14 September 2009

Cont...

I have more questions than answers. I really don't like that feeling. Got more appointments to see people and have more procedures done. They didn't do the endoscope when they did my colonoscopy, so I have to go have that done on Thursday. They want to do it because I have been having pain in an area that they can't explain. They are hoping that this will help shed some more light on what's happening. I am not so sure... but I think I am getting a little more impatient with what's happening as time goes on and I still don't have answers. I see the surgeons on Monday in their office. I hope that they can tell me what's happening and what the plan is for this whole scenario. I still don't know what they plan on taking out, what type of ostomy they are planning, how long they expect before they go in, how much downtime I will have afterward, how this will affect my life, NOTHING!

It's slightly frustrating......

Untill then, I continue on this Clear Liquid only diet, WHICH IS TORTURE!!! I actually have been feening sooo hard for actual food lately, that I have taken to locking myself in my bedroom when the family is eating ANYTHING. I mean, the other night my wife heated some frozen pizza up (something that I usually have absolutely no problem staying away from) and I was craving it so badily. I think that I just miss food! I love to cook and eat and I can't do the latter right now.

It definately adds to the frustration.....

Friday I found myself back in the ER again... this time it was a flu. I went to bed Thursday night feeling just fine. When I woke up I had a gnarly cough and a temp up over 101. Called my doctors and they all told me to get my ass in there. Sure enough I caught the flu. They took 5 sets of labs from me!!! 3 from my PICC line, and 2 others from a second IV they tapped! I swear they wanted all of my blood! They pushed a couple litres of fluid, gave me some Tamiflu and sent me on my way. I spent most of the weekend in my bed trying to rest, but one of the side effects of the pain meds that I am on is I get jittery and hyper and have a need to do SOMETHING physical. Makes for interesting nights and such... finally get out of pain and have the need to go do something... my wife can't figure me out. I am doing much better today. My temp is gone and I only have a slight cough and body aches. Hopefully I won't be feeling any of this by Wednesday.

Sick on top of sick... adds more to the frustration......

Both of my kids birthday's are in September along with mine, so yesterday we had a party for them. What was I thinking letting my 11yr old have a bunch of friends over while getting over a flu and being fed out of a tube in my arm? I must have been on some great stuff when I said yes to that! All in all it was a great day for them and they had a blast, I was just completely DECIMATED by the end of the day. I had to take a nap after they all left. Watching my kids tear into their presents was awesome though. I also enjoyed watching Elijah tear into his first cake. Tradition in our family, the first bday the kid gets their own cake to tear into. We definately have some great pictures of what he did to his! Except for completely draining me, it was a great day

Helped me to forget about the frustrations for a while....

Now I am at work, waiting around for the last of my database to compile so I can finish my work for the day. Although I really didn't want to come in today, I did get a lot done. It's easy to get a lot done though when you are left to yourself with a to do list and a computer. I think I had a highly productive day, even made some calls to set up appointments and such. Unfortunately my to do list seems longer at the end of this day than it was when I walked into the building this morning. Oh well, that's life I guess.

I wish I could say that I am alright with everything that's happening. I wish I could say that I have made my peace with the situation and that I am ready for it all to be over so I can move on. I mean I want this all to be over and I want to move on with my life, but I am still very conflicted about everything that's going to happen and how it's all going to be happening and what's going to happen to by body.

All I can do is keep my head up, keep thinking positive thoughts, and keep praying that answers to all my questions are around the corner.

Untill then.... I will keep breathing... and keep trying not to cry... but I gotta say... it gets harder as the days go on living like this

Much love to you all

10 September 2009

1 week later... More questions arise

Hey everyone, Sorry that I took off once I left the hospital. I have had a lot on my mind as you all could probably tell. I have attempted to put down what I have to say a couple times now, and I keep getting interrupted. Life... what are you going to do about it....

What has happened in the last week... Where to get started....

