Well I haven't posted in a quite awhile, but I have a consult with Fazio next week about possible k-pouch. I had a j and it didn't work out, fazio removed it last year and said I had to wait a year before attempting a k. Well, its been more than a year now. I am healthy and have been traveling constantly for work, but now I am wondering if I even want to try again. My biggest concern is that I will spending my life in bathrooms again. So a couple of quick newbie questions for the group -

1. How long does it take to intubate and empty? With the end ileo I am in and out in a minute. Granted I empty quite frequently b/c I can't stand the feeling of weight in the bag.

2. Noticed lots of people having issues with food. I eat anything and everything again now. Will I have to go back to the watch everything I put in my mouth stage again?

3. Recovery? How long before you feel normal? I know it takes up to year for the poouch to stretch and heal, etc. But will I be out of commission for 1 month, 3, 6? With J after take down I never really got back until they removed it.

4. Am I too old? I feel like I may be pushing my luch with these surgeries. I know I don't heal like I used too. Will be turning 40 soon.

5. I would love to get rid of the bag but only if my quality of life improves or at least stays the same. I guess that's not really a question but would love to hear your thoughts about life with the k vs. an end-ileo.

Sorry for the long post. Trying to get in the right frame of mind for the meeting wtih Fazio.

Hi Well I am a new k-poucher myself (my pouch will be 7 months old on the 11th!)I had my j-pouch 15 years and its definitely a bit different.

1 How long does it take to intubate and empty? Well I can get the cath in my pouch in under a minute almost every single time, getting everything to come out, well....... on a good day (as in I chewed everything really well and didn't eat too much fiber) I'm out in about 5 mins and on a rough day between 10-15. I'd say average is about 7-10 mins. I only intubate 4 times a day though.

2 Issues with food. Well...... most pouchers have a least SOME issues. With my j-pouch I ate everything and anything and often suffered the consequences of extremely loose stool, butt burn etc. With the K-pouch the consequences are usually just extended intubation sessions and perhaps a little soreness. I don't really brave any raw veggies yet except tomatoes. I eat other cooked veggies and tend to do ok as long as I don't overdo it. Too many veggies and/or fruits in one day can make me a little miserable though. But, I'm still only 7 months out so I figure I will probably continue to expand my diet the more comfortable I am with my pouch.

3 Recovery. Well I was out of work completely 7 weeks and did p/t for 3 and back full time at 10 weeks but I have a desk job. I am 29 so I recognize that I'm pretty young and its easier for me to recover though it was my 4th abdominal operation so I"m not a spring chicken either
As to feeling normal, well. It just takes a while to recover from major surgery. I had my j-pouch removed and a complete proctectomy done at the same time. Minimal adhesions so my surgery lasted 5 1/2 hours, in the hospital 10 days. Recovery is tough and there's no getting around that. Having a constant drain in is tough, then learning to intubate, setting an alarm in the middle of the night as you "grow" your pouch, its rough. but just like anything else, you work through it.

4 are you too old? I don't know if I can answer that question!

5 - K vs end ileo. Well for me, I'm young and I was still ready to fight to not have the bag permanently. I had it for 1 1/2 years when I got the k because of a horrible rectovaginal fistula and when I was given the opportunity I jumped at it. But going with the k carries risks, the complication rate is high, the re operation rate is high, however the satisfaction rate is high too despite that. I'm just 7 months now but I love my k-pouch, its a freedom from the bathroom I haven't had since I was 12.

Can't really help you make this decision, I think its really personal, harder decision than the j-pouch and mostly because its the 2nd or 3rd go round for the person considering it. I hope the responses you receive help you make your decision!

good luck
--
katie

You are NOT too old!!!!!
I had a Kock at 52

1. How long does it take to intubate and empty?
It depends on what you eat and how much you drink. If I eat lots of pasta, or a sweet potato and don't drink enough(grape juice is a great drink to help make things flow) I will spend too much time in the bathroom b/c the stool is thick and slow. So I try to balance that.I also find it better to eat smaller meals and eat more often. Whether you have the end ileo or kock, of course chewing the food well is important.

2. Noticed lots of people having issues with food. I eat anything and everything again now. Will I have to go back to the watch everything I put in my mouth stage again? Everyone's system is different. I eat foods that that I probably shouldn't (popcorn, nuts) but I haven't had problems. I do stay away from corn, mushrooms, raisins and other similar foods because they do not break down and clog the catheter. When that happens you just take the cath out, manually pull the stuff out and start intubating again.

3. Recovery? How long before you feel normal? I was off work 7 weeks. I work with young children and it can be physical. This is a tough surgery to recover from and there are guidelines to follow. 6 months after surgery I was power walking the streets of NYC

An important factor to consider: do you have a doctor nearby who is familiar with the Kock that you can go to if needed? Is traveling back to CC workable for you if necessary?

Katie has said everything very well.
It will be 2 years in January for mine.
I had another one for 24 years.

Keep looking through posts and asking questions.

You've gotten good answers to your questions but I can add a bit of info.

I got my k-pouch when I was 61 years old....so I wouldn't think you were too old for it.

I had the complication of being dx'd with Crohns after my k-pouch surgery, but so far, so good. I've had it now for 4 1/2 years.

As far as time intubating, it seems to me that the number of times per day one intubates varies inversely with the time it takes each time. Without being too gross, if the same amount of material has to pass through the catheter each day, either you do it often for short periods or, if your k-pouch stretches, less frequently for longer intubation periods for everything to pass through the catheter. My k-pouch has continued to stretch even a couple of years after surgery, so I need to intubate less frequently but it takes a bit longer than it used to. I can go 6 or 7 hours without going to the bathroom so it doesn't intrude in my life.

The more liquid the effluent, the more volume it takes and thus one has to intubate more often, but it's a quick process, like 2 or 3 minutes. It all seems logical to me.

Regarding recovery, it all depends on whether you have one or more complications or if all goes smoothly, in which case you might feel your old self after 4 weeks and be able to do everything after 6 weeks. I felt good enough to help with a tag sale after my surgery and so got a hernia--not a good idea.

It's all a trade-off and you have decide whether you want to take the chance of life without a bag. One thing most people might not consider is that the k-pouch is much cheaper to maintain--less equipment needed, no creams, etc. for the rest of your life.

The downside in my opinion is food choices. I've been very careful, and just ate popcorn for the first time in about 4 years. No problem! If you live on fresh salads, you'll have to make some changes, but there's plenty left to eat (except mushrooms, corn kernels and some other stuff).

Good luck in your decision-making!

Thanks Kadybird, Les and Lynn. I kind of worked myself up yesterday. After I posted this note I went back to read some of my older posts and started to cry. It brought back all the horrible, dark and scary emotions. I then spent the rest of the afternoon trying to distract myself.

I really appreciate the positive information. I have been reading through as many of the posts as possible to insure I know what all the risks are but its nice to remember what the reward can be too. I leave Wednesday for my appointment.

I live in SoCal so have access to Launer, Beart, and Flesher, all real good doctors, so f/u shouldn't be an issue. FOr insurance reasons it makes more financial sense to have surgery at CC (if I have surgery).

Thanks again.

Dr. Schiller in LA does the BCIR version of the continent pouch. Dr. Launer in San Diego can make a nice K-pouch.

And of course, Dr. Fazio at the Cleveland Clinic is fine too.

I have a K-pouch. 31 years. One slipped valve surgery in 1998. Let me know if I can be of any help.

Take care.