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.

Surgery

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, breathing...you 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.

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.

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 leaks...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 could...lol). I made it back to the park and headed straight to the bathroom. It wasn't just a little leak...it 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!

20 Year Reunion

20 yrs...wow! 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 did..lol!

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.

I DID IT!

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 streets..it 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" ...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 & friends...to Dayna for being my walking partner I would have not made it through all the pain without your support.

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 there...it'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.

Surprise Gift

My son Ian is graduating on Thursday and today we are celebrating with his great grandmother Juanita since she will not be here on that day. She is giving Ian a big gift and we've kept it a surprise for months now. Last November their great grandfather Jack passed away. He was an incredible man and we miss him dearly. It was just his birthday...unfortunately I can't remember if it's the 18th or 19th because Jack & Juanita's birthday's were back to back. So just before he passed away he told grandma that he wanted Ian to have his truck. Today Ian is getting his first car and funny enough he doesn't have his drivers license yet, but I can't wait to see the look on his face. He has no clue! I'm sure I will cry from the joy on his face. I've been crying for weeks now thinking about my son graduating from high school and becoming a man (crying now just typing this out). I even started crying when I read through all the graduation cards...having found the perfect one that says everything I feel.

How do they grow up so fast? It feels like he was just born yesterday. My first child is graduating high school...still blows my mind. Now he'll be starting college and living an adult life soon. Fortunately he's not leaving the nest just yet, but when he does I don't know what I will do. For now I will keep guiding him through life as best as I can and hope that he will make the right decisions for himself. I'm truly blessed to have such an incredible son. I LOVE YOU IAN!

Happy Father's Day to all the great fathers in my life. To my husband, thank you for being a great dad to the boys. I'm so grateful you are in their life and that you have helped make them who they are today. Your guidance and faith in their dreams has been a true blessing.

****update from the event: Ian opened the box and at first he had this look of confusion...then he started to cry when he realized what he just got and who it came from. He was so overwhelmed with emotion and we all started to cry. Here's a picture of him after the tears wore off and the excitement set in****

Special Day

Happy Birthday to Kaleb who turned 2 today. He was so cute opening his presents and blowing out his candles. Can't believe how much he says and how open he is to learning new things. He can actually say ZiZi which is really hard to say for most people. When he tells me love you ZiZi and give me a big hug I just melt.

13 yrs ago we lost my grandfather...we called him Pepe...to pancreatic cancer, it would have been his 87 yrs old today. When Kaleb was born 2 yrs ago we all cried because it was such a special day for him to be born. He was 3 weeks early and we kept saying he was going to be born on Pepe's birthday and sure enough he came on his own that very day. So every year we have a lot to celebrate.

Love you & miss you terribly Pepe. See you in my dreams.

Walk & Pool Time

Sunday I walked 9.3 miles in 2 hrs & 40 minutes. Team Challenge participated in the Brentwood 5 & 10k. Myself and teammate Kelley were the only 2 walkers to do all 9.3 miles. We came in after the stop clock was shut down, but we didn't care, we were just happy to have done it and now we know what it will be like to do the half marathon in July. My legs were numb by the time I finished, but I felt great and could have kept on going. This is definitely one of the best experiences of my life and I'm so glad I have someone that walks at the same pace I do to keep pushing eachother along. I can't wait for the race in Napa!!!

Yesterday was the first day I spent time in a pool & laying in the sun. Hung out at one of my favorite spots in Palm Springs. The massive bandaide I had one didn't do the trick the 1st attempt in the water, but held out on the 2nd attempt after changing it. Things definitely felt different in the water and my stoma moved more than ever. Either I was having a bad day or water impacts me in a different way. All in all I'm happy I was able to partake in something I enjoy doing.

World IBD Day

It's so exciting to have a day for us finally. I never realized there wasn't one. My pouch didn't quite behave today and of course it had to be the day that all my senior management was in my office and we had meetings back to back. Needless to say I made it through the day with no damage, but not the kind of days I like. Well the best part of the day, aside from it being IBD day & wearing blue (my favorite color)...one of the offices participating in my fundraising efforts announced they raised $500 by selling tamales.

