On the 24th, I woke up with a headache - the same headache I've had for a while now. I can only describe it as a dehydration headache.
Do you ever have the feeling that sometimes you're an easy target because you're sick, and usually alone? I've felt that way the past week. I have certain friends who don't usually want anything to do with me until they need or want something. It shouldn't bother me, but it does. I felt I should write about it public-ally because it makes me feel worse than I already do. I also have a bad habit of not saying no. I need to fix this issue but then I'll be called selfish behind my back. I think I care too much about what other people think about me. It's a problem that I've had since middle school and I'm really not sure how to turn that switch off. But, I do need to find the off button. The last thing I need is to make myself even more ill over what someone thinks about me.
I think I have too much time to think. =)
My symptoms are still:
1. Swollen throat - it's hard to sip on water or swallow anything still.
2. Headache - my head still aches and my best guess is that it's because of dehydration.
3. Fever - chills and fever above 101. I can't keep down pills to get rid of it.
4. Teeth - my teeth are really sensitive on both sides so I can't really chew.
5. Vomiting/nausea - vomiting up green stomach acid. There is nothing left in my stomach and I have a dry mouth, too.
I'm going to take what medications I'm still allowed to take and lie down for a bit. I shouldn't be tired but I keep almost falling asleep, even just sitting up typing. I feel awful and a bit sad.
On the 26th, I didn't sleep for two days. I'm exhausted but it's been hard for me to sleep without getting up to vomit or from bouts of pain. I've had terrible, gastric spasms. I call them, "gastroparesis attacks." Everyone is pretty worried about me. I've also vomited myself into a throat infection and now, I'm on antibiotics, if I can keep them down.
I vomited day before yesterday and got fluids at the doctor. My blood pressure was 145/105. I was running a fever and I just want to cry. I'm terrified. I'm tired of vomiting and I'm tired of pain. The IV had to go into my foot because the nurse couldn't find veins anywhere else.
I go back to Mayo next week. I hope that they're able to help me. I'm having lab work done on Monday and I'm there for the entire week full of testing. I hope they'll hospitalize me and give me fluids. My urine is also dark in color which tells me that I'm dehydrated - that and I've only gone to the bathroom once today. That's not a good sign.
I had Miso soup and hot tea for dinner. I'm trying to do clear liquids. The Gatorade keeps coming back up so, I'm going to try clear liquids for a bit. I'm incredibly tired and I hope that I can sleep tonight. I managed to fall asleep around 2pm yesterday - just out of pure exhaustion. I didn't wake up until 1pm today. I hope I can sleep tonight because I REALLY need the rest.
I hope that my GP friends have a pain free and nausea free night. <3
The idea was suggested to me (by my MD) that a blog/diary might help me feel better by venting my frustrations and struggles with Gastroparesis. Also, I hope I can help others who may have the same thing through my own experiences. For more information, please email: emilysstomach[at]gmail.com or follow on Twitter: http://twitter.com/emilysstomach or like us on Facebook: http://www.facebook.com/emilysstomach or Instagram: http://www.instagram.com/emilysstomach
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Monday, January 28, 2013
Thursday, January 24, 2013
Gastroparesis Inspired Art
I'm looking for Gastroparesis inspired jewelry, art, and clothing. I have a few friends who are working on art to share with the rest of the GP community. If you're like me, then you probably don't have a lot of green clothing or GP related jewelry items or wrist bands. If you find great Gastroparesis type art, please leave me a comment with a link and a description! I love to see and learn about new things - websites, etc.
For Gastroparesis Inspired Jewelry:
NERDY GIRL CREATIONS ON ETSY. This is a Green's Not Easy Member's friend who makes jewelry. She's amazingly talented and decided to help further our cause for awareness by making GP themed jewelry. An example of her work is below:
JUST BREATHE JEWELRY. This is a collection of handmade, from scratch, unique and chic jewelry, created in part to donate to gastroparesis research! Use Coupon Code BLYSSBREATHEXX for free shipping! As always, $1.00 of every purchase goes to the GPD Foundation for a cure for gastroparesis! An example of her work is below:
GASTROPARESIS INSPIRED JEWELRY BY LORA ON FACEBOOK.
For Gastroparesis Inspired Art:
RARE ARTIST. EveryLife's Art Contest for Rare Diseases 2013 is accepting submissions! www.RareArtist.org The Art Contest was established to empower those affected by rare diseases to express their unique power through art. Please share the invitation, & share your art! This image, "Trusting Hands", won a special artistic merit award in our 2011 contest, by Gastroparesis patient Shelley Bertrand. RareArtist.org was created for artists affected by a rare disease. The EveryLife Foundation for Rare Diseases received many exceptional works of art during our inaugural EveryLife Art Contest which inspired us to create a venue to display this art. It is intended to showcase the Artwork and the Artist, in order to bring awareness to the rare disease community. There are almost 7,000 rare diseases that affect more than 25 million Americans. For more information on the EveryLife Foundation for Rare Diseases’s work to support the rare disease community please visit www.everylifefoundation.org.
For Gastroparesis Ribbons and Wrist Bands:
A member of the GASTROPARESIS Facebook group as designed awareness ribbons for GP. He is in the very beginnings of creating this magnetic ribbon by getting price quotes and coming up with a plan to sell them in bulk, either in his own store or somewhere else. He wants to donate all proceeds to GP research. As soon as the link is available to order these ribbons, I will post it. The image of the ribbon is below:
For Gastroparesis Inspired Jewelry:
NERDY GIRL CREATIONS ON ETSY. This is a Green's Not Easy Member's friend who makes jewelry. She's amazingly talented and decided to help further our cause for awareness by making GP themed jewelry. An example of her work is below:
JUST BREATHE JEWELRY. This is a collection of handmade, from scratch, unique and chic jewelry, created in part to donate to gastroparesis research! Use Coupon Code BLYSSBREATHEXX for free shipping! As always, $1.00 of every purchase goes to the GPD Foundation for a cure for gastroparesis! An example of her work is below:
GASTROPARESIS INSPIRED JEWELRY BY LORA ON FACEBOOK.
Gastroparesis is an insidious disease meaning literally "stomach paralysis". An estimated 5 million American's suffer from this disease, which causes them to slowly starve to death, because they can't eat the food in front of them. Many suffer from malnutrition because their bodies simply cannot process food/nutrients appropriately. This her way of helping to build awareness. An example of her work is below:


For Gastroparesis Inspired Art:
RARE ARTIST. EveryLife's Art Contest for Rare Diseases 2013 is accepting submissions! www.RareArtist.org The Art Contest was established to empower those affected by rare diseases to express their unique power through art. Please share the invitation, & share your art! This image, "Trusting Hands", won a special artistic merit award in our 2011 contest, by Gastroparesis patient Shelley Bertrand. RareArtist.org was created for artists affected by a rare disease. The EveryLife Foundation for Rare Diseases received many exceptional works of art during our inaugural EveryLife Art Contest which inspired us to create a venue to display this art. It is intended to showcase the Artwork and the Artist, in order to bring awareness to the rare disease community. There are almost 7,000 rare diseases that affect more than 25 million Americans. For more information on the EveryLife Foundation for Rare Diseases’s work to support the rare disease community please visit www.everylifefoundation.org.
