She's Alive!

It's true, i'm alive! I did end up going through w/the surgeries. Now, i've joined the ever so popular group of "I wish i'd done it sooner". I feel fan.freakin.tastic! Had the surgery on March 11, and the take-down surgery 6 weeks later on April 22. It was absolutely miserable, and I wish it on no-one. I never want to do it again. On the other hand, i'm SO glad that I did.

I had the surgery in UT, which is 7 hrs from where we live. My family is there, and we definetly would need their help. They all fall down! I hadn't had my Remicade infusions, so that my immune system could build up for the surgeries. Naturally i'm miserable. Can't hardly even walk i'm so miserable. The bad part is my husband had his appendix removed the week prior to all of this. I was counting on him to be there to take care of our baby. Not the case... We're in UT, he's not doing well still! The night before my surgery, he's still taking pain pills, and feel pretty miserable. THEN, my mom passes out in the middle of the night, and can hardly walk from lower back pain. THEN, the entire house gets the flu...OY! I'm thinking i've got to cancel my surgery! I've waited so long, and am finally ready, and i've got to cancel. My walls were falling down around me. At 5 am that morning, my dad comes in and wakes me up. Says, you need to go get this taken care of, we'll figure it out here. So, off I go w/ my husband, mother-in-law, and grandma-in-law. Strangely enough, I feel really calm, and not nervous. I'm READY! I think it's great that I didn't have any Remicade because it was do the surgery, or just kill me. haha As i'm laying there to go in, my husband is sweating, and exhausted. He looks green! Ugh...

I wake-up, and vaguely remember people coming in and out. Flowers, cards, loves, I don't remember much of the first few days. I DO remember my husband's aunt coming in the middle of the night, and sitting w/me. She said that my husband had been admitted that night, and is in the room next to me. I just remember saying "oh no.....and going back to sleep" haha He had a HUGE abcess, and they were draining it out. If it didn't go down they would operate. Eventually it went down, and no more operations for him. He did stay in the hospital longer than me though. haha So, we'd each go on our walks w/our IV poles walk to the other's room, push the door open and wave...then back to our rooms. haha It was sad, and miserable really, but of course we can laugh about it now. So, i'm worried about my poor baby w/people he doesn't really know, in a house he isn't familiar with. Breaks my heart. I had the surgeon take a picture of the stupid colon, and I had them tape it right in front of me. So, I could see it. Nasty lookin' thing. I worked in the O.R. for several years, and don't remember seeing a colon look that nasty. It was the talk of the hospital.

I was in the hospital for about 4 days...I think...maybe 5? haha Then went to my parents house. It was great to be out of the hospital. I was doing really well, and walking more and more. The day after I got out, I got a DVT! Ugh again! My left butt cheek was hurting pretty bad, and just got more and more uncomfortable. Then my entire left leg was hurting, and swelling. So, I had my mom call my dad from fire meeting and to bring his friends. They hauled me to the hospital, and got an ultra-sound. That pain honestly was more painful than the surgery. It lasted for weeks. It was from the bottom of my foot up. The ultra-sound tech couldn't find the top...she went all the way to the groin, and lost it. The next day, my dr. said that it's the worst blood clot he's ever seen, and was scared for me. My sweet dad spent the day w/me at the hospital, and hauled me back home that afternoon. So, that added heparin shots to my belly twice a day and coumadin. Getting my blood checked everyday, and all the follow-ups. phew!

I'm not going to talk much about the ostomy because I don't want to scare anyone. In MY case, it was horrible...lots of pain. For most, it doesn't seem to be much of a painful problem. I did talk a fellow UCer into getting the surgery though. I showed him all the stuff, my bag, and he scheduled it and is doing great now too!

Had the 2nd surgery, and am doing fantastic! No accidents, I have all the control in the world. I have a new life! I lived 10 years in misery, and I can't believe it's all over. It just seems like a long distant bad bad memory. haha I go on boats, I go to amusement parks, on walks, vacations, road trips...anything! If you can't tell i'm completely happy w/my decision to do the surgery.

My family was fantastic through the whole thing. My oldest brother came up after work every night, and played w/my baby....helped put on the bag...haha Everyone was involved, and I couldn't have done it w/out them. Through all the "shitty" nights, we made it. Good luck to everyone! If you have questions, please feel free to talk to me.

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 part...is 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!