- Joined
- May 13, 2012
- Messages
- 1
I've been wanting to share my story for a while, so finally I decided to just register and tell it.
Six years ago I got the diagnoses, Crohn's Disease. I was a Navy brat at the time, finishing up my senior year of High School in Japan. I was actually planning on going into the Navy as well, as a Nuclear Engineer. Well, turns out that Crohn's means an automatic disqualification.
I had had symptoms for about 2 years prior, but was too embarrassed to tell anyone. Constant pain, diarrhea, mouth ulceration's, that sort of thing. What got me to finally go to the doctor however, was the blood.
Terrifying to me, just a teenager. Ended up going to the Dr's office, and being admitted into the ER shortly thereafter. Severe dehydration, nourishment, etc etc. They did a colonoscopy, and found severe inflammation, ulceration's.. The works.
I left the hospital after about a week with prednisone, pentasa, and antibiotics. Fairly tame stuff, but they wanted to start with the soft meds before moving to more hardcore medication.
Which they did after only a few weeks. Sitting in the middle of my last class of the day I started getting the worst abdominal pain I had ever felt. I just toughed through it, thinking it was nothing and that it would pass. But it didn't. After a couple hours I finally went to the emergency room, where they loaded me up with pain killers and found that I had multiple small bowel obstructions.
This resulted in another week in the hospital. Sadly, most of that week was during Spring Break.
At that point though, I was just numb to everything. The worst had happened, so little things like that were pointless. I ended up leaving the hospital that time with a higher dose of prednisone, as well as more antibiotics and imuran.
The worst was over, I thought. So I started looking at colleges, since I knew I couldn't just go into the military anymore. I had no idea what I wanted to do, but I knew I had to do something.
So my senior year went on, lots of sympathy from friends (at the time I just wanted life to go on, and didn't want the attention), and lots of doctor's appointments. About a month goes by, and I am feeling great. My appetite was back, my strength was back, and I was finally starting to be pain free. That said, I still had a small amount blood in the stool, but to me that was just a minor gripe compared to all the pluses.
My doctor at the time thought it would be a good idea to get a CT scan, just to be on the safe side. And boy, is it a good thing he did... 5 large abscesses spread throughout my abdomen. I was admitted into the hospital that night while they tried to determine the best course of action. One option was to send me to the naval hospital in Hawaii, where they could use a CT guided needle to drain the abscesses. However, after looking at the xrays and ct results, they determined that it would be impossible to reach all of them with a needle.
Surgery it was. I didn't even blink an eye, I just wanted the surgery to happen. I wanted to be better. The next day was a blur... Met with everyone that would be in the OR, the nurses, the urologist, the surgeons. Had to drink the 5L of Golytely.. And just a ton of people visiting. I couldn't think straight at that point. My brain just shut out what was happening so I wouldn't think about what was to come the next morning.
The worst part? That same weekend that all that was happening, I was supposed to be flying down to Okinawa for a large honor choir event. I sang opera at the time, bass/baritone. Ranked #1 out of all other baritones from international schools in and around Tokyo.
I still remember the waiting room, waiting to be rolled into the OR that morning. Strangely quiet for the bustle of people getting ready. And then I was waking up in the ICU.. So much pain. They had cut me from navel to pelvic bone, but I suppose I got lucky as I still remember the blue line drawn around my belly button and further up.
I was lucky, they told me. I had 22cm of small bowel removed that had perforated, as well as my ileocecal valve. I guess my appendix had even ruptured at some point, as an abscess had been formed around that as well. There wasn't any doubt at that point that what I had was Crohn's.
I spent about 2 weeks in the hospital that round. I guess now that the worst part was cut out of me, my body just healed like a maniac. I spent another week at home recovering before I finally went back to school. lol It must have taken me at least ten minutes to walk from class to class, as my abdominal muscles were still healing. Walking up stairs and getting in and out of my seat was the worst.
I was kept on the prednisone and imuran. I was getting towards remission, but I wasn't quite there yet. I started lap swimming for my rehab, and that worked great. I even learned to SCUBA when summer hit. However, that may have not been the best of ideas. I don't know if it was the pressure at depth or just coincidence, but shortly thereafter I started getting symptoms again. Not as bad, but they were there. Bloody diarrhea, abdominal pain, nausea. That sort of thing.
I was told I had to go back to the States so I could get better health care, see a real GI doc. So I left Japan and my family, even though I was still 17, and moved in with my grandparents. Started seeing a great GI doc who pulled all the strings she could to get my health insurance to approve Remicade. And WOW did that stuff work. I was off prednisone within months. Let me tell you, the day I went off that cursed stuff was a day for celebration.