For Gastroparesis Ribbons and Wrist Bands:
A member of the GASTROPARESIS Facebook group as designed awareness ribbons for GP. He is in the very beginnings of creating this magnetic ribbon by getting price quotes and coming up with a plan to sell them in bulk, either in his own store or somewhere else. He wants to donate all proceeds to GP research. As soon as the link is available to order these ribbons, I will post it. The image of the ribbon is below:
Tuesday, January 22, 2013
It's Not Easy Being Green: Hold On or Let Go?
This is from the blog of one of my former friends and the creator of the Green's Not Easy Page on Facebook; She started writing a blog based on her experiences and I would like to reblog this because it's a great article on how relationships change when you have an invisible illness. Please click on the link below to read her blog entry:
It's Not Easy Being Green: Hold On or Let Go?: One of the largest struggles I’ve had to overcome since I’ve been sick is how to deal with social situations.
If you have gastroparesis and you're looking for a support group, please click to join the Gastroparesis Support Group on Facebook: http://www.facebook.com/groups/StrongerthanGP/
It's Not Easy Being Green: Hold On or Let Go?: One of the largest struggles I’ve had to overcome since I’ve been sick is how to deal with social situations.
If you have gastroparesis and you're looking for a support group, please click to join the Gastroparesis Support Group on Facebook: http://www.facebook.com/groups/StrongerthanGP/
Detoxing - Twelve Days to go Until Mayo
This past week has by far been the hardest I've ever had to endure, GI wise. I didn't realize how much of the medication actually did help, even though I was still sick on the medication. This detox is like being in my own, personal hell. The stomach spasms have not subsided, even though the last time I ate was the day before yesterday and it was just broth. My throat burns, and is swollen from vomiting up bile. I can barely swallow the pills I'm still allowed to take. The Zofran does nothing and I took my last Phenergan pill tonight.
I hope the doctor will call in a refill tomorrow (or later today). At the specialist today, while I was having my spinal cord stimulator checked to make sure it was scarring in all right, my blood pressure was 145/105. I'm guessing that's because of staying up vomiting for two days and the gastric spasms. My blood pressure always sky rockets when I'm in pain. Since my blood pressure had been fine the previous times I had seen that specialist, he wasn't worried. Since I can't take the Vicodin right now for the surgical pain where my stimulator is still scarring in, he prescribed me lidoderm patches to wear throughout the night or day to numb the spot where the muscles are still inflamed. He said it's going to take a while longer for my body to stop fighting the fact that it has a foreign object there. He also told me that if I notice that the stimulator isn't covering the area it's supposed to or if it's taking longer than usual to charge, to let him know and he would call the Boston Scientific Representative in to tweak the stimulator to adjust it. He said that I'm probably going to need it adjusted a few more times since it's still in the process of scarring in.
My throat is so irritated. I might try to drink some hot tea and honey to see if it will soothe the irritation. Sadly, the only juice in the house is cranberry and I can't stand cranberry juice. It's too bitter for me to handle right now. I managed to drink all of the apple juice.
Twelve days to go until my week of testing. I just don't know how I'm going to make it through the next twelve days. This almost feels like cruel and unusual punishment. I feel like I have a charlie horse in my belly along with someone hitting me in the stomach with a metal bat over and over again. The gastric spasms keep inducing vomiting, which is just dry heaves right now because there's nothing left to come up. I've burnt my throat and I'm miserable.
I'm tempted to take a pain pill just to get some sort of relief and to be able to sleep but I don't want to screw up any testing that Mayo will do. I really want them to find the issue that's making the Gastroparesis worse and fix it.
I was hoping to get out of the house tomorrow. I have a project I want to do as a gift to my husband for Valentine's (I usually call it, "the Hallmark holiday") Day. I'm scared with the way things have been going, I was lucky enough to make it to the doctor and back today.
My stomach is swollen and hard to the touch right now. It's been that way for three days. I'm not quite sure why and it's a bit scary.
This is night two of staying up without sleep. I'm so exhausted and I wish I could just pass out. The Nature Made Sleep Aid isn't helping and my throat is killing me. I may have to go to my primary doctor tomorrow. Maybe he can give me some advice on what to do while I'm detoxing. I have chloraseptic spray - but I can only use it so often.
I just really need some sleep. I think that would make a world of difference.
I hope the doctor will call in a refill tomorrow (or later today). At the specialist today, while I was having my spinal cord stimulator checked to make sure it was scarring in all right, my blood pressure was 145/105. I'm guessing that's because of staying up vomiting for two days and the gastric spasms. My blood pressure always sky rockets when I'm in pain. Since my blood pressure had been fine the previous times I had seen that specialist, he wasn't worried. Since I can't take the Vicodin right now for the surgical pain where my stimulator is still scarring in, he prescribed me lidoderm patches to wear throughout the night or day to numb the spot where the muscles are still inflamed. He said it's going to take a while longer for my body to stop fighting the fact that it has a foreign object there. He also told me that if I notice that the stimulator isn't covering the area it's supposed to or if it's taking longer than usual to charge, to let him know and he would call the Boston Scientific Representative in to tweak the stimulator to adjust it. He said that I'm probably going to need it adjusted a few more times since it's still in the process of scarring in.
My throat is so irritated. I might try to drink some hot tea and honey to see if it will soothe the irritation. Sadly, the only juice in the house is cranberry and I can't stand cranberry juice. It's too bitter for me to handle right now. I managed to drink all of the apple juice.
Twelve days to go until my week of testing. I just don't know how I'm going to make it through the next twelve days. This almost feels like cruel and unusual punishment. I feel like I have a charlie horse in my belly along with someone hitting me in the stomach with a metal bat over and over again. The gastric spasms keep inducing vomiting, which is just dry heaves right now because there's nothing left to come up. I've burnt my throat and I'm miserable.
I'm tempted to take a pain pill just to get some sort of relief and to be able to sleep but I don't want to screw up any testing that Mayo will do. I really want them to find the issue that's making the Gastroparesis worse and fix it.
I was hoping to get out of the house tomorrow. I have a project I want to do as a gift to my husband for Valentine's (I usually call it, "the Hallmark holiday") Day. I'm scared with the way things have been going, I was lucky enough to make it to the doctor and back today.
My stomach is swollen and hard to the touch right now. It's been that way for three days. I'm not quite sure why and it's a bit scary.
This is night two of staying up without sleep. I'm so exhausted and I wish I could just pass out. The Nature Made Sleep Aid isn't helping and my throat is killing me. I may have to go to my primary doctor tomorrow. Maybe he can give me some advice on what to do while I'm detoxing. I have chloraseptic spray - but I can only use it so often.
I just really need some sleep. I think that would make a world of difference.
Monday, January 21, 2013
My Medical History Story & Patient Rights
I want to take a moment to tell you about some of my medical history. I know that a lot of my entries are about present events, but there were a lot of events that led up to where I am now.
