Let Me Tell You My Story
It has been a while since I have shared my story, and given that it is Feeding Tube Awareness Week, I feel like now is the time to do so. I'm not really sure how or where to start, so bear with me.
As a baby, I was pretty puky to say the least. My mom tells me stories about how I would vomit any time I would eat, and all the doctors would say is that all babies did that. Of course, my mom didn't really believe that all babies projectile vomited every time they ate, but she was nineteen and just kept hearing that I was fine... she didn't know what else to do.
Jump forward a year or two.
While I was a toddler, maybe one or two, it was anything red. If my mom even gave me a red apple I would throw it back up. Then at three, it was always, "mommy my tummy hurts." Every. Single. Day. That's when she first started taking me to doctors.
Lets jump forward in time again.
I'm in school now, and I'm always sick. I remember missing countless field trips and school activities because of strep throat and pneumonia. I also remember constantly having to sit out during PE because of an enlarged liver or spleen.
When I was eight, my pediatrician really started to dig. For years my mom had been told I just had a nervous stomach, but we had finally found a medical professional who seemed to listen. It wasn't long until we had found my first trigger food. Milk.
At nine, I began the long road of medical tests that is my life today. I had two CT scans and an MRI that year along with surgery to have my problematic tonsils removed.
It's time to move forward once more.
Eleven years old and in sixth grade, my body seemed to become much worse. I got mono that year, and things began to spiral out of control. I missed at least a month of school, and I started throwing up everything I ate. I was actually still throwing up everything when I went back to school.Things were pretty intense.
I threw up for six months straight, and nobody could tell us why. My GI specialist finally ordered a scope after trying almost everything to no avail.
Eosinophilic Gastroenteritis.
We had an answer, but what did it mean?
All we were really told was that it was related in some way to allergies, there was no cure, and the damage was permanent. From there, we were in the dark. My mom immediately took me to an allergist and had me tested. Based on the results of blood and prick tests, we eliminated foods from my diet, started a cocktail of medicine, and began a round allergy shots. Things were never perfect, but without really knowing what we were dealing with, we did the best we could, and I managed to get to a better place for a few years. I had gone into remission.
This is where the time line really speeds up.
Five years later at age 16, I really started getting sick again. I had been managing small flares for the last several years up until now. It was summer time, and I developed this awful rash all over my legs. We treated it as a fungal infection, MRSA, bacteria... everything. It just would not go away. Finally, it hit us. My mom told the doctor to take a biopsy, and, sure enough, it came back inflammation and allergy.
The rash had developed because of a reaction to some of the foods I had been consuming, so we retested for more allergies and were given a whole new list of things to avoid. After cutting gluten, dairy, chicken, fish, shell fish, pork, and tomatoes from my diet things started to get better but I was throwing up 1-3 times a week still, and we noticed other trigger foods that were based on my Eosinophilic Disorder.
One year later...
It was July 13, 2013 and my family and I were headed to an amusement park for the day. I noticed that morning that something didn't feel right, but I attributed it to allergies and went to the park anyway. I made it all day without getting sick, but by the end of the day I was having some concerning stomach pain.
The next day, I slept all day until around five in the afternoon when my mom was preparing to make dinner. I was on the back porch with my younger brother when he cut his arm with a knife. I wrapped it in a towel and had one of my other brothers run to grab my mom. I then rode along with them to the hospital.
While in triage, I began to feel really hot, and I told my mom that I needed to step into the hallway for a moment. By the time my mom had emerged several minutes later, I was seeing spots. It was only a matter of seconds before I slipped into unconsciousness. As I woke up, I was given some juice, which was the only thing that the hospital could give me that I was not allergic to, and we were sent home.
One hour went by.
I started to throw up, and I remember saying to my mom that it wasn't allergies. It felt different. A day passed, and then a week, and I was still throwing up.
My mom had taken me to my primary care doctor and urgent care with no luck, so on July 19, 2013 she took me to the ER at Children's Mercy.
That night, I was admitted to the hospital where I remained for two weeks. It was during that first stay that I was put on tube feedings for the very first time in my life, and I haven't been free of them since.
After two weeks of trying to reintroduce food to no avail, I was sent home with an NJ feeding tube. What that means is that I had a tube that went in through my nostril and stopped in the first portion of my small intestine. This tube allowed food to move passed my stomach so that I could hold it down.
At first, the thought was that I would only need the tube temporarily, but weeks and then months passed with no progress. On December 2, 2013, I went in for surgery to place the tube I have now, a GJ Mic-key button.
A GJ tube goes through the wall of the stomach and into the small intestine. It has two ports so that you can access both the stomach and intestine with it, but I only feed into my intestine. This tube is low profile which means that it is easily hidden, and I can do the same things as most normal people can. I do yoga and go swimming along with many other activities just as the average person can.
After several months, it became apparent that I was not tolerating tube feedings as well as we had hoped. By February of my senior year in high school, I weighed just 110 pounds despite standing at 5'6 in height and having weighed at least 140 lbs from eighth grade on. My doctor was getting to be concerned, so we had a central line placed so I could begin TPN.
note: TPN stands for total parentaral nutrition. This essentially means that I was being fed through my blood.
I've had three types of central line, but the one pictured is called a portacath. It sits under the skin and can be accessed with a port needle for iv access.
I was TPN dependent for a year and a half, but in July of 2015 I got an infection and went into septic shock. My port had to be removed, and I have fought to maintain weight with tube feedings ever since.
Believe it or not, my story doesn't end there. I've given you the minimum amount of detail possible for my purposes, but there is so much more to it than that. I'm actually currently writing this from a hospital room. The point is that my feeding tube has saved my life. There are hundreds of reasons as to why a person may need a feeding tube, and they are not as uncommon as you may think. It is feeding tube awareness week and I am here to make sure that you are aware. Thank you for reading.
