Hi All,
I just received a call back from CC. I had transferred all of my records from Mayo Clinic to Dr. Fazio. Evidently, he took one look at my mound of paper work and said, "K-Pouch"! I don't really know anything about it and am as nervous as can be! I've had my j-pouch for just under a year and it has never functioned properly. I also had terrible luck with my loop ileo! I am terrified to go into another surgery and possibly have MORE problems!
Dr. Fazio expressed the need to see me ASAP, so scheduled me for next Tuesday! That's a quick appointment!
Can anyone offer me advice, ideas for questions to ask, or just some encouragement?!?!

Really I'm just posting for encouragement. I had a consult with Dr Fazio about the kock pouch myself back in Feb. He is very kind. He also runs about 2 1/2 hours behind and most of that time you'll spend in the little exam room so bring a book cause there aren't any magazines!
I'm impressed you got in so soon, everyone there is wonderful. Only thing I can suggest is do as much reading on the kock pouch on this forum and search through google there is a lot of info available, then just start writing down your questions.

Good luck to you, you'll have to let us know how it goes. BTW - I AM getting the k-pouch in May

--
katie

I recently had K-pouch surgery with Dr. Fazio 1/29/07 and to be honest, it was a very painful recovery, more so than my earlier J-pouch and ileostomy surgeries. My surgery was very complicated due to scar tissue, etc. Don't let this discourage you though. I'm at week #10 post-op and am finally feeling better. It's exciting to go walking/biking and/or be out and about without a bag and/or the bathroom urge and run problem.

Be sure to read up on everything regarding the K and generate a list of questions prior to meeting with Dr. Fazio. I agree that he tends to fall behind schedule and you may feel rushed when you finally sit down with him so be prepared.

It was hard to wrap my head around the idea of catheterizing myself through an abdominal stoma but it's becoming more comfortable over time.
Be sure to request that he does the surgery and not his fellows.

Feel free to e-mail me privately if you have specific questions. Please know that you're in very good hands with Dr. Fazio.

SeedTchr,

First off, let me start by saying I seem to always be a difficult patient. Maybe its a personality thing. :-) Anyway, I struggled with UC for nine years of my life. Tried and failed with two seperate JPouches (13 surgeries) and now have a KPouch. I had the surgery last August and am now feeling healthier than I can ever remember.

There is some recovery after surgery, but I dont recall it being any more difficult then recovery after the JPouches and may have even been easier and less painful. There is also some adaptation time needed as you get used to intubating (putting a catheter into your body through the side/belly). There is also a differnent feel to your back end as it will be sewn shut. All that being said, it really does give you the chance to get a life back.

Many people are very happy with an ostomy when their JPouch doesnt work. Dr. Fazio is one of the few that I would even consider trying to give me a KPouch when my JPouch wasnt working. While the end illeostomy is pretty common and many colorectal surgeons can do a good job with it, a KPouch is a very demanding surgery and not many surgeons can do it or have been trained to do it. After having gone through the KPouch surgery and also had both a temporary and an end illeostomy, I am a big proponent of the KPouch if given the best surgeon. With both the illeostomy and the KPouch, you will have to carry "equipment" for the just in case episodes. With a functioning JPouch, that isnt necessary. For a KPouch, you only "wear" a bandaid or covering of sorts. Nothing unusual looking and easy to deal with. The illeostomy is no big deal after awhile, but I know that I was always concerned about the possibility of a leak in public. With both of these procedures, the carrying extra supplies becomes second nature.

The one downside I have noticed with the KPouch is follow up care. Since so few surgeons are practicing this procedure, there are not many surgeons or GI's that are even familiar with the procedure. So help may be a long drive or a flight away if you arent close to the Cleveland Clinic (or other hospitals where they perform this type of surgery).

I wish you the best of luck. You will definitely be in good hands with Dr. Fazio.



Mike S

Hi,

All I can say is be prepared. Dr. Fazio wanted to see me as soon as possible as well. I had my appointment on Friday and he was doing the K-pouch that next Monday! I am almost one year out and havent looked back once! Tracey

Yea, once it's determined that you may be able to get a kpouch, it's a pretty fast ride thereafter.
in terms of, when my surgeon referred me to Fazio, when my records finally got sent over there, Gina was calling me within the day.
the conversation literally went like this:
"Hello, Rebecca?...This is Gina, Dr. Fazio's nurse...Okay, so he can get you in for surgery next tuesday, the 26th?"
(heh, exactly a week from the day i was tlaking to her...and i hadn't even met the man yet! hehehehe)

BUT it feels good to expedite things along sometimes. when you've been down a long road already and all you want to do is get to that end where you're able to be away from doctors for a while. if that makes sense.

good luck!

Seed,

Dr. Fazio is DEFINITELY the BEST. I had a Brooke Ileostomy for 13 years before he made my Kock Pouch in 1990. I remember the recovery as being similar to my original surgery. Again it's major surgery with major healing to occur. You won't regret it and will be back to your normal routine in 6-8 weeks. Please feel free to contact me with any questions.

Lynne

Thanks everyone! I am preparing to go to Cleveland on Monday night to see Dr. Fazio early Tuesday morning. I am nervous, but your words of encouragement are helpful! Gina sent me a list of people to call who have had the surgery, so I will be doing that as well.
Thanks again! I'll keep you posted on what happens at my appointment!

hope you appointment went well. Dr. Fazio is the best.
I PMed you
Leslie