It all started when I was in high school, in 2000. I was sixteen years old and I was very, very ill. The illness just sprung on me, like a tiger waiting to pounce. It started with a fever, and I remember being in so much physical pain. I remember riding the bus to school and vomiting on the bus. The bus driver made me wait in the seat I vomited in until everyone got off of the bus. I remember being ashamed and embarrassed as all of their judgmental eyes passed over me as they left the bus, one by one. After everyone had gone, the bus driver gave me paper towels and cleaner and told me to clean up my mess myself and that she wasn't touching it. Sadly, I didn't know enough then to challenge her or just get off of the bus. I remember other mornings where I would walk to class with my best friend Paul, and just start vomiting. This one instance stands out in my mind. We were walking to class and had to pass through a breezeway outside, when I felt the urge to vomit. There was no where to run, I had to get sick then and there so I ran to the side of the high school building and vomited into the grass. I remember Paul holding my hair back for me and telling everyone who passed by that I had bad Chinese food the night before. He stayed with me until my episode was over and walked to the office with me so that I could call my mother.
I vomited up everything I ate and slept for three days. My mother, when I wouldn't get out of bed, felt my head and realized I was running a fever. I remember wrapping my comforter around me and getting into the car while she drove me to the ER. When I got there, I kept vomiting up bile, pretty much constantly. The doctor pressed on my abdomen and I vomited more. He thought that since my pain was on my lower left side that I might have appendicitis. I was admitted into the hospital when he finally reached my doctor.
I don't remember much after that. I was in a haze of pain medications, nausea medications, and just exhausted. The doctor that I normally saw came in to see me in my hospital room a few times and I went in for emergency surgery. They did an EXPLORATORY LAPAROSCOPY on me and took pictures while the doctors were looking for the causes of my sudden illness.
When I came to, in recovery, I was taken back to my hospital room. They gave me more pain medication because my belly was very swollen from the gas they pump in during the surgery and the surgical incisions. The doctors went in through my belly button and my lower left side. I remember being really angry because my aunt had the pictures the doctors took of my abdomen and I remember yelling at her and reducing her to tears because I wanted to see what had made me feel so miserable. Did I mention that I am really mean on pain medication? I don't know why I have that side effect, but I do. I apologized to my aunt later and now everyone laughs about it.
The doctors found that I had ovarian cysts. This can be normal in women but mine were pretty big. They removed some of the cysts and some had ruptured, leaving fluid behind that caused an infection. I also had endometrosis. I was utterly shocked because I was only sixteen. I didn't realize that my vomiting and pain could be something like that, because I remember thinking that it must have been some sort of virus. I had never seen anyone else that sick in high school. The doctor also informed me that he took out my appendix anyway, just in case.
My classmates from Chemistry came to visit me while I was in the hospital, bringing me a card signed by everyone (which I still have), and wished me a speedy recovery.
From then on, I would vomit and get really ill on and off, for years.
I became really ill in 2005. I had abdominal pain and my symptoms were the same as they were before. I went to the GYN and told them about my history. They ordered another exploratory surgery and found a few small cysts, but nothing out of the ordinary. They found a few lesions that were removed but nothing to explain my symptoms. Eventually, I was fired from work because I couldn't come in due to vomiting and missing too many days. I stayed miserable for the next few years with the abdominal pain and vomiting.
I went from doctor to doctor, only to be told that there was nothing wrong with me and that what I was experiencing was in my head. After a while, I started to believe them, but I never gave up. That's the important part of all of this - NEVER GIVE UP! You know your body better than any doctor does.
In 2010, a friend of mine suggested that I see another GI doctor. I had been blindly following what doctors had been telling me for five years previously, so what would be the harm in getting another opinion? This was the first time I became my own advocate. I didn't realize that patients had rights. How could I? No one had ever told me. So, I started doing research and found a GI doctor covered by my husband's health insurance, close to our house. I made an appointment and started doing research online about my symptoms. I began to take down questions to bring with me to ask the doctor. I didn't get all of my medical records together because there were scattered in so many different places. My doctor in my hometown had hundreds of pages on me alone, my file was the size of a textbook!
So, I went to my new GI doctor and brought questions, my symptoms, and what I had eaten/gotten sick. He listened to me and poked around my belly for a bit. He looked at me and told me that I needed a HIDA SCAN to confirm his suspicions. He thought that my problem was my gallbladder but wanted to make sure, first. This seemed reasonable to me, so I went to the hospital for my scan. The procedure HURT SO MUCH! I cried during it because of the pain when the dye hit. This wasn't a normal reaction. Usually, the scans are supposed to be painless.
After the scan, I reported back to my doctor. He looked at my results and told me that my gallbladder was functioning at only 15% and sent me down the street to the general surgeon. The surgeon was amazing. He answered all of my questions about the surgery, and took the time to examine me. Upon further examining, and realizing I hadn't eaten in a week, decided to hospitalize me. I waited in the hospital for a few days while he gave me medications for pain and nausea, as well as re-hydrating me. My fever ran close to 105. So, I had the surgery.
The OR staff came and wheeled by hospital bed down to the operating room. They waited for the doctor to come in before they gave me the medicine to relax me. When the doctor entered the room (and OR's are freezing), and they gave me Versed to relax me while the surgeon prepared for my gallbladder removal. I remember, after they gave me the medicine, that I told him that I hoped that it wouldn't be like the scene from SPACEBALLS where the alien pops out of me and does a dance across the OR. The surgeon cracked up as the anesthesiologist put me under.
The surgery itself wasn't too bad. I was up and walking around the next day. I remember that the surgeon came into my room and told me that my gallbladder was the nastiest thing he'd ever seen. As it turned out, my gallbladder was NECROTIC. So, I'm glad that I got that second opinion and didn't listen to the other doctors.
After that, well, as you well know, I've had nerve damage and more complications. In March of 2012, I was hospitalized for what the doctors thought was a terrible stomach virus. I received every test under the sun. I was vomiting up everything, even water. They decided to do a Gastric Emptying Scan on me, which I had never heard of. The doctor told me he was testing me for Gastroparesis, but I had never heard of it. My scan came back saying that after four hours, my stomach was only emptying at 36%. My GI diagnosed me with a mild case of Gastroparesis and discharged me after he did the ERCP procedure (which can be found in another blog entry of mine).
I went home and researched Gastroparesis, but aside from Stephanie's and Crystal's blogs/websites, and Mayo's of course, I couldn't find anything else on it. I decided to start my own blog and I helped start a facebook page that I'm no longer a part of, but I helped it grow. I've started my own facebook pages and groups, and they have been pretty popular online. However, my stomach, even with medications and a botox injection, has quite been the same.
I vomit daily (6 to 8 times, if I'm lucky). I'm seeing a Mayo Clinic Specialist, but I'm still my own advocate.
I want everyone to be aware that they have RIGHTS as a patient. They are but not limited to:
Don't EVER let any doctor tell you otherwise. If you aren't getting the care you need, don't wait like I did. Don't be miserable for five years, almost destroy your marriage, and friendships. Keep searching until you find someone who will take the time to listen to you and give you treatment. No one should have to suffer when there's so much that modern medicine can offer. <3 More about patient's rights and what they are can be found HERE, HERE, and HERE.
Also, Valentine's Day is coming up. There is a movement going around in the Gastroparesis communities to wear green on the 14th of February. This image was made by one of my fellow Gastroparesis fighters. I know that Valentine's Day is a celebration of love. People normally wear reds, pinks, and purple hues, but how about showing a different kind of love and support this year? Will you please wear green to show support and love to those of us with this illness?
