My initial thought is to be sure that you have explored any other non-surgical treatments before having your j pouch removed.  You may want to have a consultation with doctors at Cleveland Clinic who specialize with treatment of difficult j pouch problems.  Once your j pouch and the opening you were born with are gone, there is no going back.  If your final decision is to go ahead with removal of the pouch, you may want to consider two alternatives to the end ileostomy: the k pouch and the closely related BCIR.  Both of these alternatives avoid having an external bag with its associated issues.  The pouch is emptied with a small plastic catheter at your convenience and typically 3-5 times a day.  The stoma is button hole shaped, conveniently located  below the belt line and covered with a small absorbent pad or dressing.  No one knows you have it unless you decide to tell them. Considerable information on both of these procedures is available online. 

 

No matter what procedure you select, you will want to have it done by a surgeon who has lots of experience in j pouch removal since it is a difficult operation.  I was fortunate to find a very skilled surgeon who gave me a BCIR when my 30 year j pouch had to be removed.  Everything was done in one operation with no complications.  Some people have had problems with their bottom healing quickly, but mine was OK when I left the hospital.   I can eat most of the foods I enjoy and participate in the activities I like, and I take no medications for my pouch.  Please feel free to PM me with any questions you have, and good luck with whatever you decide to do

Thank you so much for the information.  I have been seeing a GI doctor at Mayo Clinic Jacksonville. I haven't seen the surgeon yet.  Where is the Cleveland Clinic located?  I finally made the decision to remove the J-Pouch this week.  It was a difficult decision and it took over 3 years to finally "give in".  All I know is that it's time for the J-Pouch to be removed.

I had my 15 year old pouch removed a year and half ago.  The reason for the pouch excision was Crohn's of the cuff (extremely bad cuffitis), r/v fistulas, mass next to the pouch (not cancer).  I too had tried all the drugs and multiple surgeries and procedures and setons to correct it all.  Finally, after many years of agonizing over the decision, I had it all out and changed to a permanent ileostomy.  I'm doing SO well!  Feel great!  No regrets.  It's a huge decision as permanent is permanent!  It also can be a challenging surgery so have the best of the best to do it.  I also did a lot to prepare for the recovery time (ie get lots of help lined up) and got in the best health/shape I could (I was doing the GAPS diet).  Lots and lots of prayer!

 

If you click on my name in blue by my profile pic you can see all the other posts about pouch excision/perm ileo that I have commented on.  I hate disease and wish we weren't all talking about this!  Let me know if you have other specific questions.

Best wishes,

Laura

Please. 
I am doing the same.
Don't say give in.
I consider it getting my life back if all goes well.
I don't  have much of one now.
It's work and home.
Work and home.
I want to do more.
Simple things.
I am not asking for much.
Just not to suffer with this pouch anymore.
But... I am not giving up.
This... I think is gonna be another rough journey to have it removed and live with an ileo.
Gonna be a challenge 
Richard

Maggie, Cleveland Clinic is in Cleveland, Ohio. They have facilities at other locations in the country, but their world-class J-pouch surgeons are in Cleveland.

I was wondering if the Cleveland Clinic had another site closer to Georgia with the same quality of surgeons as Ohio.  It is also hard to decide who to put this kind of trust into.  My original surgery was performed at Shanads in Gainsville FL.  The initial surgery and recovery went great.  I developed major complications prior to reconnect and spent a total of 3 months in the hospital.  I am petrified that I will have another bad outcome.

Laura, it is great to hear that you had such a positive outcome.  I was diagnosed with UC initially and now I have Crohn's in the cuff and pouch.  

 

Richard, I appoligize if my comment came across wrong.  I know there are many people experiencing the same problems.  I don't know about you, but I'm tired of people telling me "I know what you are going through" when they have never had a bowel disease of any kind.  I am so glad that I found this forum.  I became a member yesterday.  I have a lot to catch up on.

 

Tammy

 

Cleveland Clinic has a location in Weston, FL (near Fort Lauderdale).  I do not know about the quality of CR surgeons there; perhaps other members could provide that information.  I had my BCIR surgery by Dr. Ernest Rehnke in St. Petersburg, FL and the care I received was first class.

Thanks.  I will contact Dr. Rehnke for another opinion.

Maggie Mae, I hear you on the concerns about complications.  3 months proves a serious complication!!  With my original colectomy/jpouch surgeries, I had complications as well and spent 31 days in the hospital that summer.  This pouch excision surgery was much more straightforward with recovery for me, however any surgery can have bumps along the road.  

from what everyone seems to say Mayo Clinic (even not in MN) is world class, I have heard great things about the AZ as well as Jacksonville location. Good luck to you, sounds like its time. I have been fighting off removal for 5 maybe 6 years now. A few years ago after several obstructions about 30 days apart that landed me in the ER I almost made the decision then, but since then with an added med (methotrexate) to my weekly Humira seems we've quelled the beast, well along with quarterly dilations for my strictures. anyway I digress, I have several friends who live happily with their perm ileos, in fact one just posted about running her first ever 5K. good luck and let us know how it goes.

