Hello. I am new to this site. I have UC and like the rest of you, I have been researching the best option for me like crazy!!
I found a doctor in my area(southern florida)Dr. Shore, that performs the J-Pouch procedure and Kock/Barnett pouch, which is relieving to me, because would hate to wake up with an ileostomy if he couldn't do the J-pouch on me!! Though, I am baffled, prior to finding him, I went to a live chat hosted by bcir site. Lady whom led the chat, sue, seem to push the bcir and had only negative things to say about the j-pouch. . Now I'm more confused than ever, can anyone give me some input.

That's sad that someone on the BCIR site gave you negative information about the j-pouch, especially since the j-pouch is the most widely practiced surgical choice with over a 90% approval rate.

When I decided on surgery I evaluated the top 3 options; j-pouch, BCIR, and permanent ostomy. I spoke with people who had each of these surgeries and then took a good look at my lifestyle and made my choice. Each option has pros and cons, none of the surgical procedures are perfect.

I have never regretted the decision to have surgery or the surgery I selected. I always knew that if a j-pouch failed I could try a BCIR or a permanent ostomy. Fortunately my j-pouch has been faithful these past 7 years. Most importantly, I am so grateful not to have UC anymore.

Sue

Coleen
I sent you an e mail

The only thing i can say about this is that if you go with a BCIR or a permanent ostomy, then that is what it is, permanent. You may always wonder 'what if' about the jpouch. Having the jpouch, which is very successful, gives you a more normal lifestyle as far as not having to always carry supplies with you. If for some reason it doesnt work for you, then you still have the option to go with the other procedures. My daughter has a successful jpouch now for 8 years.

I have had a Kock pouch for almost 31 years. With few problems. One surgery for a slipped valve.

However, if I were younger and starting over, I would go for a J-pouch. As some have said, if the J-Pouch does not work out -- you can always convert to a continent pouch.

Thank you for your insight!!

Hi my name is Susan Kay and I am the RN involved with the BCIR program at Palms of Pasadena Hospital. Some one who frequents this site forwarded me this post. I usually do not read/post on other message boards but felt obligated as it relates to this post. I have just checked the transcript when Coleen H. participated. There was nothing negative said by me about the j-pouch. Some of the patients talked about their own experience converting from j-pouch to BCIR but it was not me. I invite any one to visit our message board. You will see quotes written by me indicating it is a viable option. I do not want to get into a he said/she said battle but again my name was referrenced by the post by Coleen. As a nurse representing a program that has performed over 1000 continent reservoirs, I am thankful that patients have options (j-pouch, BCIR,Kock pouch etc). My wish to each and everyone is a happy health holiday season. Take care.

I have had a very successful j pouch for 20 years. I use the bathroom 2-3 tims a day. I am very healthy. I eat a diet that I enjoy. Your choice of surgeon is a very important one.
I have sent you a pm.I also can tell you that Palms of Pasadena does not employ a colorectal surgeon. They offer no other option besides a continent ostomy and it is obvious that if that fails for their patients ostomy is all that is left.
J pouch is a preferable first choice as is laproscopic ,if possible, which not all colorectal surgeons offer either.
You are educating yourself as we all have and should and in the right place to ask questions and get support from those of us who have experienced surgery personally.
Everyday I am thankful for everyone here, my friends and confidants!

This message has been edited. Last edited by: "FLGF",

I am only seeking input and support, not confrontation. I do not remember who said what, I only know that the chat session was negative about the J-Pouch and it left me feeling confused. I am sorry for the post to anyone I upset.

It's too bad that someone from the facility at which you inquired decided to stalk our website and post confrontationally to you when you are looking for opinions from patients, not medical professionals. Sorry you experienced that.

For what it's worth, choice of surgeon, as mentioned previously, is really, really key. I had one of the best in the country IMO. I am 12 years post-op with my J-pouch, which was done at the Cleveland Clinic, and have had no complications other than pouchitis, which tapered off over the years.

You can private message any of us about our experiences if you are now concerned about confidentiality using the site for your posts, which I could certainly understand.

Thanks for your support Rockand Roller! Hey, I like your title/name. After the Holidays, I will get more proactive with my treatment.

rockandroller.....who did your surgery at the CC? Dr. Remzi did mine this year. He is a wonderful and caring surgeon too.

Just a couple corrections.
1. Having a 'permanent'(Brooke) ileostomy does NOT mean you cannot have a j-pouch. As long as you have your rectum intact, and surgeons commonly do this over the recent years, you still have a chance for a j-pouch.
2. Susan Kay has been a member of our site for years and is not a 'stalker', but someone who cares about patients and the options available to them when faced with the horrible situation of losing their colon and deciding options.
Of course a discussion on a BCIR site would probably lean negative toward the j-pouch surgery because those involved probably have a failed pouch.
By the way, although extremely rare, I know a patient who has had a brooke ileostomy, a kock pouch and now a successful j-pouch. Never say never.
Bill

nys - I had the king himself, Victor Fazio. I don't know if he's still Chief of the department or not, I heard he was ill a few years back and working less hours. It's true what they say about surgeons and bedside manner - he certainly wasn't the friendliest guy I ever met, but he is an incredibly excellent surgeon.

Thanks Bill for the very informative info. It is good to know that there is a possibility of going to a jpouch after a brooke ileostomy as long as the rectum is still there.