We are asking that you stand with us in unity to show support. It's a small thing to ask to support me as well as other GP fighters out there. We can't eat the Valentine's candy and most of us can't even sit in a restaurant because the smells make us ill. It would be appreciated so much. If you could take a picture, we can compile them to make an awareness video to show people that GP is out there and people know it exists.
No awareness, no research, no cure.
This picture was made based on the Spoon Theory: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
These images can also be found on our PINTEREST PAGE.
It all started when I was in high school, in 2000. I was sixteen years old and I was very, very ill. The illness just sprung on me, like a tiger waiting to pounce. It started with a fever, and I remember being in so much physical pain. I remember riding the bus to school and vomiting on the bus. The bus driver made me wait in the seat I vomited in until everyone got off of the bus. I remember being ashamed and embarrassed as all of their judgmental eyes passed over me as they left the bus, one by one. After everyone had gone, the bus driver gave me paper towels and cleaner and told me to clean up my mess myself and that she wasn't touching it. Sadly, I didn't know enough then to challenge her or just get off of the bus. I remember other mornings where I would walk to class with my best friend Paul, and just start vomiting. This one instance stands out in my mind. We were walking to class and had to pass through a breezeway outside, when I felt the urge to vomit. There was no where to run, I had to get sick then and there so I ran to the side of the high school building and vomited into the grass. I remember Paul holding my hair back for me and telling everyone who passed by that I had bad Chinese food the night before. He stayed with me until my episode was over and walked to the office with me so that I could call my mother.
I vomited up everything I ate and slept for three days. My mother, when I wouldn't get out of bed, felt my head and realized I was running a fever. I remember wrapping my comforter around me and getting into the car while she drove me to the ER. When I got there, I kept vomiting up bile, pretty much constantly. The doctor pressed on my abdomen and I vomited more. He thought that since my pain was on my lower left side that I might have appendicitis. I was admitted into the hospital when he finally reached my doctor.
I don't remember much after that. I was in a haze of pain medications, nausea medications, and just exhausted. The doctor that I normally saw came in to see me in my hospital room a few times and I went in for emergency surgery. They did an EXPLORATORY LAPAROSCOPY on me and took pictures while the doctors were looking for the causes of my sudden illness.
When I came to, in recovery, I was taken back to my hospital room. They gave me more pain medication because my belly was very swollen from the gas they pump in during the surgery and the surgical incisions. The doctors went in through my belly button and my lower left side. I remember being really angry because my aunt had the pictures the doctors took of my abdomen and I remember yelling at her and reducing her to tears because I wanted to see what had made me feel so miserable. Did I mention that I am really mean on pain medication? I don't know why I have that side effect, but I do. I apologized to my aunt later and now everyone laughs about it.
The doctors found that I had ovarian cysts. This can be normal in women but mine were pretty big. They removed some of the cysts and some had ruptured, leaving fluid behind that caused an infection. I also had endometrosis. I was utterly shocked because I was only sixteen. I didn't realize that my vomiting and pain could be something like that, because I remember thinking that it must have been some sort of virus. I had never seen anyone else that sick in high school. The doctor also informed me that he took out my appendix anyway, just in case.
My classmates from Chemistry came to visit me while I was in the hospital, bringing me a card signed by everyone (which I still have), and wished me a speedy recovery.
From then on, I would vomit and get really ill on and off, for years.
I became really ill in 2005. I had abdominal pain and my symptoms were the same as they were before. I went to the GYN and told them about my history. They ordered another exploratory surgery and found a few small cysts, but nothing out of the ordinary. They found a few lesions that were removed but nothing to explain my symptoms. Eventually, I was fired from work because I couldn't come in due to vomiting and missing too many days. I stayed miserable for the next few years with the abdominal pain and vomiting.
I went from doctor to doctor, only to be told that there was nothing wrong with me and that what I was experiencing was in my head. After a while, I started to believe them, but I never gave up. That's the important part of all of this - NEVER GIVE UP! You know your body better than any doctor does.
In 2010, a friend of mine suggested that I see another GI doctor. I had been blindly following what doctors had been telling me for five years previously, so what would be the harm in getting another opinion? This was the first time I became my own advocate. I didn't realize that patients had rights. How could I? No one had ever told me. So, I started doing research and found a GI doctor covered by my husband's health insurance, close to our house. I made an appointment and started doing research online about my symptoms. I began to take down questions to bring with me to ask the doctor. I didn't get all of my medical records together because there were scattered in so many different places. My doctor in my hometown had hundreds of pages on me alone, my file was the size of a textbook!
So, I went to my new GI doctor and brought questions, my symptoms, and what I had eaten/gotten sick. He listened to me and poked around my belly for a bit. He looked at me and told me that I needed a HIDA SCAN to confirm his suspicions. He thought that my problem was my gallbladder but wanted to make sure, first. This seemed reasonable to me, so I went to the hospital for my scan. The procedure HURT SO MUCH! I cried during it because of the pain when the dye hit. This wasn't a normal reaction. Usually, the scans are supposed to be painless.
After the scan, I reported back to my doctor. He looked at my results and told me that my gallbladder was functioning at only 15% and sent me down the street to the general surgeon. The surgeon was amazing. He answered all of my questions about the surgery, and took the time to examine me. Upon further examining, and realizing I hadn't eaten in a week, decided to hospitalize me. I waited in the hospital for a few days while he gave me medications for pain and nausea, as well as re-hydrating me. My fever ran close to 105. So, I had the surgery.
The OR staff came and wheeled by hospital bed down to the operating room. They waited for the doctor to come in before they gave me the medicine to relax me. When the doctor entered the room (and OR's are freezing), and they gave me Versed to relax me while the surgeon prepared for my gallbladder removal. I remember, after they gave me the medicine, that I told him that I hoped that it wouldn't be like the scene from SPACEBALLS where the alien pops out of me and does a dance across the OR. The surgeon cracked up as the anesthesiologist put me under.
The surgery itself wasn't too bad. I was up and walking around the next day. I remember that the surgeon came into my room and told me that my gallbladder was the nastiest thing he'd ever seen. As it turned out, my gallbladder was NECROTIC. So, I'm glad that I got that second opinion and didn't listen to the other doctors.
After that, well, as you well know, I've had nerve damage and more complications. In March of 2012, I was hospitalized for what the doctors thought was a terrible stomach virus. I received every test under the sun. I was vomiting up everything, even water. They decided to do a Gastric Emptying Scan on me, which I had never heard of. The doctor told me he was testing me for Gastroparesis, but I had never heard of it. My scan came back saying that after four hours, my stomach was only emptying at 36%. My GI diagnosed me with a mild case of Gastroparesis and discharged me after he did the ERCP procedure (which can be found in another blog entry of mine).
I went home and researched Gastroparesis, but aside from Stephanie's and Crystal's blogs/websites, and Mayo's of course, I couldn't find anything else on it. I decided to start my own blog and I helped start a facebook page that I'm no longer a part of, but I helped it grow. I've started my own facebook pages and groups, and they have been pretty popular online. However, my stomach, even with medications and a botox injection, has quite been the same.
