TOTAL COLECTOMY

[kavita_b21]

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’s disease and ulcerative colitis.=======

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Personal story
Post Surgery
http://my.treeway.com/crohnie/

Living With Crohn's By Dawnie
Home page and personal story of a young woman post-surgey for Crohn's disease: top ten things she loves and hates about the disease; links to message boards, medical websites, and support groups; and a page dedicated to her mom who is no longer with us. From Dawnie, who also has a message board of her own. HOME PAGE. http://my.treeway.com/crohnie/
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Gladbaggers Young Adult Ostomy Group
http://www.gladbaggers.homestead.com/
Young adults with an ostomy (those 13 to 40 – although everyone is welcome) an find and share support at the Gladbaggers Young Adult Ostomy Group. The site contains a chat room, discussion board, “Been There, Done That” (highlights from the discussion board), useful links, and more. GROUP HOME PAGE.

Gladbaggers Young Adult Ostomy Group Message Board
http://homestead.coolboard.com/myboards.cfm?oid=2546396200624
A discussion board intended to provide support for young adults (those 13 to 40) with an ostomy – of course, anyone of any age is welcome. From the Gladbaggers Young Adult Ostomy Group. At CoolBoard.com

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Pouch Clip-Board Community Discussion Board
Pouch Clip-Board Community discussion board - by ostomates for ostomates. At DejaNews.
http://www.dejanews.com/~pouchclip/

The Pouch Clip-board
http://home.hiwaay.net/~kerry/Pouchclip/
The Pouch Clip-board (by ostomates for ostomates): discussion board, personal stories, surveys, humor (dumbest things ever said, rather/rather not - check it out), helpful hints, many links, and more. HOME PAGE.

World Ostomy Resource
http://www.powerup.com.au/~takkenb/OstomySites.htm
The World Ostomy Resource: an extensive and organized resource for those living with an ostomy. Website contains ostomy information and links to ostomy websites around the world.
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Ostomy Bulletin Board
Ostomy bulletin board. To enter, click "view ostomy board" - you may select dates to view as well.
http://www.support-group.com/cgi-bin/sg/get_links?ostomy

UOA: 20 of the Most Frequently Asked Questions Following Ostomy Surgery
The United Ostomy Association (UOA) provides answers to the 20 most frequently asked questions after having ostomy surgery. Topics include: appliances, odor, diet, pregnancy, sex, insurance, stoma information, and more.
http://www.uoa.org/chapc5.html

UOA: Equipment and Suppliers
http://www.uoa.org/chapc3.html
Information to help you find the right equipment: considerations in choosing ostomy equipment, how to handle equipment problems, custom-fitted appliances, listing of major equipment manufacturers and suppliers (medical/surgical supply houses, mail-order companies, local drug stores), and things to consider (range of brands, price, ease of use, special services, insurance, unused supplies, complaints, and accessories.) All from the the United Ostomy Association (UOA).

UOA: Insurance and Medicare Issues and Rights (for Ostomy Patients)
United Ostomy Association (UOA) information on insurance and medicare issues and rights for patients with an ostomy. Includes five key ostomy concerns in selecting insurance: does your insurance allow choice (of doctor), what equipment is covered, can you choose where to buy supplies, pre-existing condition exclusions, and how changes in medicare affect one. Also, types of insurance plans: traditional, managed care (HMO vs. PPO), medicare, medicaid, other public programs, and continuation of benefits. Medicare B information and advocacy issues are discussed as well.
http://www.uoa.org/chapc4.html

JohnsHopkins: Ulcerative Colitis Overview
Overview of Ulcerative Colitis and how it is different from Crohn's Disease. Includes opportunity to link to information on: what it is, incidence, classification, symptoms, and anatomy. Some technical information. From Johns Hopkins.

http://www.hopkins-gi.org/subspecialties/Ulcerative/introduction/overview.htm

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MUSC: IBD Message Board
The Medical University of South Carolina (MUSC) Digestive Disease Center IBD message board.
http://www.ddc.musc.edu/ibdmsg/Default.htm
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little different:
Coping With Colitis
One man shares details of his battle with ulcerative colitis (UC), and his experience using the specific carbohydrate diet (SCD). Also included: general information on UC, a glossary, and helpful links. HOME PAGE.
http://home.jam.rr.com/cborchert/uc.html

ChronniesChat
Yes, the name is purposely misspelled. The site contains useful links for those affected by IBD: health information websites, chat and discussion boards, search engines, free prescriptions, and more. Also hosts a chat at TalkCity called, what else, "ChronniesChat". From Debbie, Dez, Tom, Carol O, Jan, Kathy, and Robin.

http://home.talkcity.com/healingway/debbieri/.


University of Chicago Hospital: Gastroenterology and Nutrition: Inflammatory Bowel Disease Center
The University of Chicago Hospital Gastroenterology and Nutrition department is one of the leading gastroenterology departments in the United States. Website includes: diseases they treat (Inflammatory Bowel Disease, colorectal cancer, and more), patient information (Crohn’s disease, ulcerative colitis, endoscopic procedures, more), staff directory (with links to individual doctors, including hours, education and experience, clinical interest, languages spoken, locations, contact information, ability to schedule an appointment, more), medical information for physicians (GI fellowship, CME, public seminars, conference schedule, more), research and clinical trials (IBD is listed), and appointments (both general and pediatric).

http://gi.bsd.uchicago.edu/diseases/inflambowel/inflambowel.html

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The ALWAYS helpful Dr. Ivan's Central..remember most if not all IBD patients have some form of depression resulting from or dealing with so this is helpful and useful info...

Dr. Ivan's Depression Central
Dr. Ivan's Depression Central is an online clearinghouse for information on all types of depressive disorders and on the most effective treatments for individuals suffering from Major Depression, Manic-Depression (Bipolar Disorder), Cyclothymia, Dysthymia and other mood disorders.


http://www.psycom.net/depression.central.html

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IBD Humor Pages
The IBD Humor Pages for light-hearted stories on: IBD, ostomy, scope, and TPN. Site also contains links, personal story, health care facts, and more. From "Semi-Colon".
http://www.calweb.com/~rvincent/

[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.