So if I get a J-pouch and it doesn't work out

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qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 6/28/2009 8:24 PM (GMT -6)   
I can always just switch back to the bag right? I assume the chances of something going very wrong with having a bag are pretty low? I need some piece of mind knowing I can revert back to something stable if the J-pouch doesn't work out. I'm thinking about calling tomorrow and setting up surgery. So scary :(

sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2012
   Posted 6/28/2009 8:58 PM (GMT -6)   
I don't know, but I don't see why not. You should call and ask your doc. Good luck! =) Try not to be too scared. Get some hugs. =)
19yr old female
Diagnosed with UC (pancolitis) in 2005 at age 15
2.5 tabs of Azathioprine 1xday / 2000mg Fish Oil 1xday /
500mg Turmeric 3xday / 1c Dandelion root tea 1xday
Arthritis in both knees (thanks UC)
Also: asthma, acid reflux, and Reynaud's Syndrome


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/28/2009 9:07 PM (GMT -6)   
Yes, if you choose a jpouch and it doesn't work out you can revert back to an ostomy.  However, if you choose a permanent ostomy you can never try a jpouch.
 
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


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 6/28/2009 9:44 PM (GMT -6)   
Yeah, my dad has that option. He had the J-pouch surgery and the UC came back. So, the next option is the bag. But for my dad he's managing it way better now than before his surgery just under 20 years ago. He's on Asacol, and Canasa, and he's doing pretty well.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira since of May 2007 (Currently in remission since May 2007)
Put on Imuran from May 2007 to Jan, 15 2009
Put on Canasa June 25, 2009

Can't take Asacol, Allergic to Remicade


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 6/28/2009 9:55 PM (GMT -6)   
how is it even possible for the UC to come back? Sounds more like maybe he had crohns?

They take out the whole colon...
Kara, 22F Married.
Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!
 
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 6/28/2009 10:07 PM (GMT -6)   
Ok, so every doctor my dad has gone to has looked at him and has said his uc came back. I found a link to a site that says the same thing that some people who have J-pouch surgery their UC does come back. I think it's because they still have the rectum. The rectum is apart of the Lg. Intestine so that should explain it a bit better. Here is the link:

http://j-pouch.org/eve/forums/a/tpc/f/5751071921/m/2221081462
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira since of May 2007 (Currently in remission since May 2007)
Put on Imuran from May 2007 to Jan, 15 2009
Put on Canasa June 25, 2009

Can't take Asacol, Allergic to Remicade


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/29/2009 8:26 AM (GMT -6)   
If her dad had the surgery 20 years ago it's possible that they left too much cuff and what he has is cuffitis which is basically UC in the remaining rectal cuff (which is why leaving the rectum is never recommended). Advances in the procedure have reduced this outcome. It's extremely important to consult with a surgeon who has a lot of jpouch experience to eliminate the possibilty of complications.

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


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 6/29/2009 8:39 AM (GMT -6)   
Suebear, you maybe right. Thanks! Because that is exactly where my dad has the UC. You helped me out with that info.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira since of May 2007 (Currently in remission since May 2007)
Put on Imuran from May 2007 to Jan, 15 2009
Put on Canasa June 25, 2009

Can't take Asacol, Allergic to Remicade


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 6/29/2009 8:41 AM (GMT -6)   
wow that makes me totally not want to get surgery now
Kara, 22F Married.
Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!
 
 


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 6/29/2009 6:39 PM (GMT -6)   
Except for my rectum my UC is in remission, but I am likely going to have the surgery within the next 18 mos (this winter or next, depending on finances. When I had my flex sig and saw the inflammation still in my rectum I asked my GI if that meant I wasn't a good candidate for the j-pouch surgery. He said I am a perfect candidate for that because they do "mucosal stripping." I was unable to ask any follow up questions at the time because of a sudden emergency in the office, so I need to explore that, but for now I gather it removes the problem?

Anyway, I am on a lot of very powerful, very expensive medications that aren't getting me all the relief I want. I am WAY better than I have been in the past, but still tire easily and feel "unwell" much of the time. My GI assures me that when my colon is out and my body is no longer chronically dealing with the inflammation that I will feel 100%.

If the pouch doesn't work out, yeah, it's a permanent bag, not something I would look forward to, but after three years of UC meds, I think I am ready even for that.

Good luck whatever you decide.
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

16 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 6/06/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/29/2009 7:42 PM (GMT -6)   

Meesh,

You're right; stripping the mucosal layer eliminates the possibility of cuffitis.  I had severe rectal disease with very little colon involvement.  My cuff was stripped and I have never had an incident of cuffitis in the 8 years with my pouch.  I am sure that either Sweetie's father's surgeon either did not know how to strip the cuff or it wasn't perfected back when he had surgery 20 years ago. 