I've got an office challenge going on right now and it's basically called a "dime" drive. Filling a 16oz bottle full of dimes = $100. So the challenge is to collect as many bottles of dimes as they can and the winning office gets to keep a bottle to spend. Now most of our offices are split up in to teams so it's really by the team. Now who wouldn't like $100? So out of the blue I get this email announcing this and I was so overwhelmed I almost started to cry. I was hoping that each office would collect at least 1 bottle...maybe 2 at the most, but for 2 teams (who joined forces) raised that much money I was at a loss for words and we still have another few weeks to go. That inspired my office to do something similar and one of my Loan Officers said he would buy the tamales and let us keep the profit on it. How cool is that? And to top it all off, the company I work for matches the donations. So I am going to definitely exceed my goal which is fantastic news!!!!!

I'm one lucky girl to have a great support team around me. I took this day to not only make everyone aware, but to thank my office for all their support while I've gone through all of my trials and tribulations these last few years. Soon I will be stepping down, but I know the support will always be there. Thanks Woodland Hills Team B02 & B06 for your incredible fundraising efforts :)

great day ended with a leak

So my day started out fantastic...got up, got dressed and out the door I went on my usual Saturday morning walk. Only today was absolutely gorgeous out. People were down at the already at 8:30am beach playing volleyball, walking, riding bikes, roller blading, jogging...even setting up camp for a day at the beach. I love mornings like that! and it was even warm...now I really love that! Brodee was off to a Jazz band competition with school and Ian was hanging out with his friends. So I went into the office for a bit, got some things done and the hubby text to see if I wanted to go on a hike. We met up around 2pm and off we went to PV. I've lived all over that hill and had never been to this area. We went on a beautiful hike down this trail and settled up on a knoll with trees. There was a little sitting area overlooking the coast and we sat there for a few hours while he serenaded me with his mini Martin guitar. I love when he does that and we sat and soaked up the sun, got to pet a few dogs as they came around with their owners and watched a few lizards scamper through the brush.

Heading back up the hill to the car we watched a man unicycle the same hill...I seriously don't know how the heck he did that. Near the top my stoma started to twitch and all of the sudden I felt air and more. I was hoping the more part was a figment of my imagination, but it wasn't. It poured out and the pad was covered. So we walked a little faster and a more came out. Got to the car and cleaned it off...still stuff coming out. I thought it was under control and here came more air bubbles and that not so good feeling. My husband was worried and I was too, but I was trying to be calm and rationalize why this could be happening. Of course apologizing for the smell and he said "don't worry hon, it's like a wet fart" I enjoyed the laugh and we headed to the nearest Starbucks so I could get my catheter in. I had no trouble getting it in. My thought is that my valve didn't shut all the way after my last intubation or something got caught in the valve causing it to stay open slightly which would make the most sense to me seeing that I haven't had another incident since and my pouch was pretty full when I emptied it. I typically take it out slowly and I was in a hurry to leave and took it out quicker than normal. Maybe a darn piece of lettuce got stuck...who knows, but I'm hoping it will never happen again! I'm just glad i was with my husband when it happened.

Helping Others

I walked 5 miles today with Team Challenge and even jogged a little. I was surprised that I felt really good and I didn't feel my pouch jiggle around like I thought it would. So I plan on trying it again next week for a little longer and see how I do. After our team breakfast I went to Huntington Hospital to visit to step 1 jpouch patients. Dr. Kaufman performed thier surgeries on Wednesday & both of them were doing really well. I got to see both of their ileostomies and I even help Claudia change hers. It's really weird doing it for someone else, but she was a trooper and I really enjoyed helping her out and making her feel a little more comfortable about it. Michael was a hoot and he had the perfect looking stoma. I can't tell you how much I enjoy helping other patients, whether it's with an ostomy, cancer, jpouch or koch pouch. I feel very fortunate with all my surgeries and I am grateful to be given the opportunity to help others. Life is good!

Rough Day

I don't know what happened today, but i've been hurting all day. It started at 5am and hasn't let up. I didn't eat anything unusual so i'm really confused. My stoma hasn't stopped moving all day and my pouch has felt full all day long. It almost feels like it was cramping and heavy. I'm hoping tomorrow will be a much better day.

I was down to intubating 3 x's a day and feeling really good and I'm sure I will get back to that, but it's just so random to feel this way. I can't believe I made it through my day at work, but I did leave earlier than normal and have intubated 4 x's already today. Now I'm just going to try and wind down and relax tonight. It's windy and cold today and I'm going to enjoy curling up on the couch with my boys and watching some tv.

Kids & More

Normally I don't post about my kids, but I just have to. Last night was their first major gig and they were FANTASTIC! I could not have been prouder of them. I was just glad I was finally able to get past the body aches I suffered from for the majority of the day. I got up at 5:45 to get ready for training (week 3) and felt fine...walked 3 miles...went to our team breakfast and headed home. Not sure what happened but the minute I walked in the door my entire body started aching. Took an hour nap and still didn't feel any better. Some advil, hot shower and a few hours later I was finally feeling well enough to feel confident I could be there for the kids. Not sure where this is all coming from. Seems like I get one thing under control and something else comes up. All in all I can't really complain...it could be much worse. Today I felt great...a little sleepy from the late night, but no aches. I gotta be 100% to be a cool rocker mom :)

Lettuce

So I tried eating lettuce on Sunday with my hamburger and I didn't have any problems. Of course I ate just a little to test it out, but now I'm ready to try a salad and see what happens. I'm starting to find it fun to try new foods now. Really at the end of the day what is going to happen...get caught in the tube...I can handle that. I loved Les's approach...eat everything which is exactly what I did with my Jpouch and then I would say.."i'll just pay for it later" which is probably what I will do eventually. Actually I already do it with avocado. I just realized that I'm beyond happy with my pouch. Just like when I had my first Jpouch. If you could see the smile on my face right now :) KP life is good!

KP Lunch

Fantastic day today. Training in the morning...knees a little sore, but felt good. Then headed down to Carlsbad to meet fellow K-pouch people. Picked up Al & Janice and headed down. We didn't stop talking the entire time. Lunch at Ruby's with everyone was great. Hearing everyone's story, giving eachother tips, what works...what doesn't. Being with people who really understand makes a huge difference. As I looked around the table we were of all ages, sizes, race. Whether we had UC, Chron's or Cancer we all ended up with this special pouch and I am fortunate to be part of that select group. I can't wait until we do this again. Until then we keep each other posted via facebook. The internet is an amazing thing. To all my KP peeps...I'm walking the half marathon for you!

Stuff

Still having the shakes...seems to be worse when I'm under a lot of stress. My stoma has had some blood draining onto my pad...I can't see anything when I'm draining so I'm thinking it's a surface issue. I think I must have an imbalance or something. Maybe i'm lacking vitamins or minerals. I need to see my primary physican. Would like to find one that knows about KP....wishful thinking huh? I am looking forward to my replacement being found soon so I can get out from under the intense pressure at work. I'm looking forward to training on sunday and meeting all the KP folks in so cal.

I really hate when I have anxiety attacks. I feel like I can't catch my breath and it usually is a sign that something is wrong. It can be anything. My boss dropped a bombshell on Wed that she was taking another position in the company...that made me sick to my stomach. I thought it was that, but aparently it's not. I was fine for a few days and now I'm having them again. I don't think it helps that we visited the tax auditor and have to do more work than we already did. That appointment really took my pouch for a loop.

This morning I wake up and all i want to do is go back to bed and sleep. Sleep away my day and hope that tomorrow will be better. I hate when I get into these depressed moods. Feels like the strength is sucked out of me an I have none left. Oddly enough this always happens when my kids aren't around. Maybe there's some corilation. My head is spinning with too many things and I just want it to stop. What is the old saying...the 2 sure things in life are death & taxes???

Gorgeous Weekend

It's the end of March and we had a fantasticly warm & sunny weekend in so cal. I took a 5 mile walk along the beach with my youngest son Brodee on Saturday. My stomach muscles were cramping up a little that day which hasn't happened before. Maybe I was a little dehydrated...who knows, but it felt good to be out walking and soaking up the sun. Later that night I went to 2 birthday parties near my home for 2 friends from grade school. It was like a mini reunion and a chance to reconnect. I love that!

Today was Team Challenge kick off party which I shared with my husband & kids. I came home with a shirt & 1.5 bottles of wine. Let's see if I can tolerate more than a few sips..lol (I'm such a light weight).

My stoma has been sore these last few days...I think I need to slow down while I'm eating. I try hard, but it's a down fall of mine. I will start officially training this week so it's important I feel good. :)

Roller Coaster

I feel like I'm on a roller coaster lately and I really want to get off. Work is insane and going too fast...although I feel like I've accomplished a lot lately, it's still so much and the ride isn't over yet. Some unexpected news made me evaluate some things yesterday which made my stomach curl up in knots and it still hasn't gone away (no dinner for me tonight). I had a CT scan for my left ovarian vein check with no results to report, however the so called "wonderful" nurses were supposed to get the IV in the first time didn't get it in until the 3rd time and my hand looks like someone abused me. Meme (my grandma) had surgery on her back and it's worse than they thought. We are hopeful she will just be in less pain, but that's about all that will be accomplished....she has an unstable spine. I don't feel like I have enough time any more and when I do I'm too tired to do anything. Hopefully training will turn that around. I just want to feel happy, but right now I feel deflated from everything going on in my life. I guess today is a downer day...tomorrow's sunshine I hope will bring my spirits back up. Maybe a trip to the beach (mini calgon moment) and not going into the office will get me back on track and feeling good....

Love my KP family

I spent the afternoon with Allison on Sunday and had a great time getting to know my bday twin & KP sister. We share the same birthday and it's funny how we think so much alike. We compared our stoma's and the many scars we've gained over the years. I think I have 2 more than she does...lol! We had such different stoma's...hers was more of a flat cherry stoma and I have this tiny hole that's just big enough to fit my catheter. Almost looks like someone just slit me open...kinda like a big eye (minus the eyeball of course). I feel like I'm the black sheep of the KP group with an innie. I hope it's not going to be an issue over the years. I had stricture issues with my Jpouch...certainly don't want that with my Kpouch.

Yet Another Change

Well I signed up for Team Challenge half marathon from Napa to Sonoma on July 18th and I'm very excited to get started. Put up my fundraising webpage and got it out on Facebook so far. Today I made a decision to step down from my managing position and go back to underwriting. Time for some quality of life and to put my health in first position. I've accomplished my goal of managing and have been doing it for 5 or so years. The industry has changed so much and the stress is just not worth it any more. It's amazing how surgeries and health issues put a new perspective on things. I'm doing things I never imagined I would do and looking forward to what life has to offer. Let's see where else my KP adventures take me.

Air Bubbles

So I was sitting at my desk today...feeling a little pain like my pouch was full and all of the sudden I had these air bubbles come out of my stoma. It freaked me out at first and I thought it could be more than just the air. From all accounts I was told that was not supposed to happen. Fortunately I removed my gauze and there was nothing there. I intubated and everything came pouring out like water. I guess the pouch got too full and the air had nowhere else to go...who knows. Of course I reached out to my 2 trusty friends, Allison & Janice, both with the encouraging words. I'm so grateful to have them in my life for support.

Laughter is the best medicine

Well today is a rainy saturday...I headed out for a walk and the sky wasn't looking so nice so I took a quick walk to the donut shop (for the kids of course) and headed back just in time to be caught in some rain, but didn't get soaking wet...phew! Now off to do some work at the office while there is peace and quiet in there....GOTTA LOVE IT!

It's funny how you start your blog out thinking you would write every and keep a complete journal of your experience, but then life takes over and you are back to reality with work, kids, family, etc. As of late I'm going full out with food...some not so good experiences, but good to learn. Threw up last weekend for the first time...that sucked! Found it to be no different than with the jpouch except that I was a little nervous that my pouch was empty and had gone oh 10 hours before anything did come out. I've learned I can handle beer quite well, but a glass of wine will get me drunk in 5 seconds. I was never a beer drinker before so it's something new. Last night we went out with some co-workers (we all work in different offices) & their partners and we had a blast...we laughed so hard my stoma was aching. We will forever have a running inside joke...thanks Ruth!

Barbie Butt..LOL

This young new K pouch patient described her new look down there as a Barbie butt...I thought that was the greatest thing in the world...laughed my ass off when I finally got it. We have to find some humor in all we endure. Since my original analysis of my butt...it now looks normal...well as normal as it can be. At this point I really don't care any more...I'm just grateful to be healthy again and doing so well with everything. So to all the new folks with a K pouch...welcome to the Barbie or Ken (for all you men) show ;)

What a week

Work has definitely been challenging and I find myself exhausted by 8pm. I lay in bed and my feet start cramping and I think...did I drink enough today? It seems like no matter how much I drink (incorporating grape or prune juice throughout the day) it just doesn't seem to be enough, so I down a vita pack and try and get some sleep hoping that tomorrow will be an easier day. With the jpouch it took all of 2 minutes to empty...now I spend sometimes up to 30 minutes between preping, intubating, cleaning up & bandaging....I think 15 has been my shortest. But I look back on what the fisutla infection was causing to my body and I thank God this surgery was available. In my eyes it was another success and as afraid as I was to have it...I am really grateful. I've tested out some new foods this week and did really well. I'm learning to not be so afraid and just give it a try. There are some foods I will forever stay away from, but I can live with that. My next hurdle is getting the courage to start training for the half marathon in July...dehydration is my fear. It's time to put fears to rest.

Work Week 1 Accomplished

Well I got thru my first week of work without injury. I could totally see myself getting caught up and missing my schedule so I've started setting my alarm for a half hour earlier to give me some time to stop what I'm doing and take care of business. Thank god my staff is very supportive and realizes the importance of this. It's really hard to describe how similar yet different a koch pouch is from a j pouch. I used to run to the bathroom multiple times in a day, but the feeling was the same as everyone else. Now I have to be on a clock or recognize the signs when it's full. I get so caught up in things I'm doing and am so trained to be free that way that I tend to lose track or allow myself to get side tracked...that is not possible with a koch pouch. My goal this week (last week at 6 hrs) is to put up positive affirmations in my office and to not allow the intensity of my job get in the way of my health. I love what I do, but I love my life more.

Work day 2

Well I still don't have system access, but it's probably for the best...giving me a chance to ease into work. Went to Westlake Village yesterday and Santa Monica today to sit with other Ops Mgrs and get a feel for all the changes that took place while I was out. So far my pouch seems to be acting normal (aside from the thick output) so I'm really happy with that. Seems my body has taken to the pouch very well and I'm slowly venturing out of my comfort zone when it comes to food. Had sushi yesterday...no problems. Thank goodness cause I LOVE sushi! I'm also adapting well to emptying in public...figuring out what I need to make that easier as well. So all in all...I'm doing pretty good....yay!!!!

Doctor's Visit

Saw Dr. Launer today and i'm in the clear...he wants to see me back in a year. Found it odd that he only looked at my stoma, felt my belly and said I was good to go. I thought he was going to check my pouch with a scope at least. I feel that I'm doing great and I've learned to read my body pretty well so I'll take it as a good sign that I have no issues to be concerned with. I am clear to start working out...can't wait to get my body toned and strong again. Got my tattoo done today which is perfect because it's the day I was cleared and my tattoo has everything to do with my freedom from all of this. The purple ribbon represents Chrons/Colits and the wings are new beginnings/change. I am fortunate to be alive...I am fortunate to have had 2 major intestinal surgeries in my life to be a success. 19 yrs with my Jpouch....I hope for the Kpouch to last the rest of my life. IT'S A GREAT DAY! :)

New Things

Tried out a new catheter yesterday...the Marlen...I liked the way it went in so effortlessly, but I'm still not sure about it's ability. I'm going to keep giving it a try for the next week and see. I switched back to my old one just to compare this morning and the Medena definitely has a harder time going in. If the Marlen rounded head means longer sustainability for my valve then I will definitely be switching over. I want this sucker to last me the rest of my life....no more surgeries!

Woke up this morning with a crappy cold sore :( I really hate those things. I guess my body is telling me it has become run down...that's usually when I get one. Figures it would be the week before I return to work. Maybe I'm stressing and don't even know it. Whatever it is I need to let it run its course. I'm seeing Dr. Launer tomorrow...I hope he releases me to start working out. I really want to run the half marathon for Team Challenge this year in July.

Good Times

Well the past few days have been going really well. I'm learning to adapt to situations and I'm not letting this get in the way. Last night I went out to this fantastic club called Voyeur with some friends and we had a blast. I'm feeling so much better being out and leading a normal life. Now I know I can do this...I really never thought I couldn't, but I'm adapting so well that I feel like the sky is the limit. Going to enjoy the beautiful sun today.

rainy thurs

it's still raining today...day 4 of this....much needed, but causing some major devistation. i picked up my boys from school yesterday and the short walk to the car they were drenched from head to toe. fortunately i'm still on leave and haven't had to drive in this much. ok so i now know that if i eat avocado's it has to be a minimal amount...i paid for it all afternoon and night...not worth it! hopefully i can get back on track today. i did learn something new which i thought was odd, but hey it works. if i tighten my stomach muscles it helps move things thru the catheter..not always, but most of the time it does...weird.

6 hrs...wow!

Another rainy day...and so far I have made 6 hrs since last night. Yesterday wasn't so easy, but I knew I would eventually and the night was the best time since the bowels tend to relax and sleep. The test was this morning and whether i could make it till noon...well it's noon and I made it...woohoo!!! gotta keep the momentum going. Aside from that I had my eye exam yesterday and my perscription increased slightly in the right eye so not bad. Got new glasses and even had sun glasses made. Hope we don't float away today with all this rain :)

New things to learn

It's really interesting to learn how this pouch works....the signs of trouble....knowing when the pouch is full. I haven't quite figured it out, but I'm starting to. I'm noticing when I nearing full my gauze gets really wet and the pouch starts throbbing. This happens primarily when it's really loose. Tonight i've had to empty early twice, both times it came pouring out. testing out immodium to see if it will help. I would prefer to not deal with a case of diahrea...yuk!. I'm hoping as time goes on I will learn to read my pouch even more. The major concern is not damaging the valve, especially while the pouch is in training. So I'm a little off track, but all in all I'm doing pretty good. I start 6 hrs tomorrow...crossing my fingers for an easy transition. Don't need this hicup tonight, but I'll get thru it.

1st beer

Had a couple beers with a friend from school tonight...I wasn't sure how I would do and surprisingly I didn't have any issues....woohoo!! I'm trying new things every day and hoping for the best. I wonder if not having the stress of work has anything to do with me feeling so good. Who knows, but I'm just excited I am on the right track and I'm able to go out and do things without a problem.

blood scare

Yesterday I was freaked out....I intubated as usual and had so much air trapped that just wouldn't come out and I was hurting beyond that I extubated...went and layed down and then got back up and re-intubated...it relieved the air pressure that was tugging under my belly button, but then it only released red blood....fortunately not too much, but I was having a heart attack seeing it. I called my doctor and they stated that this could happen occassionally and as long as it doesn't continue or happen in subsequent intubations that it's ok. I must have irritated the valve...after all this is my intestine and it does bleed like anything else. I fortunately did not experience any more blood thru the night so I'm hopeful this was a one time occurance.

Rainy day & Birthday wishes

It's raining today and I was planning on going to the beach to release some flowers into the ocean...I hope it breaks up long enough to do that at some point today. Normally I would just go in the rain, but I woke up with a scratchy throat and congestion....not exactly the best time for me right now. Today is my husband's birthday as well as our 7 yr personal annivesary and he's at sea. So much has transpired in the last few days that it is hard for me to celebrate it, but he remains in my heart and that will never change no matter where we are in life. I look at my tattoo to remind me of what he means...Happy Birthday & Happy Anniversary SP...

So it's the 3rd day at 5 hours and going strong...seems like my pouch has taken a liking to my body (thank goodness). I've requested an additional 2 weeks off to make sure I'm completely ready to return to work...I have never taken a leave except for when my first son was born. This time has definitely allowed me to heal and take care of me (it also helps that my mother has been with me the entire time). I'm so used to taking care of myself...it's nice to have someone else take care of me for once. Part of me wishes I had taken the same time with my previous surgeries, however I believe that it was my destiny to end up with a Koch Pouch. I remember when the doctor presented it as an option and I knew instantly that I was going to have this surgery. Of course I still entertained other procedures, but my gut knew otherwise. I'm very grateful this surgery exists and that I was a candidate. To think this procedure was invented in the 1950's...amazing!

5 hours

today I start my 5 hr intervals....I think I have a good chance of making it...i'll keep you posted during the week. i'm going to request an additional week of being off of work today. this is the first time I have ever taken a leave and I regret not having done it with my prior surgeries. this time off has helped me out tremedously. my only issue is not sleeping...my brain won't shut off once I'm up and I'm constantly worried that I didn't reset my alarm...looks like I have a bit of OCD...LOL! I just don't want to do anything wrong and I want a healthy pouch and valve for many years to come.

