. She keeps the broth pretty thin so it’s not overpowering. Then she filters out all the solids and gives me the broth. Which gives me the taste of nearly any food I want, though no real nutrition much beyond water and salt. I only eat a little soup every day but it helps keep me sane when my real nutritional food only comes in three flavors I can stand. (Sort of six flavors, because Ensure and Ensure Plus taste subtly different.)Good luck with maintaining weight. Last fall I ended up almost getting a feeding tube because even five different nausea meds combined plus those weird antibiotics weren’t working. Adding Marinol kept me off the feeding tube – I’m still fighting nausea every day on all these meds, but I can mostly stay out of the hospital – precariously. My gastroparesis has gotten much worse over the years though so I’m trying to figure out what’s in my future if this keeps up – feeding tubes? Pacemaker? I just don’t know. I just know I want to choose when I’m not yet so weakened by malnutrition that surgery would be difficult.

hoofbeats-and-hospitals:

Finally an update!

Since the last time I posted about everything I’ve gotten back more test results and been to quite a few different doctors.

As far as my stomach is going, I went back to the GI doctor and she gave me the results of my Sitzmark Study. In a normal Sitzmark a person consumes plastic rings over the course of 3 days. On the 4th and 7th days they get an Xray. By the first Xray all of the rings should be in the large intestine and some may have already been passed. By the 7th day 95% of the rings should be passed.

My first Xray looked normal, all the rings were in the large intestine but my second Xray was exactly the same as my first Xray. My large intestine was not moving the rings through at all! So, my doctor explained that my gastroparesis was not just effecting my stomach. The Gastric Emptying test showed a delay in my stomach emptying and the Sitzmark showed an extreme delay in my large intestine which means that my entire digestive tract is not functioning properly. She was concerned about my weightloss as well. I’ve lost about 15lbs in less than a month and she is considering admitting me and putting in a Nasogastric feeding tube in order to maintain my weight. Right now I am on an all liquid diet (Ensure and Orgain) and I have to be weighed weekly. If I continue losing weight she will admit me and put the tube in. I am also taking a ton of meds to try an speed up my stomach emptying:

  • Cyproheptadine 1x daily
  • Miralax 2x daily
  • Omeprazole 2x daily
  • Bitters Drops 2-3x daily
  • Flagyl 3x daily
  • Erythromicin 3x daily

I bought this really cute pill carrier though! :-D And my fridge is stocked with every flavor of ensure so I can have some variety. I am scheduled to go to the Motility Clinic at MGH in two weeks for more specialized treatment and I will be having a rectal pressure test as well. I’m pretty nervous about that one so I’m going to ask them to sedate me.

So that’s what has been going on with my stomach. I will be making another post momentarily to explain everything that happened at the genetic doctor.

Fight like a zebra!

I can’t stand most flavors of Ensure, so I have only vanilla, butter pecan (my favorite), and strawberry. Both Ensure and Ensure Plus depending on what I can keep down.

There’s something else I do for tastes though. Certainly not for nutritional content! It turns out that nearly any food can be made into a soup. So my friend makes me soups (including some with stomach-settling ingredients like ginger) out of every possible kind of food she can think up. She keeps the broth pretty thin so it’s not overpowering. Then she filters out all the solids and gives me the broth. Which gives me the taste of nearly any food I want, though no real nutrition much beyond water and salt. I only eat a little soup every day but it helps keep me sane when my real nutritional food only comes in three flavors I can stand. (Sort of six flavors, because Ensure and Ensure Plus taste subtly different.)

Good luck with maintaining weight. Last fall I ended up almost getting a feeding tube because even five different nausea meds combined plus those weird antibiotics weren’t working. Adding Marinol kept me off the feeding tube – I’m still fighting nausea every day on all these meds, but I can mostly stay out of the hospital – precariously. My gastroparesis has gotten much worse over the years though so I’m trying to figure out what’s in my future if this keeps up – feeding tubes? Pacemaker? I just don’t know. I just know I want to choose when I’m not yet so weakened by malnutrition that surgery would be difficult.

Notes: