Thursday, January 28, 2010

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! :)

Monday, January 25, 2010

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 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.

Sunday, January 24, 2010

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.

Thursday, January 21, 2010

rainy thurs

it's still raining 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.

Tuesday, January 19, 2010


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 :)

Sunday, January 17, 2010

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.

Friday, January 15, 2010

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.

Thursday, January 14, 2010

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 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.

Wednesday, January 13, 2010

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'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!

Monday, January 11, 2010

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 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.

Friday, January 8, 2010

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!

Thursday, January 7, 2010

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 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.

Wednesday, January 6, 2010

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 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 gain. Pouch needs to stretch so I can reach the 6 hour interval. I gotta get some sleep..over and out ;)

Monday, January 4, 2010

starting 4 hrs

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

Sunday, January 3, 2010

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!

Friday, January 1, 2010

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.