butt crack devistation

I've been avoiding looking at my butt hole that the doctor so kindly sewed up as part of my surgery. I always thought it was going to be done from the inside only and I was too afraid to research what was going to really happen. I noticed it of course when I took my first shower in the hospital and it has all lumpy. I thought at first that it was normal since there were stitches, but the stitches are gone and there is still a lump there (kinda like a rod) and I'm not happy. Doc says it can be fixed to not be such a big bump, but I really don't want it cut again. Argggg...what should I do? Any suggestions???

exactly one month

I had surgery 1 month ago today...Dec 8th and I feel pretty good. I had somewhat of a rough night last night, but got thru it....they seem to get easier now that I know what to expect. Tried eggplant for dinner (no skin) and I'm not sure if it agreed with my very well. I've gotta keep trying so my diet doesn't remain so limited. One of the fun things about a new pouch. I was so used to eating everything & new what I would pay for later, but this is different and doesn't work like the other pouch so I have to be more careful. Chew chew chew...gotta love it!

side note: talked to Todd via IM this morning...they are setting sail today in the pouring rain...I'm scared & excited for him...praying God will watch over them and keep them safe and that this expedition will provide more information to help our environment...go get em tiger!

day to reflect

Today marks the day of my grandfathers 12 anniversary of his death from pancreatic cancer. I miss him so much but I also believe that he has been my guardian angel watching over me through all these surgeries. Pepe was a strong man with a powerful presence. I always wonder what it would be like for him to still be with us and to see my kids all grown up and to be ale to enjoy my sisters little ones.

My other half sets sail today on an amazing expedition of the North Atlantic Gyre. I'm so proud of him for doing this and I hope this will help take the next step in finding ways to clean and protect the earth. It's a once in a lifetime opportunity for him..I just hope he can handle the sea..he hates throwing up! So SP..safe journey hon..I'll be following you on your blog.

As for me..I'm hating not being able to eat what I want, but at least I'm putting on weight and I'm feeling pretty good..that's all I can ask for right now.

clot update

I saw the gyn surgeon today and was advised to not do anything right now for the blood clot. In a way it's good that it's on the left side and not the right. The left side has to travel through the kidney before heading to the lungs....the right side goes straight to the heart. I have to have another CT scan done in 3 mos to see if it has changed...if it hasn't we do nothing and move on...if it has I have to worry about it going to my lung and I will need to be on blood thinners or even have a device inserted to catch clots...crazy!!!!. According to the doctor I have a better chance of winning the lottery than the blood clot moving...i would say those are good odds. So we will see in 3 mos what my body has decided to do. With the grace of God it won't move.

cant sleep

Just up to intubate @ 2am and now can't sleep..too many thoughts racing thru my head. I'm scheduled to see another doctor tomorrow to make sure that the thrombosis in my left ovarian vein is ok. The CT scan I had in the hospital revealed this lovely detail. If it's not one thing, it's another. I'm praying that there is no treatment required..my body can't handle too much more. I'm happy to report that I've put on a few pounds and doing pretty good with the 4 hour schedule. Yesterday I only had 2 episodes of excruciating pain at the 3.5 mark, but I held out and fought thru it...no pain..no gain. Pouch needs to stretch so I can reach the 6 hour interval. I gotta get some sleep..over and out ;)

starting 4 hrs

today i'm starting 4 hr intervals...i hope it goes well...crossing my fingers.

RIP Sassy

Yesterday our dog Sassy was put down. She was almost 14 and in really bad shape. Just the same it's never easy saying goodbye to a pet. She has been in my life for the last 7 yrs and I didn't get to say goodbye. She was a great dog..always keeping me company when Todd was out of town, she'd stay right at my feet. I'm going to miss her.

Other than the sad news everything else seems to be going well. I start 4 hrs tomorrow. I hope I can make it, especially without an episode of gastritis. Wish me luck!

Can't believe it's 2010! Wow..where did the time go. Well I was hoping for a good day, but that didn't happen. I've been in pain all day..I think another case of gastritis..either that or the pouch growing out of control. Either way it hurts and I'm even considering getting some pain meds (which is not like me). Came out to Palm Desert to relax and enjoy some quiet family time. So far I've been in bed. Hoping tomorrow to get over this and enjoy some time with my kids. They came home today after being with their dad this last week. Resolution: to take one day at a time and slow down. My health is more impotant than anything else. Time I statred paying attention to that. May 2010 be filled with love, happiness, laughter & anything else you desire.