Hi Everyone,

It's been a long time since I've posted. Life's been very busy, and I count it as a good thing that I can keep up with it!

I have a permanent ileostomy after losing my j-pouch to cancer. I like it for the most part, but every several weeks, I go through a period of time where I leak insanely for a few days, then just as unexpectedly, it will stop. This is driving me bonkers, and I am considering having a K-pouch or a BCIR done.

I'm concerned about what would happen in the procedure failed, since I'm already missing part of my small intestines.

Do any of you have any advice about what I should be asking my surgeon about either of these procedures? My current surgeon is not the one who would be doing either of these procedures, but I would ask his advice first.

-Rae Hadley

I had a Kock pouch that was removed and replaced with a 'permanent' ileo. I then had a second Kock done.
The surgeon who removed the Kock was not encouraging me to have the second one done, but he was also not the surgeon who would be doing it.
I consulted with the surgeon who does the Kock, and after reading Op reports and doing a physical exam, determined that I was in good shape (intestinally speaking) to have the second Kpouch.
So my suggested is to consult with the doctor you are thinking of using for you continent procedure if you are a candidate.
Dr. Dana Launer in LaJolla is excellent.

Hi Rae!

It's good to see you though I'm dismayed that you are still having leakage problems. I have no advice about the K-pouch except that there are a few people here (Les Williams is another one) who are doing really well with having a K-pouch after losing their j-pouch as well as people who are on their second j-pouch.

I'm glad to hear that you are doing well apart from the leaking though and although we have missed you I'm glad it was because you have been out there living your life.

Keep us posted.

Luv & hugs

Shell

Hi Rae
my K-pouch is just over 1 year old now. I got it 15 years after I got my j-pouch. My j-pouch failed due to crohns disease and fistulas but my k-pouch is doing great!
There is definitely a risk of short bowel syndrome whenever you have two of any type of pouch. My surgeon and I spoke at length about this. In the end though, I felt it was worth it for me. I'm still young (29) and wanted to get rid of my ileostomy (had it for over a year while trying various methods of salvaging my j-pouch).
I do not have any nutritional issues, in fact I eat a low calorie diet just to maintain my weight.
I love the freedom that comes with the k-pouch. I RARELY have to empty at night (only if I eat after 9pm) I only empty 3-4 times a day. No bag, no leaks, I can wear the clothes I like. I'd do it again in a heartbeat.
Of course, only you can decide if its right for you. Take your time, its a big decision.

Good luck!

--
katie

Hi Rae, Good to see you back.
I agree with everyone and Chris is doing phenomenal with his K pouch after having the j pouch removed, ileostomy for a year and then k pouch and 2 subsequent surgeries, valve revision and valve/pouch adjustment.
I also agree that Dr Launer is the best option for consult where you are.Dr Sung is good but ready to retire in LA.
Also, I have not heard once with any of Dr Launer's patients that I know that they have needed valve revisions, his success rate is very good.
If you have your op report it will tell him if you have enough small bowel to do a kock, it requires more than a j pouch.
I personally wouldn't ask the current surgeon as those who do not perform k pouch surgery are usually not advocates for it as Leslie mentioned.
Good luck with your decision.

Hi Guys!

Thanks for the suggestions. My j-pouch surgeon used to do kock pouches, but stopped doing them after he trained to do j-pouches. I wouldn't have this done by him, even if he thought he could do it because there are other more qualified surgeons around who are current on them. I don't think though, that he woul be biased against me deciding to do it, and he knows my history first hand. I would absolutely consult with the surgeon I would opt to go with, but he would be my first "tell me if I'm insane" reality check.

I really don't want to have more surgery. I don't mind my permanent ileo at all, aside from this persistent leak problem. I'm comfortable, have no pouchitis, I eat what I want, and do anything I want. The ileo does nothing to get in the way of the life I want, but I just can't figure out why I have these damnable leaks. I'll go through a month of supplies in three days at times. It's very frustrating.

I have not decided against a kock. I'm just considering options.

-Rae

Hi Rae,

Do you have access to an excellent ET?
Sometimes they have tricks up their sleeves and can be very helpful.
Also, Convatec has an 800 # with nurses on staff to speak with you. Maybe that would fix the leak issue. I don't blame you for not wanting more surgery, especially when outcomes are not guaranteed.