ileostomy or j pouch

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robis97
New Member


Date Joined Nov 2010
Total Posts : 11
   Posted 11/17/2010 6:44 PM (GMT -6)   
hi im a 41 year old with UC.Im going to need surgery just dont no which one to get.There seems to be a lot more problems with the j pouch just wondering if anyone can give me advive which way to go thankyou

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/17/2010 7:57 PM (GMT -6)   
some of us are pro perm ileo, and some pro jpouch, its really a very personal decision. I chose a perm ileo because i didnt want the extra surgeries, or the chance of somethign going wrong. and honestly i never wanted to use the bathroom again!
most people who get jpouches are happy with them and dont have any serious problems.
most people who have perm ileos are happy with them too.
Neither one will hinder your life at all, or keep your from doing anything.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 11/18/2010 6:01 AM (GMT -6)   
I have Crohn's so I didn't have a choice...but I have a good friend who has a jpouch and she loves hers!!! No issues but it did take a year to have her 3 step procedure (prednisone caused that!).

It's really about how YOU feel...you should make a Pro/Con list of your feelings on both. I think that really helps when you see the words on paper:)

Good luck with your decision and welcome to the forum! Asks as many questions as you need:)
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Post Edited (OHIO76) : 11/18/2010 5:05:22 AM (GMT-7)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 11/18/2010 8:14 AM (GMT -6)   
I chose a jpouch because I am an active outdoors person and didn't feel an ostomy would allow me to backpack and do long distance hikes. I am very happy with my decision. Not all surgeons leave as much rectal tissue as NASCAR Ron's surgeon described. I have less than an inch left and the mucosa was stripped reducing my risk for colon cancer to nil. If you choose the jpouch route I would suggest you consult with a top CR surgeon in your state. You can get references at www.j-pouch.org I also encourage you to make a list of pros and cons for each surgery type. There is no perfect surgery but there is a surgery that best fits your lifestyle.

Sue

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5958
   Posted 11/18/2010 9:07 AM (GMT -6)   
     I had ulcerative proctitis.  Actually, my colon was not diseased at all..just a bit of diverticulosis sad .  However, they will not just remove the rectum with UC because the ulcerations can show up further in the colon.  My surgeon didn't give me a choice. He considered me too high risk for a j-pouch.  I was 63 yrs old at the time and had extended use of prednisone (the better part of two years).  He said the j-pouch was more stressful on the system than open heart surgery.
     Since I was so sick for two years, prednisone dependent, not including all the other meds...17 - 25 pills a day plus the rectal meds, I told my surgeon I had no problem wearing a bag for the rest of my life.  I had the surgery at Pennsylvanina Hospital in Philly on June 28th.  Total colectomy with permanent ileostomy.  For some reason or other, my surgeon left the anus intact.  In his opinion there are more complications when the anus is sewn closed.  This is just his opinion.  I am having "issues"...hematoma in the anus which had to be drained smhair ..ouch.  All in all, I feel I made the right decision.  I may be losing vitamins because my hair is falling out and I feel fatigued.  My family doctor is requesting a myriad of blood work which I am having drawn on Monday.
     I only take one pill a day now..Toprol for my blood pressure :-) .  I never had a problem with my stoma.  The surgeon did a great job and I can eat ANYTHING as long as I chew well.

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 11/18/2010 6:44 PM (GMT -6)   
some people that have a hard time deciding start with the jpouch procedure and that way if you find it's not for you or you have problems, you can easily switch to the bag. You can't got back from the bag obviously :) I've even heard of some people that after the first jpouch step which is the temp ileo, they decide not to get the second step and instead get a perm ileo.

For me the choice is definitely jpouch. I'm 26 and have no desire to wear a bag through my younger years, i deal with my colostomy fine now, but i still hate it. I long to not have to wear and undershirt to hide the bag edges. (which you really wouldn't have to do so much with an ileo) I know that if anything goes wrong with the pouch later on though, that i can handle the bag just fine, not pooping is kinda nice, but i have a body image problem with the bag.

The biggest problem with jpouch is seems to be pouchtitis, biggest problem with ileos is probably skin problems. at leas that's what i've seen the most questions and concerns about on forums. Both have + and -

Best thing you can do is make a list of pros and cons and do your research on both. Just remember, most people that go to forums with complaints are the minority. People without problems don't find a need to seek help and therefore aren't around as often. And in the end, whichever choice you make will be the right one because no more diseased colon!!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-Now IBD is indeterminate tests will be done after healing if still UC J-pouch surgery, if Chron's take down of colostomy
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