I vomit daily (6 to 8 times, if I'm lucky). I'm seeing a Mayo Clinic Specialist, but I'm still my own advocate.
I want everyone to be aware that they have RIGHTS as a patient. They are but not limited to:
The right to receive information from physicians and to discuss the benefits, risks, and costs of appropriate treatment alternatives.
The right to make decisions regarding the health care that is recommended by the physician.
The right to courtesy, respect, dignity, responsiveness, and timely attention to health needs.
The right to confidentiality.
The right to continuity of health care.
The basic right to have adequate health care.
Don't EVER let any doctor tell you otherwise. If you aren't getting the care you need, don't wait like I did. Don't be miserable for five years, almost destroy your marriage, and friendships. Keep searching until you find someone who will take the time to listen to you and give you treatment. No one should have to suffer when there's so much that modern medicine can offer. <3 More about patient's rights and what they are can be found HERE, HERE, and HERE.
Also, Valentine's Day is coming up. There is a movement going around in the Gastroparesis communities to wear green on the 14th of February. This image was made by one of my fellow Gastroparesis fighters. I know that Valentine's Day is a celebration of love. People normally wear reds, pinks, and purple hues, but how about showing a different kind of love and support this year? Will you please wear green to show support and love to those of us with this illness?
We are asking that you stand with us in unity to show support. It's a small thing to ask to support me as well as other GP fighters out there. We can't eat the Valentine's candy and most of us can't even sit in a restaurant because the smells make us ill. It would be appreciated so much. If you could take a picture, we can compile them to make an awareness video to show people that GP is out there and people know it exists.
No awareness, no research, no cure.
This picture was made based on the Spoon Theory: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
These images can also be found on our PINTEREST PAGE.
Sunday, January 20, 2013
Debilitating Stomach Spasms & Miserable - Day 5 of Detox
I am trying to eat and even liquids like Miso soup or an ice cream milkshake cause debilitating stomach spasms that immediately start 20 to 30 minutes after I eat/drink it. The left part of my throat under my mouth is swollen and is painful. I think that could be from vomiting up bile, but I'm not sure. The headaches are still rather painful. I've been trying to drink apple juice and water in case it's a dehydration headache.
The spasms hurt so much. I almost cried several times today. I had to hold on to the counter and try to breathe through them. It felt like I had a charlie horse in my stomach. It just hurt so much and so intensely that I ended up vomiting up everything I had eaten for lunch.
I really wish I could take my medicine. I'm using Quease Ease and Preggie Pops, hoping they'll help. I managed to vomit myself into exhaustion today because I made the mistake of eating last night.
I'm sipping on Gatorade and trying to rehydrate myself to get rid of this severe headache that I've had for several days. It doesn't seem to be budging. I'm watching Doctor Who and trying to distract myself. I had friends over last night that distracted me from feeling awful, and that did help! I've missed hanging out with people.
I got to leave the house for a little while to help my husband shop for a Microwave, carrying bags and emergency vomiting supplies in my purse. I was fine for a bit but eventually, I had to go home because the illness hit with a vengeance.
People constantly tell me that I don't look sick, that I look really good. I don't feel very good. I'm going to share something with you that one of my friends on the Green's Not Easy Page. It's called THE SPOON THEORY. You should click on the link and read it. It applies to everyone with a chronic illness.
I'm just incredibly tired and I'm really tired of being ill. I'm scared to go back to Mayo Clinic the first week of February for testing. I'm terrified that either they're going to find something truly horrible making my GP worse, or nothing at all. I'm scared that I'm never truly going to stop vomiting long enough to finish my Geology degree. I'm scared I won't be able to work while my husband goes back to school. I want to repay my husband for all of the kindness and patience he's shown me but I'm just scared I'm not going to get better at all. I'm just miserable and I miss my friends. I miss being able to eat even simple things, like soup. I miss not being in pain.
I know all of this sounds incredibly selfish. That makes me feel guilty. I know there are so many people out there worse off than I am, and I constantly think of those people and hope they find some relief. I hope for all of our sakes, that someone will research GP and come up with a cure.
The spasms hurt so much. I almost cried several times today. I had to hold on to the counter and try to breathe through them. It felt like I had a charlie horse in my stomach. It just hurt so much and so intensely that I ended up vomiting up everything I had eaten for lunch.
I really wish I could take my medicine. I'm using Quease Ease and Preggie Pops, hoping they'll help. I managed to vomit myself into exhaustion today because I made the mistake of eating last night.
I'm sipping on Gatorade and trying to rehydrate myself to get rid of this severe headache that I've had for several days. It doesn't seem to be budging. I'm watching Doctor Who and trying to distract myself. I had friends over last night that distracted me from feeling awful, and that did help! I've missed hanging out with people.
I got to leave the house for a little while to help my husband shop for a Microwave, carrying bags and emergency vomiting supplies in my purse. I was fine for a bit but eventually, I had to go home because the illness hit with a vengeance.
People constantly tell me that I don't look sick, that I look really good. I don't feel very good. I'm going to share something with you that one of my friends on the Green's Not Easy Page. It's called THE SPOON THEORY. You should click on the link and read it. It applies to everyone with a chronic illness.
I'm just incredibly tired and I'm really tired of being ill. I'm scared to go back to Mayo Clinic the first week of February for testing. I'm terrified that either they're going to find something truly horrible making my GP worse, or nothing at all. I'm scared that I'm never truly going to stop vomiting long enough to finish my Geology degree. I'm scared I won't be able to work while my husband goes back to school. I want to repay my husband for all of the kindness and patience he's shown me but I'm just scared I'm not going to get better at all. I'm just miserable and I miss my friends. I miss being able to eat even simple things, like soup. I miss not being in pain.
I know all of this sounds incredibly selfish. That makes me feel guilty. I know there are so many people out there worse off than I am, and I constantly think of those people and hope they find some relief. I hope for all of our sakes, that someone will research GP and come up with a cure.
Friday, January 18, 2013
Detox - Day 3
I've been off of most of my medications for a few days now. The only ones I'm taking are Zanaflex 4mg, Phenergan 25mg, Ambien 5mg, Zofran 4mg, Xanax 0.05mg, and I'm weaning myself off of the Zoloft and Nortriptyline, since I can't just stop those cold turkey.
I need to ask the doctor for something stronger for insomnia. The Ambien 5mg just doesn't really work for me. I also need to ask the doctor if he could up my dose of Xanax for this month because just thinking about the future gives me a panic attack. I am so anxious that they aren't going to find anything or if they do, it will be horrible.
I also have really, really intense stomach spasms. They come in waves and all I can do is double over and not move. I try to breathe through them but that doesn't really help. It's almost like having a charlie horse in my abdomen. All I had today was a tiny bit of chicken and a small helping of rice. After I ate that, it took about thirty minutes for the gastric spasms to start.
The headache is also still lingering but I'm not sure if that's from dehydration or if it's from detoxing from all of the medications I'm not longer taking. I'm so exhausted and so weak. I've been sleeping a lot in the past few days because I'm just worn out. I thought about trying to finish some of my short stories and send them to publishers as a collection to see if anyone would publish them. I have great vivid dreams that would make amazing stories but I'm out of practice in writing. I've been writing research papers the past few years, so I am out of practice with creative writing. It would make me happy to have something of mine published. When I was a kid, I remember wanting to be a writer. It seems now that with all of the social media, my writing has dumbed down and I need to fix it.
