Hey everyone !! hope you're all doing great!! Just wanted to update you all on my situation and give those of you struggling with this stupid horrible disease proof that things can get better....When i got diagnosed this past September with moderate to severe ulcerative pancolitis i thought my life was over and that things would never be how they used to be. I was put on Prednisone for three months to deal with my initial flare that landed me in the emergency room and im sure most of you know the terrible side effects that come with the steroids
. For those three months i felt alone , depressed ,ugly,restless ,worthless,hungry(lol) and sick , physically and emotionally. For the most part of those three months i spent most of my time at home, not wanting to do anything or go anywhere where people would see the monster that i felt i became. During this time i was also on this site constantly, educating myself with the help of the community and getting the answers/support that i needed to push forward. I learned about
everything there is to know about
this disease and that gave me comfort to a certain degree. However at the same time the constant question of "why me?" popped into my head on the daily and i thought to myself that as a 22 yr old at the peak of my youth that i didn't deserve such a cruel fate."Ulcerative Pancolitis? Severe? surgery? colonoscopies? diets? pooping in a bag? medication regimen? Supplements? auto immune diseases? cancer? career? fitness? my future? my future? my future?..... needless to say , the entire situation sucked big time!!
Eventually i tapered off of Prednisone while simultaneously starting Remicade. At this point in time i was more scared than i had ever been in my whole life. While i was excited about
the prospect of getting better with Remicade and getting off the Pred, i was also extremely nervous about
all the side effects and the horror stories about
the medication that i read online. Once the 3 loading doses were complete , i ended my 3 month long engagement to prednisone but with mixed results. There was still some blood in my stool and that was worrisome, but i stayed the course hopeful that things would improve. Following a sigmoidoscopy that showed that i had not progressed to where my GI would have liked, my Remicade dosage was increased to where she thought it would be more beneficial. She was right and after the 5th infusion i immediately noticed significant improvement in my condition. I have now had 6 infusions of Remicade and guess what? I'm in complete symptomatic remission!!! I go for my dose every 8 weeks and i've gotten way more comfortable with the idea of getting infusions than i had been previously. Like someone on this site put it , its just like having my oil changed to ensure i keep on going. Now almost 4 months after the prednisone I'm finally becoming myself again and wow does it feel great!! my weight is normal, my chubby cheeks are getting smaller, my acne is almost gone and my social life is back.I'm no longer afraid to go out and my grasp on this disease is stronger than ever. The fear is gone.
While things are great now, i know that nothing is certain with this disease and I'm in no way naive to the fact that this battle is far from over . This disease is complex, frustrating, resilient and absolutely evil in its ways. However ,i feel like my resilience is greater and everything i have gone through and conquered since September is proof of that. I now have precedent, that no matter how bad things can get and no matter how down , sick or defeated i may feel in the future, that i can overcome this thing. i have also learned that i don't have to do it all alone either. My family , my Friends and my girlfriend have all been there for me this entire time. While they do not fully understand what I'm going through they have been extremely supportive,caring and amazing in putting up with me when things were bad all the way till now.
This website(while i don't visit nearly as much :) ) and the great community here has also been tremendous in making me feel like i'm not fighting this thing on my own but instead have a whole army behind me , ready to back me up whenever I'm in need. So for now, ill continue to enjoy everyday that I'm feeling great and continue to appreciate all the things that i love because time is too precious not to. After all is said and done. all i am is grateful for the now and hopeful for the future because to be anything other than that in our situation is a waste.