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update on my condition

greg57's picture
greg57
Posts: 11
Joined: Jun 2011

when i joined this site i entered a post and got some good responses. unfortunately i cannot find those posts now and i wanted to update folks. monday 11/21/11 i will be having surgery AGAIN! this time an ileostomy. the general consensus is removal of the remainders of my colon is the best way to avoid further colon cancer - makes sense i guess. i hope i can find the people who were so nice to me when i joined.

Annabelle41415's picture
Annabelle41415
Posts: 6722
Joined: Feb 2009

Just make sure that you have an ostomy nurse mark you for placement because if the ileo is placed wrong it could make it very difficult. If this could save your life, you should go for it. There are more people out there with it than you know. Hoping that your surgery goes well. Please let us know how you are doing.

Kim

greg57's picture
greg57
Posts: 11
Joined: Jun 2011

Hi Annabelle. I do have 2 ostomy nurses through my surgeon - both with 30+ years experience! She did mark me the other day & im keeping it marked very well. When i had my colostomy they did not place it where marked (different hospital/surgeon) & it caused me great difficulty. I know there are people out there and this forum is a great resource, although i find some things about it difficult to navigate and i am far from a novice pc/internet user. someone at my local acs office offered to try to help me find someone locally but she has not been responding to me :-( Thanks for your response & good wishes. I'll get back on when i can but it will be a while.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

My ilestomy was temporary, but I did have it for an entire year. Kim is spot on: Make sure you have it marked by a specialist in the field before surgery, and see how that mark works with your clothing.
If your insurance will pay for it, having a home nurse come for a bit and teach you how to adapt to the pouch will be very helpful. There is a big learning curve....
Through trial and error I found the Hollister brand the best for me.
Sorry you have to go through all this.

greg57's picture
greg57
Posts: 11
Joined: Jun 2011

Hi - as i told Kim i do have good ostomy nurses and have been marked. ive had a colostomy for almost 3 years so i am rather proficient at the appliances. The brand they gave me after my colostomy was complete garbage. the ostomy nurse i have now turned me on to Convatec Surfit Natura products and these have worked very well for me. Of course the products will change but i perused there website last nite and it seems they also have what i will need.
im glad you ileostomy was temporary - i am amazed that in the 21st. century they cannot develop a better way to deal with this issue. i jokingly said to my gastro man that maybe a "clamp" of some sort that you could control. surprisingly he said that they have tried to develop something like that but it never worked - too many infections.
take care

keystone's picture
keystone
Posts: 134
Joined: Dec 2010

There is other options check out bcirostomy.com. We have a friend that had this surgery about 15 years ago and thinks there is no other way to go. I don't have personal experience. It is very intersesting and they do it in a few different cities.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

Greg, Your Original Post
I just did a search in the Colon Cancer forum on your name and this turned up.
Hope it helps.
-p

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Greg,

Well, you're probably already in surgery as I write this at a little after 11 am (Pacific time) on Monday the 21st. I pray all is/has gone well during the surgery. When you're up to it, please let us know how you are. I just said a prayer for you for good surgery and recovery.

Take care,
Lisa

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

I remember you, Greg. Praying things go well for you!

*hugs*
Gail

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