BTW the K pouch surgery is apparently not done at many hospitals but I don't know where it is done and if it is done at a hospital near me (Philadelphia, PA).

Hey Lady -
I'm so sorry to hear that you are going through this. Ugh my heart breaks for you. Have you had a consultation at Cleveland Clinic at all? I found them to be very open to alternative options and not "blowing the patient off" so to speak. I don't know anything else about it, except that the one person I know with a K pouch just ran a half marathon last summer.
Good luck and please keep us posted.
Kelsey

Thank you Kelseyx. I'm glad to hear that this K pouch does not limit some activity. I need to find out about other types of physical activity as well. I have since found out that Morristown, NJ hospital does this surgery (at least one Dr on staff does). I've called and emailed a few hospitals (and cleveland clinic) for information and my health care provider as well. I will provide information as I get it. Thanks again. Have a great day. Mary

Keep us posted!!

My doctors and most of the hospitals around here do the conventional Brooke ostomy. I found a doctor/hospital in Morristown NJ (1 and 1/2 hours from me) who does this K pouch operation. Does anyone know or have heard of Dr. Rolando Rolandelli? I have an appointment with him in a few weeks but I'm trying to find out failure rates, etc. Anyone have any information about this?

Thanks so much for any information. I appreciate it. Have a great day. Mary

PS the following you tube links are the CD that I got from Palms in FL re the BCIR. FYI.
http://www.youtube.com/watch?v=HTRB2E-zjnY&NR=1
http://www.youtube.com/watch?v=d11n6vuZzVI&feature=related
http://www.youtube.com/watch?v=WlEHQ5HDfQw&feature=related

Hi all, I've had the surgery. It went well. The doctor was very optimistic that there would be no complications with this and he was happy about the way the surgery went. He was able to use all of my small intestine and rework the J pouch into the K pouch. The first meeting after the surgery the first thing he said after how well things went is that I must have been in a lot of pain. I am still getting use to the procedure for emptying the K pouch and trying to figure out what supplies I need to carry with me. I know I need the catheter (and band aids to cover the stoma) but not so sure about the flush syringe. I need to put weight back on and I getting use to being back at work. Well that's it for now. I hope all of you are doing well. Mary

Hey Mary -
That's great!! Glad things went well and look good (knock on wood!)!!
Kelsey

To those that have had the K pouch or BCIR surgeries. I had my K pouch surgery in June. At first I had a lot of gas and now not as much (maybe 1/4 what I did have). to put on the weight I lost I was told to have some milk shakes. I had a lot of gas after and I told the doctor I don't ever remember being lactose intolerant. He said because I had not eaten (no food after surgery and then liquid diet for a week after discharge) that it should calm down. I took some lactaid at first. But the last time I had a soda float I didn't take the lactaid and the gas was not so bad. I had an ice cream sandwich last night and didn't seem to have any problems.

I do have questions.

What supplies do you carry around with you? I assume the catheter and band aids to cover the stoma. I was told by my doctor to flush at least once per day. But sometimes it seems a little thicker (mostly in the AM after I wake) and flushing seems to help. What other supply items do you use that you think might be useful?

I also have some splattering (from the gas?). How do you keep that to a minimum? Or eliminate it?

Also when I empty the pouch, I rinse the catheter. So far I've emptied the pouch at home or a couple of times at work (no one there) but so far I've haven't been in a busy public bathroom. How do other people in the bathroom react to that? Or how do you handle that?

Any suggestions would be greatly appreciated a lot. Thank so much. Have a great day. Mary

I just had the six month visit with the surgeon. He was happy with the way the stoma/nipple looked and said I can come back in a year. or not. Or just come back if I have any problems or issues. He also mentioned that if I have not had any problems thus far, than all is good to go.

I've started to get use to flushing the pouch. I flush it 3 to 5 times a day. Usually around 4.

I am very happy with the results and I expect this to last for a long, long time. I was even able to go to Texas to be at my nephew's wedding.

I hope everyone is doing well and had a great Christmas. Happy New Year to all and the best to everyone. Mary