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What are the true complications of having a j pouch?

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Ulcerative Colitis
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Posted 8/29/2009 5:52 PM (GMT 0)
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

Posted 8/29/2009 6:51 PM (GMT 0)
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!!!!!
Posted 8/29/2009 7:21 PM (GMT 0)
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.
Posted 8/29/2009 9:15 PM (GMT 0)

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.

Posted 8/29/2009 9:23 PM (GMT 0)
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
Posted 8/30/2009 1:18 AM (GMT 0)
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.
Posted 8/30/2009 1:23 AM (GMT 0)
     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.
Posted 8/31/2009 12:39 PM (GMT 0)
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...
Posted 8/31/2009 7:49 PM (GMT 0)
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.
Posted 9/1/2009 1:20 AM (GMT 0)
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

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