Ulcerative Colitis Tips


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My Battle with UC

Gracie with husband

me with my husband

Introduction:

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!

Colitis Symptoms:

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!

Medications:

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




3 Responses to My Battle with UC

  1. rico March 22, 2013 at 10:31 am #

    grace,sorry to here how ur feeling,ive been threw it all like you,i decided to get the jpouch surgery,and my life is a hell of a lot better,still never the same but i can work and at least get out again.it was very scary but well worth it….rico from long island new york..

  2. KimberlyHI
    Kimberly March 23, 2013 at 8:46 pm #

    Gracie, first off I love your name and your picture! Cute! So my husband is also a marine. We have never been stationed in north carolina, we are stationed in Hawaii right now. It really caught my attention when you said tricare will only cover 200$…did they tell you why? Do you have another insurance or something? reason I ask is because I have tricare as well and it’s our only insurance coverage, and they have completely covered my remicade. I am going on my 6th infusion. I did have issues at first getting them to cover it because they wanted me to try imuran first, that is when I was seeing a civilian GI. Then I changed to a GI doc at the base hospital and once I started going there I have not had any issues at all. It was a little fight with tricare at first though, they did not want to pay for that expensive med. Are you see a civilian GI doctor too, are you near any bases right now where you can see a GI doc on base? Also what about imuran, have you tried that yet? I am on remicade and imuran both at the moment. Both drugs work by kind of suppressing the immune system.
    well listen, me and everyone on this site, we all hear you! We all feel your pain, between struggles with doctors and insurance and family and friends not understanding…not to mention the pain and hell we have to go through. Being a military spouse, I can tell you every time we move, I get a flare, I guess from the stress, and we have moved 11 times sincce we’ve been in (13 years). Also, I welcomed a beautiful girl into the world 14 months ago, don’t feel like you won’t be able to have kids because of the disease! Yes it definately alters our lives and we know where all the bathrooms are and we feel sick a lot, but in the end we still must hold our heads high and live a great life despite the disease, we can not let it defeat us and keep us from our dreams. I hope you feel better soon, hang in there ok? Keep fighting!

    • KimberlyHI
      Kimberly March 23, 2013 at 8:50 pm #

      Gracie, another thing, have you looked into the exceptional family member program? Not sure how long your husband plans to stay in the marines, but signing up for that program ensures you guys will never get stationed somewhere that you can’t get your medical treatment.

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