my boyfriend and I were preparing to set sail on a huge adventure and go teach English in S Korea with some of my friends. the jobs were basically ours minus a little bit of paperwork and a BIG note from my dr. The people in S Korea wanted to know that I was ok to work etc as long as i was in continued treatment. At the time I needed the note I had just had a colonoscopy b/c i had changed insurance and therfore drs.
After that colonoscopy the Dr put me on steroids and told me to expect to see positive results soon. Well, I didn't really know what soon meant and so I waited and waited and figured i just needed to keep waiting. I had never been on steriods before so i figured well the doc says i'll see the results so I'll just wait until i do. So back to this note, I call to get the note written and they said well how are your bms looking. Loose, bloody, very frequent (see i told you, graphic lol) and that basically grounded us from going anywhere, literally.
I had been feeling bad for months and really didn't even notice it. 10 pounds sort of just melted off of me and I had no idea until someone said something. I was growing some pretty dark circles under my eyes and was so pale it was almost scary. I was going to the bathroom about 6 times during the day and about that much at night.
One day I had enough, I couldn't eat without this very sharp pain in my belly and I got so scared that I asked my girlfriend to take me to the er. They ran some tests and gave me percocet and sent me home telling me to make sure to see my GI dr w/in the next few days. My mom was living in NY at the time and as soon as i told her I was in the ER she was on the next plane to Denver, thank god.
We got in to see my GI Dr the next day at at his suggestion checked myself into the hospital. We were told I would e there 2-3 days just to be on belly rest (no solid foods) basically. Well I ended up being there for 10 days instead. I was so malnurished that I needed TPN so i could get some weight on. I was so anemic that i needed 2 maybe even 3 i can't remember, units of blood and 2 units of iron. While I was there the drs decided i needed a new form of treatment so they decided to see how i would handle Remicade. i was finally well enough to start eating solid food, that was an amazing day! and fianlly let me go home. I went home still with the picc line and tpn with the thought i would continue tpn for a week more or so b/c i still needed the nutrition.
that night i was sleeping soundly just so glad to be home and cuddle w/my bf after months of having to sleep on a couch pillow and not move, movement meant movement in my bowels as well. I started to feel a tinglingin my legs and it would not go away. i took some percocets and tried to sleep but couldn't. I thought maybe my legs were just getting used to moving again after being stuck in a bed for so long so my bf and i got up and started walking around the apartment. I can only imagine the sight, there i am in my underwear marching around the apartment with the tpn backpack on my back, if it wasn't so awful it would have been pretty funny.
We woke up my mom who was staying with us and then we woke up everyone lol. We called my dr at 4 am and he called right back (one of the many proof that he really wanted to see me well). we finally found somethung that would let me sleep and thought that was it. I woke up and tried to eat but threw it up i was in so much pain, i couldn't even use the bathroom b/c i couldn't relax enough, and the pain in my knees kept getting worse. finally my bf and my moma piled me into the car and we went right back to the er. I was screaming so loud and my GI Dr came rushing into my room to check on me (example #2). turns out i was having an allergic reactin to the remicade. I was heartbroken b/c i thought well thats it we're out of options. Thankfully we weren't and they placed me on Humira. I was glad to know we weren't out of options but the problem with these drugs is they are so new and quite strong, its all the more important to educate yourself on things like possible side effects, things like that. I mean if you're going to have a reaction, you're gonna have one you can't plan on it but its just so important to know. thats the hard thing w/UC, there really aren't that many options and the ones that are, are very new so its all the more important to have the knowledge base.
So i finally went home "for good" feeling a million times better and proudly proclaiming (in i'm sure what was a very sexy move to my bf) "solid poop" when i had my first few solid bms. It was very exciting and for 2 months the Humira had me feeling like a normal healthy 25 years old. i was happy, but things quickly slipped back....
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