The problem is that there is no such thing as a perfect solution for colectomy. Nothing can approximate a healthy colon. That said, j-pouch, end ileostomy, and continent ileostomy (k-pouch/BCIR) are all good options. But, each has its problems and pitfalls.

Conceptually, continent ileostomy would seem to make a lot of sense, but it has a high reoperation and complication rate, and is technically difficult with only a few centers performing it. J-pouch and end ileostomy are available pretty much everywhere. It doesn't seem fair, since there definitely is a class of patients where continent ileostomy is a needed option. Not everyone can manage an end ileostomy, particularly if there are problems with adhesive allergies.

But, the reality is that if you want the continent ileostomy, you have to seek out a provider, AND be willing to travel for after care. But, it does look like it is slowly expanding again, now that it is clear that the option needs to be available for failed j-pouches or those who never qualified in the first place.

A few things could contraindicate this option. One would be a Crohn's diagnosis. Another might be anatomical problems, such as severe adhesions, short small bowel length, or other intraoperative findings that were not anticipated. You have the luxury of being near Toronto and Drs. Cohen and McCleod. A consult with them should help you decide how to proceed.

Jan

I would never opt for a bag for life. That is just me. the BCIR and or Kpouch are good options and I always said I will travel once a year if I have to for after care no matter where I am and how far it is to get to a doctor.

Otherwise you don't really need that much after care. Fistulas, etc. sure but I haven't seen my surgeon since I had the BCIR done in December. I see a local GI and a few here scope pouches. I get a scope every 3 months due to FAP.


My surgeon can also give instructions to any GI to do a scope. It isn't that hard, you don't even go to sleep for them unless your GI is funny about that.

Marc,
I had mine done at 18 and moved to a different continent at 23. No follow up from a surgeon for years at a time.
My GP was fine for the usually pouchitis and honestly for the first 20 yrs or so I was a very happy poucher...I ordered my supplies from Toronto and picked them up every other year. (don't really need much...just lube, tube, syringe)...even now, after all of the problems that I had I only call my surgeon if something is really wrong (nothing is).
Any good radiologist can do the basics like endoscopy/pouchoscopy/ocpacification as long as you have the old pictures and instructions and I honestly don't think that you would need one unless there was a problem. I didn't have any pouch exams done for 20 yrs.
A successful surgery mean that you no longer need a surgeon. Not even a G.I. I sailed through the usual flu bugs, colds, gastros etc without ever consulting for them.
So, if you are interested, don't worry too much about the 'after sales service'.
Sharon

Hi,

Thanks for the information. I am aware of Dr. Cohen and Dr. McCleod. I think Dr. Cohen is an excellent doctor and the correspondence I had with him was great.

As for Dr. McCleod, I would never let this person touch me. I received a referral to be seen by her and sent the referral and my file in to her office. 6 weeks went by without hearing anything, so I followed up with a phone call. Her staff were extremely rude. They told me not to call back and that if (her majesty) Dr. McCleod were interested in seeing me that they would contact me. They told me and I quote "Don't call us we will call you if interested". Not only did I find her staff to be extremely rude (cows is a much better adjective in my book), I consider this to be a representation of the type of doctor Dr. McCleod is. When did doctors and their staff lose their compassion and humanity? Nobody deserves to be treated this way and it is completely unacceptable. Mooooooooooooo

Solomin

OLOLOLOLOL Solomin! Thanks for that laugh and I agree I tell people to f off a lot and doctors hear a lot of NO from me too.

I actually saw Dr. McCleod in consult in 2006 and found her quite pleasant. Ultimately she did not end up doing my surgery but that was more due to scheduling. I'm sorry your experience with her was so negative. You should never see a doctor you don't feel 100% comfortable with--in fact, that is the main reason I sought out a new GI. I was just never confident in my former one.

That said, in my experience, I have noticed that there is sometimes a tendancy for doctors' secretaries/admin staff to be very protective of the doctor they work for, to the point of "blocking access." Even with my own surgeon, I on several occasions ran into issues with the secretary not relaying messages, telling me the doctor was too busy to see me/answer my question, to call back another time, etc, etc. When I had pouchitis, I actually had to get my GP to phone the office because the secretary had roadblocked contact. She told me the surgeon was too busy, and I'd have to get a referral back to him through my family physician!! When I actually got an appointment she was nice as pie, but on the phone it was like dealing with the gatekeeper for the Pentagon vault. As for my surgeon, he's great... as soon as he heard I was having issues he called me that evening. So there was certainly no reason for his secretary to give me the run around. It's like they go on a power trip.

Outside of my own experiences as a patient, I happen to have a job where I do work with doctors (I'm a disability analyst for insurance and often have to call claimant's doctors for status reports). It's not that unsual to run into an admin who guards the doctor like some sacred treasure; e.g. you're not getting through to the doc until you speak the codeword! *LOL*

Honestly, I don't know why staff have to be that way. I know sometimes patients can be pushy, but for me, part of the whole patient experience is how you are treated by the admin staff, since ultimately it's those people you are going to need to deal with when making appointments, phoning with questions, etc, etc. It would be some much smoother for all involved if the admin staff could be little more pleasant and accommodating.

Solomin,
You are not the first person that I have heard that from...resend your file to Dr C directly with a note to his secretary that you already had direct contact with him and would like to be considered for a k pouch...you will be accepted if your medical condition allows for it...I will re-contact him for you after that.
Sharon

Sharon,

Dr. Cohen Cohen has always been nice and professional. It is Dr. McCleod whose office was rude.

By the way, I never rude rude or acted in an unacceptable way towards Dr. McCleod's office. I was always courteous, friendly and professional.

Solomin

Solomon,

I Did some research on BCIR. There are 2 or 3 surgeons in the states performing BCIR. One is in FL (bcir.com) one is in LA/CA (http://ileostomy-surgery.com/index.html), the third one is in TX. I do not have the site.
It seams there Is some IP involved, if you look at their sites, BCIR looks like a logo or trademark. It might because that, it is not wildly available elsewhere.

In the forum, the feed backs are generally good. It is given the pouchitis is a shared issue with all kind of pouches. If you are considering between k or BCIR, I would suggest you consider BCIR as BCIR is a modified k, a better version k.

I scheduled BCIR in a few months, will let you know how it goes with me.

Guy still with j for now