J-pouch vs. ileostomy

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New Member


Date Joined Jul 2011
Total Posts : 5
   Posted 7/8/2011 12:00 AM (GMT -6)   
I have talked to many people about J-pouch surgery and about a handful of people had some negative thoughts about it. One lady told me she decided to keep her ileostomy because she heard so many people having some type of problems after having J-pouch. My former GI doctor was against me having J-pouch surgery. He was trying to convince me to have a permanent ileostomy. He told me people with J-pouch often becomes incontinent and have to wear diapers. He also told me that people with J-pouch often suffer from pouchitis (Inflammation of the pouch) and it just isn't worth it. I still prefer to go ahead and try J-pouch... confused

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/8/2011 7:11 AM (GMT -6)   
What is your underlying medical condition? Do you have UC?

You might want to try to jpouch.org website, which has discussion boards and many more folks w/j pouches than on this list.

The official satisfaction rate for jpouch surgery is very high, over 90%.

One thing to remember is that people who are doing well after the surgery are less likely to post online or to see their gi doctors.... so it's easy to get a skewed picture.

In my case, a jpouch wasn't a very good option, because they really thought I had Crohn's going into the surgery. I also just wanted to be done, didn't mind having the bag, and I did worry about some of those complications.

I am surprised the your gi doc was discouraging you this way. Is he an IBD specialist (if you have ibd)? I believe that a jpouch is considered the standard surgery now for UC, and I would have some questions about that doc, who seems to be relying on anecdotes, not data (unless you have Crohn's or some other reason why it's not a good option for you specifically, not for people in general).

Assuming you're a good candidate, go for it if that's what you want. There are risks as you describe, but get some facts about how likely those risks really are, and if the benefits are worth it to you, that's your decision.

And if it doesn't work, you can always go back to an ileo....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 7/8/2011 9:05 AM (GMT -6)   
     My ulcerations were in my rectum and never traveled futher into the colon.  Unfortunately, they will not just remove the rectum...if that goes, the entire colon has to go because the ulcers will manifest themselves into the colon.
     My surgeon would not even consider a j-pouch for me because of 1) my age at time of operation (63)  2) extensive use of prednisone over the years and 3) other health problems (high blood pressure due to prednisone use).  I was so darn sick for twelve years with the UP, the last two years I was prednisone dependent and I ran the gamut of meds....6MP, Remicade and Humira..with no change in my condition.
     I had no problem with the idea of wearing a "bag" for the rest of my life, I just wanted a life!  Tired of sitting home with porta pots stationed in almost every room because I could not make it to the bathroom...bleeding, urgency..ugh...I had enough.
     June 28th marked one year post op.  It wasn't a walk in the park and my surgeon said it would be a long recovery...but I sure have NO regrets.  Where I took 17 - 25 pills a day....I now take only 1 and that is for blood pressure.  I took three different blood pressure meds pre-op, now only 25 mgm of toprol.  My blood glucose level is normal, liver enzymes...normal, pancreatic enzymes...normal.
     I cannot speak for people with j-pouch but the permanent ileo is no problem at all.

