Considering pouch removal - help, anyone?

I can relate to your situation and the decisions you will need to make.  My j pouch had to go because of recurrent high grade dysplasia in the anal cuff.   You will want to see if the doctors at CC have anything else to suggest on correcting your j pouch problem since there is no turning back once your bottom is sewn shut.

 

Since I was very much against having an ileostomy with its associated issues, I researched both the k pouch and the BCIR alternatives that do not require having an external bag.  My decision was to get a BCIR that was done in St. Petersburg, FL by Dr. Ernest Rehnke.  He has done well over 1,000 of these procedures, including removal of many j pouches, and I can highly recommend him. Like the similar k pouch, the removal of my j pouch and creation of a BCIR was done in one operation.  I had no complications and had a full recovery in about four months.  Cleveland Clinic does the k pouch procedure, but not the BCIR.  Both procedures have a high success rate and patient satisfaction.  Like any major surgery, these two procedures as well as the conventional ileostomy sometimes have complications that should be recognized when making your decision.

 

I think you have done a good job of formulating questions for your appointment at CC.  You should find lots of information on the k pouch and BCIR on the internet that are very informative and  might help you with additional questions.  The BCIR website (www.bcir.com) has an excellent video presentation, clinical study articles and contact information.  Please feel free to send me a PM if you have additional questions or just want to talk.  Here’s wishing you the best of luck.

Bill

n/a

I am so sorry...it is a long road to travel to finally have to give up...I agree with Bill, you have pretty much covered all of the bases with your questions and will probably get a few that you didn't think about from the other pouchers...I would ask if there are other options (if you are interested in them) and if it is possible for you to go for a continent ileal pouch.

Other than that I would just ask what you need to do to build yourself up and to be as strong as possible for the surgery.

Good luck, I know that this has been such a hard decision for you...

Sharon

 

I had surgery to divert from using my j-pouch to a permanent ileostomy a few months ago at the Mayo Clinic.  I think it is good you are going to CC. They are the top 2 hospitals in the country for surgeries like this. 

 

I had chronic cuffitis, chronic pouchitis, strictures that came back immediately after dilating and pelvic floor dysfunction.  I was giving myself enemas in order to empty my pouch for 8 months. I didn't have my j-pouch removed. If I need to later I will. Your problems involve a fistulas and abscesses so you might need to have your pouch excised. 

 

I  had a pouchoscope a few weeks ago at Mayo's. The cuffitis and pouchitis are completely gone. I almost cried when I saw the inside of it. I'm including this because it's an example of how just diverting is working for chronic cuffitis and chronic pouchitis.  

 

A lot of emotion was involved in deciding to quit trying to get my pouch to work.  It really was difficult. Now I wish I had this done 18 months before I did.

 

If I were younger maybe I would have gone for a different kind of pouch. The ileostomy is better than I imagined it would be. I had a terrible time with my temp stoma and this one is much better. I took everyone's advice from here that said how much better it would be. 

 

You've got a good list. Please don't think you are giving up. Your pouch problems have nothing to do with your personality. 

 

Good luck 

Thanks you guys.  Bill - I've been following your trip with the BCIR, and am so very glad it's worked out for you.  My surgeon originally recommended a redo, which is totally out of the question for me.  I'm feeling too worn out to take a chance at another surgery not going right, necessitating yet another surgery.  And - if I do have some sort of "Crohn's" permutation, I just don't see how a redo would help me avoid further abscesses, fistulas, pouchitis, strictures, etc.   Yes, I sound pessimistic, but I'm just too tired!  I very much appreciate your offer to answer additional questions and I may very well be contacting you at some point.

 

TE Marie, I've been following your history with interest as well.  I'm amazed (in a good way) that your pouchitis/cuffitis have cleared.  And -- I love hearing when people go to ileostomies and have positive reports on them. 

 

This current "infection" - or whatever these episodes are - is getting me down.  As I'm aging (I'm 59), it's becoming more difficult to think of spending the rest of my life handling these issues.  It's tiring, and limiting and yep, scary.

 

It's possible I'll back out of the decision I was so sure I've made.  I am aware how difficult a removal can be, and complications that can arise, etc., but kinda thinking now's a good time, before more aging (bah!) and illness take their toll on the old body.  This will not be easy for my dear hubby to go through, either.... 

 

Sharon - thanks for your support as well.  As always, you know how to make a person feel a bit better about things!

Hi!

I had my jpouch excision surgery April 2014 after almost 15 years with my pouch.  It too had 3 setons in for r/v fistulas, Crohn's of the cuff (beyond cuffitis, they said) and a 4cm mass next to the pouch.  Therefore, my pouch had to come out to heal.

 

My original surgeries were at Hospital of the Univ of PA, but my excision was done at Johns Hopkins.  My surgeon did his residency at Cleveland Clinic and worked at the Mayo before coming to JHH.  He does about 6 excisions a year.  I was sent to Mayo for a second opinion before meeting him, and the surgeon at Mayo told me to go back to JHH for surgery since I live near Baltimore.  My ostomy care is also there.  I never consulted with CC.

 

I have no regrets about the surgery.  My fistulas totally healed up when my bottom did.  About 6-8 weeks recovery and it was hard for the first 4 weeks for sure.  No complications, but one trip to the ER two weeks after surgery due to dehydration.

 

I am happy with my permanent ileostomy, all things considered.  I sleep through the night, I have zero pain, take zero medications, see zero doctors.  Nothing drips and leaks out of my bottom/setons/fistulas since it all healed, and I don't have to wear a maxi pad every.single.day like I did before.   Intimacy doesn't hurt anymore.  I look and feel so healthy!  For me, it was the solution.

 

It took me well over a year and half to agree to the surgery, even though I was repeatedly told by my GI that I had to do it sooner.  It was one of the hardest decisions I ever made.

 

Best wishes for health for you!

Laura

How many of us on here are 59?  I use to think I was the old lady here 

 

I wanted to get rid of my pouch - when I  finally decided to give up using it. I  was scared of the surgery. Now I wonder if I  should have had it excised. Since everything is working so well maybe I won't need to have it out.  I am not getting any younger.

 

It's nice to read about good things happening in j-pouch world. Thanks for sharing Laura. I think it is a preferable to have surgery close to home. It makes follow up appointments a lot easier. My j-pouch surgeries were done by a local surgeon that trained at CC. Mayo's is only 3.5 hours away from home. My local GI trained there and sent me there after my cuffitis wasn't going away. He said he was a generalist and I  needed an IBD specialist.

 

Besides that isn't John Hopkins where Dr. House practiced, p

 

I'm going to play my age card and top all of you – – I'm 68! I'm on the plane to Cleveland for the K pouch surgery. Tough decision, but necessary as J ran its course. Best of luck to you coming to that decision. Janet

Best of luck, JLH -  I so hope the surgery/recovery goes well, and it all works out for you like it has for others.  Keep us posted! 

 

TE Marie, any plans for the future of your pouch?  Is it a day-to-day thing, keeping it as long as there are no problems?

 

Since I've been on tindamax/anusol/canasa for almost a week now, things are feeling somewhat better, but I still feel some sort of low-grade infection going on.  In addition to possibly feeling the "tinglies" from the tindamax.   But this cycle is just not how I want to spend my "golden" years, hence, the desire to make a decision, stick to it, and move on...