It finally stopped raining so I sat in the sun for a little today. I managed to sit halfway in the shade so I wouldn't get a feeding tube tan line hahah!!! I had some pain and nausea this morning but with the perfect cocktail of medication we managed to get it under control. Someone emailed me asking what I do when I have nausea, so I have a little list of things that help me:
- Of course...zofran :)
- Also, coke syrup helps. I just sip on 2 teaspoons here and there and it really helps (this was when i could tolerate food/liquids)
- I let a necco wafer dissolve in my mouth, they are really chalky so it helps coat your stomach
- I tend to get really hot and sweaty when I'm nauseous so ice packs/cold damp towels make me feel better as well
That's basically it for today. I might try and eat something later on, but we will see how that goes. I am scheduled for another gastric emptying study on Tuesday but instead of eggs they are giving me chocolate milk. I can't exactly tolerate dairy (or hold down anything but water) so I'm not sure how well that is going to go. I hope everyone is staying well!
xoxo,
Sarah.
Saturday, May 28, 2011
Friday, May 27, 2011
Mashed Potatoes and Bile....yum
Here is how last night and this morning went...
Last night I decided I would try and eat a small amount of mashed potatoes, and see how it went. I didn't eat a lot and I ate at a very slow pace, but of course I began to feel super nauseous. This was so frustrating because I haven't eaten in a month, I have gone longer, but this still stinks. Anyway, I was trying so hard to keep the food down, breathing deeply, finding my happy place haha and nothing worked. I was doubled over in pain in front of the toilet crying hysterically. The pain and nausea wasn't worth it. Of course I didn't keep the food down, which was just like a kick in the wrong direction. At five in the morning, I woke up with severe nausea and my entire abdomen was on fire!! It turns out the bile was causing this but once I threw it up I was feeling better. I'm still discouraged but we can't give up!! Thank you for all of the wonderful emails I received this morning! You all made my day!
A little about me...
Hi!
My name is Sarah and I was diagnosed with severe Gastroparesis in 2008.
I am 14 years old, and this is a little taste of my journey.
In August 2007, I had a horrible stomach virus, and I ended up in the hospital; at the time it was the sickest I have ever been. Now, at this point in my life, it seems to be a piece of cake.
That is when, my doctors believe, I got Gastroparesis because the virus basically paralyzed my stomach.
Doctors and scientists are not sure of many reasons Gastroparesis is caused, some are born with it, some get it from a virus (like myself), and some people can get it from having an eating disorder because that can really take a toll on your stomach.
A lot of people mistake people with Gastroparesis for having an eating disorder, one of my own past doctors even told my family that it was all in my head (this was before my diagnosis). That is EXTREMELY frustrating and discouraging.
An amazing man in my life, who I am so so lucky to have, my grandfather, told me to always stay positive and to try my hardest to never stop fighting. I think about this everyday, and if you are reading this and are sick yourselves, this is the best mental advice I could give. Not only people with GI motility disorders, but anyone.
Back in 2008, my condition was far better than it is today. I would basically just get full and nauseous after only a few bites of food. Of course my family didn't know any better, and they kept on getting upset at me because I refused to eat. People would always say to me "one more bite, one more bite" and that is exactly what you don't want to say to a GP patient.
Probably about once a month, I would throw up, especially if I ate a rather large meal.
I began seeing GI doctors and I went through a countless number of tests, scans, blood work, colonoscopies, endoscopies, OH and the one where you drink the chalky Barium, etc. Saying that I had around 30 tests is not an exaggeration. It was pretty frustrating, because the majority of them came back normal, and I knew that there was something wrong with my body. Finally, after 1-2 years of testing and un-answered questions I had a Gastric Emptying Study. What this is, is you eat radioactive eggs, and you lay underneath a machine for a few hours to watch how long it would take my stomach to empty the food. I failed the test!! FINALLY! It was so bitter-sweet because of course nobody wants to have a disease, but at least we knew what was wrong with me! I can't really remember the percentage of my stomach emptying back then, but I remember that it wasn't good. I think I have had three more Gastric Emptying Studies to date.
