I was just in Toronto to see Dr. Cohen at Mt. Sinai hospital on Monday. I have been complaining on this website for such a long time about my old straight pull-through, and then this wretched j-pouch. I've had problems with incontinence since my takedown in 1993, and the j-pouch with chronic pouchitis has made it so much worse. I'm finally booked in for k-pouch surgery in Toronto (I live in Calgary, AB) on February 4, 2010.

I am sooo friggin' excited, depsite all the issues I've read about on this section of the forum. I guess my biggest issue will be the long distance travel if/when I get pouchitis or have a valve issue.

There are no doctors in my end of the country who know about the k-pouch, so I'd rather stay in Toronto until I'm in the clear... how long does that typically take? I think I'll be in the hospital for a week, and maybe a little longer if I get an infection, which I always do (abscesses). Dr. Cohen told me to stick around town for about a week after I'm released. Since my boyfriend Shawn is going to come out for the duration of my stay, I figure I may as well find a short term rental for 1 month or so.

If anyone else had done a long distance trip for surgery, I'd like your opinion. If there's anyone familiar with downtown Toronto near Mt. Sinai, let me know of any rental suggestions.

I had my surgery about 6 hours away from home in San Diego. I was in the hospital for a week for the surgery then stayed in the area for 3 days. Dr. Launer told me after I left that he wished I would have stayed longer but it all worked out. I had to come back 3 weeks later for a check up, to test the pouch for continence and remove the constant drain (more permission to remove it). I haven't seen Dr. L since. If I have a problem I shoot him an email and he's always reassured me that it was ok (minor leakage during intubation).

About a month ago I moved to Alaska and I have talked to one GI who said she knows what a koch pouch was and could probably scope me if I need it (probably?) and she is in Anchorage, a 6 hour drive away in itself. A GI local to your area should be able to diagnose and prescribe medication for pouchitis (even though it seems to be less prevalent in continent ostomies). If you have a valve issue you tape in your catheter for the constant drain, which you will be very familiar with after your first month post surgery, and that should stop the leakage until you can be seen or when the trip is more convenient for you. If catheterization is the problem, if you explain the situation to your local hospital they should be able to help you get the catheter in.

If there is a serious problem the plan for me is to catch the first available flight out of Fairbanks to San Diego with a constant drain in to hopefully get fixed up, healed and back to my studies. In all reality It would probably mean waiting until the end of the semester (with a constant drain in) if possible or discontinuing my courses until the next semester.

Hope this helps! Congrats and good luck!

I just had my surgery Aug. 24th, I live in Missouri and had my dad drive me two hours to the airport then take a flight that takes about 1 1/2 hours to Cleveland. Then rented a car to get to Cleveland Clinic. I stayed in the hospital for I think about a week and a half had some complications with rapid heart beat and fever spikes. I don't how far away you are or if you are driving or flying, but I actually prefer driving for one reason. The leg bag sucks, and by far this was the most painful surgery for me yet. I think you mentioned you had a j-pouch, so I'm guessing he's going to hopefully use that, but there is still a lot of stuff to do. My surgery was a little over 7 hours. I also went back to Cleveland Clinic on Sept. 24th but was having fevers and had a pleural effusion in my chest cavity that when drained punctured my right lung, so flying was out. So we drove 8 hours home. This was easier for me because instead of using the leg bag, I just kept the gravity bag on, and never had to get out of the car. So I would say a lot depends on distance and travel method. Airports seemed to be a hassle for me, hard to irrigate and do all that stuff in public airports, and a lot of uncomfortable seating and waiting.

Congratulations Tiffany..I had my first pouch with Dr. C over 30 years ago...I stayed in Toronto for 3 years and then move here to Paris France...over the last 10 years I have had a number of complications which forced me to go back to Toronto and have Dr. C redo my pouch. 4 years ago I had my pouch comepletely redone and the valve changed..I stayed for 6 weeks in all (6 days in the hospital and 5 weeks at my best friend's place...) I had my usual complications including 2 occlusions and the usual stuff but I was really fine in the end...my problem being that I don't heal very well or quickly so I ended up back there in 2007 with other problems...
I go back each time and stay as long as needed and when I found a French doctor to help me Dr. c stayed in constant touch with both him and me...
He is very devoted to his patients and their health..you just keep copies of your file and all k pouch info wwith you and find a good gastro to follow you at home...
I know Toronto well so PM me and I will give you all of the info you need...
Sharon

It's crazy how uncommon this k-pouch is! It seems no one is very close to their doctor. I guess it's better to have an amazing doctor regardless of the distance.

It's a 3.5 to 4 hour flight to Toronto from Calgary, or about a 3 day drive. Calgary is sorta north of Montana, and Toronto is kinda north of New York. Since the surgery is in the winter, I am not sure if I'd feel comfortable driving that far in the snow. I would probably get stuck somewhere and have to build an Igloo until someone comes to my rescue. I guess I could have the surgery rescheduled for the summer, but I would rather be healed by then.