I have successfully spent the last week on my TPN. With this, I have been allowed only clear fluids + gummy bears. That's it. I must say its been hella hard to sit around and watch others munch down on whatever it is that's around while I am stuck drinking broth and eating gummy bears. If I was 10 years youngers, I would have thought 7up and gummy bears would have been Heavenly for a diet. Then I grew up and learned to appreciate food. I have to say the worst was last weekend when I took the family over to the grandparents house for dinner. I was happy to see everyone and to be out of the house and visiting people, but Frank does some of the most AMAZING food in his smoker, and he did a whole ham. That was a bit painfull to watch people eat that and not be able to enjoy it. Since then I have been better about my jealousy. Being on the TPN is kinda a trip to me. It takes 12 hours a day to infuse everything that I need for the day. They tell me that I could injest nothing else and be just fine. That's kinda weird to think about when you are up and mobile. It's kinda been cool to get use to though. The kids get a little weird seeing daddy hooked up with a tube in his arm half the night.

The family has been amazing through all of this. I know it can't be easy on them seeing daddy in a lot of pain or my wife knowing that I am unable to help out around here as much as I want to. They have been a constant source of energy for me! I know that all that I am dealing with right now is to get me into a place where I will be around for years to come to help them out through everything.

I am starting to fade for the night. I will get more down in the morning.

Life is an interesting mistress... I hope to be around long enough to figure her out!

03 September 2009

Thursday Morning... I get to go home today!!!

Sorry for the lack of updates yesterday after the morning... I have had a lot on my mind as you all could probably tell. 24 hours later I have had some time to come to grips with the reality of what needs to happen and here's what I know.

Surgery is happening. It's now a matter of how invasive they want to go and how much they need to remove. I am heading home today as there is nothing else that they are going to do with me still here for now, and I would be a whole lot more comfortable at my house. I have to be back in the clinic with my new Colorectal team in about 10 days to do some exploration to see just how bad things are so they can make a definitive decision on what is going to be removed and what type of ostomy I will end up with in the end. From there it will be scheduling the surgery and getting it done. We hope to have me through surgery and recovering by October, giving me a chance to eat like a normal person by Thanksgiving. It sucks that this is the reason that I will be missing the Get Your Guts In Gear Ride in the Midwest, but I know that all my fellow riders and crew members will understand why I am gone and will do their best to make it all happen knowing that I am supporting them from Seattle to the best of my abilities.

I have come to grips with all of this. I still have a lot of questions about my new lifestyle going forward, and I am sure that a lot of people will be getting a lot of emails in the coming days as I am sitting around my house thinking about this, but I am so fortunate to have such a wonderful support system around me with a lot of people that know a lot about what's happening with me and what to expect going forward.

As soon as I know more about what's going to happen in the next couple weeks, I will let you all know. Untill then I thank each and every one of you. You have all been a source of inspiration and strength to me! I really don't think that I would be able to get through this without all of you.

Much love to you all!

02 September 2009

Wednesday Morning... I have more doctors now...

It's now 4:45am and I am awake again. I even took my ambien last night just before midnight and I still didn't get any sleep last night. I guess that I just had too much on my mind last night to really be able to sleep. It really sucks that I don't sleep at night around here. I mean I think I get more sleep over the course of a day while in the hospital, just a whole lot less at night when nobody is here. I watched CaddyShack last night on a loop out of shear laziness. Then again every time that I woke up I was in a different part of the movie, just watched it way out of order is all.

So... It's now time for me to update you all on what was talked about last night. Shortly after 5pm, my GI came in to talk to me about what was found in my colon. I kept asking him to release tape so I can turn it into a Discovery Channel special and make some money off of it, but he wasn't too kean on that... LOL. The good, My disease isn't as widespread as we originally thought. It appears that my small bowel is healing and responding to the drug therapy, which is a good thing. The worst of the bad, the lowest part of my Colon may be beyond repair, including parts of my rectum. It explains a lot of the pain that I have been having lately. Knowing now what the extent of everything is... this is what my GI is recommending, pending consultation of the latest doctors to be added to the team, a couple ColoRectal Surgeons.

