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!

3 comments:

  1. Daniel - If you want one more to talk to - I work with a guy who had his surgery when he was still in his teens - both he & his younger brother have Crohns. I know it's not me and it's not my body - but I would have to think that the prospect of a vastly improved QOL would add to the plus side of the equation. Let me know if you want to talk to Bobby & I'll hook you up.
    Jeanie

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  2. This is a lot more complicated than deciding whether to lose a boob or not...but it sounds like you have a good team and some progressive options. I just want you to feel better...for the rest of your life. Love, MT.

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