hide
New Member


Date Joined Jul 2011
Total Posts : 5
   Posted 7/8/2011 10:28 AM (GMT -6)   
blueglass, I was dx with ulcerative colitis 16 yrs ago. My former GI doc was specialized with IBD. He was nice but I changed my doctor after a while because I wanted a second opinion. My current GI doctor used to be my doctor when I had a severe UC flare up and got hospitalized three yrs ago but he moved so I had to change my doctor. I switched back to HIM because he came back to my hometown and he recommended me J-pouch surgery after looking at my colon through colonoscopy....he said I had a narrowing of the colon and it wasn't good at all. He wanted me to have the surgery ASAP before I get blockage or cancer. So here I am, I had my first surgery last month on the 15th and waiting for my J-pouch to heal so I can have the second surgery to reconnect everything. I really hope everything will work out for me. I have two children and one of them is Autistic so my older child has been taking care of him while I am recovering. My husband has to work all the time to pay the bills...my in-laws are handicapped so they can't help us, my family lives overseas...it's been rough.
Christine1946, I am sorry for what you have been through. I was on a lot of meds myself before the surgery. I was on Colazal (max dose), vicodin for pain, Xanax for anxiety, zofran for nausea and Humira injection. My GI doc told me to try 6MP but I couldn't take it because it was making me so nauseated. My life changed after having the severe flare up three years ago. Traveling became impossible for me because I had to always look for a bathroom. I almost soiled myself while I was in the car many times. My husband got so depressed because we used to travel a lot but it was no longer impossible. I decided to have this surgery because I didn't want to end up dying of colorectal cancer because I was at very high risk of getting it. My entire colon was a mess. None of the meds helped. Right now, recovering from the first surgery and still battling with the leakage from ileostomy bags (because my skin got so irritated and raw the bag comes off easily). Other than that, I am still alive, living with the people I love the most and trying to heal as soon as possible so I can have my life back.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 7/8/2011 11:17 AM (GMT -6)   
Best of luck and I truly hope the j-pouch is a success. From what I understand there is a high success rate so I would certainly go with those odds. My husband had surgery in Dec and it was hoped and the surgeon went in there planning on performing the j-pouch which would have been 2 steps for him as he was off the prednisone for a very long time and would not have necessitated the 3 step process.

We knew beforehand all the reasons why it might not be possible. After a very tough complicated 7 1/2 hr surgery he did end up with a permanent ileostomy. I know I was even more disappointed than he was that he wasn't able to have a shot at the j-pouch.

Having said all that, at least the surgeon tried his best and we know we had a phenomenal surgeon and it was not meant to be.

It will be 6 months and he and I have adjusted well to this new lifestyle change and it has given him his life back and me too. At our age and where we are in our lives this solution is really ok. For others depending on their personal reasons this might not be their first choice and if the opportunity is there to try for the j-pouch and you don't want the woulda, coulda, shoulda haunting you, then I would definitely give it a try and hope to be in the greater percentage who have good results.

In retrospect, if the surgeon somehow could have made a pouch for my husband he was so concerned that it would fail ultimately so the one surgery and permanent ileostomy insofar as my husband is concerned is the way this needed to go for us. We have a copy of the indepth operative procedure and it was definitely a tough one. I am just so appreciative that he even survived it!

We are really ok with the way things turned out and no sour grapes. Plus there are now a lot of potential situations removed from our worries and concerns and just need to deal with the ileostomy which in our case seems to have gone very well.

Keep us informed of your progress. The fact you are finally free of all the pain &anxiety associated with all the uncontrollable frequency, urgency and accidents is freeing in of itself. Good luck with the j-pouch step and hope the remaining time with the temp ileostomy can get easier for you.

Post Edited (Another UC wife) : 7/8/2011 10:20:51 AM (GMT-6)


Christine1946
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Date Joined Aug 2008
Total Posts : 5975
   Posted 7/8/2011 1:17 PM (GMT -6)   
     If I may, I just wanted to add one more thing....ATTITUDE....keep it positive!  I believe that is half the battle yeah !

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 7/8/2011 1:17 PM (GMT -6)   
Hello Hide,
 
I thought I'd write because you're the only other person I know or have read with UC and also that narrowing. Where I am, its called a stenosis, or stricture. It is very unusual with UC and they think it usually indicates cancer. In my case, it wasn't cancer. I had a flare-up in 2009 and then in January 2011, and the endoscope could not pass through the stricture. My GI agreed to dilate, but said very severely that it was only a temporary measure and that I should schedule the surgery in the next three weeks. He also thought my chances of getting cancer were too high, and told me I would be feeling very, very frustrated if I get cancer when I could have had the surgery earlier and not get cancer.
So here I am now, two months after surgery. I have to havethe entire j-pouch procedure over three operations, because of the amount of prednisolone in my system at the time of the first surgery. That would mean the 2nd one could be in October, but since I have to the through a six-month job probation, I will have to wait until December.
To be honest with you, I am feeling very positive about how well my stoma is working out (I am not talking about my actual feelings of having been turned insde out and having to have the bag, etc, we all know these feelings), but my stoma has been working perfectly and I've manged to keep the skin in good shape despite some leakages. I think my stoma is going to be a great jpouch. This is after feeling incredibly fatal and tragic about it all and living with terrific fear that the jpouch would make me incontinent for the rest of my life.
So Ijust want to tell you to give youself the chance to think around it with the positive thoughts, and not the fears.  I also think that not having the stoma and bag anymore will help my body image so much, and I think it's these kinds of positive thoughts and feelings that make the greatest difference in how well the jpouch will work out for you and your life.
This website has helped me a lot, because a lot of people with pouches have written about very postive and successful experiences. Try reading them (I'm sure you're reaidng a lot) and get a sense of how the jpouch can really b a positive change,
All the best,

