Meet & talk to fellow OstoMates Support | Friendship | Relationships 23,6K + members

Ileostomy to a J-pouch and reversal

Welcome to MeetAnOstoMate.org
Thu Nov 04, 2010 8:22 pm
Has anyone had an ileo then gotten a j-pouch made and been reversed? I have a preop visit with the surgeon in a few weeks and am pretty nervous about the coming surgery. I want to know what I am in for. I'm not thrilled about having an ileo but in some ways its not so bad
Fri Nov 05, 2010 2:53 am
hi there!   just thought i would let you know that i had my iliestomy SURGERY IN JUNE! I HAD MY POST OP APPOINTMENT IN AUGUST AND NOW ON MONDAY I HAVE MY PRE OP ONE! I HAVE PERSOANLLY DECIDED TO KEEEP MY ILIESTOMG IN STEAD OG HAVING THE J POUCH CREATED FOR 1 IM A YOUNG FEMALE N THERE ARE SO MANY HORROR STORIES WHEN IT COMES TO J POUCHES! I HAVE THIS BAG ATTACHED TO ME FOR LIFE BUT THT TINY THING HAS GIVEN ME A LIFE AGAIN! IM SHIT SCARED ABOUT THIS NEXT SURGERY BUT I KNOW IT WONT BE AS BAD AS MY FIRST ONE! HOPE YOU GET THE ANSWERS UR LOOKING FOR! ALSO SORRY ABOUTS CAPITALS ITS MY STUPID PHONE!  BROOKE
Fri Nov 05, 2010 10:22 am
Hi Brooke.,

I for one think you have made the right decison ,  and I wish you much happiness with your newfound health..........Enjoy it and go run with it............My journey was very similar and I too am completely happy with my permanent osotmy decision.........Michael
Fri Nov 05, 2010 12:03 pm
I had my first ileostomy done 3 years ago due to uc i had a total colectomy, Then about 16 months ago i had my j-pouch fitted and still had my ileostomy untill my pouch healed and then in june this year i got my reversal, and havent looked back since. Im off all medication, i go to the toilet about 3 times a day and there is no rush at all maybe 1-2 at nite. I would consider myself one of the lucky ones as i feel my condition is getting better everyday. Im back workin now and i can go swimmin again also which i love.

There are people out there that dont have the option to get there stoma reversed if you have the option go for it. My doctor told me 1 third of people that get the reversal will need a bag within ten years 1 third of them will cope with having a jpouch and 1 third of people will be very happy wit there pouch.

Hope this shines a bit of light on your situation if you'd like to no anymore jus ask, and remember you'll always hear about more unsuccessful jpouch procedures because the ones that are successful like myself dont be online as much Smile

Ger
Sat Nov 06, 2010 7:13 am
Hi ... just thought I would through in a commet to wookie... I recently made the decision to NOT go ahead with a reversal aswell.... generally because I am doing just fine with the illio and do not want to give away my existing comfort and control of day to day activities to the j pouch. That said my surgeon strongly advised me to have the remaining rectal material removed as while I have no apparent genetic link to cancer, should rectal cancer occur, it can be expected to spread to adjacent tissues long before symtoms occure.

Just a few points about reconnects to those considering it .... be certain you have a surgeon that is highly skilled in this specialty ( not a general surgeon ) and make sure you know why you want to reconnect.... if your doubtfull take a year or so to evaluate living with the ostomy... consider the lifestyle you expect to live....and don,t be presured by the doctors to move swiftly if you have reservations... unless there is a disease realted reason for doing so. Best of luck to all.
Sat Nov 06, 2010 11:49 am
https://www.youtube.com/watch?v=NL5v-N9X_fc

Have you seen the videos done by this young fellow? Very imformative. He covers many issues and is very straightforward.

All the best with your decision.

Beatrice
Mon Nov 08, 2010 1:08 am
EMREZ

The success of the J pouch is very dependent of why you had to have your colon removed.

What ever you decide, needs to be based on accurate information about your particular situation.

I don't know if your doctor is a general internal surgeon or what, you don't mention it.

You need the advice from a doctor that has done many of the J pouch procedures.

