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Hi gang,

Just want to update you. I'm now six weeks post op, and already 2 miracles have occurred. First, I can finally sleep ALL night without having to get up and go to the bathroom (first time in over 20 years!). Second, I only have to empty my pouch every six or seven hours (give or take)!!!!! When I had my J pouch I was pooping every few hours and was awake half the night. So, despite the intense post op pain (which will soon go away) I LOVE my new Koch pouch, I should have done this years ago! I'm so happy it's working so well!! I owe Dr Cohen at Mount Sinai everything, and the staff there was amazing! I could kick myself for suffering for so many years, hoping my pouchitis in my j pouch would stop. I instead tried every therapy available, to no avail. Had I done my K pouch sooner I could have avoided so much pain, but, better late then never! If any of you are thinking about getting a K pouch, provided you can find a good surgeon, go for it! It's a rough one to recover from (they also removed my rectum, now THAT hurts!)but once the first month, it gets so much better!

Cheers,
Eric Roll Eyes
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Hi Eric

I have been wondering about you, as the first time that I discovered this site, you were about to have surgery. I am glad to see how happy you are. It feels reassuring to me to see you post the very day that I have asked my GP for a referral to Dr. Cohen. She does not have any patients with a K-Pouch; however, she has sent patients to Dr. Cohen for other issues. I'm wondering how long you had to wait from referral to your first appointment?

Barb
Hi Barb,
I'm from Alberta & saw a gastro intestional surgeon in Calgary in May 2004 about getting my ileostomy converted to a Kock pouch. He faxed a letter to Dr. Cohen about me on May 28, 2004 requesting that I be considered for Kock pouch surgery. My appointment with Dr. Cohen was on Monday, June 14, 2004 & my Kock pouch surgery was on Wednesday, June 17, 2004. So, as you can see, the whole process occurred very fast for me. Good luck to you in your quest to have this surgery. - Dixie
Wow Dixie! That was incredibly quick. Did it give you enough time to think? Had you already made the decision to convert?

I have had an ileostomy for 20 years and it works well. I have to have a stoma revision which is pretty simple but it made me think that if I'm going to have surgery maybe this was the time to consider all of my options.

I wish that I would have been brave enough to ask for a referral earlier as I am off for the summer and this would have been a good time to get things done.

Thanks for your response.
Barb
Wow, Dixie, that's fast! But, that was eight years ago, maybe Dr Cohen is busier now. My referral letter was sent in November 2011, my apt was booked March 2012, and surgery was June 19th. Prehaps it depends on the urgency of your case. I was in pain, but quite stable, maybe that's why I waited so long? It's worth the wait, he's an excellent surgeon! Good luck Barb, keep us posted!

Cheers,
Eric Big Grin
Thanks for the timeline. . . . .it certainly is reasonable. I will keep you posted for sure. I'm kind of scared as my ileostomy is basically working just fine. It's easier for me to make a big change when I feel that it's the only option. I'm excited to meet Dr. Cohen.

Thanks for responding.
Barb
Hi Barb,
I had my ileostomy for 28 years - got it in 1976 when I was 24 years old due to Crohns disease. Kock pouches were very new then & no one told me anything about them or that that was an option for me. Never did like the ileostomy, but made the best of it as I had no other choice. I was having nothing but problems trying to keep the thing on for a long period of time & tried all sorts of different types of ileostomy systems, wafers, etc. I finally turned to the internet in my quest to find a remedy to my problem. It was then, in late December 2003 that I discovered the Kock pouch. I did my research on it & decided that was what I wanted. During my researching period I spoke to Dr. Schiller from Los Angeles & he suggested that I get my pathology records dug up from my surgery to confirm my Chrons diagnosis. I went to a gastro intestional surgeon in Calgary & he dug up my records for me & found out that I did indeed have ulcerative colitis, not Crohns, so this opened the door for me to have the Kock pouch surgery. He then faxed Dr. Cohen in Toronto for my appointment with him. I hand carried my pathology report & gave it to him during my appointment. My Kock pouch surgery was 2 days later. So, yes indeed I had plenty of time to think about it. I still remember the feeling I had when I walked out of the hospital after having the drainage tube removed. No bag hanging off of me - just thrilling for me. I wish I would have learned of this surgery years earlier.
Hi Dixie

Thanks for your response. 20 years ago I was not told of any options either.. . . . I didn't know there was anything else for me until about a year ago. Over the years, I kept asking doctors but they didn't have any information for me. I have recently lost about 100lbs and the 'fit' of my appliance is terrible so I need to do something. I don't feel secure. I have seen an ET Nurse and changed ostomy companies but I really need a stoma revision which is making me consider something more. The cost of ostomy supplies is starting to scare me as well. I spend about $300 a month on my supplies which adds up quickly.

Should I be trying to get my surgery report before my first appointment with Dr. Cohen? It was 20 years ago so I'm not sure how to go about it.

I'm kind of scared. I hope Dr. Cohen can ease my fears.
Barb
Hi Barb,

I wouldn't worry about getting the pathology report from your initial ileostomy surgery unless you were told you had Crohns. I'd say you have a great chance of being able to have the Kock pouch surgery considering all you have been through trying to make your ileostomy work. Dr. Cohen is very easy to talk to & has a wonderful bedside manner. He really cares a lot for his patients. Yes, the cost of Kock pouch supplies is an awful lot less expense than the ileostomy supplies. I'd say go for it. Even if things don't work out for you, you can always go back to the ileostomy later. Good luck! - Dixie
I've had my J-pouch since 2005 (UC) and am fed up with the limitations. I can no longer go on missions trips, can't get through an exercise routine w/out using the bathroom several times and have to strategically place myself near a bathroom where ever we go. This is the first I've researched about the K-pouch and I'm excited about the prospect. I had a flush stoma after my initial surgery that was a nightmare but I've been actually contemplating going back to it...that's how desperate I am. What are some questions I need to ask or specific things I need to know when I see my doctor?
congrats! It gets easier. Hell 2 days ago I went to the bathroom once the whole day. I said "oops shouldn't do that again!" But it has it's ups and downs but I can see how this is better than a unpredictable jpouch. More people need to know about the bcir and kpouch surgery. Can help a lot of people to stop suffering and it has been around longer.

As for questions I would ask what the aftercare is like mainly and how many surgeries the surgeon has done for kpouch or cirs/bcirs.
Don't let anyone tell you not to have the thing, plenty of those idiot doctors out there. There is a master list of surgeons that do continent ileos on the kpouch section on this forum.

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