What are the true complications of having a j pouch?

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Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 8/29/2009 11:52 AM (GMT -6)   
Hi everyone,
 
I just got discharged from the hospital yesterday after being there all week for a flare.  My GI gave me IV steroids and had me on clear liquids and then a low residue diet.  My colitis is left sided but causes me so much grief.  I am in awful pain while in a flare (which many if not all of you can relate to), have tons of blood, go 25 times a day, etc.  I met with a surgeon and scheduled the j pouch for Oct 5, however, my GI does not feel like I have exhausted all medical options.  He wants me to try Cimzia or Humira.  I have tried Remicade and reacted to it during my second infusion.  I think my GI has convinced my surgeon to tell me to try the biologics as well because he keeps warning me of the complications of having a j pouch.  So many of the people on this site do really well with a j pouch.  So what are all of the complications anyway?  He keeps talking about pouch failure, pouchitis, potential for a bowel obstruction and not being able to do the reversal.  Has anyone experienced any of these, and if so, how bad is it compared to living with UC?  Any insight would be helpful.
 
Nutz
Nutz
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  Currently taking 6MP 50mg, Prednisone 30mg, Lialda 2 tabs/day, Colocort enemas, Canasa suppositories


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 8/29/2009 12:51 PM (GMT -6)   
just an FYI, the ostomy forum on here is a good place to ask this also. As is jpouch.org. I think all the things your doc brought up are valid complications- you see many people on jpouch.org with pouches who are still taking biologics or steroids, or antibiotics for chronic pouchitis. Granted, it's the usual, "They're only posting because they have problems...most do fine" argument, but it did make me hesitant about a jpouch. I still have my colon, doing so-so with Remicade. Good luck!!!!!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16287
   Posted 8/29/2009 1:21 PM (GMT -6)   
I agree with what Eva said, you will get more response on the ostomy board. The only turn off I have to a jpouch is that you go up to 8 times a day. They say when you pee, you usually have to empty the pouch. Not a huge concern but for someone like me who only goes once or twice a day, 8 times sounds like a lot. Of course, when I was flaring badly and going 15x, I would have loved to only be going 6 or 8 times a day. There are also people with jpouches who only go 3 or 4 times a day, maybe less.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
Horrible relapse: August 08 - December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
Canasa nightly + Asacol (9/day) + Probiotics + Iron
 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 8/29/2009 3:15 PM (GMT -6)   
I am close to surgery but still hanging on for the same reasons Eva Lou and notsosicklygirl posted... Had a surgery consult, but it is hard to get a handle on the complications issue. I know jpouch.org is a support forum for those with problems, but I loosely follow when people are about to get surgery and see how things develop, and the complication rate (infections/obstructions requiring more invasive procedures, chronic pouchitis, poor function, etc) that I observe looking at those who do post before surgery - before any complications -seems *much* higher than the 5% or so quoted by the surgeons and surgery centers.
 
One stat that blew me away was that 50% of all jpouchers do get pouchitis from time to time- even though mostly it is non-chronic and easily treated with antibiotics.  But that means having to use antibiotics - something that kills good not just bad bacteria, and which as best as I can tell was what flared me at least twice-  as much as a normie uses say aspirin.  Another stat was that most jpouchers have at least one nighttime emptying of their pouch- hardly a great way to have a good night's sleep.  I am sometimes puzzled how almost all the jpouchers nonetheless say their life is so much better than with UC... but it still seems a tough price to pay.  However I accept I'll likely need it soon.


"In order to save the village, we had to destroy it." -- Medical proverb. 
 

Post Edited (Probiotic) : 8/29/2009 3:22:56 PM (GMT-6)


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 8/29/2009 3:23 PM (GMT -6)   
GIs can be so different. From almost the very beginning my GI told me that we could try medications, but any time I had enough I should keep in mind that "the surgery is the cure." I thought that pretty drastic and tried the gamut of medications with varying success.