You need to educate yourself to ask the right questions.

for example:

Is the J pouch to be connected to your anus.  Or do you have a rectal cuff left to connect to.

What problem did you have U/C,  Crohns,  cancer, colonic inertia.  You need to know exactly.

Do your own research.

Frankly, the fellow that made the U-tube video, I to some extent doubt some of what he says.  I am a J poucher, going on two years.

One more point, true in most cases  laproscopic surgery leaves much less scare.  However the success rate is better for open surgery and there is less chance for a mistake.

Good luck

Rick.....
Mon Nov 08, 2010 6:20 am
I agree with Rick's comment.  A J pouch can be really good and it is certainly worth trying if you have the option.

I had a J pouch for 13 years, following an emergency colectomy for UC.  The J pouch failed and unfortunately the surgeon was unable to redo it and I ended up with a permanent ileostomy.  I had that for a year and was then given a Koch pouch, which is a continent ileostomy.  I am really happy with this and completely well.  I do not have to wear a bag and empty the pouch 3 times a day with a catheter.  The K pouch is not an option if you have Crohn's disease, though.

I wish you well and hope that with the help of others, who have been in a similar situation , you can make an informed decision.

Best wishes

Julie
Mon Nov 08, 2010 10:42 am
Hi there
I just had my reversal done in May of this year.  I too had an iliostomy than the j-pouch and had so many complications that I choose to have the permanent iliostomy done.   Although there are few ticks it has been the best thing for me.  I have put on healthy weight; I am able to go out and enjoy an evening without spending most of my time in the ladies room... Other than the odd leakage I have no problems at all  Most people don't even realize that I have a colostomy bag on my abdomen...I hope this helps..
Sincerely Dee
MJ
Tue Nov 09, 2010 9:15 am
Hi...
After 22 years of Ulcerative Colitis I had my colon removed, j-pouch created, and temp ileo back in Aug '06.  Had my take down in Dec '06.  Never got better.  It was like I still had colitis.  Shortly after takedown I was rediagnosed with Crohn's and severe chronic pouchitis.  After 2 1/2 years of constant problems and lack of pain control I had my j-pouch disconnected and went to a end ileo.  What a differance!  I got my life back.  I take one Humira shot per week.  No pills, I can eat whatever I want, and no more pain!  The trade off of the end ileo was a small price to pay for getting my life back.  Best of luck to you... Smile
Mon Jan 02, 2012 9:22 pm
hi MJ, I had my entire colon removed back in june 2011 I got over the surgery in 5 days great surgeon only one scar and that was the stoma. Ended going back in November with much pain to discover i had developed 2 hernias one was a peristomal hernia. The surgeon decided to stitch the hernias rather than insert a mesh, because stiching will leave me with  the opportunity to have a reversal early in 2012. Your story seems similar to mine and i have yet to make my decision. i am wondering what is an end ileo ?
Wed Mar 07, 2012 6:08 pm
Hi there
Your situation is  very much the same as mine... I had the take down in May 2010 and I too have a much better quality of life.. I can eat anything and feel great.  After my reversal to a j-pouch I was sooo sick  I had an abdominal  infection for 3 years and anything I ate just came out the other way.. finally I did make a huge decision to take down the j-pouch and as I mentioned earlier best thing ever....  But  snowflake every case is different I've read stories here on this wonderful site about success stories the only person who knows is you and your surgeon.  All the best
Sincerely Dee
Tue Sep 23, 2014 5:30 pm

My doctor is considering giving me Humera as I am unable to take NSAIDs anymroe for my (I think) j pouch caused arthritis...my sister, who knows a lot about medicine , is just railing at me for consider a drug that she THINKS is very dangerous...I read a lot about ppl who have j pouches and ostomies using Humera.....I just wondered what your experience is with it. The arthritis is unbearable! Thanks ;)

Tue Nov 22, 2016 12:58 pm

Hii there

I am new to this org. I am here for my mother . She is 63 yr old . She is undergoing her chemo for endometrium ca. She underwent with total colectomy end ileostomy. Is there any chances of her reversal to j pouch ?

* Please, do not post contact information, personal information or advertising.
All times are GMT - 5 Hours
Currently online: 13    
2 members & 11 visitors