MY STORY
My story is a long one, so brace yourself.
My name is Alexandra, I am 18 years old and have been dealing with chronic illness for several years now. It first started with a virus following the Christmas holidays 2010. Even after getting over the virus, nothing was the same. I guess you could say that I never really got "over" it. My appetite had drastically decreased, and every time I would eat, I would get full very fast and my stomach would start to hurt. Then, I realized that I could be well over 1 week without having a bowel movement. My abdomen would get very big and bulge, and I’d have ongoing cramps and stabbing pains.
After numerous follow-ups with my family doctor, I was referred to a gastroenterology clinic at the children’s hospital. They weren't too concerned on the intestinal point of view, so they asked me if I would be willing to see Adolescent Health, whom they explained to be doctors working with teenagers. Naturally, I was willing to see anyone. What I didn't know was that they were actually sending me to an eating disorder clinic for an assessment. After having spent an 8 hour assessment, the team decided that I should be admitted to the hospital due to my medical instability. My vital signs were very unstable and as a result, I would start to black out nearly every time I would stand up, not to mention I was very underweight, being 87lbs. In 2011, I had even gone down to 93lbs, in 2012, 83lbs, and in winter 2013, 77lbs.
During the past 4 years, I’ve had good periods and very bad ones that have set me back in the hospital once each year. I’ve had 3 admissions, all of which have lasted 10 weeks, 2 months, and 3 months respectively. During these, I’ve had all tests imaginable - MRI,MRE,colonoscopies,endoscopies,etc,etc- but all that was "found" was Irritable Bowel Syndrome. IBS is a digestive disorder that affects your large intestine (the colon) and as a result, can cause cramping, abdominal pain, bloating gas, diarrhea and/or constipation. Ever heard of Chron's or Colitis? IBS is very similar, only it's not characterized by inflammation of the bowels, which leads me to think that most people diagnosed with it are given that diagnosis because the doctors don't actually know what's wrong with them. During my years of dealing with severe IBS, I experienced constant, severe abdominal pain, inflammation, paralyzed peristalsis, joint pain, etc. Not your typical case of IBS.
It has been quite difficult. The first admission was in May 2010. The doctors were saying: "You might have an eating disorder and not know it", so naturally, I was freaking myself out. They kept telling me that they didn't want to put a label on me (diagnosing me with anorexia), but looking back, they definitely did. I was treated with the ED protocol -urine samples, getting on the scale backwards, lying&standing vitals before and after meals, no going to the bathroom 1hour before or after meals, having to follow a meal plan and having whatever is left replaced with meal replacement, etc.- They were feeding me things like cookies, cake, chocolate milk, and just...JUNK! On top of that, I was forced to go off the gluten free diet I had been following for 3 months. No wonder things didn't get any better the next year...
January 2011, I was readmitted at 93lbs to come back and do more testing. Said testing ended up lasting much longer than expected. However, it was a better experience than the first, eating disorder having clearly been ruled out, I was ordering my own meals like other patients & getting tube fed overnight to help with weight gain. For those who are unfamiliar with tube feeding, a nasogastric (NG) tube which gets connected to a feeding pump is inserted up your nose and drops down your throat, all the way to your stomach. Picture this: The first time getting the tube put in, I was actually laughing because the nurse that was inserting it was saying things like "How are you so calm? If I were you, I'd be clawing at me right now".
Anyways, the tests done that year weren't helpful at all, which is when they came up with the IBS diagnostic. Eventually, I got sent home with the feeding pump to be able to go back to school. I was taught how to insert the tube in and take it out, so that I'd be able to do it everyday. My doctor was and still remains amazed that for the months I needed the tube feeding, I kept the tube in everyday, without taking it out, even for school. I guess he made me realize how much self-esteem I had; that I didn't care what people thought of me.