As a baby, I was pretty puky to say the least. My mom tells me stories about how I would vomit any time I would eat, and all the doctors would say is that all babies did that. Of course, my mom didn't really believe that all babies projectile vomited every time they ate, but she was nineteen and just kept hearing that I was fine... she didn't know what else to do.
Jump forward a year or two.
While I was a toddler, maybe one or two, it was anything red. If my mom even gave me a red apple I would throw it back up. Then at three, it was always, "mommy my tummy hurts." Every. Single. Day. That's when she first started taking me to doctors.
Lets jump forward in time again.
I'm in school now, and I'm always sick. I remember missing countless field trips and school activities because of strep throat and pneumonia. I also remember constantly having to sit out during PE because of an enlarged liver or spleen.
When I was eight, my pediatrician really started to dig. For years my mom had been told I just had a nervous stomach, but we had finally found a medical professional who seemed to listen. It wasn't long until we had found my first trigger food. Milk.
At nine, I began the long road of medical tests that is my life today. I had two CT scans and an MRI that year along with surgery to have my problematic tonsils removed.
It's time to move forward once more.
Eleven years old and in sixth grade, my body seemed to become much worse. I got mono that year, and things began to spiral out of control. I missed at least a month of school, and I started throwing up everything I ate. I was actually still throwing up everything when I went back to school.Things were pretty intense.
I threw up for six months straight, and nobody could tell us why. My GI specialist finally ordered a scope after trying almost everything to no avail.
Eosinophilic Gastroenteritis.
We had an answer, but what did it mean?
All we were really told was that it was related in some way to allergies, there was no cure, and the damage was permanent. From there, we were in the dark. My mom immediately took me to an allergist and had me tested. Based on the results of blood and prick tests, we eliminated foods from my diet, started a cocktail of medicine, and began a round allergy shots. Things were never perfect, but without really knowing what we were dealing with, we did the best we could, and I managed to get to a better place for a few years. I had gone into remission.
This is where the time line really speeds up.
Five years later at age 16, I really started getting sick again. I had been managing small flares for the last several years up until now. It was summer time, and I developed this awful rash all over my legs. We treated it as a fungal infection, MRSA, bacteria... everything. It just would not go away. Finally, it hit us. My mom told the doctor to take a biopsy, and, sure enough, it came back inflammation and allergy.
The rash had developed because of a reaction to some of the foods I had been consuming, so we retested for more allergies and were given a whole new list of things to avoid. After cutting gluten, dairy, chicken, fish, shell fish, pork, and tomatoes from my diet things started to get better but I was throwing up 1-3 times a week still, and we noticed other trigger foods that were based on my Eosinophilic Disorder.
One year later...
It was July 13, 2013 and my family and I were headed to an amusement park for the day. I noticed that morning that something didn't feel right, but I attributed it to allergies and went to the park anyway. I made it all day without getting sick, but by the end of the day I was having some concerning stomach pain.
The next day, I slept all day until around five in the afternoon when my mom was preparing to make dinner. I was on the back porch with my younger brother when he cut his arm with a knife. I wrapped it in a towel and had one of my other brothers run to grab my mom. I then rode along with them to the hospital.
While in triage, I began to feel really hot, and I told my mom that I needed to step into the hallway for a moment. By the time my mom had emerged several minutes later, I was seeing spots. It was only a matter of seconds before I slipped into unconsciousness. As I woke up, I was given some juice, which was the only thing that the hospital could give me that I was not allergic to, and we were sent home.
One hour went by.
I started to throw up, and I remember saying to my mom that it wasn't allergies. It felt different. A day passed, and then a week, and I was still throwing up.
My mom had taken me to my primary care doctor and urgent care with no luck, so on July 19, 2013 she took me to the ER at Children's Mercy.
That night, I was admitted to the hospital where I remained for two weeks. It was during that first stay that I was put on tube feedings for the very first time in my life, and I haven't been free of them since.
After two weeks of trying to reintroduce food to no avail, I was sent home with an NJ feeding tube. What that means is that I had a tube that went in through my nostril and stopped in the first portion of my small intestine. This tube allowed food to move passed my stomach so that I could hold it down.
At first, the thought was that I would only need the tube temporarily, but weeks and then months passed with no progress. On December 2, 2013, I went in for surgery to place the tube I have now, a GJ Mic-key button.
A GJ tube goes through the wall of the stomach and into the small intestine. It has two ports so that you can access both the stomach and intestine with it, but I only feed into my intestine. This tube is low profile which means that it is easily hidden, and I can do the same things as most normal people can. I do yoga and go swimming along with many other activities just as the average person can.
After several months, it became apparent that I was not tolerating tube feedings as well as we had hoped. By February of my senior year in high school, I weighed just 110 pounds despite standing at 5'6 in height and having weighed at least 140 lbs from eighth grade on. My doctor was getting to be concerned, so we had a central line placed so I could begin TPN.
note: TPN stands for total parentaral nutrition. This essentially means that I was being fed through my blood.
I've had three types of central line, but the one pictured is called a portacath. It sits under the skin and can be accessed with a port needle for iv access.
I was TPN dependent for a year and a half, but in July of 2015 I got an infection and went into septic shock. My port had to be removed, and I have fought to maintain weight with tube feedings ever since.
Believe it or not, my story doesn't end there. I've given you the minimum amount of detail possible for my purposes, but there is so much more to it than that. I'm actually currently writing this from a hospital room. The point is that my feeding tube has saved my life. There are hundreds of reasons as to why a person may need a feeding tube, and they are not as uncommon as you may think. It is feeding tube awareness week and I am here to make sure that you are aware. Thank you for reading.
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