I also need to write down my personal GP story for a book my friend LaShelle is putting together on GASTROPARESIS PAGE. She wants to make a Chicken Soup For the Teenage Soul but with Gastroparesis. It's been a long time since I've written like that. The last time I was published, I was in high school and wasn't so out of practice.
I feel like I never want to eat again. That rice keeps giving me spasms every hour. It hurts so much and the pain is intense.
I have been thanked for my blog, which makes me happy. It's actually helping people! I'm glad because that's part of the reason I started this. I didn't want people to take unnecessary medications or tests that people may not need. My blog has had over 6,000 views. I mean, that's amazing! Thank you all for reading my blog!
Another thing that's bothered me a bit. People keep telling me how strong I am. I don't always feel so strong. I feel so weak compared to the other admins on the GASTROPARESIS FACEBOOK PAGE. I mean, I try to be my own advocate but most of the time I just feel like I'm being whiny or annoying my friends with my blog posts. This is how I cope with the added stress. I need to write and get it out.
I need to ask the doctor for something stronger for insomnia. The Ambien 5mg just doesn't really work for me. I also need to ask the doctor if he could up my dose of Xanax for this month because just thinking about the future gives me a panic attack. I am so anxious that they aren't going to find anything or if they do, it will be horrible.
I also have really, really intense stomach spasms. They come in waves and all I can do is double over and not move. I try to breathe through them but that doesn't really help. It's almost like having a charlie horse in my abdomen. All I had today was a tiny bit of chicken and a small helping of rice. After I ate that, it took about thirty minutes for the gastric spasms to start.
The headache is also still lingering but I'm not sure if that's from dehydration or if it's from detoxing from all of the medications I'm not longer taking. I'm so exhausted and so weak. I've been sleeping a lot in the past few days because I'm just worn out. I thought about trying to finish some of my short stories and send them to publishers as a collection to see if anyone would publish them. I have great vivid dreams that would make amazing stories but I'm out of practice in writing. I've been writing research papers the past few years, so I am out of practice with creative writing. It would make me happy to have something of mine published. When I was a kid, I remember wanting to be a writer. It seems now that with all of the social media, my writing has dumbed down and I need to fix it.
I also need to write down my personal GP story for a book my friend LaShelle is putting together on GASTROPARESIS PAGE. She wants to make a Chicken Soup For the Teenage Soul but with Gastroparesis. It's been a long time since I've written like that. The last time I was published, I was in high school and wasn't so out of practice.
I feel like I never want to eat again. That rice keeps giving me spasms every hour. It hurts so much and the pain is intense.
I have been thanked for my blog, which makes me happy. It's actually helping people! I'm glad because that's part of the reason I started this. I didn't want people to take unnecessary medications or tests that people may not need. My blog has had over 6,000 views. I mean, that's amazing! Thank you all for reading my blog!
Another thing that's bothered me a bit. People keep telling me how strong I am. I don't always feel so strong. I feel so weak compared to the other admins on the GASTROPARESIS FACEBOOK PAGE. I mean, I try to be my own advocate but most of the time I just feel like I'm being whiny or annoying my friends with my blog posts. This is how I cope with the added stress. I need to write and get it out.
Thursday, January 17, 2013
Study Enters Phase 2 for Gastroparesis
SOUTH SAN FRANCISCO, CA and BOLOGNA, ITALY, Jan 08, 2013 (MARKETWIRE via COMTEX) -- Theravance, Inc. THRX -7.81% and Alfa Wassermann S.p.A. announced today the initiation of a Phase 2 proof-of-concept study with velusetrag, Theravance's investigational 5-HT4 agonist, for the treatment of patients with diabetic or idiopathic gastroparesis.
"We are pleased to be advancing the clinical development of velusetrag in a Phase 2 gastroparesis study," said Mathai Mammen, M.D., Ph.D., Senior Vice President of Research and Early Clinical Development of Theravance. "Today, patients have limited options for treating this serious, debilitating, and chronic condition."
About Phase 2 Study 0093
Study 0093 is a multicenter, randomized, double-blind, incomplete block, three-period fixed sequence crossover, Phase 2 study. This proof-of-concept study will assess three oral doses of velusetrag (5, 15, and 30 mg) or placebo, administered once daily in three periods of 1-week duration each, with a 1-week washout period between treatment periods, in approximately 32 patients with diabetic or idiopathic gastroparesis. The primary endpoint of the study is gastric emptying time. Secondary endpoints include safety and tolerability assessments.
About Gastroparesis
Gastroparesis is a serious, debilitating disorder of gastrointestinal (GI) motility with few therapeutic options currently available to patients. It is characterized by delayed gastric emptying in the absence of a mechanical obstruction. Symptoms experienced by patients with gastroparesis include early satiety, nausea, vomiting, and bloating. The impact of these symptoms, and the uncertainty of knowing when a symptom will occur, can make living with this condition very difficult.
About Velusetrag
Velusetrag, also known as TD-5108, is a highly selective agonist with high intrinsic activity at the human 5-HT4 receptor. An oral, investigational medicine dosed once daily, velusetrag has completed a 400-patient Phase 2 proof-of-concept study in chronic idiopathic constipation, demonstrating statistically significant prokinetic activity at all three doses tested; at the two lowest doses, velusetrag was generally well tolerated with a low incidence of adverse events. Velusetrag has also been shown to accelerate gastric emptying in healthy volunteers. Velusetrag was discovered by Theravance through the application of its multivalent drug design in a research program dedicated to finding new treatments for gastrointestinal motility disorders.
About Partnership
In October 2012, Theravance and Alfa Wassermann entered into a development and commercialization agreement for velusetrag, in development for gastrointestinal motility disorders. Under the agreement, the companies will collaborate in the execution of a two-part Phase 2 program, funded by Alfa Wassermann, to test the efficacy, safety and tolerability of velusetrag in the treatment of patients with gastroparesis. Alfa Wassermann has an exclusive option to develop and commercialize velusetrag in the European Union, Russia, China, Mexico and certain other countries. Theravance retains full rights to velusetrag in the United States, Canada, Japan and certain other countries.
About Theravance
Theravance is a biopharmaceutical company with a pipeline of internally discovered product candidates and strategic collaborations with pharmaceutical companies. Theravance is focused on the discovery, development and commercialization of small molecule medicines across a number of therapeutic areas including respiratory disease, bacterial infections, and central nervous system (CNS)/pain. Theravance's key programs include: RELVAR(TM) or BREO(TM) (FF/VI), ANORO(TM) (UMEC/VI) and MABA (Bifunctional Muscarinic Antagonist-Beta2 Agonist), each partnered with GlaxoSmithKline plc, and its oral Peripheral Mu Opioid Receptor Antagonist program. By leveraging its proprietary insight of multivalency to drug discovery, Theravance is pursuing a best-in-class strategy designed to discover superior medicines in areas of significant unmet medical need. For more information, please visit Theravance's web site at www.theravance.com .