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 7/9/2011 12:25 AM (GMT -6)   
Bluegrass hit it on the money. the stat's my surgeon gave me were 90% success rate. 5% fail because the diagnosis was actually wrong and they had Chron's and 5% fail for "unknown reasons" meaning anomalies like pouch strangulation or adhesions causing problems and the like. 30-35% of people will experience pouchtitis at some point, but only 5-10% of that 30-35% develops chronic problems. Which means your chances of chronic pouchtitis are actually super low.

I had my reversal a month ago and I'm LOVING my Jpouch. I'm ahead of schedule as far as how fast I'm progressing though. I have 8-10 semi formed BMs a day (including 1 over night) only had continence issues the first week. Most people as far as continence goes that I've heard of only deal with in the first week or 2 and if they develop pouch***. Its actually not really all that common, but yeah it happens. I wouldn't worry about that being a permanent issue as long as you have a surgeon you are confident in. (the main thing that causes it is a surgeon who is not as adept at working around you sphincter muscles)
If you do go to Jpouch.org (which i actually don't suggest until after your surgeries) you're going to see a lot of HELP, AHHH and woe is me stuff because people there are having problems and want help. Everyone else is out there living! Remember, most people don't have uncommon issues or problems. Most people simply have an adjustment period which is typically 4-6 months long and then they are fine. So don't be upset or scared if you aren't jumping up and down in just a few weeks. remember to gauge you progress in weeks, not days. Myself, I'm fine now, so i know in a few more months i maybe one of the lucky ones that only goes 3-6 times a day. But even if I'm not, i'm thrilled with my pouch so far.

BTW consider buying a bidet for your toliet to cut down on irritation. (COCO bidet, Biffy bidet are the two I hear the most about, I have a COCO) they are highly recommended by lots of jpouchers and I love mine. cuts down on the TP you use too. :) If not Calmoseptine and wet wipes will be your friends.
-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
-J-pouch surgery step 1 of 2 3/21/11
-Takedown 6/13/11

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4549
   Posted 7/9/2011 10:12 AM (GMT -6)   
Well my experience with my J pouch has been wonderful so far. I love it!!! I can only hope it stays this way. I am optimistic that it will b/c my sister has had her J pouch for 20 years and my uncle has had his for 12 years and both of them havn't had any problems. :)
DX UC - in 2005 when I was 37
Tried every drug-even Remicade-nothing worked
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC!!! Very happy with my results of this surgery!

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 7/9/2011 10:21 AM (GMT -6)   
Good news ByeByeUC!!!
DX 2/10 UP. DX 07/10 UC. Pancolitis. tried: Canasa, Asacol, Bentyl, Imodium, Imuran, Prednisone, Flagyl, Cipro, Remicade, Codeine, Tramadol, Xanax, Morphine, Vicodin, Prozac, ~ nothing worked. 1st surgery 6/8/11! 2 more to go!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/9/2011 10:34 PM (GMT -6)   
if there is any doubt at all that you might have crohns you should go with a perm ileo, but it sounds like they are pretty sure. occasionally, like with christine, age will be a factor, or if you have really serious severe other health problems that would make it to difficult for you to recover from the extra surgeries for a jpouch, but that's really rare.
I chose a perm ileo, i had a small child at home, and i didnt' want the extra surgery and the extra time away from him, and honestly i never wanted to go to the bathroom the regular way again! I'm happy with my ileo, i have my life back and it hasnt stopped from doing anything. And most importantly im better, that's really all that matters.
But if you want a jouch and you don't have any medical factors that could be causing them to say no, i say go for it, like ron said, it can be changed into a perm ileo!
good luck!
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!
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