hi my name is Becky and i was wondering about the K pouch surgery.
I have an ilieostomy on and off for about 6 years now. I am very satisfied with that, i've gotten used to it and have no problems or complaints at all. I had my first surgery done when i was 15 for UC....they removed everything. I then had an ileoanal pull through and had many problems in the rectum.

ive had the ilieostomy for about 3 years straight now and like it, i am 21. But, ive been having some major problems in my rectum that are undiagnosed, and so i was considering having that area removed and sewn up for good. I went to a doctor at USC and he gave me some options... J pouch, K pouch, or just rectal surgery with ilieostomy. Im kinda hesitant about the k pouch because its new and im not sure about the complications with that because i am so young and want a family some day.

i need to make a decision soon before my rectum gets any worse....so this is kinda part of my research....
thanks so much

Hi Becky and welcome to the wonderful world of pouches!
I have a K pouch and have had one since I was 18 (I am 47 now).
Although it took a couple of tries to get mine right (I heal badly, not common and not the fault of the sergeon) I enjoyed 20 full years of freedom, liberty and beauty where I traveled around the world and lived a life that I could never had imagined before my K pouch...( I had bad...really bad colitis/ spastic colon and no anal sphinctre!)
Yes, I have had to have my k pouch redone recently (after over 20 years of fine service) and it took a few tries to get it right again for the samve reasons as the first time around but I would not trade it for all of the tea in China.
Talk to as many people as you can...meet with a few if possible and make up your own mind on which pouch is right for you...you can always go for the J pouch if it is medically possible and if you need to later on have it transformed into a K pouch....keep your options open...
Sharon

thanks so much.... not really thinking though that a j pouch would be a good idea... i guess only the surgeon will know.

so, questions about maybe how often you have to empty the k pouch? and the complications.

i think im just a little scared to try something new and different and have to get used to it.

thanks for the encouragement

Hi Becky...I had an brooke ileo at 21 for UC. They removed my rectum at the same time. I have it converted to a K pouch six mos later and they had to clean out the area in my rectum due to infection. That was in 1980 so it took a few attempts afterwards to correct the slipped valve (meaning, the catheter would not go in easy and some leakage from the stoma). It has worked now all these years and I'm 50.

I have chronic diarrhea that makes it nice to have a K pouch since my bag would fill up so much. I have to chew chew chew my food or some pieces can get stuck in the catheter and I have to irrigate it (putting water in the tube while in the stoma with a syringe) and eventually all comes out fine. I do not eat any skins since even if you chew good the skins stick to the sides of my catheter and give me more problems.

I agree with Sharon that you should keep your options open and you are so mature to reach out and do your research - good job girl!

Best to you, Janice

thanks so much janice.... wow that is cool

i was wondering how often do you empty your k pouch, and do you have to empty it more than you would with a bag?

alright thanks so much for the support!

Also, how are you suppose to know when to empty the k pouch? that seems kinda scary to me, but im sure its just a matter of getting used too

When to empty a k-pouch: at first after surgery, the pouch must be emptied on a regular schedule, as I recall as often as at 2 hour intervals. One must set some alarm clocks during sleeping hours to keep up with that frequency. It's done so very often so that the sutures and stuff making the k-pouch have time to heal.

Your surgeon will give you a schedule to follow and in a couple of weeks, the interval extends to 4 hour intervals.

For the first year, you may need to intubate as many as 7 to 8 times a day. But as time goes by, the need to empty happens less frequently.

I've had my k for over 5 years and intubate about 5 times a day. Some others intubate even less frequently. I figure most people urinate at least that many times in 24 hours, so it's no big deal.

How do you know it's time to empty? -- you come to recognize a vague crampy feeling. If it's inconvenient to intubate at that time, one can postpone for an hour or so, but the crampy feeling intensifies and you know you'd be more comfortable if you could find a bathroom. When you think about it, a person who has a healthy colon experiences a similar need to find a bathroom when it's time to "go." We with k-pouches just do it more frequently.

Best part -- feeling healthy, having no more potential accidents, wearing all clothes for looks or sports (except for maybe a string bikini and even with that you could just wear a band-aid over your stoma), saving the expense of ostomy supplies (you just need the catheter which lasts a month or two (or more) and can be ordered by mail and some cotton pads that you can find in a grocery store for very little money.

Conclusion -- a k-pouch can be a great choice for some patients and there's a list of surgeons on this site who can perform the surgery. Most surgeons prefer a "motivated" patient; in other words, someone willing to follow the intubation rules following surgery and chew foods well.

Good luck with your choice.

Lnnyesa really spelled it out nicely. I have to empty several times a day and night because I have always had alot of diarrhea. But, it's so easy to insert your catheter and have it fall into the toilet. I had so much problems with my brooke ileo leaking and not being able to sleep on my side and this has been a godsend for me.

