Wednesday, September 30, 2009

Yes please!

I'm getting my long awaited Remicade infusion tomorrow! Who knew that having an IV in your arm for 3 hours could be something to look forward to.

The Remicade has gradually gotten less effective over time though. I'm completely horrified of surgery, but know that is my next step early next year. I worked in the assisting in the operating room for 4 years. The more I know, the worse off I am. When I had my c-section in April, I knew what was in the O.R. and on the back table, I just didn't want to see it. Every instrument they called for every noise they made freaked me out! I honestly am just better being left in the dark on certain things.

So, tomorrow at 10 am sharp I will be there w/my book in hand ready for the juice. Fill 'er up!

Monday, September 28, 2009


I was lurking on the j-pouch community site the other night, and a topic caught my eye. Once we get the colon removed are we cured? I've always thought yes. We are cured of UC, but not of our genetic tendancy to welcome auto-immune diseases. So it's safe to say we are cured yes? A guy said "no." He went on to say that they remove the organ that is being affected by UC. Well isn't UC affecting the colon, not your hand? Something about since they can't tell you what causes it, there's no cure. Well, we can't really pin-point what causes a lot of diseases... Basically a colectomy is the current treatment not cure.

I'm so confused by his statements. I feel like I just walked in a big circle. Where else would UC be a problem once the colon is out of the picture? Yes, the rectum but most of the time that is removed also. I plan on keeping my rectum, so I guess i'll always have UC, and never be cured...


Wednesday, September 23, 2009


Do you ever wonder where you would be in life if you had never gotten UC? I've never really thought about it before... The weird thing is I was a different person before I got this disease, a different person 4-5 yrs into the disease, and a different person now. Not some drastic mutiple personality type of person.

Before I was on my way to bioch city. Everything I wanted was lining up beautifully, and I was getting an attitude to go with it. So in a way, I can be thankful to the UC for that. Thankful...ha! Then I came out of remission, and got mean. I was pissed! The depression came on. It just wasn't fair. I don't know exactly when it happened but I decided that I was over being mad, and tried very hard to find something to get out of this. I still definetly have those days where i'm mad, and wishing someone else could take a turn. Strangely enough this disease has made me more patient, understanding, and compassionate.

So where would I be w/out it...

I need a fix

My Remicade infusion is just over a week away, and I want to die!! I started Remicade April of '08. It's the last ditch effort. Right after my colonoscopy was over, the dr. had the nurse start my first Remicade infusion. He said "you are so sick, I can't send you home w/out starting now." It has helped to the point of I wouldn't NOT get it. As far as being my saving I was scheduled for a total colectomy last July when we found out I was going to deliver something other than a colon. So now that my sweet little baby is here, it's looking like early part of next year to deliver Lucifer. That's what I call "the colon"

I get the highest dose, as often as they'll let me. They've even tipped over the highest dose to give me 11 vials every 6 weeks. It takes a good week to kick in, and is gone at least a week before. I still RUN to the bathroom constantly, and don't dare go anywhere because of the urge. On a positive note i've gone from blood, mucus, 15-20 times a day to 8-10 not much blood, and no mucus. When the Remicade is actively working in those 4 weeks.

Ya know, I think I could live with going to the bathroom all the time, but the urgency is too much. Nothing sucks worse than getting up at 3 am to make a screaming baby a bottle, and shitting yourself. Luckily my fan-freakin'tastic husband was there to take over.

Tuesday, September 22, 2009


I've been reading UC blogs for about a year now. They always have something profound to say. Yet, I have nothing... I love that others can express their feelings about this disease though. It is a tremendous help to me. So thank you UC bloggers!