Constipation is an awkward topic to discuss to strangers, but it is another big deal in the lives of people with Gastroparesis. I'm not going to go into detail, but on good days, I usually go to the bathroom once every 6-14 days. Days in between BM's are horrible with discomfort and feeling full after a few bites is so much worse. Even with plenty of laxatives I have ended up in the hospital a number of times from only my colon acting rude! --always stay away from popcorn and matzah...i've learned that the hard way :)
Okay, now that I'm done talking about the nasty stuff (haha) I'll kind of fill you in on how my life has been more recently.
This past February (2011) my stomach pretty much woke up and decided that it no longer wanted to function...isn't that sweet?! Everything I put in my mouth would come back up, including a few sips of water. My AMAZING team of doctors decided to put in an NJ tube to give me nourishment as well as to "test" my stomach. An NJ tube goes directly into the Jejunum, bypassing the stomach. So, the test was to see if I felt better if I took my stomach out of the picture for three weeks. Saying I felt better, was an under-statement. The tube stayed in for the month of February and my doctors surgically injected Botox into the base of my stomach, to stop the spasms and to keep my stomach open on the bottom. It worked pretty well, and I was able to eat really plain things for about three weeks. I lived on bread, angel food cake, and mashed potatoes, but for me that was amazing because I could eat again!
Three weeks later, my stomach gave up again...throwing up everything I put in my mouth all over again.
I had the Botox done a second time (this time a double dose), and it worked fairly well.
I can hardly remember anything that happened in April, because I was hospitalized for a migraine. They gave my too much of a certain medication and I went into another Drug Induced Physocis. This was my second one. Basically what happens is that I cannot remember who I am, where I am, how to work any electronics, etc. My grandmother came over and I kept on screaming because I wasn't comfortable with having a strange woman in my room and I never believed anyone when they told me I was home. I don't remember any of it, and I guess it was a good thing; this is just what my parents told me happened when I was finally recovered.
So, now it is May and yet again my stomach is failing but this time it's not waking up. The Botox has stopped working completely, and of course I can't eat or drink anything. Although I am in pain and I am nauseous 60% of the time, the hunger is the worst part. I am so hungry and EVERYTHING smells and looks so so so good. I have another NJ tube, but that is coming out for my middle school graduation next month. My doctors are stumped, and everyone is frustrated. I will probably have to have a J tube implanted into my abdomen after graduation, but of course I have to stay positive! My doctors are also thinking that I might have to go to Ohio and see Dr. Carlo DiLorenzo. He is the top guy for pediatric GI disorders; he specializes in Gastric Pacing. But yes, now we are just taking it day by day. I have missed almost 50 days of school and I miss my friends and I miss my life. This disease is horrible and so many people have never heard of it. A lot people we know, just think that I just have stomach-aches....I WISH!! :)
I'm not sure what percentage of function my stomach has now, I'm sure if I had another Emptying Study I would just throw up the radioactive food. The last one I had was in January (2011) and my stomach function was 27%, and that was on a good day. Being that I had 27% function in January, I would be scared to know what I have now...probably 14%??? Less?? I have no clue but that is my story!
Everyone with GP should never ever give up, and yes it stinks to have this disease but we have to keep fighting and hopefully sometime in the future there will be a cure! --keep fighting!
xoxo,
Sarah
My name is Sarah and I was diagnosed with severe Gastroparesis in 2008.
I am 14 years old, and this is a little taste of my journey.
In August 2007, I had a horrible stomach virus, and I ended up in the hospital; at the time it was the sickest I have ever been. Now, at this point in my life, it seems to be a piece of cake.
That is when, my doctors believe, I got Gastroparesis because the virus basically paralyzed my stomach.
Doctors and scientists are not sure of many reasons Gastroparesis is caused, some are born with it, some get it from a virus (like myself), and some people can get it from having an eating disorder because that can really take a toll on your stomach.
A lot of people mistake people with Gastroparesis for having an eating disorder, one of my own past doctors even told my family that it was all in my head (this was before my diagnosis). That is EXTREMELY frustrating and discouraging.
An amazing man in my life, who I am so so lucky to have, my grandfather, told me to always stay positive and to try my hardest to never stop fighting. I think about this everyday, and if you are reading this and are sick yourselves, this is the best mental advice I could give. Not only people with GI motility disorders, but anyone.
Back in 2008, my condition was far better than it is today. I would basically just get full and nauseous after only a few bites of food. Of course my family didn't know any better, and they kept on getting upset at me because I refused to eat. People would always say to me "one more bite, one more bite" and that is exactly what you don't want to say to a GP patient.
