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Crohn's Disease Forum » Surgery » Stoma Subforum » Stoma or J-pouch


08-02-2010, 03:09 PM   #1
Jacob
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Join Date: Jul 2010
Stoma or J-pouch

I have a cosultation with a surgeon soon and we will discuss what proceedure I will opt for when they remove my colon. Either creating a permanent "stoma" and attach the illium accordingly ("illiostomy" I believe). Or create an internal pouch - the "J-Pouch" proceedure. Is there anyone that can give me some feedback? What is quality of life like after the respective proceedures? I would like to know what I am getting myself into whatever proceedure I undergo. Thank-you all.
08-19-2010, 07:34 AM   #2
Binkly
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Join Date: Aug 2010
I had a jpouch created in '93 due to UC. For the most part, I've been pleased with the results. I have also been diagnosed with Crohn's within the last few years, and have other issues going on which currently cloud the issue, so I would suggest you go to jpouch.org for lots and lots of great information regarding both jpouches and ileostomies.
08-19-2010, 08:30 AM   #3
CDDad
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I just went back and read your first post and since you don't have Crohn's, I would say go for the J pouch. Bikkly gave great advice to read all you can on jpouch.org.

Now, I have an Ileostomy, and I don't have any issues with it. But, I am long married with no plans of dating . I think if I was in that phase of my life, dating would be the toughest issue for me.

With my Ileostomy, I do everything I did before, so there are no limitations at all. Well, maybe one, I don't take my shirt off at the pool or beach. But I wear a rash guard, it looks appropriate and prevents sunburn!

People with Crohn's have a high chance of recurance in the Jpouch, but since you don't have that, why not look at that first.
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Crohns since 1989
3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.
08-19-2010, 11:07 PM   #4
Heb
 
Join Date: Aug 2010
Location: Queensland, Australia
I have had a collectomy and had a temporary ileostomy which was easy to handle, I now have had that reversed but was told the J pouch was a thing of the past, this pouch is different. Still have infection issues though.
08-20-2010, 12:43 PM   #5
Binkly
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Join Date: Aug 2010
What kind of pouch are you referring to, outside of the jpouch? Kpouch? Just curious!
08-22-2010, 02:33 AM   #6
Heb
 
Join Date: Aug 2010
Location: Queensland, Australia
Binkly
It is an internal pouch but as I understand it, the J pouch is made up from a section of the colon and this is not. Not sure about it all but the gastroenterologist told me about the J pouch and said I would have that and the surgeon said to me, no that is old hat we don't so them any more we do another sort of pouch. Sounds much like the same thing to me only using different methods.
Sorry not to be more helpful.
Heb
08-22-2010, 08:34 AM   #7
Crohn's 35
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Join Date: Oct 2009
Binkly
It is an internal pouch but as I understand it, the J pouch is made up from a section of the colon and this is not. Not sure about it all but the gastroenterologist told me about the J pouch and said I would have that and the surgeon said to me, no that is old hat we don't so them any more we do another sort of pouch. Sounds much like the same thing to me only using different methods.
Sorry not to be more helpful.
Heb
Hey Heb, glad to see you are joining in our community, it would be wonderful if you could post your journey on a Your Story thread and let us welcome you here! Hope you join us! Cheers.
08-23-2010, 04:41 AM   #8
Heb
 
Join Date: Aug 2010
Location: Queensland, Australia
Must do that, thanks for the welcome, over all these years I have never thought of joining a group, glad I have. I see you are also on VSL#3.
Heb
08-25-2010, 06:14 PM   #9
acg101
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Join Date: Jan 2010
Welcome Heb - Six weeks ago I had a total proctocolectomy with Ileostomy, meaning a permanent stoma. So far I am the happiest with my decision. I can do things I could not dream of before the surgery, Dealing with a bag is no big deal and one gets used to it quickly.
Good luck with your decision
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-Best wishes - Dan

1. Diagnosed with Crohn's UC 1995
2. Flagyl/Cipro Imuran in 80%remission 1997 2005
3. Used 5mp, asacol, 6mp, remicade, imuran, Cimzia, entocourt, Flagyl/Cipro and enemas/suppositories until 2010 with periodic relief.
4. July 9th 2010 total ProctoCollectomy surgery! Free at Last!
08-26-2010, 08:13 AM   #10
CDDad
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Location: New Jersey
Dealing with a bag is no big deal and one gets used to it quickly.
Good luck with your decision

Ha - Dan, you were able to deal with having a foley cath in for a month and still have good spirts. You could probably adjust to anything!

I'm giving you an award for longest foley duration without going insane!


(if you never had the pleasure of having a foley, this will give you an idea
http://www.revolutionhealth.com/arti...atheter/zm2412)

Last edited by CDDad; 08-26-2010 at 08:16 AM.
08-26-2010, 08:26 AM   #11
acg101
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Join Date: Jan 2010
I must admit that it was very hard having the Foley in for a month. At times, probably harder than having the surgery. I could not find a position to sleep without pulling on the Foley and walking was a nightmare. But emotionally, I knew that if I could not tolerate the Foley they will have to operate with higher than 40% chance to impact my nerve system down there so I dealt with it for 32 days 10 hours and 55 minutes (not that I was counting hahaha). and at the end my body healed spontaneously and all I have to deal now is a urinary track infection which is 100% predictable after having the Foley in for such a long time.

Thank you for the award !!
08-26-2010, 06:54 PM   #12
ameslouise
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Location: Pottstown, Pennsylvania
Hi Jacob - Have you and your surgeon made a decision yet?

I have had a j pouch for 7 years after my colon ruptured from UC. The j pouch is made from the small intestine, not the colon. There is a good explanation of the procedure at the j-pouch.org site.

Like Binkly, I have been re-dx with Crohn's and am having issues with my pouch. But for six years, it was GREAT! I did have a temp ileostomy for a year and that was also GREAT! Such relief either way!

Good luck -Amy
08-31-2010, 12:45 PM   #13
Sue-2009
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Join Date: Nov 2009
Location: Michigan
Jacob...Ditto with Ames, I had my Jpouch for about 5 years, pretty much Great..Now I have crohns. I think I would try it...Five years pretty much good...Mmm, really a personal decision. There are tons here with the stoma doing great.,..I admire them all...So, I'll be interested to see what you choose. Good and bad with all decisions...Its what you think you can live with.....Sue
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08-31-2010, 01:07 PM   #14
Liam
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Join Date: Aug 2010
Location: Leicester, United Kingdom
Hi Jacob, I'm not sure which is best. But before my operation I spoke with the stoma nurse on a number of occasions and was given an illeostomy kit to prepare for what I might end up with after surgery.

Mind was only going to be temporary. But everyone was quite sure I would need one for 6 months or so.

I thought it was likely that I would come out of surgery with a bag, and I was told by my surgeon that he would do his best not to give me a bag, but I may end up with one depending on what it looked like inside.

I woke up after my op without a bag.

So depending on what it's like inside...you may not need one.

I hope that offers a little comfort and reasurrance.

Liam
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