The next admission, January 2012, was the longest one of all. I was put strictly on tube feeding to give my stomach a break, and after 2 months, started reintroducing food. This was a nightmare. Firstly, nurses would still treat me as an eating disorder patient. They would come in every morning with a urine bottle for me and ask me to get weighed in a gown (and of course when I'd get on the scale, they'd tell me to turn around). I had to constantly tell them that it wasn't what I usually did. (Regular patients get weighed whenever they wake up, in pyjamas and are allowed to look at the scale- no urine sample needed). Secondly, when being reintroduced to food, I was put once again on a meal plan. Only this time, I insisted on staying gluten free and (thankfully) nothing had to be replaced, but everything I ate was recorded. When on the meal plans, somehow, something got messed up and I was accidentally put on the most advanced one when I was beginning to transition. Being fed gluten free bagels, breads, and cereal products at every meal (which turn to glue in your stomach), you can imagine that my intestines were not happy with me. Eventually, I started ordering my own meals, needing less and less of the tube feeding. I was also doing treatments of Lidocain&Magnesium infusions which I had done the previous year that helped the pain immensely.
I had no admission in 2013, but had been very close to one that winter. That year had been the worst of all. The pain had been unbearable during the winter time, so bad that I actually wanted to be admitted just to get morphine or something strong to alleviate it. But, since motility was one of my main problems, morphine was out of the question. My treatments of infusions were supposed to start again, but we had to postpone them because my heart rate was 46, and my blood pressure was in the 80 over 60 range, so it was not safe to perform because the infusions actually lower those numbers. My chronic pain doctor tried to get me to take an appointment with the doctor that has admitted me each year for testing, but my mom told her we would not be going to see him because we had already been through this in the past, and nothing had ever been done to help the root of the problem, only the weight. "Going back would mean having to start all over again once she's out" she said. (👏) Plus, I really didn't feel like being judged by nurses who labelled me as an ED patient. I was already struggling enough with that everyday, at school, at the store, and especially in the gym change rooms.
Desperate, I started to see a naturopath that same year, Shortly before Easter, my first naturopath put me on several supplements and a juicing diet to give my stomach a break. It was really hard at first, not because I wanted to eat (I couldn't tolerate anything anymore), but because I was feeling constantly nauseous. After a week of protein veggie juices, she perscribed I add avocado, making them more of a shake consistency, and suggested certain solids (like quinoa loaf) that I could have. I was to remain vegetarian, and mostly on a liquid diet for at least two months. I got colonic irrigations during that transition which drastically diminished my pain. It felt amazing to have such a break.
After a while, my naturopath transferred me to another. I have to say, I saw good progress with him. He put me on several homeopathic remedies and supplements, and told me to start reintroducing food. Ever since I had started to see him however, I started binge eating. It managed to turn into a full-on BED (binge eating disorder). I had gotten intolerance testing done, and was supposed to eliminate my food intolerances for 3 months, starting July 1st. However, these binge episodes made it impossible to do so. I was gaining incredibly fast (7-10lbs per week), which made us discover that I had developed hormonal problems. Since then, I had gained a total of 94lbs, putting my highest weight at 171lbs. As a result, I was going through terrible symptoms: I felt like a menopausal woman. I also became very depressed and anxious. I had no interest in anything; I'd put a movie on and stop it, pick up a book and drop it, etc., etc. All I seemed to do was stay in bed and cry. I hated myself, my life, and wanted to end it all. Yes, I was suicidal. I had also developed anxiety related to my body-image. So much so that I had to be homeschooled for months during my senior year, hoping to figure things out and get better. At this time, I had stopped seeing my naturopath, and had returned to my medical doctor. After several months, I was diagnosed with Chronic Fatigue Syndrome, another diagnosis I believe is given when doctors don't know what you truly have.
Now, I have stopped seeing my doctor, and am relying on God to fix me. I'm doing a 40 day spiritual fast for the cause, and trusting that it will help. Already, I feel more energetic (I'm able to go to the gym), more joyful, and less anxious. Although naturopathy helped my gastrointestinal issues tremendously, part of me wished that I would have gone back to the hospital so that I wouldn't have to have dealt with the consequences of gaining so much weight. However, throughout this ongoing journey, I have discovered who my true friends are, become stronger, more independent, more positive and have taken an interest in my well-being. Despite not having an eating disorder to begin with, I understand what those who have one are going through, because I felt the physical pain of stomach stretching, the emotional pain of always having to eat when you're not hungry, feeling like people are judging you, hating yourself, and more.
