My Story, so far....

Hello Everybody!
I'm new to this site so I thought it would be appropriate to share my story, or at least my journey so far, so here goes nothin!
I was diagnosed with UC in October 2007, one week after my 21st birthday. I first went to a Dr who told me it was just hemeroids, but I didn't think that they could make your stomach feel that way, so I decided to go to a GI doctor. My doctor did a colonoscopy and basically told me after waking up that I have UC, its a chronic disease, you will have it for the rest of your life so learn to deal with it. Call me crazy, but that was a little much to take in after waking up, plus living away at college and being very active around campus! I was captain of my college volleyball team and had to break the news to my team and coaches. My teammates were more than supportive, especially when it came to the point where I couldn't play anymore :(   My coach was no so helpful, I expected a little more from the person who I worked so hard for for the past 2 years, but I was wrong.
Devistated that I could no long play anymore I took it upon myself to go speak to the councelor at my school which helped sooo much, it helped to get off my chest what I needed to, sometimes I feel bad venting to friends and family because I feel like I'm unloading my problems ontop of theirs and we all have our own problems to deal with, so it was nice to talk to someone on neutral ground. Oh and did I forget to mention that the school tried to kick me out because my grades dropped so low the one semester, they thought I would be better off taking a semester off. I was not having that, if anything I needed to take control of my life and learn how to deal with it as it comes. Case in point, I won :) and graduated in Dec '09.
I was visiting my boyfriend for his birthday when I had a flare that hospitalized me and was put on all these new meds. They changed me from Lialda to Asocol HD but they gave me insane migranes, Prednisone 40mg a day and it took forever to taper down because I was becoming steroid dependent, and then there was 6MP which gave me pancreatitis, so my next step was Remicade. I eventually moved in with my boyfriend and got a new Dr. He was more helpful and wanted me to start the remicade. I started treatment last Feb and started feeling great after the first 2 infusions. Once I hit my 8 week mark I was symptom free, until August. Once August came the treatment would only last for 3 weeks, which left me with all the symptoms for 5 weeks! I gained a lot of weight from being on the prednisone last time and I'm only 5'0 nothing, so a little weight is a lot on little ol me.
In about a year we moved back to north jersey to be closer to my parents, good thing we did because treatment was only lasting 3 weeks, we finally brought me down to every 6 weeks, but it's still not working. I absolutely love my new doctor, hes the most caring and aggressive dr I've had to date, but unfortuately with all my tests and not responding to treatment has suggested Surgery :/
So now I need to decided between experiment medication or having the surgery. If anyone is in the same boat as I am or has had the surgery I would love to hear from you!
Thanks for listening to me rant!

Replies

deleted_user
deleted_user

I know we have already talked, but I just wanted to say thanks for sharing your story. You have come to the right place for support and answers to your question. Feel free to rant whenever you need to, we all do it! :)
Also, congrats on finishing school! That\'s awesome!