1) We continue with the Bowel Rest in hopes that it works to calm down the infected bowel to a point it will respond to medications and I can return to life as usual with everything intact.
2) We resection the bowel, cutting out the really bad parts in hopes that the few mild/moderate places have a chance to heal and keeping "normal" bowel operation in tact. This would also include an extended Bowel Rest with the PICC line still in tact. The fear with this is that there are sections that are the most diseased that can not be removed and that it would just allow the disease to spread quickly through the non diseased portions.
3) We do an Ileostomy and open ourselves to 2 options with this
A) Leave the Large Bowel in my body and in tack. This would allow for an extended period that we could rest it and give us a possibility of reconnecting it at a future date (year+ down the line if it responds and the disease goes into ressession. The down side is that leaving the diseased bowel in there may lead to the disease spreading farther into the bowels or even jumping into other parts of my body (i.e. the RA they fear I have developed in my back or worse).
B) We pull the entire Large Bowel while we are in there. The fear of a resection is that I have a very diseased part of my Rectum, and a resection would reconnect to that diseased section and just cause the disease to spread to the healthy sections quicker. Pulling the entire Colon would, in essence, pull the majority and worse of the disease out of my body, giving me the best shot at recovery.

It's a lot to think about right now. I have had a chance recently to talk with quiet a few people about their ostomies, and I am not really scared about the prospects of living with an Ostomy, but there is a lot to think about.

I hate being in hospitals! Beyond the fact that they never make you feel like you are getting better, I have to spend a lot of time away from Family and Friends. I know in the end this is all suppose to be for the better... but it gets hard to keep that outlook from here when you feel good but still can't just do something simple like get up and walk around. At least I can stll stay connected to the world through the internet and my phone, and I have had a lot of people swing by and visit. I am so fortunate to have such a great family!

Well I am going to go this morning... I have a lot of questions that I want to find answers to.

Thank you all for your thoughts and prayers through this most difficult time in my life. Your Strength has helped me keep my strength and positive attitude around me.

Much Love to you all!

01 September 2009

Tuesday Afternoon... Tests are done for now

Sorry that it took me all day to really feel up to typing this again. This morning I was in for a colonoscopy. That sedation really knocks me out. Once the doctor started pushing the meds, I was feeling all "happy" and don't remeber a thing after that. They tell me that it went well and the pain that I am feeling is from some biopsies that they took. I don't know much more about it than that at this point, as my doctor hasn't been around today yet. I expected it though... he squeezed the colonoscopy in before his slammed clinical day. He should be around sometime soon though to let me know what is what.

Outside that, it's been a really chill day. the PICC line is the only one that I have left in my arm... and it will be there for a couple weeks now. They plan of keeping me "fed" through it for a while.

Well my doctor just showed up to talk.... I will update you all on what he says in a bit.

Much Love to you all

Tuesday Morning... I have been up way too long already

Good morning people! This is a great day for me I guess. Well last night I wasn't able to sleep much with the nurses coming in and out every hour or so to check my PICC line and the drips. I was hoping to get a bit more sleep last night, but it is what it is. I will sleep when they sedate me for the Colonoscopy. My doctor promised me that I will be good and out when he does it! Last night after my last post my doctor stopped by to chat and let me know what the plan for today is. Hopefully we know more about just how bad my disease is in my bowels and what we need to do to control it going forward.

I hope that, no matter what, I can feel better soon!

For the longest time I fought the idea of surgery. I saw it as taking away something that I needed to live. I have come to see, through the help of my friends and a lot of research, that this is not true. I know now that I can have a productive life without my colon. I might even be able to live a better life than I have had in the past 5 years+.

I will beat this! You all are helping me do it and I LOVE YOU ALL for it!

I have to go now... time to go become my own Discovery Channel Special!

Will update you when I know more!