No matter what, remember that no one's story is set in stone. The way we react to our hardships determines the outcome of our journey 💛
My name is Alexandra, I am 18 years old and have been dealing with chronic illness for several years now. It first started with a virus following the Christmas holidays 2010. Even after getting over the virus, nothing was the same. I guess you could say that I never really got "over" it. My appetite had drastically decreased, and every time I would eat, I would get full very fast and my stomach would start to hurt. Then, I realized that I could be well over 1 week without having a bowel movement. My abdomen would get very big and bulge, and I’d have ongoing cramps and stabbing pains.
After numerous follow-ups with my family doctor, I was referred to a gastroenterology clinic at the children’s hospital. They weren't too concerned on the intestinal point of view, so they asked me if I would be willing to see Adolescent Health, whom they explained to be doctors working with teenagers. Naturally, I was willing to see anyone. What I didn't know was that they were actually sending me to an eating disorder clinic for an assessment. After having spent an 8 hour assessment, the team decided that I should be admitted to the hospital due to my medical instability. My vital signs were very unstable and as a result, I would start to black out nearly every time I would stand up, not to mention I was very underweight, being 87lbs. In 2011, I had even gone down to 93lbs, in 2012, 83lbs, and in winter 2013, 77lbs.
During the past 4 years, I’ve had good periods and very bad ones that have set me back in the hospital once each year. I’ve had 3 admissions, all of which have lasted 10 weeks, 2 months, and 3 months respectively. During these, I’ve had all tests imaginable - MRI,MRE,colonoscopies,endoscopies,etc,etc- but all that was "found" was Irritable Bowel Syndrome. IBS is a digestive disorder that affects your large intestine (the colon) and as a result, can cause cramping, abdominal pain, bloating gas, diarrhea and/or constipation. Ever heard of Chron's or Colitis? IBS is very similar, only it's not characterized by inflammation of the bowels, which leads me to think that most people diagnosed with it are given that diagnosis because the doctors don't actually know what's wrong with them. During my years of dealing with severe IBS, I experienced constant, severe abdominal pain, inflammation, paralyzed peristalsis, joint pain, etc. Not your typical case of IBS.
It has been quite difficult. The first admission was in May 2010. The doctors were saying: "You might have an eating disorder and not know it", so naturally, I was freaking myself out. They kept telling me that they didn't want to put a label on me (diagnosing me with anorexia), but looking back, they definitely did. I was treated with the ED protocol -urine samples, getting on the scale backwards, lying&standing vitals before and after meals, no going to the bathroom 1hour before or after meals, having to follow a meal plan and having whatever is left replaced with meal replacement, etc.- They were feeding me things like cookies, cake, chocolate milk, and just...JUNK! On top of that, I was forced to go off the gluten free diet I had been following for 3 months. No wonder things didn't get any better the next year...
January 2011, I was readmitted at 93lbs to come back and do more testing. Said testing ended up lasting much longer than expected. However, it was a better experience than the first, eating disorder having clearly been ruled out, I was ordering my own meals like other patients & getting tube fed overnight to help with weight gain. For those who are unfamiliar with tube feeding, a nasogastric (NG) tube which gets connected to a feeding pump is inserted up your nose and drops down your throat, all the way to your stomach. Picture this: The first time getting the tube put in, I was actually laughing because the nurse that was inserting it was saying things like "How are you so calm? If I were you, I'd be clawing at me right now".
Anyways, the tests done that year weren't helpful at all, which is when they came up with the IBS diagnostic. Eventually, I got sent home with the feeding pump to be able to go back to school. I was taught how to insert the tube in and take it out, so that I'd be able to do it everyday. My doctor was and still remains amazed that for the months I needed the tube feeding, I kept the tube in everyday, without taking it out, even for school. I guess he made me realize how much self-esteem I had; that I didn't care what people thought of me.
