Hi. I assume you’re miserable and at wits end with your j-pouch. That’s where I was after 7 years with mine. I had the excision 3 months ago at Cleveland Clinic with my original surgeon. Today, I am very glad to be on this side of the procedure. I’ve got a great stoma—no skin issues at all—and I’m able to eat things I’ve missed for 7 years. I was in the hospital 8 days but my wife and I hung around Cleveland for a few more days just in case (we live in VA). All in all, a good decision on my part to finally get relief from all the discomfort and anxiety I had with my j-pouch. The only issue I had post-surgery was some annoying drainage that leaked through the anal sutures and that went on for a few weeks. As for suggestions, yes, ask how many excisions the surgeon has performed and definitely work with the stoma nurse on stoma placement. At Cleveland, the stoma team took a lot of time with me, looking for skin folds, etc. My new permanent stoma is a little higher up than previously and works great. Keep doing your research and asking questions! This procedure is another tough one and you need a surgeon and team that give you confidence going in.

It is unfortunate that the J pouch procedure does not work out as intended for some people. I had a J pouch for 30 years and experienced ongoing problems of stooling frequency, leakage and anal irritation.  In spite of this, I was able to lead a pretty normal life.  Recurrent high grade dysplasia and anal cancer made pouch removal necessary.  I strongly did not want to get a conventional ileostomy and was able to get a continent ileostomy that does not require having an external bag.  I have had a BCIR (similar to a K pouch) with excellent results for 11 years.  This procedure is not suitable for some people and there can be complications that may require pouch repair or removal.

Over the years, dense adhesions had developed around my J pouch, significantly complicating its removal.  Otherwise, the surgery to create my BCIR went well and I have had it for 11 years with no complications.  My life is completely normal as regards activities and I can eat most foods.  Since these are major surgeries and may be permanent, I suggest researching your options and talking with surgeons who do them.  I wrote an article entitled, "Researching My Options" that can be viewed on the Quality Life Association web site (www.qla-ostomy.org) under the Ostomy Options and Education tab.  I wish you the best with whatever you decide to do.

@Jfill21 posted:

Hi. I assume you’re miserable and at wits end with your j-pouch. That’s where I was after 7 years with mine. I had the excision 3 months ago at Cleveland Clinic with my original surgeon. Today, I am very glad to be on this side of the procedure. I’ve got a great stoma—no skin issues at all—and I’m able to eat things I’ve missed for 7 years. I was in the hospital 8 days but my wife and I hung around Cleveland for a few more days just in case (we live in VA). All in all, a good decision on my part to finally get relief from all the discomfort and anxiety I had with my j-pouch. The only issue I had post-surgery was some annoying drainage that leaked through the anal sutures and that went on for a few weeks. As for suggestions, yes, ask how many excisions the surgeon has performed and definitely work with the stoma nurse on stoma placement. At Cleveland, the stoma team took a lot of time with me, looking for skin folds, etc. My new permanent stoma is a little higher up than previously and works great. Keep doing your research and asking questions! This procedure is another tough one and you need a surgeon and team that give you confidence going in.

Thanks, Jfill. Yes, I'm done with the pouch. Have a chronic leak/infection which the best in the world (per this site!) have tried to resolve with multiple procedures. I've been told redo or excision are my options and as I said in my rambling, ranting post in the general forum, I can't imagine spending another 1-2 years of my life (if all went perfectly, which it never does) on a pouch redo.

@BillV thank you for the input and resources. I won't pursue a BCIR for the same reasons. Still an internal pouch with attendant complications. I want the low tech option with the fewest bells and whistles to break at 50K miles.  I'm looking for the Honda Civic of pouch/bag options. While certainly not ideal, I don't have an aversion to an external appliance, just what it takes to get there.

@Jfill21 could I ask how long you were laid up at home following discharge? How long before you could return to work full-time (or to comparable activities)? I develop an ileus without fail with every surgery, even endoscopic procedures on the pouch, so my surgeon says I may be 10 days inpatient. Just wondering about the recovery at home after. Would love to be back at work within a month if possible. Assuming everything goes to plan. I'll need infected tissue/bone removed during the procedure so may involve a bit more recovery but hopefully no complications. I would like to stay at my home institution as I like and trust my surgeon and would love to not travel out of state (which would be required to have it done anywhere else) but starting to wonder if I need to shop around. It is an academic medical center but by no means a high volume IPAA center like CC or the institutions in NYC. I'm not looking for a second opinion on if I need excision, nor my treatment options, so would be more shopping around for the best surgeon, which can be difficult to assess in one meeting. Thanks for your input.

My recovery at home wasn’t bad at all—except for the rear drainage. But I was happy eating again and gained 5 pounds in no time. I’m recently retired, so things weye way easier for me than when I was working during my three-step surgeries. At 6-8 weeks, I could have worked from home or gone back to my desk job. Also, this time around, for the excision, I was mentally ready and I was healthy. No ileus for me. I woke up from surgery with the NG tube already in place and it was working hard! Made it so much easier not feeling nauseated. Also, my surgery was a lot more complex due to prostate cancer metastasizing on the backside of my pouch. Another surgeon was called in to assist with removing a lot of pelvic sidewall tissue and that caused me to lose over a liter of blood. So even given the complexities I was out of the hospital in a little over a week.  It really does come down to the surgeon’s skill and the hospital team‘s knowledge with excision surgery.

@Jfill21Do you think you would have been good to go in a month with the drainage issues or did that take longer to subside? Two months off from work is tough.

Sounds like you've had quite the challenging road besides the pouch. I hope your recovery continues to go smoothly and they were able to resect everything. Wishing you the best. Thank you for entertaining all of these questions.

Pouch2021, the rear drainage was easy to control. I had a home nurse a few weeks and she would fold a 4x4 gauze sher and place between the butt checks. In the beginning I wwould change the gauze every time I used the bathroom but it gradually slowed as I healed. There’s was no pain or odor, and the color changed from pinkish brown to clear. That said, you might go back to work earlier than six weeks if all goes well, but again, this surgery is another major trauma on your body and it takes time to heal fully.

How are you doing now?

Hi Mary, I've continued to do well. I've gained 12 needed pounds, I'm back in the gym and doing things I've always done--just a little more cautious. In other words, I use an Ostomy belt and a wrap whenever I workout or play with the grandkids

Hi - I had my jpouch removed in '18 (1 year after it had been disconnected).  I posted my experience with the removal at the Cleveland Clinic, if you'd like to take a look at it.  https://www.j-pouch.org/topic/...al-date-and-time-set.  The Cleveland Clinic team was just great.  I did travel about 2-1/2 hrs to have the removal done there, and while travelling did have its inconveniences, I felt the Clinic was well worth the trips.

I'm doing well with my end ileostomy, it's so nice to feel good again, and not worry about all thing pouch-related anymore.  For sure, ask lots of questions of your potential surgeon(s).   I wish you the best.

@Jfill21 posted:

Hi Mary, I've continued to do well. I've gained 12 needed pounds, I'm back in the gym and doing things I've always done--just a little more cautious. In other words, I use an Ostomy belt and a wrap whenever I workout or play with the grandkids

Oh that's amazing!! I am happy you gained 12 needed pounds. I love how you said needed lol.

Be careful with working out with your ostomy, working out can cause issues like hernias so be careful.

I use a ostomy belt at all times. I love the wrap idea you mentioned

So happy your well dear!!

Why did you have to get your pouch excised?