Hey my name is Grace. I was born in Queens NYC, but moved to south Florida when I was 5. I am 25 years old and married now. I was a sickly little child and growing up, i always had colds, bled from my nose, ear aches, etc.. I was always put on antibiotics so thats what I am figureing killed my immune system… My husband is a United States Marine and we where station in NC… after he came home from the deployment is when all the heavy symtoms started. I mean i always had the stomach pain cramping and even bleeding but was told it was hemrroids.. right!! Any ways after almost a year of bleeding i told my husband he freaked out and took me to the Naval hospital on base. Long story short they misses Diagnosed me with Diverticulites.. wrong!!!! i continued to bleed until we moved back to FL and got to my worst point. But thank God for my DR her who finally gave me answers!!!
Some more about me:
Well I love to go out and have fun.. I really love movies. I was always smiling and laughing. I ALWAYYSS had motovation, was excited about life. Now all i seem to think of is will i bleed if i got to the bathroom or will I go some where with my husband and I HAVE TO WORRY “OH WILL I NEED TO USE THE BATHROOM.. WILL I MAKE IT?”UC has really taken a toll on my life I have only been in remmission once that was when i eneded up in the hospital again and they tried Remicaide after nothing else would work because I had allergic reations to ASACOL and APRISO. I just want my life back!
Well…. I was doing awesome after my 1st Remicaide dose in January but on Feb 25 was my 3rd infusion but thanks to all the cuts and my insurance Tricare will only pay 200 $ on this super expensive drug.. needles to say I havnt gotten my dose MD tried Asacol again and all my symptoms have returned but worse.. My body aches to the point that i cant sleep because the bed hurts me. When i stand after sitting i feel like i will fall.. and once again bloody stools frequent trips to the bathroom.. I am bloated like crazy.. i cannot eat because the thought of food makes me want to throw up! i went from feeling amazing going to the gym loosing more weight to not wanting to move because the headaches are so bad….Also i have had so many accidents its embarrassing… I even had skin reaction to meds and the colitis i guess that have needed to be cut open and drained…
My Battle with UC
Basically how do you guys cope?? I am just depressed it’s like all doors have shut in my face… no meds work but Remicade I cannot get it due to my insurance.. I am allergic to the tablets i just finished my prednisone taper and I am glad but the bleeding started? In January the Gi wanted to remove my colon its pretty bad in there its affected most of it if not all of it.. but due to me being over weight he says i wont make it threw the surgery. I have lost 50 pounds already but having no options is scary.. i eat very healthy now i watch what i eat i only drink water.. I was going to the gym but now with these bathrrom issues again I cant.. I feel so helpless my family and husband try but they don’t understand how the only cure is to remove the colon.. my family is always like ” oh there must be something you can due there has to be a cure!” my husband doesn’t understand the internal pain i suffer!! i have support but I always f eel alone… its horrible! Ulcerative Colitis I feel is in-control of my life and I want it back.. I wonder will I ever be able to get pregnant.. will i ever heal.. if i loose enough wieght d i remove my colon.. will i eventually get cancer?
Truly i have never felt so helpless so out of control!
I hate going to hospitals…
One thing is true i look back and see how bad i was that i was bleeding so bad i ended up with 2 blood transfusions something i thought would ever happen.. i am still standing!! I returned to work and currently am working. I feel down but I will fight this one way or another..Thats why i went looking and found this sight for support from people who understand me!
I was on Prednisone for about 6 months
I did 3 infusions of Remicade
ASACOL, APRISO dont work
only taking now protonix, metformin, starlix, levemir and birth control
also Diflucan for thrush from prednisone
written by Gracie
submitted in the Colitis Venting Area