The next admission, January 2012, was the longest one of all. I was put strictly on tube feeding to give my stomach a break, and after 2 months, started reintroducing food. This was a nightmare. Firstly, nurses would still treat me as an eating disorder patient. They would come in every morning with a urine bottle for me and ask me to get weighed in a gown (and of course when I'd get on the scale, they'd tell me to turn around). I had to constantly tell them that it wasn't what I usually did. (Regular patients get weighed whenever they wake up, in pyjamas and are allowed to look at the scale- no urine sample needed). Secondly, when being reintroduced to food, I was put once again on a meal plan. Only this time, I insisted on staying gluten free and (thankfully) nothing had to be replaced, but everything I ate was recorded. When on the meal plans, somehow, something got messed up and I was accidentally put on the most advanced one when I was beginning to transition. Being fed gluten free bagels, breads, and cereal products at every meal (which turn to glue in your stomach), you can imagine that my intestines were not happy with me. Eventually, I started ordering my own meals, needing less and less of the tube feeding. I was also doing treatments of Lidocain&Magnesium infusions which I had done the previous year that helped the pain immensely.
I had no admission in 2013, but had been very close to one that winter. That year had been the worst of all. The pain had been unbearable during the winter time, so bad that I actually wanted to be admitted just to get morphine or something strong to alleviate it. But, since motility was one of my main problems, morphine was out of the question. My treatments of infusions were supposed to start again, but we had to postpone them because my heart rate was 46, and my blood pressure was in the 80 over 60 range, so it was not safe to perform because the infusions actually lower those numbers. My chronic pain doctor tried to get me to take an appointment with the doctor that has admitted me each year for testing, but my mom told her we would not be going to see him because we had already been through this in the past, and nothing had ever been done to help the root of the problem, only the weight. "Going back would mean having to start all over again once she's out" she said. (👏) Plus, I really didn't feel like being judged by nurses who labelled me as an ED patient. I was already struggling enough with that everyday, at school, at the store, and especially in the gym change rooms.
Desperate, I started to see a naturopath that same year, Shortly before Easter, my first naturopath put me on several supplements and a juicing diet to give my stomach a break. It was really hard at first, not because I wanted to eat (I couldn't tolerate anything anymore), but because I was feeling constantly nauseous. After a week of protein veggie juices, she perscribed I add avocado, making them more of a shake consistency, and suggested certain solids (like quinoa loaf) that I could have. I was to remain vegetarian, and mostly on a liquid diet for at least two months. I got colonic irrigations during that transition which drastically diminished my pain. It felt amazing to have such a break.
After a while, my naturopath transferred me to another. I have to say, I saw good progress with him. He put me on several homeopathic remedies and supplements, and told me to start reintroducing food. Ever since I had started to see him however, I started binge eating. It managed to turn into a full-on BED (binge eating disorder). I had gotten intolerance testing done, and was supposed to eliminate my food intolerances for 3 months, starting July 1st. However, these binge episodes made it impossible to do so. I was gaining incredibly fast (7-10lbs per week), which made us discover that I had developed hormonal problems. Since then, I had gained a total of 94lbs, putting my highest weight at 171lbs. As a result, I was going through terrible symptoms: I felt like a menopausal woman. I also became very depressed and anxious. I had no interest in anything; I'd put a movie on and stop it, pick up a book and drop it, etc., etc. All I seemed to do was stay in bed and cry. I hated myself, my life, and wanted to end it all. Yes, I was suicidal. I had also developed anxiety related to my body-image. So much so that I had to be homeschooled for months during my senior year, hoping to figure things out and get better. At this time, I had stopped seeing my naturopath, and had returned to my medical doctor. After several months, I was diagnosed with Chronic Fatigue Syndrome, another diagnosis I believe is given when doctors don't know what you truly have.
Now, I have stopped seeing my doctor, and am relying on God to fix me. I'm doing a 40 day spiritual fast for the cause, and trusting that it will help. Already, I feel more energetic (I'm able to go to the gym), more joyful, and less anxious. Although naturopathy helped my gastrointestinal issues tremendously, part of me wished that I would have gone back to the hospital so that I wouldn't have to have dealt with the consequences of gaining so much weight. However, throughout this ongoing journey, I have discovered who my true friends are, become stronger, more independent, more positive and have taken an interest in my well-being. Despite not having an eating disorder to begin with, I understand what those who have one are going through, because I felt the physical pain of stomach stretching, the emotional pain of always having to eat when you're not hungry, feeling like people are judging you, hating yourself, and more.
No matter what, remember that no one's story is set in stone. The way we react to our hardships determines the outcome of our journey 💛