Currently I have been on Remicade for just over two years, also taking four Lialda every morning and using Canasa suppositories. My last colonoscopy showed my colon just about healed but the last few centimeters of my rectum still inflamed, follow up flex sig after the Canasa (can't seem to tolerate Rowasa) started showed still inflamed. I still have symptoms even with all the meds (although not as bad as when in full flare), so I decided to have the surgery over the winter. My GI referred me to a surgeon and when I went for the consultation he said I was a good candidate.

So, yeah, j-pouch surgery can have complications, and as you know, so can the meds. But I am just sick of being sick. Even if the j-pouch fails and I end up with the bag, from what I am reading online that's probably a better option than continuing to suffer with UC. I AM very hopeful that the j-pouch will work out and I will be as back to "normal" as possible.

You can always get a second opinion from another GI or consult with a surgeon. You are not under any obligation to only take your GI's opinion, especially if it's not working for you.

Meesh
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Achieved almost-remission mid October 2008 (rectum still inflamed). Having surgery in January 2010.

17 Remicade infusions (6 weeks sched: 1st: 7/21/07; most recent: 7/18/09; Current meds & supplements: Lialda, 4 tabs in the morning; 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; Roweasa; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro; Xanax


Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 8/29/2009 7:18 PM (GMT -6)   
Wow guys, thanks for the responses. Eva Lou and notsostickygirl, I am definitely going to go on the ostomy board and jpouch.org but I am sure I am only going to read about peoples problems- yikes- but it will give me a better idea. Probiotic- I knew antibiotics can be a nightmare for anyone with UC but once your colon is out, do you think it's the same issue? I thought I would be able to take antibiotics because there would be no colon to flare up- am I wrong? To Meesh, I may talk to another surgeon just to get his take on my situation as well. When did you have your surgery? When is the reversal? Thanks for the responses guys.
Nutz
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  Currently taking 6MP 50mg, Prednisone 30mg, Lialda 2 tabs/day, Colocort enemas, Canasa suppositories


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 8/29/2009 7:23 PM (GMT -6)   
     I saw a GI surgeon last year after a ten day hospitalization with UC.  My main problem is the last few centimeters of the rectum.  The surgeon I consulted is supposed to be one of the best in this area...south Jersey, Philadelphia.  He said my condition, although serious, was considered moderate and he listed all the complications surgery could bring and said he didn't think I warranted it.  Apparently, it is not a pleasant surgery and has the potential for a lot of complications.  I am also 63 yrs old and at the time had a lot of problems controlling my blood pressure.  Not a surgeon's dream patient.
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH.


Canadian Chick
Regular Member


Date Joined May 2009
Total Posts : 60
   Posted 8/31/2009 6:39 AM (GMT -6)   
Sigh... I was all ready to move forward with the surgery... and now reading this thread makes me want to put it off again. Sigh...

AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 8/31/2009 1:49 PM (GMT -6)   
Great thread. I was thinking surgery was my last option just a few weeks ago, but my GI was very hesitant and put me back on prednisone instead. He said, "once it's out, you can't put it back in," which is kind of 'duh' except that he means well, and wants to try every last option before doing something permanent that might not go well.
UC since 1996 (age 20)
Mommy of 2 sweet little girls.

Asacol (12/day)
Azathioprine (175 mg)
Prednisone (60 mg)
Rowasa nightly
Immodium daily
First Remicade 6/22/09 [discontinued 8/12/09, not helping]


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/31/2009 7:20 PM (GMT -6)   
I had jpouch surgery 8 years ago.  Is it different then having a colon?  Yes.  But it's better than a colon.  Frequency is horribly misunderstood by those who are contemplating surgery.  How many times do you pee a day?  I bet you don't know and neither do I but most times I pee I empty my pouch.  It's as fast and easy.  I'm never in the bathroom longer than to pee even though I am emtpying my pouch.
 
I just returned from a 100+ mile hike on the John Muir trail in the Sierras.  Although I haven't calculated it yet I believe the elevation gain and loss was around 35,000 feet.  I could never have done the hike with UC or on all those meds.  I am free of UC and very active and nothing keeps me from living life to the fullest.  If you want quality of life and if you want to stop wasting time wishing you were well and declining opportunities due to UC then have surgery, any surgery.
 
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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