Getting an ostomy - 90% Sure

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John-the-Scientist
Regular Member


Date Joined Nov 2004
Total Posts : 21
   Posted 12/18/2004 1:55 PM (GMT -6)   
Hi all.  I'm 90% sure I'm going to go ahead with the surgery, hopefully in late January.
Proctocolectomy with permanent Illeostomy.  Surgeon says my colon and rectum are trashed, no hope for a j-pouch.
 
I've had UC for 12 years (now they think it may be Crohn's).  Last biopsy showed dysplasia - but then another pathologist said no.... It would be so easy to decide to have the surgery if it were dysplaia!
 
I'm tired of prednisone, asacol, taking pills, knowing where every bathroom in the county is located (including the clean ones), knowing what side-roads I can "drop trou' and take a squirt without being seen, cutting my underwear off with a pocket knife at wal-mart due to a "shart."  Tired of making shopping / dining / travel plans based on the route between bathrooms.
 
I have felt like crap for so long I think it's normal.  My 3-year old knows to find me in the bathroom.
 
Is it possible to  do the front part laproscopic?  I know my crack will be very sore after they cut my anus and rectum out, but I'm hoping if he can do laproscopic on my abdomen the recovery will be much smoother (at least in the front).
 
At least my boss is understanding, her Grandmother had an ostomy.  They will give me off as much time I need - with pay! (what a vacation eyes ). 
 
Anyone read "Alive and Kicking" by Rolf Benirschke?  What an inspiration!
 
OK, vent mode off! Thanks for listening!
John

Bridgie-d
Regular Member


Date Joined Aug 2004
Total Posts : 87
   Posted 12/29/2004 2:43 PM (GMT -6)   
I just found this site, I have been a member of the Crohn's site for a few months and this week at work has been slow so I've been "looking around" I have had crohn's since 1998 (I'd just turned 21). After the initial flare, I was basically fine for almost 2 years. Then I got pregnant and everything went to he%#. At week 17 of the pregnancy they did a loop illeostomy just so I could make it through the pregnancy. It wasn't a cure by any means. My disease was primarily located in my colon and rectum. After the baby was born they were going to try to reconnect but I just kept getting abscesses that were starting to creep towards my uterus, blah blah. They ended up removing the whole thing when my baby was 8 weekls old and besides a chronic open wound in my perianal area (used to be a fistula tract) that has only in the last 4 months completely healed I have been completely healthy. As much as sometimes I hate the fact that I have to have a bag for the rest of my life, My quality of life is a million times better from even when I had the loop illeostomy in.
From my understanding if you have UC, then if you get the colon removed, it is basically a cure. I hate to use that word. Technically with Crohn's the disease could show up anywhere in my digestive tract but so far so good!!
Hope this helps!!

Bridget
diagnosed with Crohns 1998
Temporary bag in June of 01
Made permanent Jan of 02

TracyE
Regular Member


Date Joined Jul 2004
Total Posts : 24
   Posted 12/31/2004 9:05 PM (GMT -6)   
I cant tell you if they can do the surgery you need by scope...but I had the first step of the j-pouch surgery with temporary illeostomy 7 weeks ago with the traditional large incision.  I also had all of the tissue removed down to the sphincter muscle because my disease was so bad-that's why I had the large incision...they couldn't effectively get to the muscle and remove all of the tissue any other way.
 
I don't mind having the large incision because it reminds me how much better my life is now. 
 
Take care and good luck!
 
TracyE.

John-the-Scientist
Regular Member


Date Joined Nov 2004
Total Posts : 21
   Posted 1/4/2005 11:19 AM (GMT -6)   

thanks all... I'm scheduled for January 29, 2005 for the surgery.   I'm trying to move it to the week of Jan 17th, I don't know if I can hold out to the end of the month - I just got out of the hospital (again), stayed for New Years's Eve!  (Due to my ongoing flare-up and shut-down of colon - ate too much fiber).

Anyhow, my roomie there had an illeostomy for 2 years, must had his rectum removed in december.  It must of been divine intervention to get me in that room with him because he told me lots about it, let me see the bag, and he really feels good about it.  I'm now 100% sure and psyched up to get this done.  I got an empty bag and have been experimenting on how it will go, just not sure about the location where my stoma will be.  Hoping for below the belt line.

Also, the surgeon does not want to do it laproscopic (I was just trying to get out of a big scar).  His reasoning is it's going to be a lot easier to get everyting removed, including all the lympth nodes.  It is possible I may have high-grade dysplasia in my colon - 1 out of three pathologists think so. 

Tracy-thanks for the scar input - yes, I'm hoping and expecting a much better life.

Briget- from your post sounds like your child should be about 3 1/2 years old - hope your Christmas was great!  My daughter just turned 3, we had lots of fun.  However, she knows to find me in the bathroom a lot.  Can't wait to "get fixed" so we can do more.

 

John

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