THERAVANCE(R), the Theravance logo, and MEDICINES THAT MAKE A DIFFERENCE(R) are registered trademarks of Theravance, Inc.
RELVAR(TM) or BREO(TM) (FF/VI) and ANORO(TM) (UMEC/VI) are investigational medicines and are not currently approved anywhere in the world. RELVAR(TM), BREO(TM) and ANORO(TM) are trademarks of the GlaxoSmithKline group of companies. The use of these brand names has not yet been approved by any regulatory authority.
About Alfa Wassermann Alfa Wassermann is a private pharmaceutical group with Head Quarters in Bologna, Italy with its own research, development and manufacturing facilities. It has a growing number of affiliate companies in both Europe as well as in emerging markets such as Russia, China and Mexico. Its main product is rifaximin, a gut-selective antibiotic, which has been prescribed for 24 years under the Trade Name Normix(R), Xifaxan(R) and others (approved in 33 countries, including the US). The company has also developed other important products: Sulodexide (Vessel(R)), a heparinoid for thromboembolic diseases, and Parnaparin (Fluxum(R)), a low molecular weight heparin for the treatment and prophylaxis of deep-vein thrombosis. For more information, please visit Alfa Wassermann's web site at www.alfawassermann.it .
ALFA WASSERMANN(R), the ALFA WASSERMANN logo, Normix(R) and Xifaxan(R) are registered trademarks of Alfa Wassermann.
This press release contains certain "forward-looking" statements as that term is defined in the Private Securities Litigation Reform Act of 1995 regarding, among other things, statements relating to goals, plans, objectives and future events. Theravance intends such forward-looking statements to be covered by the safe harbor provisions for forward-looking statements contained in Section 21E of the Securities Exchange Act of 1934 and the Private Securities Litigation Reform Act of 1995. Examples of such statements include statements relating to the status and timing of clinical studies, statements regarding the potential benefits and mechanisms of action of drug candidates, statements concerning the enabling capabilities of Theravance's approach to drug discovery and its proprietary insights and statements concerning expectations for product candidates through development and commercialization. These statements are based on the current estimates and assumptions of the management of Theravance as of the date of this press release and are subject to risks, uncertainties, changes in circumstances, assumptions and other factors that may cause the actual results of Theravance to be materially different from those reflected in its forward-looking statements. Important factors that could cause actual results to differ materially from those indicated by such forward-looking statements include, among others, risks related to delays or difficulties in commencing or completing clinical and non-clinical studies, the potential that results of clinical or non-clinical studies indicate product candidates are unsafe or ineffective, our dependence on third parties in the conduct of our clinical studies, delays or failure to achieve regulatory approvals for product candidates, risks of relying on third-party manufacturers for the supply of our product and product candidates and risks of collaborating with third parties to develop and commercialize products. These and other risks are described in greater detail under the heading "Risk Factors" contained in Theravance's Quarterly Report on Form 10-Q filed with the Securities and Exchange Commission (SEC) on October 31, 2012 and the risks discussed in our other period filings with SEC. Given these uncertainties, you should not place undue reliance on these forward-looking statements. Theravance assumes no obligation to update its forward-looking statements.
Theravance Contact Information:
Michael W. Aguiar
Senior Vice President and Chief Financial Officer
650-808-4100
investor.relations@theravance.com
Alfa Wassermann Contact Information:
Andrew G Thompson
Corporate Business Development Director
agthompson@alfawassermann.it
Stefano Pasi
Chief Financial Officer
SPasi@alfawassermann.it
SOURCE: Theravance, Inc.
mailto:investor.relations@theravance.com
mailto:agthompson@alfawassermann.it
mailto:SPasi@alfawassermann.it
Copyright 2013 Marketwire, Inc., All rights reserved. LINK TO THE ARTICLE HERE.
Wednesday, January 16, 2013
When Telling Someone They Look Great Becomes an Insult!
When Telling Someone They Look Great Becomes an Insult!
By: Scarlett Hill
Link to Article: http://voices.yahoo.com/when-telling-someone-they-look-great-becomes-insult-11971343.html
At this point in time, Gastroparesis remains to be one of the most severe, debilitating and in some cases life threatening motility disorder. There is no reliable research, safe medications or adequate treatment options. Please visit www.g-pact.org to learn more.
If you are a caretaker of someone with Gastroparesis you can join this group that will help you.
Loved Ones with a Gastroparesis Warrior: http://www.facebook.com/groups/support4lovedones/. This is a safe place where you can ask questions, vent and become educated on the condition.
You can also join our other group that will help you with questions as well as advice and support. Stronger than Gastroparesis (GP Warriors): http://www.facebook.com/groups/strongerthanGP/
By: Scarlett Hill
Link to Article: http://voices.yahoo.com/when-telling-someone-they-look-great-becomes-insult-11971343.html
"If I asked you what Diabetes looks like, could you tell me? How about heart disease or Epilepsy? If I showed you a picture of four individuals, three of them diagnosed which one of the illnesses listed and one person who has no medical issues, do you think you would be able to tell me which one was not ill? I think not! Diseases do not all have a 'look' to them. Do not be fooled. Just because you cannot see it does not mean it is not very real and in some cases debilitating, serious and possibly life threatening. There are too many invisible illnesses to list, however each holds true to the fact that you cannot look at a person and know they have it or how they suffer.
Many people with invisible illnesses suffer in silence and there are multiple reasons for this. Millions of people who suffer from these conditions take on the added stress from friends, co-workers and even family members implying that because they don't have the appearance of being sick they must be exaggerating their condition. This actually has the potential of creating more health problems for the individual such as depression, alienation and complications caused by stress. When a person is ill, in pain or trying to cope with the acceptance of an illness the first people they turn to are their family and friends but sometimes the outcome is not a positive one when they cannot see the struggle. At this point there becomes an overwhelming sense of feeling alone and it becomes extremely difficult to deal with such debilitating symptoms. At this point you should seek out local support groups or online groups to connect with others who understand your struggle.
'But you don't look sick'
When family and friends don't know what to say, they often say the wrong thing! They think they are paying a compliment by saying things like 'but you don't look sick' or 'you look great you must be feeling better.' However, when these things are said to someone who lives their life in total agony, defeated emotionally by pain, in reality they are verbally stabbing the person right in the gut. While these words seem harmless, they can cut like a sword to someone living with an invisible illness. If you have a loved one who you may have said these types of comments to, you may want to re-evaluate what they are experiencing and how you may better approach it next time. Seek out care taker support groups or online forums run by individuals who have the same type of illness and research it. Ask questions and get an understanding of their quality of life. This may help you to better grasp what your loved one is feeling and open up the lines of communication between you.
Invisible, But Destructive: Gastroparesis
Think about the last time you had the flu. Really think about the details. How did it make you feel? Really visualize it, relive it mentally for a moment. I am sure there are images of stomach pain, vomiting, diarrhea; body aches and a few words along the lines of "oh please, make it stop" coming to mind right now. As your head hung over the side of the porcelain princess (aka the toilet) I would be willing to bet that you were counting down the minutes of this traumatic event, praying that it would promptly end and that you could go back to life as you knew it 24 hours prior; healthy, happy, pain and vomit free with the ability and desire to eat and drink at free will!