"Richard, I appoligize if my comment came across wrong.  I know there are many people experiencing the same problems.  I don't know about you, but I'm tired of people telling me "I know what you are going through" when they have never had a bowel disease of any kind.  I am so glad that I found this forum.  I became a member yesterday.  I have a lot to catch up on.






Tammy"


       

O... No... No.. No... I didn't take it the wrong way. Definitely no need to apologize!
I think it is a positive step when you've had so many problems with the Pouch.
We are not giving up.  Just taking another journey.  A hopefully positive journey.  I didn't mean to sound like it was negative.
Just so hard to convey in a post.
Everyone knows that.
Richard.

on the same page as bill--check out your other options, if that is possible given the context of your living situation.  i am scheduled for a k pouch at CC in nov and am finally looking forward to getting rid of the j!!  check out your options so that you can make an informed decision and not have regrets latter on.  at least, that's the tack i took.  

I have read alltheze posts with great interest.  I've had my pouch for just over ten years.   I battle chronic pouchitis and take cipro/flagyl and tincture of opium.
I thought the surgery was the 'cure' for the ulcerative colitis.   While that may be true; unknowingly, I traded for pouchitis!  Diet/vsl3 does nothing for me (reliably, at least).   The antibiotics make me feel unwell in general.   The opium presents its own set of problems!  
I now live in Japan and will not be able to get it here anyways.

For the past two years, I have been contemplating a reversal and locking into a permanent ileostomy.  The thought is quite scary, to be frank.    I just fear going through another horrific procedure and then having a new set of problems (skin irritation, bag breaking/leaking, ???).   I remember not liking the loop ileostomy one bit.....    What to do???   Is the permanent ileostomy different?

Thanks for any help/sharing experience.

Mike

I have only had my pouch for about 6 months and have had a lot of issues with it. I am seeing a surgeon today about the possibility of removing the pouch an going to a permanent ileostomy. I did not like the temporary one I had while the pouch healed after my first surgery. One thing though was that it gave me more control over where I could go and what I could do. I have very little control and many embarrassing accidents. fissures, pain and it's worse than my colitis ever was. Don't really want to live my life with a bag on my side but I might rather do that than live in pain every day. I will ask a lot of questions and let you know what I learn. Judy K

Dear Maggie Mae,

 

The Cleveland Clinic in Weston, Florida is an excellent facility with great colo-rectal surgeons.  I had my j-pouch removed, anus closed, and received a permanent end ileostomy in 2007.  My surgeon was Dr. Juan Nogueras.  He did an excellent job and I healed up just fine post-surgery in about 8 to 12 weeks.  Now I'm enjoying living my life again. 

 

Caty

have you explored the k pouch option?  that's the route i'm taking and have been encouraged by several on this site.  good luck, jlh

Thanks to everyone!  It is great to have such a support system.  I have a couple of weeks before I meet with the surgeon.  This will give me time to look into all of my options.

It's not giving in. It's about your quality of life. I had mine taken down after 2 years. My body obviously rejected it. I was sick of being sick. I couldn't gain weight and was always in pain. Now with a bag I can live my life. I eat whatever I want, I'm on no meds, Im healthy and feeling great again. Having a great surgeon is critical though as its a complicated procedure. It's not my first choice but its the best decision I made. Life with a bag is ok once you adjust. I change mine every 3 days in the morning.  I don't over eat or else you empty more often. No one knows I have one unless I tell them. I wear a swim shirt when I swim. It was worth it for me.

I met with a surgeon yesterday. This was a man who really listened to everything I was going through. He told me the timing of my medicines was all off. Lomotil needs to be taken about one half hour before eating, Colestipol should be taken on an empty stomach. My nitroglycerin ointment only 2x daily when I am emptied out and can rest for a bit to let it work. When it is wiped or washed off I can still use my recticare ointment for some relief the rest of the day, gave me a new fiber supplement Korsyl for 2 x a day. He asked me to try this regimen sticking to the timing he laid out for me for 2 weeks and then we will meet again. First I need to gain some control over my movements and I need ti get some relief from pain due to fissures. He does not want to jump into something as drastic as pouch removal until we are sure we have tried everything else. I left feeling more hopeful than I have in a long time.  Judy K

Sounds like sound advice. Also, even if this is not enough to get the fissures to heal, a diverting ostomy to allow the area to rest and heal is the first surgical step, not pouch removal!

 

Good luck and I hope it works.

 

Jan

Hi Judy,

I am glad your doctor is not 'rushing' into anything.  A decision like this is a full-on one way bet.   I have been contemplating the same with ten years into this tempermental pouch.  
I find it to be as hard as getting the surgery to begin with.  That bet didn't pan out as it was purported to be!

Thanks all for your input.   I am pursuing all other options before locking in the ostomy idea.

Good health to all.
Mike

My husbands jpouch is still there, it just has to be checked yearly, 

       
       

Your pouch life sounds like mine!
I am having mine removed November 9th.
I am going to get my life back.
Gain some weight do things beside just struggle through my workday and pain and urges.
I hope I feel the way you do after all is done.
Since I have had my pouch I can count on two hands how many good days I have had in just over two years.
I look like death warmed over.
Feel that way too.
I also feel that these two years have been harder than the uc years I went through. .
Richard.