Friday, November 12, 2010

Can't believe I have something going on with my new scar. Not sure if it's an infected stitch or an infection of the scar, but it burns like hell and is so uncomfortable. And of course it has to be right at the stoma so just putting the cath in hurts like hell. I pulled one of the stitches out...well didn't really pull, it just slid right out when I pushed on one of the areas bothering me. You would think that a month out of surgery things would be healed up. The doc wants me to give it the weekend to see how it does and we'll go from there.

I'm missing my sunday walks with Team Challenge and I was planning on cheering them on this weekend on their 10k, but if the pain keeps up like this there is no way I will be able to stand around that long without wanting to cry. We'll see how tomorrow goes and go from there. Hoping for a quick recovery and that it was just that stitch causing all the problems. I'd like to be somewhat ok to have a nice anniversary tomorrow.

Friday, October 15, 2010


Surgery turned out to be less extensive than I had anticipated...thank goodness. For some odd reason I informed Dr. Worsey & Dr. Launer of a lump that came and went just above my stoma so they both wanted to see if it was a hernia before cutting me open to fix a valve that may not need fixing. You couldn't feel the hernia no matter what position I was in or what "tests" they do. We agreed that they would make a small incision to check it out before doing anything else and it turned out that it was in fact a hernia. Had Dr. Worsey kept my cute little stoma intact I wouldn't be in so much pain today...mostly a burning feeling from the stoma edges. I really liked my little hole, now it looks like a big eye with a tongue hanging out of it. I'm hoping in the next few weeks it will heal up and look a little prettier than it does now and that this burning will end soon. I dread intubating because of it, but I know I can't put it off.

So surgery was on Tuesday and Wednesday morning I was back in La Jolla having Dr. Worsey putting my catheter in. It was like hitting a block wall. At 2am I was up trying to get it in. I tried laying down, sitting back on the toilet, standing, name it I tried and could not get it in. Forget the nurses in the ER...they had no clue. Dr. Worsey came in and had to put so much pressure to get it through I thought he was going to perferate my pouch. Once in I asked to keep it for a day or 2 and see if some of the swelling would go down and to not have to make another trip to the hospital. I took my cath out today and so far so good. I'm just emptying every 3 hours to not let it get to angry and tighten up again. Per Dr. W I have some strong stomach muscles and with the swelling my valve just got really tight. I really don't ever want to go through that again.

The highlight of the whole surgery was that Dr. Launer was there. He came in to see me before the surgery and all the nurses were so excited to see him. It was like he was a rock star. He looked pretty good for all he's going through. Couldn't believe he divuldged he had stomach cancer and was having his stomach removed at the end of the month. Pretty crazy for someone who creates intestinal pouches to be going through something similar just with his stomach. I am hoping and praying he gets through this and has many more wonderful years on earth.

Sunday, September 26, 2010

Decisions Decisions

So it has been determined that I need surgery. I have a patulous (floppy) valve which is causing the intermitten incontinence. So now I have to decide if I have surgery with the doc who took over for my original doc or do I go to the Cleveland Clinic and have it done there??? A week in the hospital, 2 weeks with the catheter in...THIS REALLY SUCKS! With a family, kids, work it's not the easiest to be away for 3 weeks should I go to Cleveland and if I stay local i'm not 100% confident in Dr W. The one saving grace of all of it is that Dr. L offered to be in the surgery and assist or do a teleconfrence type thing. All in all they can't determine exactly what needs to be done until they are in there. I was really hoping to not have to do this so soon. I had 19 yrs with my j-pouch...I was hoping for at least that same amount of time with my k-pouch. Hopefully I will get more answers this coming week to make a sound decision.

Monday, September 6, 2010

2nd Leak

2nd day of training for the Vegas 1/2 marathon and it hasn't started out so good. Last Sunday my pouch was really angry and today I was hoping for a good walk, but it didn't turn out so good. Started off the walk with that little pain under my belly button and then a burst of air released. I thought that might actually help and not cause me to have any issues while walking, but deep down I knew better. My pouch was cramping on and off and about half way back to the park it started leaking. It's really uncomfortable when it itches and burns and all you want to do is get it cleaned off. I wasn't sure if it was just going to be that little bit or if my valve was open enough for it to continue spewing. It's not like I could just stop on the street corner and whip out my tube or clean it off without grossing everyone out, so I just kept shoving tissue to cover my stoma hole (thank goodness I had extra tissue with me) to keep as much away from my skin so it wouldn't get irritated too bad.

One of the girls offered to run back and grab my bag so I could replace my stoma cover (note to self..put covers in my bottle belt), but it wouldn't have done any good so I just bit the bullet and kept on trecking back at a pace I could handle (which was as fast as I I made it back to the park and headed straight to the bathroom. It wasn't just a little wouldn't stop until I got the catheter in. Thank goodness I carry a tube & lube with me and my friend went to my car to get my covers (Thank you Angelique).