Ask you surgeon if there is a patient they can refer you to to see if he/she will let you visit and see how it actually works.

hi...i'm located south of you in newbury park...thousand oaks area...i had uc for years and then finally had an ileostomy at 31..had the k pouch done at 35...i had some repair work at the ripe old age of 57, i'm 58 now!!i love the k pouch..when i had the k pouch done i was busy with a 4 year old and a 1 year old...stuck to the drs. orders...healed up quickly...i empty about 4-5 times a day...(the more u eat and less u exercise the more u poop)..i am eating kettle popcorn and drinking a cup of coffee right now...i eat everything..nothing is off limits for me...like everything else...it is different for everyone...i love it!!

Hi Becky,
I have had a K-pouch since I was 16 years old (I'm now 45). I became pregnant very (too!) easily 3 times; and all 3 of my pregnancies were successful full-term pregnancies, after having the K-pouch. My pregnancies were MILDLY difficult for me during ONLY the last trimester of each pregnancy, insofar as my inserting the tube during the very last couple of months -- because of the growing baby getting mildly in the way somewhere near the pouch, but not too bad--but my understanding is that it was unusual to have even that small difficulty, and that most K-pouchers have totally problem-free preganancies. My pregnancies resulted in 3 healthy children. For the first 2 pregnancies, I was able to work full-time right up until the day I went into labor (for the third one, I kind of voluntarily elected to stop working a couple of months before). For all of them, I had a "normal" delivery, that included only a simple, normal short hospital stay for the birth. My first 2 children were born vaginally, and the 3rd was through a C-section only for the reason because she was in a breach position when I went into labor. Every time, the moment the children were done being born, I was able to intubate normally without any problem; my K-pouch went immediately back to perfect-working condition without any difficulty whatsoever inserting the tube. So as far as that concern about having a family some day, I don't think it is something that should stop you from getting a K-pouch.

This message has been edited. Last edited by: lcolche,

Hi Rebekah,
My son has a k pouch. He is 21. He did not adjust to his ostomy after his j pouch had to be removed. He loves the k pouch.
I have a j pouch so I know how both function.
The k is easy. Less issues to deal with.
If you want to e mail me I will PM you my e mail address
Holly

wow thats so awesome!! thanks so much you guys....wow there is alot im gonna have to consider....this sounds so cool.....

the only thing that i was also concerned about is where i live....I live in Fresno, CA and im getting the surgery done in LA and no one in fresno does surgerys like this so i was thinking would it be that big of a deal if i was far away?

thanks

Hey Becky
(great name )
my name is Becca, I've had the k for almost 2 years now. I live in chicago and had to travel to Ohio to have mine done. But, I was determined, so I did the research, like you, and was pretty comfortable making that hike.
And yes, it's a bit challenging b/c noone in chicago deals with Kpouches. I have a colorectal surgeon here that has studied under the surgeon who did my surgery, so he's very familiar with kpouches. But still, everytime I have to do a post-op visit, I have to fly to Cleveland.
It is definitely something to consider, but I dont think its something that should hinder your decision.
Hey and Lynnesa, who says you can't wear a bikini?!
http://cancer-sucks.com/rebecca/balcony.jpg
i wear one rather well I think

Anywho, on normal days I intubate about 4 times. (some days it's even 3. although I'm not saying you should aim for that, but it does happen)
It's pretty good if you're doing it 4-6 times a day.
Initially, it took me about 20 min. to intubate, gradually over time it's now about 10 min. (that's including cleanup, etc)
you do have to remember to have your supplies on you at all times, but if you've had an ileo, you're probably used to that. and all the supplies really entail is your catheter, some lube, and some pads to cover the stoma. although mine also include a collapsable cup and a little syringe)
this thread I put a picture of what my 'kit' looks like, so you can get an idea:
http://j-pouch.org/eve/forums/a/tpc/f/5531006091/m/1141024162

as far as knowing when you have to go...don't worry, you will. you get 'urges' that you get real familiar with.

i don't quite understand your predicament though, honestly. if you have your rectum sewn up for good, you can't have a jpouch?

anywho, as i've said before, a kpouch is not a breeze. you definitely have to WANT to have it, and have to be pretty determined to treat it how the doc's tell you. but ultimately it can provide alot more freedom than you've had. and yes, i wanted the kpouch b/c i was very active and young and just thought having a bag would cramp my style in doing the martial arts that i am addicted too.
so for that much, it was worth it to me.

I just want to add that the surgeon should be someone who is actively doing alot of k pouches. Since the op is not done frequently, I would get a second opinion in LaJolla from Dr Launer and see who you feel better about.
Chris also went to Ohio from FL initial op and now St Pete, FL which is 140 miles, 2 hrs by car.
If done right the first time you shouldn't need to go but once a year for a check up.
Also, ask the surgeon for a referral for someone closer that knows how to scope a pouch, general surgeons usually know how. You don't want to end up in the wrong ER.

alright thanks guys..... im still really thinking about it and really trying to keep an open mind

thanks so much