Sunday, February 28, 2010

Say Wha?

After the holidays and a relocation I just disappeared. Other than I really had nothing new to report. Now...that's a different story. The Remicade has made me about 50%. From 15-20 bathroom trips to 8-10. The urgency is the killer though! So, after much nagging from my family (thank you) I went to see the colo-rectal surgeon. He wanted me to meet w/an ultra-uber-goo-roo GI doc. Just to make sure. He said there's nothing like wondering after the fact if surgery was really necessary. Anyway, the ultra-uber-goo-roo dr. wanted to scope me. No surprise there. They all have to see first-hand what's going on apparently. I had a bone density scan and everything was good there. I'm "severely severely Vitamin D deficient." Then the scope! Ugh! I did get to try TriLyte this time around. That is much more pleasant tasting than Phoso-soda. If pleasant can even be used to describe anything connected to a colonoscopy.

Fast forward to the end of the scope because we already know what goes on there. The dr. comes out...looks at me and says "I think it might be cancer" Yup, the "C" word! My heart dropped. He said it didn't feel like cancer, but looked like it. He also said that he was only able to go 6 inches before my colon started to tear. There's so much scar tissue that it's smaller than a pencil. So, who knows what secrets my entire colon holds if the first 6 inches look like that.

The longest wait of my life started and lasted from Friday to Thursday. Luckily though those 6 inches don't have any dysplasia. The bad i'm scheduled for a total colectomy on the 11th of March. In the back of my mind I think i've prepared myself for all of these things to happen, but it was still hard to hear. I walked out of Endoscopy, saw my dad and just started bawling. Something I don't ever want to go through again. My week of waiting consisted of getting things ready for the worst. I have a 10 month angel little boy who is attached to my hip. A wonderful family that means the world to me. So, I smiled and laughed and made jokes. I knew they were all worried and suffering so it wouldn't do any good for them to see how upset I really was. I am so thankful that it isn't cancer.

In a weird sort of way, i'm excited for surgery. I'm going to be able to have a life again! Of course the thought that i'll get pouchitis, or this won't really make anything better are there. I want to stay positive though, and think that it will. I can go on road trips! Not have to look for bathrooms everywhere I go, and spend the entire time in the store wondering if I need to start running. I can take my spare clothes out of the diaper bag! After 10 years of this disease i'm ready to move on! The hospital stay is going to be 5 days if things go well. Then 8 weeks later i'll go back for stage 2. It's going to hard, but i'm ready. It will all pay off and be better in the end....I'm sure of it!


  1. I'm sorry that you are having to go through this. But as I was reading your post, I started getting excited too. You are going to have a great life! And it sounds like you have wonderful people to spend it with too! I'm going to keep you in my thoughts on the 11th! I'm hoping the best for you!

  2. I have recently been through this, and life is certainly better than it was. Its a big experience and I wish all the best. You might be over the worst by now?


  3. Good luck...I hope all goes well :D

  4. Hi there,

    Just wanted to write to say your story sounds familiar to me - my daughter was only a few months old when my UC started to flare out of control. I had my emergency colectomy when she was one year old. In spite of having ongoing problems with pouchitis, the colectomy and jpouch surgeries were so worth it as it was getting to a point where I was so sick with UC I wasn't able to be a mom anymore. Now, my daughter is almost four years old and I am happy to report I'm just like regular mom who uses the bathroom a bit more than most.

    Best of luck to you with your surgeries. It will be worth it in the long-term.


  5. Hi Hilary - Just wanted to check and see how you were going and if everything went ok for you. Hope your recovering well and the op was a success.