- Joined
- Feb 16, 2011
- Messages
- 2
The temptation for such a puntastic username. I apologize in advance. I am a bit of a geek.
It's been a while since I've recalled my Crohn's "story".
It was about 8 or 9 years ago (I am 24 now, so I was around 15). I started to experience rapid weight loss. I'm 5'11" and I dropped from 140 or 150 down to about 105lbs. I was a ghastly figure, my cheeks were sucked in (I hate using stereotypes, but...) the same way you would see with a heroin addict.
I can remember how it felt, too. Every so often I would double over in excruciating pain. Literally, I would drop to all fours, clench my stomach, and wait for the pain to pass. Like a wave it eventually would. In retrospect, I suppose this was the pain of food matter scraping against open wounds inside my intestines. Really freaky to think about.
It wasn't long before I experienced bloody stools. I was put on Prednisone to cope with whatever I had - still undiagnosed, but they assumed it was ulcers. That was a real treat, because it gave me an appetite like I'd never experienced before, and I gained back weight with such speed that I have stretch marks all down my lower back.
Unfortunately, these steroids made my condition worse in other regards. At one point I was hospitalized after having passed more than a litre of blood through my stools. I remember blacking out, and waking up as piles of warm blankets were laid on top of me, while a pediatric nurse was having great trouble getting a needle in my arm for a blood infusion, and I was later told the nurses in the ICU called a "code blue". It was at this time I saw a specialist who performed a colonoscopy and made the diagnosis.
Considering my condition was so serious, I was given a dose of Remicade. At the time this was an experimental medicine that had recently completed clinical trials. I was also started on Mercaptopurine/Purinethol at 100mg per day, and I continue to take this today.
I suppose I am one of the lucky ones, since I haven't required surgery in almost 10 years, and I've only had one semi-serious flare-up since that day of awful hemmorhaging. It's taken all that time to really figure out what triggers my symptoms. I don't know how others manage to figure these things out, but I would concoct theories about what was causing my bloating/diahrea/cramping and run with it for months before revising or scrapping the theory I had going. At one point it was too much fat in my diet, at another point I tried fasting periodically, at another I thought it might be gluten, or maybe it's GMOs, or too little protein, or this or that.
I've come to realize that the triggers are plentiful. In any given meal, too much of ANYTHING (carbs or sugar or grains or protein) will do me in. Garlic that isn't fried to a crisp will do me in for a whole day. Too little fibre, too little fresh fruit. White bread. Fruit juice will cause me problems, but fresh fruit is fine. Certain raw vegetables (broccoli) will cause problems, but others won't. It's... complicated, and I imagine everyone's dietary rules will differ.
I have since adopted a mostly vegan diet, for health and moral reasons. To this day I am continuing to discover new things. I recently discovered that I can drink 1 cup of low-acid coffee lightened with soy milk in a day (I love coffee!), but every once in a while I have to take a "vacation" from it or I start to get symptoms build up and feel sick. I discovered recently too that cardio exercise is HUGELY beneficial. It gets my digestion going and I no longer get food backed-up.
Overall, I would say that the number one thing that keeps me going is persistence which comes from my optimistic nature. If it wasn't for optimism I would never have made it this far.
I've never been much of a story-teller, but I guess that was all somewhat coherent and structured. : P
It's been a while since I've recalled my Crohn's "story".
It was about 8 or 9 years ago (I am 24 now, so I was around 15). I started to experience rapid weight loss. I'm 5'11" and I dropped from 140 or 150 down to about 105lbs. I was a ghastly figure, my cheeks were sucked in (I hate using stereotypes, but...) the same way you would see with a heroin addict.
I can remember how it felt, too. Every so often I would double over in excruciating pain. Literally, I would drop to all fours, clench my stomach, and wait for the pain to pass. Like a wave it eventually would. In retrospect, I suppose this was the pain of food matter scraping against open wounds inside my intestines. Really freaky to think about.
It wasn't long before I experienced bloody stools. I was put on Prednisone to cope with whatever I had - still undiagnosed, but they assumed it was ulcers. That was a real treat, because it gave me an appetite like I'd never experienced before, and I gained back weight with such speed that I have stretch marks all down my lower back.
Unfortunately, these steroids made my condition worse in other regards. At one point I was hospitalized after having passed more than a litre of blood through my stools. I remember blacking out, and waking up as piles of warm blankets were laid on top of me, while a pediatric nurse was having great trouble getting a needle in my arm for a blood infusion, and I was later told the nurses in the ICU called a "code blue". It was at this time I saw a specialist who performed a colonoscopy and made the diagnosis.
Considering my condition was so serious, I was given a dose of Remicade. At the time this was an experimental medicine that had recently completed clinical trials. I was also started on Mercaptopurine/Purinethol at 100mg per day, and I continue to take this today.
I suppose I am one of the lucky ones, since I haven't required surgery in almost 10 years, and I've only had one semi-serious flare-up since that day of awful hemmorhaging. It's taken all that time to really figure out what triggers my symptoms. I don't know how others manage to figure these things out, but I would concoct theories about what was causing my bloating/diahrea/cramping and run with it for months before revising or scrapping the theory I had going. At one point it was too much fat in my diet, at another point I tried fasting periodically, at another I thought it might be gluten, or maybe it's GMOs, or too little protein, or this or that.
I've come to realize that the triggers are plentiful. In any given meal, too much of ANYTHING (carbs or sugar or grains or protein) will do me in. Garlic that isn't fried to a crisp will do me in for a whole day. Too little fibre, too little fresh fruit. White bread. Fruit juice will cause me problems, but fresh fruit is fine. Certain raw vegetables (broccoli) will cause problems, but others won't. It's... complicated, and I imagine everyone's dietary rules will differ.
I have since adopted a mostly vegan diet, for health and moral reasons. To this day I am continuing to discover new things. I recently discovered that I can drink 1 cup of low-acid coffee lightened with soy milk in a day (I love coffee!), but every once in a while I have to take a "vacation" from it or I start to get symptoms build up and feel sick. I discovered recently too that cardio exercise is HUGELY beneficial. It gets my digestion going and I no longer get food backed-up.
Overall, I would say that the number one thing that keeps me going is persistence which comes from my optimistic nature. If it wasn't for optimism I would never have made it this far.
I've never been much of a story-teller, but I guess that was all somewhat coherent and structured. : P
