Before deciding to have your j pouch removed, I suggest that you be examined by a surgeon who has lots of experience dealing with problem pouches.  Cleveland Clinic is one of the best places to get such an evaluation.  If it is determined that nothing can improve your pouch’s performance to a level that is acceptable to you, I would consider a k pouch or BCIR as alternatives to an end ileostomy.  These options do not require having an external bag with its various issues.  There is plenty of information online about both of these procedures.  My situation was somewhat similar to yours and I elected to get a BCIR.  My surgeon was Dr. Ernest Rehnke in St. Petersburg, FL and I received the best of care.  I now have an excellent quality of life with no leakage, a good diet and can do almost anything I want.  Best of luck with whatever you decide to do.

Bill

my k pouch is fantastic change from the pain, leaking, incontinence, antibiotics, autoimmune drugs and so on........  janet

it's not for everybody.  check out the k pouch korner on this forum.  but first i agree with bill, check with cc docs to make certain that some improvements/changes can't be implemented.  good luck and keep us posted please.

Hi The-

First off, just to claify...if you no longer have a colon you cannot have a colostomy bag...But an ileostomy that hooks up the small intestine (the ileum) to and outside bag.

I agree with both Janet and Bill,

I had a colostomy from age 2-3 then had it taken down and lived a rather unplesant life until k pouch surgery at age 18. (I did try other types of surgery but none were successful in my case).

The k pouch changed my life (actually it gave me one for the very 1st time) and I was able to do and be whatever I wanted to be.

I have had problems, surely, but all in all I would not trade it for anything else in the world...

Sharon

Thanks for all suggestions. I will look into these options. First on my agenda is to find a good doctor in my area. I live in West Palm Beach, fl and the colon recital doctors are few and far between. 

I had my pouch removed. 

Have an ileostomy now and my quality of life has improved 100 percent.  Looked at the other options and decided it's just as much a pain to deal with as a bag and they may cause more problems in the future.  

Not talking you out of any of the other two options but I am 60 and do not want to deal with anything internal after discussing it with a surgeon. 

I made the right decision.  None of them are a perfect decision.  You have to do what's right for you.  

Having an ileo is not as bad as all think.  I am dealing with it alot better than I thought I ever would. 

My diet is anything and everything.  I don't have to watch what I eat or drink... None of that stuff anymore.  No drugs.. No medications.  Done with all of it. 

I have finally started my life again.  And forget the bag is even there most of the time.  Not in love with it but I sure do like what it has done for me. 

Richard. 

Cleveland Clinic has a major location in Weston, FL (Fort Lauderdale).  While their top pouch doctors are in Cleveland, the ones in FL could be a good starting point.

I agree with Richard about making the best decision for you and am happy to know that things are working out for him and his surgical choice.  I do not want to appear to making a strong promotion for a continent ileostomy (k pouch and BCIR), but my choice worked out very well for me and I would do it again in a heartbeat.

 Like any major surgery, there are always the risks of complications that must be taken into account when making your decision.  However, I differ with Richard’s statement that “it's just as much a pain to deal with as a bag”.  For most of us with a k pouch or BCIR, we can eat almost anything we want and empty the pouch about 3-6 times a day with a small plastic tube (catheter).  There is no risk of a “blowout”, usually no skin irritation and no bag to cause embarrassment should it become visible under your clothing.  The stoma is flush with the skin, located below the belt line and covered with a small absorbent dressing.  The annual supply cost can be under $200 compared with well over $1,000 for a conventional ileostomy.  Please come back with any questions you have.

Bill

The Cleveland Clinic colo-rectal surgeons at their facility in Weston, Florida are all excellent.  I had my j-pouch removed in 2007 after becoming incontinent from several fistula repair surgeries that failed--my sphincters just gave out.  My surgeon was excellent and I was given a permanent end ileostomy.  His name is Dr. Juan Nogueras.  Best of luck to you.  Things are going great for me now!

Caty