I was thinking 4 to 6 weeks should be a long enough time out there. I don't really know anyone personally out there, and am not down with being there all alone. Thankfully it's in the downtown area, so I can hopefully find a rental within walking distance to the hospital for Shawn to visit me, and near a grocery store and whatnot.

I am expecting to get an infection. The last time I had abdomenal surgery I was in the hospital for 5 days, and then was home for a week and a half, and started getting really sick, and wound up back at the hospital for 2 weeks. I would rather be expecting the worst and be near that hospital since they are more equipped to deal with that.

I have a great family doctor, so I am going to bug her to find me a GI who has heard of the k-pouch at least.

Don't plan on the infection Tif, it does not have to happen..yes 4-6 weeks is a good time frame and no, driving is not a great idea...there are a lot of us kpouchers in Toronto so talk to a few of them...you are very young and probably reasonably healthy so there is no reason that you should not heal quickly and well...downtown rentals should be easy to find but basement apartments in the near suburbs are a good idea too...we have a good subway system that is north/south and east/west and the hospital is directly on the line...(Queen's Park station)..it would take you exactly 1/2 an hour from anywhere on the line..tons of malls and condo buildings directly connected...check out Craig's list or go onto a sublet site...I know tons of people with basement apartments but none that you wouldn't need a car for.
The whole team on Dr. C's floor are angels sent from heaven...kind, friendly and full of emotional generosity...even the accounting team!
So don't wait if you don't have to..winter is a great time to have it done...stay in and heal until the sun comes out!
Pm me if you want to...
Sharon

Thanks a lot! I will definitely be harrassing people alot more about this when the times comes. I am so bloody happy about this.

I didn't take that subway when I was there, so I wasn't sure how close it was to the hospital. I know I saw the entrance to one when I was at the Eaton centre. That is also a good idea. I was thinking about renting a two bedroom suite so my sisters could come out for a week to visit the town and moi! I don't know how appealing that would be in the winter. I am mostly doing the surgery in the new year so Shawn and my sisters have more holidays time, and Feb 4th was the first date. They're doing layoffs right now at my work, and if for some reason they let me go, I'm going to try to get it done ASAP. I want it before the summer time! There are so many things I avoid because of my predicament.

Hey I live in Red Deer .5 years ago I went to Toronto for the surgery.Everything went really well.I was there 5 days before my surgery and was able to come back home 9 days after.There is a Doctor in Calgary that Dr .Cohen referred me to for a follow up but I cant recall his name right now.If you have any Questions you can email me.good luck..charlie

Hoping Tiffy-poo is doing great and I know we are all anxiously waiting to hear from you. When you can, please post a little something.
Hugs and healing thoughts to you.

Tiffany is doing great!! She'll post soon!

Hi everyone!
I had surgery on Thursday and am already off the Morphine pump.
I was nauseous for the first couple of days but it's getting better.
My tummy is bloated and a little sore, and I believe I may have lost my belly button!
Dr. Cohen reused this vertical scar to access my belly, then reused a lower pelvic scar (sorta like a c-section) to put the stoma. It's pretty low. I wish I had of brought a skirt to wear out of the hospital, and I'm sure the plane ride will be rather uncomfy.
He removed my j-pouch completely. I asked why he thought I was having so much incontinence but he wasn't sure. He was going to examine the pouch.
Anyway, thanks to everyone for their advice and prayers!

Glad it went well and you sound like your healing well already! It sounds like we have the same scar pattern. My vertical incision went just above my belly button and when I woke up my belly button appeared to be gone. But it showed up again after a week or two once the swelling went down.

Hang in there, The next 2 months or so are gonna be tough but it will be worth it!!!

Tiffy...I'm so glad to have met you on FB...I have to tell you I really enjoyed your Barbie butt anology and thought I would share it with everyone. I think we need to include Ken for the men though.

Glad you are out of the hospital and doing well...Susan

Hey Tiffy,
So glad to hear your post...please tell me that you are not planning to travel yet....try to rest in T.O. as planned originally for as long as possible...you need to not be moving around too much and when you do travel home..ask Air Canada or whoever you are flying with for post-op wheelchair assistance...you touch nothing! no luggage, no long walks through the airport etc...just let them take care of you....and ask for an aisle seat...don't want you climbing in and out over some rude person who makes you jump over their knees!
The low scar is actually not too bad to deal with in the longrun...I have found that it sort of hides in the pubic hair after a while...you just have to keep your site waxed or shaved for the first while until the skin gets used to the acid from the moisture that the stoma makes..keep it really clean and dry at all times so that it doesn't get irritated...I use folded mini kleenex and change hourly in the begining..stoma powder helps too...(worse case senario I keep a tube of polysporin or cotisporin for when it gets red.
IN the end I found that for those intimate moments I put a skin tone large bandaide over the stoma and hubby doesn't even know it is there (thought that it had closed up and dissapeared!)...You can also wear a thong and it hides nicely (I just have problems folding all of my newfound fat into my thong )
Keep me posted on your progress and give Dr. C a kiss from me..tell him that I am doing fine...
Tons of cyber hugs from here...
Sharon