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Thought I would shed some light as to what is going on with me. I really have little energy...being in a hospital bed for 4 days took it's toll on my legs and my MS is acting up...actually for the first time I am thinking about purchasing a walker...thats swollowing alot of pride. But I have already had two falls and I dont want to hurt myself.
I had originally posted(and wad it was deleted) about EVERYTHING that happened in the hospital...but I cant do that again.sorry. So I will try to give the IMPORTANT information and I will give updates from there,k?
Basically I have "free air" on the OUTSIDE of my large intestine. That should NOT be there...air belongs INSIDE the colon and thats GAS. When it is on the outside that means two things...either I have perfeation(sp?) already...OR my colon walls are THINING and causing that leakage. Either way it is NO good. This can/may cause colon RUPTURE. Something I have feared since being DX in 2002. My Aunt died from colon rupture-she had diverticulits(Aunt by marriage).
My GI did NOT want to perform a colonoscopy in the hospital because IF I have too much thining the scope itself can cause my colon to tear. But we NEED to know...because I can have a surgery to remove that weak area...instead of removing the entire colon.
So...the surgeon at the hospital talked with me and said surgery NOW...no....surgery in the near furture...maybe....surgery in the next five years...definete. Basically after the TEN year mark of having ACTIVE Ulcerative Colitis your risk of colon rupture increase,as does getting colon cancer. My own family doctor informed me that my next flare...I need to consult the cleveland clinic doctor for surgery. One day at a time!
I have a scop for March 19th. I am quite frankly terrified....as I should be. They will put me to sleep(which I HATE) and basically when I wake up I *may* and *may not* have my colon. IF there is thining or an actually leak/rupture surgery will happen RIGHT THERE,immeadiately. So...my family will know before me...scary. I have already asked my Father to take the day off(to watch the children) work so both Joe and My Mom can come with me to my scope. Normally a scope is NO BIG DEAL...in this case it really is.
I'm not scared of colon removal...or living with a bag...like who cares HOW I go poopy,right? But,I am scared of surgery...being put under and of course I am scared of the UNKNOWN.
I did alot of soul searching while in the hospital. There was a beautiful woman next to me in my room(once I was moved out of ICU). She was JUST dx with Ulcerative Colitis while I was there...I reached out to her,gave her information and she shared with me alot about God....as her Husband is a Pastor.
After coming home I have talked with my Mom about starting spirtual counseling through our church. I need guidance,from God...he is who I need faith in...not my doctors. I am also going to work on my confirmation...and I feel good about that.
This is what is going on now...I have an appointment with my therapist tomorrow 9am and I have much information(giving to me from an ICU nurse) that explains how prednisone(high doses for long periods of time) can cause maniac depressive behavior. What a wonderful nurse she is...she helped me more then my doctors.
I will keep you all informed.
Love you girls!
__________________ Nichole,Mommy to Emily and Ryan
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I am so sorry that you are having to go through this. This is my ultimate fear of waking up and one day I have to have surgery. You are in my prayers Colee.
I agree with the spiritual counseling. I have to say the only way I have made it through everything in my life that has happen to me is through God. I honestly believe that I didn't have my faith in God i would not be here right now.
My dear, dear friend. I am so glad you are home. But I will worry about you on Monday until I get an update as to how you are doing, and whether or not you had to have surgery. I have had a colonoscopy done before, and it's not that bad, but I would be afraid of waking up and not knowing whether I would still have my colon or not. I guess it is one thing if you know going in, but to not know---wow, I can't even imagine.
You will be in my utmost thoughts and prayers. I love ya, hon. Call me if you need to chat.
Wow girl. Your going through a lot and I'm very sorry. I will continue to pray for you. I agree w/having God in your life to help take on the stress. I wouldnt be where I am today if I didnt have Faith in God, I have overcome so much and I couldnt have w/out God .