Tuesday, August 26, 2008

This should be a happy post, but. . .

Ok, first off a rundown from my visit with the surgeon:  
  • He will be emailing me the pictures of my colon that he took after removing it.  For some sick reason, I am very excited to see these.  Probably to give myself some kind of reminder about why I am going through this.
  • The Dr will refer me to some Gastroenterologists here in Grand Rapids that are very versed in FAP.  Remember that time bomb in my duodenum?  My goal is to get that out of there and avoid the Whipple procedure.  The Dr told us that these are some of the best GIs in the state, and if they don't think they have the skill or technology to do it they will refer me to Indiana University.  This is a huge load of stress off my shoulders.  I hadn't been able to find a doctor with enough experience or skill to remove the duodenum polyps without having open surgery.  
  • We asked about the pathology report on my colon.  We were hoping the "no news is good news" theory was in effect, but we had to double check.  While he couldn't find a copy of the report in my chart, he was pretty sure it was good news (NO CHEMO!) He said he will double check and get back to us. Yahoo!!
  • And one last tidbit of news. . . we have a tentative date for my "take down" surgery 9/23.  
Now I should be excited about this.  They will be putting my insides back inside of my body where they belong. It means no more stoma, no more bag. . .  But I'm not has happy or excited as I thought I would be.  Its too soon, I'm not ready.  Before the first surgery I worked very hard to mentally prepare myself for how my life would be afterwards with the ostomy.  I'm not prepared for life with my j-pouch.  There is a period of time while my j-pouch learns its new job.  Meanwhile, I will be having watery stools with frequent urgency.  I will be going as much as 20 times a day, and that includes waking up at night to go (that is if I can wake up in time).  Hopefully my j-pouch learns its new job quickly, then the average stools is 8-10 times a day and another 1-2 at a night.  Since the j-pouch is created out of my ileum, it is not able to absorb as much water or gastric acid as the colon did.  This means my  pouch output will burn my anal region (aka butt burn).  They said to expect it to take one year for my j-pouch to fully adapt to its new job. One year! 
I know this is better than cancer.  I know.  I just haven't fully wrapped my mind around it and accepted it yet.  I thought I had more time.  But I will, I will come to terms with this and own it.  I will be proud of my new anatomy, it saved my life.  It just may take some time.  


Anonymous said...

oh steph, you sure have a way of making my aches and paines seem so minor. You are one tough broad and here I always thought you were such a fragil, gentle soul. Thanks for keeping life in prospective. I am so proud of you. Love Mimi

Anonymous said...

Hi Steph Still keeping track of you and now you will have the Dr. with the longest name I have ever seen Gasterentologogical and I am sure I have mispelled it but our best and good luck Sounds like your mom and dad did a good job but they are the grestest.
love Aunt Helen and Uncle Jack

Maribeth said...

Wow. That is a lot to take in at one appt. Glad to hear the no chemo part. That is great news. Sorry you have to prepare yourself for another surgery, esp when you are just started to feel better after the last one.

Christina said...

Hey! 9/23 is my birthday! I can understand how you must be feeling about going through yet another surgery. It seems like yesterday when you had the first one! And then you have to learn and adapt all over again. Thinking of you!

Sugarmouth O'Riordan said...

Hi Steph--When I was research ileo takedowns, I came across this site: UC to J-Pouch Story. It seems like the people posting there had their procedures done because of ulcerative colitis, but you might be interested in their post-op experiences with the j-pouch.

Hope your recovery continues to chug along!

Paula said...

Well - I think Pups Novina is starting to work!

As usual you continue to amaze me with your strength - I'm with Mimi, I will never complain about a single minor ache or pain ever again after reading about your pains, or will I moan when I have to get up at night just to pee. I read the link about the Whipple I really hope you don't have to do that one. I read about the Whipple, I hope you don't have to have that one. September 23 is just around the corner - I thought you were going to have to wait longer so that is great news. Keep keeping us informed.
Love, Aunt Paula

mjmr89 said...

Hi Steph, mjmr89 from the jpouch forums here. Good idea to do this in a blog :) I too have a picture of my own colon if you want to compare when you get your pic ;) They're a lot bigger than you might think! When I first saw the pic, I thought... How the HELL can that thing fit inside me!

Good luck!

Anonymous said...

Hi steph. I saw your blog on the jpouch.org site. I'm in Michigan too and had my step 1 surgery 2 days before you did. Just thought that was coincidental. My name is sara btw. I have a blog too, but it's still in the works. If you're interested i'll send ya a link.

Kerri said...

Wishing you all the best, Steph. Stay strong.
-MrsKerCo (from the nest)

Mandy said...

No Chemo? That's awesome news!!! I'd been wondering when you'd find that out.
As unsure as you are about the next step in this process, we've all seen how you've embraced the hand you've been dealt and will do beautifully! ("butt-burn" and all!!)

Mandy Beach
Oh, and NOBODY is happy all the time! Give yourself a break!