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


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 6/29/2009 7:44 PM (GMT -6)   
that makes me feel a little better about surgery
Kara, 22F Married.
Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!
 
 


qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 6/29/2009 8:00 PM (GMT -6)   
I think I'm going to call and setup surgery tomorrow. I started taking prednisone again for the last 4-5 days. There's a lot of liquod and mucous coming out and what seems like compacted chunks coming out in spurts now, kind of unpleasant on the toilet. I'm just tired of feeling like crap from the meds and don't feel like dealing with cancer 5-10 years down the road even if somehow I do go into remission soon, which likely will not happen. It took me a few weeks of preparing myself but I think I'm ready. I think I can live with a bag if worst came to worst, but even a decade of good J-pouch function is all I ask for, just so I can enjoy the second half of my 20's. I will make a progress report after my surgery if this board doesn't mind, since it's mostly for alternative medicine I think, if it does I will definately post it on jpouch.org or somethign liek that.

Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 6/29/2009 8:13 PM (GMT -6)   
Keep us posted here if you want. Lots of us pondering surgery would be very interested in following your progress qazwsx12
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

16 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 6/06/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 6/29/2009 9:06 PM (GMT -6)   
Suebear- doesn't stripping the rectal cuff statistically reduce continence with a j-pouch? I know that you have had great success but I thought that it was desirable, all things equal, to preserve the rectal cuff? I too am still in the process of setting up a surgery consult-- I still am hoping to avoid or delay surgery, but want to be as fully prepapred as I can be to do it without any delay should I make that decision.
Pancolitis >20 years, allergic to all 5ASAs
(To pharma: enough already with the umpteen variants of Asacol!)
Tried everything under the sun (natural and alternative), low carb SCD
Some partial success with TSO but  too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering increasing pred again,
homemade fecal infusions, maybe surgery this year soon
 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/29/2009 9:10 PM (GMT -6)   

This is where surgeon experience is PARAMOUNT.  Yes, if the lining is not stripped correctly it can lead to continence issues.  Some UC patients don't need to have their cuff stripped either.  The surgeon determines that based on patient history and a visual exam.  If anyone is contemplating surgery get a recommendation for the best surgeon in your state.  This is not a surgery to have with a CR surgeon in a small town!  Recommendations can also be found at www.j-pouch.org

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


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 6/30/2009 8:17 AM (GMT -6)   
Thanks, Sue-- this wll be one of my main questions during an intial consult.
Pancolitis >20 years, allergic to all 5ASAs
(To pharma: enough already with the umpteen variants of Asacol!)
Tried everything under the sun (natural and alternative), low carb SCD
Some partial success with TSO but  too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering increasing pred again,
homemade fecal infusions, maybe surgery this year soon
 
 


diaper man
Regular Member


Date Joined May 2009
Total Posts : 122
   Posted 6/30/2009 8:43 AM (GMT -6)   
Hey Suebear. Just a quick question, I read that even with a jpouch that you would still go about 6 or 8 times a day. You have had yours for 8 years now, how many times do you go and do you still have urgency? The urgency part really concernes me.
Diagnosed Crohns/Colitis Jan 2007 changed to UC June 09.  Allergic to 5sa. Currently taking Humira Hydrocortisone suppositories, Canasa suppositories  started Remicade 06/23/09,  Budesonide. Colitis in last part of Colon.  Currently bleeding every bowel movement. 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/30/2009 9:09 AM (GMT -6)   
There is no urgency with a jpouch. Yes, frequency is higher but it's as quick and easy to empty a pouch as it is to urinate. How many times per day do you pee? I bet you don't know and neither do I. I imagine my frequency is 6-8 times per day but I really have no idea. It doesn't interfere with my routine and unlike with UC, I never have to know where a bathroom is!!!

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


diaper man
Regular Member


Date Joined May 2009
Total Posts : 122
   Posted 6/30/2009 9:25 AM (GMT -6)   
Thanks Suebear. Your answer helps. Sorry if I got to personal. If remicade does not work, I feel like I am getting close to making a decision on surgery. I really don't know how much I pee. LOL.
Diagnosed Crohns/Colitis Jan 2007 changed to UC June 09.  Allergic to 5sa. Currently taking Humira Hydrocortisone suppositories, Canasa suppositories  started Remicade 06/23/09,  Budesonide. Colitis in last part of Colon.  Currently bleeding every bowel movement. 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/30/2009 9:32 AM (GMT -6)   
No questions are too personal for me! Good luck with Remicade, I hope it puts you in remission.

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

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