I don't remember when I first started feeling sick. Part of me assumes that maybe I had felt sick since I was so young that I don't remember a time in my life that I wasn't feeling sick. Or maybe I was too young and didn't know enough about the human body to understand that all the things I were feeling weren't normal. Lately, I've been leaning towards the latter.
My mom started taking me seriously when I survived the most embarrassing stint of my life in 2005. I was in tenth grade, in high school, taking my French Regents exam. My aunt had driven me to my final because my mom was working that day and couldn't give me a ride. We went to McDonald's beforehand (probably the cause of what's to come) and during the exam, my sense of urgency was so bad and I couldn't leave to use the bathroom (due to a number of reasons) that I lost control of my bowels and had an accident during the exam. I had to sit there like that through the remainder of the exam. I called my mom, she came to pick me up, and demanded that my pediatrician sent me to a specialist. [I had been to a pediatrician with complaints several times and was already taking Tums, Nexium, and a different combination of medications for Acid Reflux Disease, but my pediatrician was hesitant to send me to a gastroenterologist because he didn't want to "put me through that".]
I saw a pediatric gastroenterologist and was immediately sent in for all the tests possible: blood work, stool samples, upper barium series, CAT scan, and 2 endoscopies and a colonoscopy all within a 6 month time period. The upper barium series indicated narrowing of my intestine and the colonoscopy confirmed the presence of granulomas, which were definitive that I had Crohn's Disease from my mouth to my rectum.
Since I was 15 at the time, my parents were mainly communicating with my doctor and hadn't told me that he was suspecting Crohn's Disease for a few weeks after some test results had come back. He called my house and left a message on our family answering machine saying it was Crohn's Disease and I needed to begin medication immediately. I won't get into the emotional aspect of it here, but I was traumatized.
I don't remember the order or combinations of drugs that I took when I was younger, but the list was long:
After several years of Remicade (and a noticeably dying immune system), I ended up developing too many antibodies and was deemed unable to take it anymore by my doctor. While on Remicade, I developed two nearly full small bowel obstructions within 3 months of each other. Both instances required long-time hospitalization, NG tube, clear liquid diet, and the proposition of surgery. Sure enough, after consulting with several gastroenterologists and surgeons, I made an appointment to get a small bowel resection to remove the portion of my small intestine that connected to my large intestine (ileum and ileosecal valve).
The surgery went well. About 8 inches of intestine and my appendix were removed. I was recovering for about 5-6 weeks and was in medicine-free, surgery-induced remission for about 2 years. Then my symptoms started to return. I was devastated. I thought this surgery was supposed to buy me 4-7 years of time. It didn't.
I tried Remicade, 6-MP, and Pentasa again, but didn't feel any improvement. I found a new and more aggressive gastroenterologist who specialized in dealing with resilient Crohn's Disease. But, I delayed on starting a new plan of treatment (his recommendation was Humira) and I ended up with an intestinal abscess at the sight of my surgery that put me in the hospital, but eventually went away with a combination of Ciprofloaxcin and Flagyl. A week later, and reasons still totally unknown, I ended up with pancreatitis and was back in the hospital. It wasn't due to drinking, since I was alcohol-free on the antibiotics I was still on from the abscess and wasn't a big drinker in general because of the Crohn's. I think (as does my current doctor) that it was a complication of being on a heavy amount of Flagyl for so long. I started Humira weeks after this incident and coming out of remission and I've been on Humira since August of 2015. So far, so good.
I have yet to get another colonoscopy/endoscopy since these incidents and since starting Humira, but am scheduled for one this August, on my one-year Humira anniversary date. Keeping my fingers crossed.
My mom started taking me seriously when I survived the most embarrassing stint of my life in 2005. I was in tenth grade, in high school, taking my French Regents exam. My aunt had driven me to my final because my mom was working that day and couldn't give me a ride. We went to McDonald's beforehand (probably the cause of what's to come) and during the exam, my sense of urgency was so bad and I couldn't leave to use the bathroom (due to a number of reasons) that I lost control of my bowels and had an accident during the exam. I had to sit there like that through the remainder of the exam. I called my mom, she came to pick me up, and demanded that my pediatrician sent me to a specialist. [I had been to a pediatrician with complaints several times and was already taking Tums, Nexium, and a different combination of medications for Acid Reflux Disease, but my pediatrician was hesitant to send me to a gastroenterologist because he didn't want to "put me through that".]
I saw a pediatric gastroenterologist and was immediately sent in for all the tests possible: blood work, stool samples, upper barium series, CAT scan, and 2 endoscopies and a colonoscopy all within a 6 month time period. The upper barium series indicated narrowing of my intestine and the colonoscopy confirmed the presence of granulomas, which were definitive that I had Crohn's Disease from my mouth to my rectum.
Since I was 15 at the time, my parents were mainly communicating with my doctor and hadn't told me that he was suspecting Crohn's Disease for a few weeks after some test results had come back. He called my house and left a message on our family answering machine saying it was Crohn's Disease and I needed to begin medication immediately. I won't get into the emotional aspect of it here, but I was traumatized.
I don't remember the order or combinations of drugs that I took when I was younger, but the list was long:
- Pentasa
- Prednisone
- Entocort
- Levsin
- AcipHex
- Nexium
- Tums/Immodium
- 6-MP
- Remicade
- Flagyl
After several years of Remicade (and a noticeably dying immune system), I ended up developing too many antibodies and was deemed unable to take it anymore by my doctor. While on Remicade, I developed two nearly full small bowel obstructions within 3 months of each other. Both instances required long-time hospitalization, NG tube, clear liquid diet, and the proposition of surgery. Sure enough, after consulting with several gastroenterologists and surgeons, I made an appointment to get a small bowel resection to remove the portion of my small intestine that connected to my large intestine (ileum and ileosecal valve).
The surgery went well. About 8 inches of intestine and my appendix were removed. I was recovering for about 5-6 weeks and was in medicine-free, surgery-induced remission for about 2 years. Then my symptoms started to return. I was devastated. I thought this surgery was supposed to buy me 4-7 years of time. It didn't.
I tried Remicade, 6-MP, and Pentasa again, but didn't feel any improvement. I found a new and more aggressive gastroenterologist who specialized in dealing with resilient Crohn's Disease. But, I delayed on starting a new plan of treatment (his recommendation was Humira) and I ended up with an intestinal abscess at the sight of my surgery that put me in the hospital, but eventually went away with a combination of Ciprofloaxcin and Flagyl. A week later, and reasons still totally unknown, I ended up with pancreatitis and was back in the hospital. It wasn't due to drinking, since I was alcohol-free on the antibiotics I was still on from the abscess and wasn't a big drinker in general because of the Crohn's. I think (as does my current doctor) that it was a complication of being on a heavy amount of Flagyl for so long. I started Humira weeks after this incident and coming out of remission and I've been on Humira since August of 2015. So far, so good.
I have yet to get another colonoscopy/endoscopy since these incidents and since starting Humira, but am scheduled for one this August, on my one-year Humira anniversary date. Keeping my fingers crossed.
