My story doesn't have a specific start as I'm sure most of you don't know the exact moment you developed Chrohn's.
I had been small my whole life, always active and social, I was on a soccer team which is why we believe my disease was hiding so long. Playing soccer I needed tons of protein and carbs and food in general which hid the fact that I was losing weight fast. When the season ending in Spring 2010 that's when my weight dropped and by September I was 75lbs and that's when my mom told me it's time to find out what was going on.
For about two years before this I used to tell her it felt like my stomach was eating itself, and in that summer I started taking advil almost everyday. I got very good at hiding the pain, so it was the weight loss that gave it away. When I went to go get diagnosed I was just starting Grade 10. Just looking at me my doctor had doubts when I told him my dad (not in the picture) had Chrohn's. When my blood work came back and he saw the numbers he apologized for thinking I may have been starving myself. I believe it was a relief for my mom but we didn't know what was going to happen next in the slightest.
I was immediately sent to a well known Pediatrician who confirmed and got me into Vancouver Children's Hospital within the week. My disease was left untreated for so long that it was pretty bad. After getting into Children's my journey got tough, I met with my GI doctor and we needed answers so I was sent for Endoscopy, Colonoscopy and with those results they wanted an MRI too. During this time I was stressed which I found made my disease so much worse, I had stomach pain and back pain and I dropped out of school halfway through the semester, at this point my life couldn't have gotten much worse.
About a month after the MRI I had an appointment in which they wanted to get some medication plan started. We went over my options and at the time I was terrified of needles so my only option was Imuran. They told me it would take up to 3 months to start working efficiently and wanted me on tube feeding as my weight was still dropping. Tube feeding was a horrible and traumatic experience for me and I personally will never do it again no matter my circumstance. After 4-6 weeks I was done (Early January) and we waited about two months to no avail for the medication to work, and it didn't.
We then proceeded to go over my options again and I finally settled on Remicade. I had found no side effects and my intervals were at 8 weeks after finishing the start process. I was still not getting better and by this time my doctors doubted the fact that I was eating. They sent me to the mental health out patient therapy to get "checked" to which the doctor told me she wanted to admit me, not because I wasn't eating but because "they have tons of experience with helping people gain weight back" so I accepted as my options were running thin. I went in on a Friday morning before the long weekend. This was probably the worst decision I have ever made regarding my Chrohn's. The dietitians had no idea what would cause me to flare up, and of course that day my dietitian had to leave early. After getting into the program I was fed things like Nutrigrain bars and whole wheat products and not given options and was forced to eat in restricted times and to finish it all. After one day they put me in a full blown flare up which they had no idea what to do, but were continuing to feed me food that was causing it. Being admitted on a long weekend meant that I had to wait a whole extra day for the doctor to come back and release me. The minute I got into the room with my doctor and Psychiatrist I told them to release me that very hour, I was p*ssed, they told me they would help me yet they made it worse and wouldn't fix it. My psychiatrist told me I could be released due to the fact I was in good mental condition. I got out within two hours and never looked back.
The turning point in my disease was right before being admitted I asked my doctor if we could change my medication from 8 intervals to 6 weeks, and he said it was an option but I was admitted so quickly I didn't have a chance to wait and try. Which in the end was actually what I needed. After being out of the in patient program (68lbs leaving @ 5'3 and 16yo) I am here at 115lbs almost a year later. I now continue to take Imuran (everyday) and Remicade (6 1/2 week intervals) and am starting to live and love my life again.
I had been small my whole life, always active and social, I was on a soccer team which is why we believe my disease was hiding so long. Playing soccer I needed tons of protein and carbs and food in general which hid the fact that I was losing weight fast. When the season ending in Spring 2010 that's when my weight dropped and by September I was 75lbs and that's when my mom told me it's time to find out what was going on.
For about two years before this I used to tell her it felt like my stomach was eating itself, and in that summer I started taking advil almost everyday. I got very good at hiding the pain, so it was the weight loss that gave it away. When I went to go get diagnosed I was just starting Grade 10. Just looking at me my doctor had doubts when I told him my dad (not in the picture) had Chrohn's. When my blood work came back and he saw the numbers he apologized for thinking I may have been starving myself. I believe it was a relief for my mom but we didn't know what was going to happen next in the slightest.
I was immediately sent to a well known Pediatrician who confirmed and got me into Vancouver Children's Hospital within the week. My disease was left untreated for so long that it was pretty bad. After getting into Children's my journey got tough, I met with my GI doctor and we needed answers so I was sent for Endoscopy, Colonoscopy and with those results they wanted an MRI too. During this time I was stressed which I found made my disease so much worse, I had stomach pain and back pain and I dropped out of school halfway through the semester, at this point my life couldn't have gotten much worse.
About a month after the MRI I had an appointment in which they wanted to get some medication plan started. We went over my options and at the time I was terrified of needles so my only option was Imuran. They told me it would take up to 3 months to start working efficiently and wanted me on tube feeding as my weight was still dropping. Tube feeding was a horrible and traumatic experience for me and I personally will never do it again no matter my circumstance. After 4-6 weeks I was done (Early January) and we waited about two months to no avail for the medication to work, and it didn't.
We then proceeded to go over my options again and I finally settled on Remicade. I had found no side effects and my intervals were at 8 weeks after finishing the start process. I was still not getting better and by this time my doctors doubted the fact that I was eating. They sent me to the mental health out patient therapy to get "checked" to which the doctor told me she wanted to admit me, not because I wasn't eating but because "they have tons of experience with helping people gain weight back" so I accepted as my options were running thin. I went in on a Friday morning before the long weekend. This was probably the worst decision I have ever made regarding my Chrohn's. The dietitians had no idea what would cause me to flare up, and of course that day my dietitian had to leave early. After getting into the program I was fed things like Nutrigrain bars and whole wheat products and not given options and was forced to eat in restricted times and to finish it all. After one day they put me in a full blown flare up which they had no idea what to do, but were continuing to feed me food that was causing it. Being admitted on a long weekend meant that I had to wait a whole extra day for the doctor to come back and release me. The minute I got into the room with my doctor and Psychiatrist I told them to release me that very hour, I was p*ssed, they told me they would help me yet they made it worse and wouldn't fix it. My psychiatrist told me I could be released due to the fact I was in good mental condition. I got out within two hours and never looked back.
The turning point in my disease was right before being admitted I asked my doctor if we could change my medication from 8 intervals to 6 weeks, and he said it was an option but I was admitted so quickly I didn't have a chance to wait and try. Which in the end was actually what I needed. After being out of the in patient program (68lbs leaving @ 5'3 and 16yo) I am here at 115lbs almost a year later. I now continue to take Imuran (everyday) and Remicade (6 1/2 week intervals) and am starting to live and love my life again.
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