Now I want you to imagine life living with that flu permanently. Every day of your life bringing those symptoms you fear. Not knowing if today you will vomit upon waking, be able to hold down liquids, be able to eat, drive, grocery shop or if today will land you in the hospital. You may not be aware but this is the harsh reality for about 5% of the population. It is caused from a condition called Gastroparesis (GP). Gastroparesis means "paralyzed stomach" and is an extremely painful, awful, debilitating, misunderstood condition. It is very real. It is also very invisible. You cannot simply look at someone know they have it. There is no cure. Doctors are limited in their knowledge about it. There are only a few treatment options and they do not provide much relief at this point. There are no medications. There is no escape from the symptoms and in some cases there is no escaping the possibility of death. Many things in life are a choice. Eating is not one of them. When an invisible illness effects a person's eating habits, it affects their entire life.
Now imagine if you had this invisible illness and after a night of stabbing, gut wrenching pain, vomiting for hours, unable to eat yet you are starving and having the desperate wish for a cure and someone looked at you and said 'but you don't look sick.' It is great you don't look the way you feel, but that is such an insulting comment when all you desire is for someone, anyone to understand and be supportive. We need to raise awareness in all of our communities about the different invisible illnesses and become a greater support system for our loved ones. If you or your loved one suffers from one of the other many invisible illnesses, you may visit the Invisible Disability Association for information, encouragement, awareness and more."
At this point in time, Gastroparesis remains to be one of the most severe, debilitating and in some cases life threatening motility disorder. There is no reliable research, safe medications or adequate treatment options. Please visit www.g-pact.org to learn more.
If you are a caretaker of someone with Gastroparesis you can join this group that will help you.
Loved Ones with a Gastroparesis Warrior: http://www.facebook.com/groups/support4lovedones/. This is a safe place where you can ask questions, vent and become educated on the condition.
You can also join our other group that will help you with questions as well as advice and support. Stronger than Gastroparesis (GP Warriors): http://www.facebook.com/groups/strongerthanGP/
Monday, January 14, 2013
First Visit at the Mayo Clinic at Jacksonville
I have to say that the Mayo Clinic is very efficient. I went and registered at the registration desk and then was called back by a nurse. She input my information into the computer and put in all of my medical history. Then, she sent me upstairs to the floor where the doctor was and they asked me more questions and gave me more forms. I was able to get back to the doctor's room quite quickly.
As a side note, I need to make sure to get my other records sent there. I've had problems with nausea and vomiting since I was a teenager.
The doctor wasn't happy about my GI doctor's medications that he put me on but did commend my doctor for sending me to the Mayo Clinic. He told me that Bentyl and Levsin are basically the same things and they can cause paralysis of the stomach. I was also told to stop Nortriptyline, Dexilant, and Zoloft. The Doctor said that he wanted to see how my stomach reacted without all of the drugs masking symptoms and that the drugs could be making the nausea/vomiting worse. He told me that 30% of people that take Zoloft have nausea and vomiting.
He wanted me all of all of these medications before I take any tests. He doesn't want the medications to skew the results. So, I have to go back down to Jacksonville the first week of February.
He also said that me not being able to keep down water was very strange and not a symptom of GP. He mentioned this many times.
The doctor said that if the gastroparesis was caused by a virus in March, then the good news is that it is temporary - the stomach will heal itself in a year or two.
The tests that I will be doing the first week of February at Mayo are:
Gastric Emptying Test - to retake again because he said that they shouldn't have taken it the first time around while I was hospitalized and on pain medication. I will have this test done for four hours and I'm nervous because I had such a hard time keeping the radioactive sandwich down the first time. I remember crying because I was in so much pain from the test. Going from eating nothing to eating an entire sandwich is rough.
Endoscopic Ultrasound (they can't do an MRI with my spinal cord stimulator) - they want to go in to see if there are any stones or anything in my liver that could be causing my upper right pain. They are also going to stretch out my esophagus if they feel it's too constricted while they're in there. The doctor wants to take a look at my biliary system.
Bravo pH Test - this will test for acid reflux to see if that's contributing to my problems.
Blood tests - he's going to check my liver enzymes, since they've been elevated lately. He wants to know why. He's also testing my TSH (thyroid), Cortisol levels, and doing a complete panel.
The doctor has low confidence in my GP diagnosis and GERD. He thinks that if I do have gastroparesis that something else is going on because I shouldn't be this ill. This doctor helped to make the first gastric pacemaker, so I'm in good hands. He was also wearing a bow tie and I was wearing a Doctor Who shirt, with a TARDIS on it.
I have a test on each day starting February 4th. I'm going to be extremely tired but at least they're going to do it out patient. I'm hoping that I can get some answers. I really want to feel better and not carry a bucket or bags when I go anywhere.
As a side note, I need to make sure to get my other records sent there. I've had problems with nausea and vomiting since I was a teenager.
The doctor wasn't happy about my GI doctor's medications that he put me on but did commend my doctor for sending me to the Mayo Clinic. He told me that Bentyl and Levsin are basically the same things and they can cause paralysis of the stomach. I was also told to stop Nortriptyline, Dexilant, and Zoloft. The Doctor said that he wanted to see how my stomach reacted without all of the drugs masking symptoms and that the drugs could be making the nausea/vomiting worse. He told me that 30% of people that take Zoloft have nausea and vomiting.
He wanted me all of all of these medications before I take any tests. He doesn't want the medications to skew the results. So, I have to go back down to Jacksonville the first week of February.
He also said that me not being able to keep down water was very strange and not a symptom of GP. He mentioned this many times.
The doctor said that if the gastroparesis was caused by a virus in March, then the good news is that it is temporary - the stomach will heal itself in a year or two.
The tests that I will be doing the first week of February at Mayo are:
Gastric Emptying Test - to retake again because he said that they shouldn't have taken it the first time around while I was hospitalized and on pain medication. I will have this test done for four hours and I'm nervous because I had such a hard time keeping the radioactive sandwich down the first time. I remember crying because I was in so much pain from the test. Going from eating nothing to eating an entire sandwich is rough.
Endoscopic Ultrasound (they can't do an MRI with my spinal cord stimulator) - they want to go in to see if there are any stones or anything in my liver that could be causing my upper right pain. They are also going to stretch out my esophagus if they feel it's too constricted while they're in there. The doctor wants to take a look at my biliary system.
Bravo pH Test - this will test for acid reflux to see if that's contributing to my problems.
Blood tests - he's going to check my liver enzymes, since they've been elevated lately. He wants to know why. He's also testing my TSH (thyroid), Cortisol levels, and doing a complete panel.
The doctor has low confidence in my GP diagnosis and GERD. He thinks that if I do have gastroparesis that something else is going on because I shouldn't be this ill. This doctor helped to make the first gastric pacemaker, so I'm in good hands. He was also wearing a bow tie and I was wearing a Doctor Who shirt, with a TARDIS on it.
I have a test on each day starting February 4th. I'm going to be extremely tired but at least they're going to do it out patient. I'm hoping that I can get some answers. I really want to feel better and not carry a bucket or bags when I go anywhere.
Labels:
endoscope,
gastroparesis,
GI,
GP,
gp awareness,
Mayo,
mayo clinic
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