Probably about once a month, I would throw up, especially if I ate a rather large meal.
I began seeing GI doctors and I went through a countless number of tests, scans, blood work, colonoscopies, endoscopies, OH and the one where you drink the chalky Barium, etc. Saying that I had around 30 tests is not an exaggeration. It was pretty frustrating, because the majority of them came back normal, and I knew that there was something wrong with my body. Finally, after 1-2 years of testing and un-answered questions I had a Gastric Emptying Study. What this is, is you eat radioactive eggs, and you lay underneath a machine for a few hours to watch how long it would take my stomach to empty the food. I failed the test!! FINALLY! It was so bitter-sweet because of course nobody wants to have a disease, but at least we knew what was wrong with me! I can't really remember the percentage of my stomach emptying back then, but I remember that it wasn't good. I think I have had three more Gastric Emptying Studies to date.
Constipation is an awkward topic to discuss to strangers, but it is another big deal in the lives of people with Gastroparesis. I'm not going to go into detail, but on good days, I usually go to the bathroom once every 6-14 days. Days in between BM's are horrible with discomfort and feeling full after a few bites is so much worse. Even with plenty of laxatives I have ended up in the hospital a number of times from only my colon acting rude! --always stay away from popcorn and matzah...i've learned that the hard way :)
Okay, now that I'm done talking about the nasty stuff (haha) I'll kind of fill you in on how my life has been more recently.
This past February (2011) my stomach pretty much woke up and decided that it no longer wanted to function...isn't that sweet?! Everything I put in my mouth would come back up, including a few sips of water. My AMAZING team of doctors decided to put in an NJ tube to give me nourishment as well as to "test" my stomach. An NJ tube goes directly into the Jejunum, bypassing the stomach. So, the test was to see if I felt better if I took my stomach out of the picture for three weeks. Saying I felt better, was an under-statement. The tube stayed in for the month of February and my doctors surgically injected Botox into the base of my stomach, to stop the spasms and to keep my stomach open on the bottom. It worked pretty well, and I was able to eat really plain things for about three weeks. I lived on bread, angel food cake, and mashed potatoes, but for me that was amazing because I could eat again!
Three weeks later, my stomach gave up again...throwing up everything I put in my mouth all over again.
I had the Botox done a second time (this time a double dose), and it worked fairly well.
I can hardly remember anything that happened in April, because I was hospitalized for a migraine. They gave my too much of a certain medication and I went into another Drug Induced Physocis. This was my second one. Basically what happens is that I cannot remember who I am, where I am, how to work any electronics, etc. My grandmother came over and I kept on screaming because I wasn't comfortable with having a strange woman in my room and I never believed anyone when they told me I was home. I don't remember any of it, and I guess it was a good thing; this is just what my parents told me happened when I was finally recovered.
So, now it is May and yet again my stomach is failing but this time it's not waking up. The Botox has stopped working completely, and of course I can't eat or drink anything. Although I am in pain and I am nauseous 60% of the time, the hunger is the worst part. I am so hungry and EVERYTHING smells and looks so so so good. I have another NJ tube, but that is coming out for my middle school graduation next month. My doctors are stumped, and everyone is frustrated. I will probably have to have a J tube implanted into my abdomen after graduation, but of course I have to stay positive! My doctors are also thinking that I might have to go to Ohio and see Dr. Carlo DiLorenzo. He is the top guy for pediatric GI disorders; he specializes in Gastric Pacing. But yes, now we are just taking it day by day. I have missed almost 50 days of school and I miss my friends and I miss my life. This disease is horrible and so many people have never heard of it. A lot people we know, just think that I just have stomach-aches....I WISH!! :)
I'm not sure what percentage of function my stomach has now, I'm sure if I had another Emptying Study I would just throw up the radioactive food. The last one I had was in January (2011) and my stomach function was 27%, and that was on a good day. Being that I had 27% function in January, I would be scared to know what I have now...probably 14%??? Less?? I have no clue but that is my story!
Everyone with GP should never ever give up, and yes it stinks to have this disease but we have to keep fighting and hopefully sometime in the future there will be a cure! --keep fighting!
xoxo,
Sarah
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