TOTAL COLECTOMY

I am going in for total colectomy for chronic Ulcerative Colitis next weeek. What do I expect and what would life be like after an ileostomy?

[NL]

You can find alot of information and support on the Crohns Colitis web site and another which I will list here.

My daughter was diagnosed with Crohns 12 years ago, and had another flare up 2 years ago then diagnosed as Ulcerative Colitis.  She has not had the surgery but these sites and these folks have been enormously helpful.

Just today I read description of the surgery, recovery, etc.  We've known several younger folks who have had it, and their lives have been remarkable better and pain free.

There is a JPouch site and group which I'll copy and list below, too.  It's the first of its kind. There is a discussion board, a chat section as well as a free news letter.  It is upbeat, information and altogether cool!

Good luck,

NL
http://www.ccfa.org/
http://ibd.patientcommunity.com/

For surgery information from surgeons, read thru this extensively

http://www.sages.org/

http://www.ipeg.org/ (some info)

THIS page is full of links (keep hitting next whatever)
including discussions of the surgery, etc

http://ibd.patientcommunity.com/newlinks.cfm?forward=yes&index=11

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http://www.j-pouch.org/
The first site on the web dedicated to the Ileo-anal anastomosis, or "J-Pouch" operation.
Join us for support and information regarding this procedure. We have lots of plans to bring you the most information possible as you plan for the operation or are dealing with life after suffering with Ulcerative Colitis or familial polyposis.
Join the mailing list!

THIS one is the best but here are some others not as good, in my humble opinion. NL

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http://community.healingwell.com/commun_v3/scripts/topics.pl?NodeID=69618&ClientID=15808

HealingWell: Ulcerative Colitis Chat Room
Java-enabled chat room for patients with Ulcerative Colitis. Sundays from 1 to 2 p.m. (E.S.T.) Also, other chat times for related conditions. All listed at HealingWell.

HealingWell: Ulcerative Colitis Message Board
Ulcerative Colitis Message Board from HealingWell.
http://community.healingwell.com/commun_v3/scripts/topics.pl?NodeID=69618&ClientID=15808

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Crohns & Colitis Webring
http://nav.webring.org/hub?ring=ibdring;list

The Ostomy/J Pouch WebRing
http://nav.webring.org/hub?ring=ostomy;list

The Ostomy/J Pouch WebRing: a number of linked Ostomy/J Pouch websites. Also, an opportunity to list yours.

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Frustration
Online support group for teens living with or facing ostomy surgery: message board, chat room, photos, links, and more. A Yahoo! Club.
http://clubs.yahoo.com/clubs/frustration
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Living With Ostomy
Online support group for people living with or facing ostomy surgery: message board, chat room, photos, links, and more. A Yahoo! Club.
http://clubs.yahoo.com/clubs/livingwithostomy

Ileostomy and Other Ostomies (Yahoo! Club)
Online support group for people living with an ileostomy and other ostomies: message board, chat room, photos, links, and more. A Yahoo! Club.

http://clubs.yahoo.com/clubs/ileostomyandotherostomies
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http://www.ccfa.org/news/insurance.htm
Insurance Primer
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J-Pouch Support (Yahoo! Club)
http://clubs.yahoo.com/clubs/jpouchsupport
Online support group for people living with or facing J-Pouch surgery: message board, chat room, photos, links, and more. Exchange information and links with J-Pouchers from around the world. A Yahoo! Club

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Ostomates Support (Yahoo! Club)
Online support group for people living with or facing ostomy surgery: message board, chat room, photos, links, and more. A Yahoo! Club.
http://clubs.yahoo.com/clubs/ostomatessupport

Ostomy Support (Yahoo! Club)
Online support group for people living with or facing ostomy surgery: message board, chat room, photos, links, and more. A Yahoo! Club.
http://clubs.yahoo.com/clubs/ostomysupport
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http://www.med.ufl.edu/med/gastro/ibd.htm
University of Florida Inflammatory Bowel Disease Center
The University of Florida Inflammatory Bowel Disease Center (located in Gainsville, Florida) website contains: information on a local IBD support group, links to useful patient information, and a list of ongoing medical treatment clinical trials for Crohn

[me,too]

I had a complete colectomy 15 months ago. I was 32 years old and had suffered from profound constipation for 15 years. I was told that my large bowels were essentially "dead." I was also told that this was labeled a "nueromuscular disease," or a "Motility disorder," both of which did not have a cure. So after suffering so long and having my problem even worsen, if at all possible, I had to have the complete colectomy.

Honestly, immediately after the operation I was really sore. I developed a case of ileus, which is painful, but you get through it one day at a time. It can last about 5 days---it's like really bad menstrual cramps, but its in your intestines...I was told that its because your small intestines kind of temporarily shut down after the initial trauma of surgery. Anyway, that wasn't fun, but I made it through... I was in the hospital for 12 days. My intestines did not begin working again until day 11. My surgeon said this is fairly common. Some people will start having bowel movements earlier. I also completely lost my appetite during the hospital stay. For some reason, my stomach did not even growl and my brain didn't really register the need for food. I lost 14 pounds in 12 days, which was kind of nice...but it doesn't really stay off...most of it is fluid, waste and muscle. After the operation, the doctors and nurses will want you to walk and walk, which stimulates your intestines to work. I walked a tiny bit the first three days, and then more and more from day 4 to twelve. It helped with the ileus.
    But, about the colectomy, it was the best thing I could have done. I have not had any problems, other than some mild constipation due to my monthly hormonal fluctuations. The first 6 months my stool was watery, but now I rarely have loose stool. My doctor said that normally people have fairly watery stool, but because my problem is motility-based, water absorbs faster in my system.
     Once I was home, I couldn't pick up anything even remotely heavy. (At the time, I had an 11 month old and a 2 and-a half year old.) I hobbled a bit because it hurt to stand up completely. It was also uncomfortable to lay on my back because the stitches in the pelvic area. But, within 6 weeks I was fine. I was lucky because I heal pretty quickly. I was chasing my kids by 7 weeks....so hopefully you will be out and about soon, too.
   I hope this helped. Please know that my experience has been a positive one, especially compared with what I had to endure pre-surgery. My life is much better post-surgery. And if I had to do it all again, I would.