another question about surgery..

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LSUBacchus81
Regular Member


Date Joined Oct 2007
Total Posts : 53
   Posted 10/28/2007 8:02 AM (GMT -7)   
Does anyone know anyone that has had thier Whole colon removed  and DOES NOT have a colostomy???  Is it really possible to remove the whole colon and not get a colostomy??  Thanks

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 10/28/2007 8:26 AM (GMT -7)   
LSU, most people these days end up with what is known as a "J-pouch." The surgeon makes a pouch out of a bit of the small intestine to substitute for the rectum, and reconnects everything. If you do a search under "J-pouch" you'll find a site that thoroughly explains the procedure and has a community like this one where you can talk to people who have had the surgery. The link isaddress is http://www.j-pouch.org/

You'll find that, while there can be problems with the pouch for some, most people do very well. Hope this helps you.
Judy
 
Left-sided UC diagnosed 2001.  Taking Colazal and Imuran, Remicade infusions and moving into remission. Finally off steroids after four years! 
 
Now in remission for almost two years. Remicade has been my wonder drug.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


lulu
New Member


Date Joined Sep 2003
Total Posts : 12
   Posted 11/3/2007 4:20 AM (GMT -7)   
When you have your whole colon removed the bag is on your ileum, so it is called an ileostomy. The j pouch didnt work for me as I had fistulas, but I do know people who it has worked very well for. When I first was told I needed to have a total colectomy and then a tempory bag I really freaked out, and if I had known that I was going to end up with a permanent ileostomy I really dont know what I would have done, but now a few years down the track it is the best thing that has happened to me in about 20years!!! L x Ps: happy to answer any questions you have re surgery.

Liz&Kenny
Regular Member


Date Joined Jul 2005
Total Posts : 431
   Posted 11/3/2007 1:53 PM (GMT -7)   
Hi LSU,

it is really possible. People are right on talking about the jpouch. I had these surgeries done last summer when I was 24 and it was the best thing I have ever done. It is a very major surgery and it is not for everyone, but I was ready and I am glad I did it. Life with a jpouch is not quite the same as with a healthy colon, but it sure beats the heck out of UC.

You can also have these surgeries done laproscopically-assisted in some cases so you have very minor scarring.

Another option is a procedure called the BCIR. We used to have someone on here who ended up getting that.

The jpouch.org site is a good place to start your research for any type of these procedures. Don't be scared reading through the boards, like here the people who post most are often those having the hardest time.
Liz

Kenny's my colon, he decided to get UC in July 2004.
RIP Kenny! JPouch Step 1: 6/19/06, Step 2: 8/25/06.


sodbuster19
Regular Member


Date Joined Sep 2007
Total Posts : 343
   Posted 11/3/2007 3:50 PM (GMT -7)   
How long is the recovery time?
Asacol 12 per day
Bad flares Guniess & hot wings


lulu
New Member


Date Joined Sep 2003
Total Posts : 12
   Posted 11/4/2007 4:59 AM (GMT -7)   
Depends a lot on how the surgery is done, and what state of health you are in at the time. Sometimes the surgery is done in 3 steps, sometimes whole lot - colectomy, j-pouch formation, temporary stoma - done in one op.
If no complications, home in 10 days, rest up for a couple of weeks. Of course it takes quiet a long time to get over even the simplist of surgeries, but bearing in mind how well you will be after the surgery, its easy to put a positive spin on your recovery. For what its worth, my only regret is that I didn't have the surgery sooner. L x

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 11/4/2007 7:13 AM (GMT -7)   

I went back to work and activity at 3 weeks post surgery but the recovery was a full year.  It just takes a while for the new system to adjust.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 11/4/2007 8:08 AM (GMT -7)   
If you're thinking about it though, you should start looking around. I've talked to 4 surgeons (not 100% trying, just talking about options) and none of them recommended the jpouch b/c THEY don't think it has a high success rate. They didn't even want to try it. I don't understand though b/c if it doesn't work, it's not like you can't go back to just an iliostomy, so i don't know why they wouldn't even try it. If I'm going to go that route, I want someone who if gung-ho and ready to do a SUCCESSFUL jpouch, not someone who doesn't think it will work.
I do know that when you're younger and not as ravished by the disease, you can heal better, so if all this medicine does fail I will try and do it sooner rather than later too.
dx 4/05 with pancolitis UC after birth of my second child... meds worked randomly
SCD and vit e enema remission for 18 months and had another drug free baby 10/06
Let flare get out of control and even steroids wouldn't work 7/07 - docs wanted surgery
lialda x4 daily and started remicade 10/26/07
 
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4813
   Posted 11/4/2007 9:22 AM (GMT -7)   
DeniseW,

Have you been to any of the top medical centers? (Mayo Clinic, Cleveland, Boston, Mount Sinai) You will find the top CR surgeons there whos j-pouch success rates are much better. I met with a surgeon last month @ Mount Sinai and told me that his J-pouch failure rates are little greater than 1%; I think he has done about 700 j-pouches. He told me that I should be able to have a 1-step Laproscopic J-pouch since I haven't used Prednisone in over 2 years. I would have to be in the hospital for 10 days and should be able to return to normal activities in 3 months.

--Keith


DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 

Post Edited (ks1905) : 11/4/2007 3:11:04 PM (GMT-7)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 11/4/2007 2:21 PM (GMT -7)   

Are you consulting with colorectal surgeons?  If you have met with 4 surgeons who don't recommend a j-pouch then I would not attempt to have surgery with any of them.  The j-pouch is considered the gold standard surgery for those wanting to get rid of their colon due to UC.  Patient satisfaction rate is 95%.  I am surprised that you haven't found a surgeon in support of it, that's about the only surgery that new CR surgeons are being taught.  It is fairly common to find a good well trained CR surgeon in any metropolitan area.

 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/4/2007 8:41 PM (GMT -7)   
i was advised against the j-pouch also, because of possible failure rate, but i had already decided against it. I actually really liked the idea of that BCIR, until i found out there are only two or three places in the US that do it, and only about 500 people have ever had it done. I wasn't wanting to be in such a small group, lol. My gi however was pushing for me to get the j-pouch. that just wasn't for me, lots of people though, suebear for example love having a j-pouch.
good luck with whatever you decide, and i will also asnwer any questions
 


ucRick
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 11/5/2007 10:14 AM (GMT -7)   
I had a total abdominal colectomy with ileo-rectal anastomosis, which is a surgery where they remove all of the colon from the abdominal cavity but leave the rectum and sometimes the very bottom of the sigmoid colon.  My surgery was done September 5 of this year with an open incision and I've been back to work for a couple of weeks.  My surgeon said that only about 5% of the patients he sees for surgery are candidates for this surgery and I was given this option only because my colitis did not involve the rectum or sigmoid colon.  High grade dysplasia was found in the ascending colon after a 28 year history of colitis and after the colon was removed a very small cancerous lesion was found in the same part of the colon.  No cancer was found in the lymph nodes so I was told that no chemo is required.  If dysplasia or cancer ever shows up in what was left behind I should still be able to have the j-pouch surgery.  I will have to be "scoped" at least once a year with biopsies and am still at risk for colon cancer.  With the j-pouch surgery I was told that the risk of colon cancer would be virtually eliminated. 
 
I think that most people who have the entire colon remove can have the surgery without a permanent ileostomy by having the j-pouch surgery but there are exceptions.
 
 
 
 

53 yr old male, UC since 1978
800mg Asacol x 3 daily
Multivitamin
Forteo(for osteoporosis)
600mg calcium + 200 iu Vit. D x 3 daily
Advicor(for cholesterol)

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