Thank goodness I don't freak out or get upset when this happens, but now I know more than ever that I have a valve problem. Twice in 9 months since my surgery is not a good sign. I've had air escaping since early on and I could handle that, but the leaking is definitely a concern. It is supposed to be a "continent" ostomy after all. I have noticed that it follows a pattern...when I am exerting myself. The 1st time was when I was on a hike...see the pattern?

I should have my valve checked and I promised myself I would if it happened again so tomorrow I will make an appointment to head to lovely La Jolla and see what is going on. Hopefully it will show nothing serious and something that could just resolve itself. If not I will tackle this just like I tackle everything else in my life, with strength & courage. It's funny I just bought this ring that was engraved with the word Courage on it and a bunch of little sayings and one of the sayings is "never, never, never give up" and that' exactly what I plan to do!

Sunday, August 8, 2010

20 Year Reunion

20! how time flys. It was great seeing everyone, especially those that I went to school with since kindergarden. Most remember me as being sick so it was nice for them to see me as being well. One of my old classmates said he saw my name on the list and out of everyone he wanted to see me the most. All he remembers is seeing me at 8th grade graduation in a wheel chair and then I was gone. I unfortunately was only able to attend MHS until early 10th grade and I was in and out of the hospital so much that I was pretty much invisible at school. He was so happy to see that I was well and I was finally able to explain what was going on with me at that time.

When you are 13 it's not like you can have a conversation with your friends and say...Hey I have Ulcerative Colitis! Still some adults don't even know what that is, but at least when you explain it they understand. It was funny...I did have a little woopsie moment there, but handled it with grace...or at least I want to think I!

It doesn't matter how long it's been since last seeing someone...we all seem to fall right back in from where we last left off like no time has passed. I have to say I've been very blessed to have some amazing people in my life and I'm excited to rekindle some old friendships.

Monday, July 19, 2010


So I finished the Napa to Sonoma half marathon on Sunday in 3 hrs & 22 minutes, just shy of my goal, but still happy as a clam. Our weekend started off on Friday and my husband and I headed up to Oakland to see an old friend from high school. Her & her husband were incredibly gracious, cooking us up a nice steak dinner and letting stay at their house. We had a nice breakfast in the morning and headed up to Santa Rosa to meet the Team. Saturday didn't feel like we got much accomplished, but we went to the expo and picked up my bib #2492. The anticipation of the race definitely kicked in at that moment. We walked around a bit and soaked in the art around us.

Later that afternoon we were off to the pasta party where all the Team Challenge chapters from across the US and some overseas, met up to cheer eachother on and really get pumped up for the big event.

4am alarm and I was up and raring to go. We all met up the lobby and the pictures started snapping and everyone was getting excited. Off on the bus at 5am and headed to Napa. The race started at the Cuvaison winery. What a beautiful piece of property! The "walkers" were able to leave a half hour before the "runners" so we could have some extra time to make it the 13.1 miles. My teammate Dayna and I were off and going. Her and I walk the same pace so it was perfect to have someone along the course with me. At every mile marker, started with 1, we would raise our hands above our heads and scream. We walked through the most beautiful areas...through vineyards, rolling meadows, tree covered could not have been a more incredible course.

Before we knew it we were half way through the course and still had plenty of energy. By mile 9 my legs started tightening up and I was definitely fighting through the pain. We had some great encouragement along the way which helped out tremedously.

As we rounded the corner just after mile 12 we could see the finish line. Done the long main highway to the town square. We were so happy and kept saying "we are going to do it" was an amazing feeling. I started to get a little emotional and had to fight off the tears. Just before mile 13 we started to jog. Our plan was to jog as often as we could (and we did throughout the course), but to finish running past the finish line instead of walking it in and that's exactly what we did. We ran in, arms in the air screaming one last time. With a high five and a big hug, Dayna and I had completed the challenge we had set forth for months.

I ran for myself and my fellow koch pouchers. I had my jersey all decorated in their honor. Dayna ran for her her daughter who has UC and had recently had her j-pouch. Everyone on the course had their own story and their own personal accomplishments. For me just having raised over $3000 towards CCFA and having completed a half marathon just 7 months after my koch pouch surgery was an amazing accomplishment for me. This is a moment I will never forget and I am grateful to be healthy and to have such love and support around me.

Thank you to my family & Dayna for being my walking partner I would have not made it through all the pain without your support.

Monday, June 28, 2010

Graduation followed by Dr visit

Well we made it through graduation. Ian and I had our cry moment after it was over and we took our post cry picture. Every time I look at him I am in aw of the young man before me. I wish nothing but the best for him and I hope he lives life to the fullest.

Friday I went to see Dr. Worsey. I drove all the way to SD for nothing basically. He couldn't scope me because my stoma is too small for the scope in the office. He again told me to keep an eye on the air release and if anything else comes with it to call in and schedule to be seen at the hospital (of course that's where all the smaller scopes are). I really wish he could have made accomodations for me while I was's not like it's around the corner.

Sunday I walked 10 miles and then went to breakfast with the team, on my way home here came the air and a little extra with it. I'm hoping it won't happen again. I'm starting to learn the signs of when it's going to happen. Nothing worse than being around other people when it does. So on with life and my upcoming 5k on the 4th of July.