Due to the prednisone, I ended up with osteopenia, severe cystic acne (and I used to have flawless skin), my teeth shifted and become crowded again... Just a nasty nasty drug.
During all that time I had decided to work full time at a hardware store, instead of go to college. College just seemed like too much work at the time, too much stress.
So it was about February 2007 when I was finally off the prednisone. I was still going in for my remicade, but I was off the imuran as well. Just in time for me to go back home and visit my family, who were still stationed in Japan. I got to stay for about 2 weeks before I came back to the states and went back to work.
I quit my job around the end of May. It wasn't for any bad reason, it was just my time. I wanted to go back to Japan for the summer, and be there for my sister's HS graduation. By then Humira had been approved for Crohn's, and I nagged my GI doc to switch me from Remicade to that. This allowed me to spend the entire summer there with no worry. Mind you, the Remicade hadn't put me in remission, but I was almost there. The Humira really was what got the job done.
From there, I started going to a community college that fall. I had no idea what I wanted to do, then I started going between pharm, psych, and undecided. It took me about 3 years to get my AA due to my flip flopping but I got it. It didn't hit me what I wanted to do until my very last quarter. I wanted to be a computer programmer.
I love computers, always have always will. I didn't know if I could do it, as the classes are tough and stressful. I'm still worried about my Crohn's coming out of remission, with how high the stress gets sometimes. Sometimes, I feel like I have mini flare-ups, but nothing too severe. No blood, just bad abdominal pain and diarrhea. And I've still got another year to go till I have my BS. From there, I want to get my math minor, and possibly a masters in something.
My childhood dream was to be a video game programmer. And you know what? I'm chasing that dream. It's a fantastic feeling, and I feel that although the stress is brutal, between classes and starting my own game studio, the sheer bliss keeps me from falling out of remission... Mind over matter, if you will.
I just released my first game, for Android, about a week ago. I want to inspire other's to chase their dream as well. In an ideal world, my game studio will take off and I'll be able to really help motivate other people who get diagnosed at a young age to just go for what they want to do.
If you're interested to see what I have been able to do, here are a couple links, one to the game's Facebook page, the other to the app's page.
And if you've read this far, thanks. I hope that I may have inspired you to do something you've always wanted to do.
play.google.com/store/apps/details?id=com.ice.fourfishfree
facebook.com/PlayFourFish
Six years ago I got the diagnoses, Crohn's Disease. I was a Navy brat at the time, finishing up my senior year of High School in Japan. I was actually planning on going into the Navy as well, as a Nuclear Engineer. Well, turns out that Crohn's means an automatic disqualification.
I had had symptoms for about 2 years prior, but was too embarrassed to tell anyone. Constant pain, diarrhea, mouth ulceration's, that sort of thing. What got me to finally go to the doctor however, was the blood.
Terrifying to me, just a teenager. Ended up going to the Dr's office, and being admitted into the ER shortly thereafter. Severe dehydration, nourishment, etc etc. They did a colonoscopy, and found severe inflammation, ulceration's.. The works.
I left the hospital after about a week with prednisone, pentasa, and antibiotics. Fairly tame stuff, but they wanted to start with the soft meds before moving to more hardcore medication.
Which they did after only a few weeks. Sitting in the middle of my last class of the day I started getting the worst abdominal pain I had ever felt. I just toughed through it, thinking it was nothing and that it would pass. But it didn't. After a couple hours I finally went to the emergency room, where they loaded me up with pain killers and found that I had multiple small bowel obstructions.
This resulted in another week in the hospital. Sadly, most of that week was during Spring Break.
At that point though, I was just numb to everything. The worst had happened, so little things like that were pointless. I ended up leaving the hospital that time with a higher dose of prednisone, as well as more antibiotics and imuran. The worst was over, I thought. So I started looking at colleges, since I knew I couldn't just go into the military anymore. I had no idea what I wanted to do, but I knew I had to do something.
So my senior year went on, lots of sympathy from friends (at the time I just wanted life to go on, and didn't want the attention), and lots of doctor's appointments. About a month goes by, and I am feeling great. My appetite was back, my strength was back, and I was finally starting to be pain free. That said, I still had a small amount blood in the stool, but to me that was just a minor gripe compared to all the pluses.
My doctor at the time thought it would be a good idea to get a CT scan, just to be on the safe side. And boy, is it a good thing he did... 5 large abscesses spread throughout my abdomen. I was admitted into the hospital that night while they tried to determine the best course of action. One option was to send me to the naval hospital in Hawaii, where they could use a CT guided needle to drain the abscesses. However, after looking at the xrays and ct results, they determined that it would be impossible to reach all of them with a needle.
