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Surgery Pending

Sun, January 15, 2012 2:11 PM

Hi all,

My last colonoscopy unveiled precancerous "ridges" in two areas of my colon. I have been given 3 choices. Total removal, (I guess that's called an ileostomy), J-pouch or a subtotal colectomy. Not really enamored with any of these choices but I have to make one I guess.

The more I read online the more I hear of complications, etc. So I must admit I am a bit petrified. I will more than likely be having the work done at Johns Hopkins in Baltimore.

A few questions: 1) How long will I be immobile? 2) Please chime in on which choice you might think would be best. 3) If I do not remove the whole colon how long till get some sort of control?

I am seeing a dietician to try and "get right" before the surgery so I am somewhat used the new diet. Any other advice? Does anyone know of any support groups in Frederick County? Thanks everyone.

gabeon
Joined Jan 15, 2012

Wed, January 25, 2012 12:13 PM

Reply posted for teacher08.

thanks for the response. i am glad you get to eat some of the foods you have missed. i have already started a pretty strict diet so it won't be so *** me later. besides, losing some pounds will help the healing process so i am told.

i have been wavering back and forth between a subtotal colectomy and a complete ileostomy i guess it's called. the doctors are telling me i have a risk of getting cancer in the portion of the colon remains, not to mention rectal cancer if i choose option a. but i learned of someone who 30 years after having option a is leading a very normal life.

i can't tell whether or not the doctors are giving me advice based on my needs or theirs protecting them from any lawsuits. that's the most frustrating part. i have a consultation w/ a surgeon in early march so i guess that will help me determine my path.

gabeon
Joined Jan 15, 2012

Wed, January 25, 2012 11:48 AM

Reply posted for GabeON.

Hi-

Here are few things I have learned from my surgery last August. I had a sub-partial colectomy. This meant they left my rectum intact in case I could do the j-pouch procedure. (This decision was made after analysis of my removed colon). Since my colon was gone I was given an temporary ileostomy.

My diagnosis was changed from crohns to colitis and this meant a j-pouch was a good option for me. Some surgeons are not in favor of j-pouches for a crohns patient because of a higher failure rate.

Living with an ileostomy takes some getting used to- so speaking with those who have them is very helpful.  The wound care nurses are also very helpful too.

If you have this surgery you can expect to be in the hospital for up to a week. Pain can be managed with the pain killers they give. I was back to work within three weeks (but I work from home).  Dehydration is the biggest issue once you are released so be sure to drink lots of fluids.

I am waiting a while to do the next procedure to start the j-pouch. (It is usually a 3 part surgery- remove colon/set up ileostomy, then j-pouch made then take down of ileostomy) .

You will be on some medications to control the output of your ileostomy- so working with a dietician is great because there are foods that help or hurt your output. But the upside is being able to enjoy foods again I had long since said goodbye to.  Ice cream and coffee for me are foods I can now indulge in so that makes me happy.

Please let me know if you have any questions. I know I probably gave you a lot of information but I wish I had more before I went into surgery -it is a life changer. Best of luck to you!

teacher08
Joined Jun 8, 2010

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