Wow thank you guys so much! My own parents don't respond to me as fast as you do. I will answer some questions.
Background: Had my 1st colonoscopy when I was about
3 weeks old and that was when I was diagnosed. My parents don't have my illness. Neither does anyone in my family. They have never understood it and thought that I was faking just how much pain I was in on a daily basis. I have never been in remission and my doctors always say that they can't do anything for me. I have had 14 different doctors and 26 colonoscopy/endoscopy combos in my life. I get a few every year because it keeps traveling up. I hold also add that I have IBS as well.
Medications (excuse my spelling): Lialda and dicyclomine currently. I have been on prednisone, asacol, rawasa, Kanasa (sp?) and many others
"Do you have a GI to talk to?" Yes I do, but he says that I don't have many options. He just keeps putting me on the same medication and I am petrified of going on prednisone again because I finally lost all the weight that went along with it.
Living situation: Yes, I live in a dorm and I have a roommate. She is very understanding of when I'm sick and even helps me get food when I have joint pain.
Eating: I really need to ask you guys about
what to eat. So far I have been only eating steamed veggies, chicken based broth, plain yogurt/ greek yogurt, tons of water, and bananas. That's it. I am afraid to eat because I am afraid of getting worse. I lost 13 pounds since I started here 3 weeks ago and none of my clothes fit me anymore. Any advice on that would be more than amazing!
Absence policy: It is throughout my campus. Basically, I have gone through the office of disabilities and received some accommodations, but they won't budge on the absence thing. I have already been absent 4 times in the past 3 weeks of college. For each absence my grade goes down. I have been going through every office that I can (health center, disabilities, dean, RA, Professors, etc.) All of them keep pointing me in the direction of one of them. it is like a tangled spider web with no answers. My professors can't do anything apparently. I'm not missing class for slight pain. I'm only missing class when I am stuck in the bathroom. Today, I spent about
9 hours in the bathroom. My teachers don't understand that I physically can't get to class. It's not easy spending 9 hours in a public bathroom, especially when the lights are motion sensor. I have to call one of my girl friends to come in every hour or they turn off.
New symptoms: I am petrified right now because I am getting new symptoms. I have been faint/ fainting, nauseated/vomitting, head aches, and my heart always seems to be beating too fast. It is really bad in the morning, but it gets worse at about
3pm every day. has anyone experienced those symptoms?
Basically, I feel like i'm at a dead end and no one seems to want to listen to me. I am trying to be my own advocate and be professional about
everything but I seem to be breaking down a lot lately emotionally as well as physically. I have always been a strong person and no matter how much pain I was in, I always made sure that I did what all the other children my age were doing. I was even number 7 in my class of 489. I work really hard and it kills me that something like absences can lower my grade. I feel like I am at a disadvantage.
Sorry for typing so much, I tried to label sections that way answers would be easier to find. I can't even begin to tell all of you how much this means to me. I am deeply touched. It's nice to know that someone out there will listen to me. Thank You!
-Miss Dana
Post Edited (Miss Dana) : 9/18/2012 8:43:52 PM (GMT-6)