Surgery it was. I didn't even blink an eye, I just wanted the surgery to happen. I wanted to be better. The next day was a blur... Met with everyone that would be in the OR, the nurses, the urologist, the surgeons. Had to drink the 5L of Golytely.. And just a ton of people visiting. I couldn't think straight at that point. My brain just shut out what was happening so I wouldn't think about what was to come the next morning.
The worst part? That same weekend that all that was happening, I was supposed to be flying down to Okinawa for a large honor choir event. I sang opera at the time, bass/baritone. Ranked #1 out of all other baritones from international schools in and around Tokyo.
I still remember the waiting room, waiting to be rolled into the OR that morning. Strangely quiet for the bustle of people getting ready. And then I was waking up in the ICU.. So much pain. They had cut me from navel to pelvic bone, but I suppose I got lucky as I still remember the blue line drawn around my belly button and further up.
I was lucky, they told me. I had 22cm of small bowel removed that had perforated, as well as my ileocecal valve. I guess my appendix had even ruptured at some point, as an abscess had been formed around that as well. There wasn't any doubt at that point that what I had was Crohn's.
I spent about 2 weeks in the hospital that round. I guess now that the worst part was cut out of me, my body just healed like a maniac. I spent another week at home recovering before I finally went back to school. lol It must have taken me at least ten minutes to walk from class to class, as my abdominal muscles were still healing. Walking up stairs and getting in and out of my seat was the worst.
I was kept on the prednisone and imuran. I was getting towards remission, but I wasn't quite there yet. I started lap swimming for my rehab, and that worked great. I even learned to SCUBA when summer hit. However, that may have not been the best of ideas. I don't know if it was the pressure at depth or just coincidence, but shortly thereafter I started getting symptoms again. Not as bad, but they were there. Bloody diarrhea, abdominal pain, nausea. That sort of thing.
I was told I had to go back to the States so I could get better health care, see a real GI doc. So I left Japan and my family, even though I was still 17, and moved in with my grandparents. Started seeing a great GI doc who pulled all the strings she could to get my health insurance to approve Remicade. And WOW did that stuff work. I was off prednisone within months. Let me tell you, the day I went off that cursed stuff was a day for celebration.
Due to the prednisone, I ended up with osteopenia, severe cystic acne (and I used to have flawless skin), my teeth shifted and become crowded again... Just a nasty nasty drug.
During all that time I had decided to work full time at a hardware store, instead of go to college. College just seemed like too much work at the time, too much stress.
So it was about February 2007 when I was finally off the prednisone. I was still going in for my remicade, but I was off the imuran as well. Just in time for me to go back home and visit my family, who were still stationed in Japan. I got to stay for about 2 weeks before I came back to the states and went back to work.
I quit my job around the end of May. It wasn't for any bad reason, it was just my time. I wanted to go back to Japan for the summer, and be there for my sister's HS graduation. By then Humira had been approved for Crohn's, and I nagged my GI doc to switch me from Remicade to that. This allowed me to spend the entire summer there with no worry. Mind you, the Remicade hadn't put me in remission, but I was almost there. The Humira really was what got the job done.
From there, I started going to a community college that fall. I had no idea what I wanted to do, then I started going between pharm, psych, and undecided. It took me about 3 years to get my AA due to my flip flopping
but I got it. It didn't hit me what I wanted to do until my very last quarter. I wanted to be a computer programmer.I love computers, always have always will. I didn't know if I could do it, as the classes are tough and stressful. I'm still worried about my Crohn's coming out of remission, with how high the stress gets sometimes. Sometimes, I feel like I have mini flare-ups, but nothing too severe. No blood, just bad abdominal pain and diarrhea. And I've still got another year to go till I have my BS. From there, I want to get my math minor, and possibly a masters in something.
My childhood dream was to be a video game programmer. And you know what? I'm chasing that dream. It's a fantastic feeling, and I feel that although the stress is brutal, between classes and starting my own game studio, the sheer bliss keeps me from falling out of remission... Mind over matter, if you will.
I just released my first game, for Android, about a week ago. I want to inspire other's to chase their dream as well. In an ideal world, my game studio will take off and I'll be able to really help motivate other people who get diagnosed at a young age to just go for what they want to do.
If you're interested to see what I have been able to do, here are a couple links, one to the game's Facebook page, the other to the app's page.
And if you've read this far, thanks. I hope that I may have inspired you to do something you've always wanted to do.
play.google.com/store/apps/details?id=com.ice.fourfishfree
facebook.com/PlayFourFish
