ILEOSTOMY LEAKS CHANGE TO A K POUCH

Hi Dgr,

No, I did not have ileo -to-k pouch but have had my k pouch since 1979...I think that means it's been 36yrs!

Let's see...first the explanation.

The k pouch is a continent ileal reservoir developped in Sweden by Prof Koch (thus the name)...

Basically they take a length of small bowel, fold it onto itself, slit it open and restitch it to form a pouch. They leave about 30cms (12 inches) of bowel hanging off of the unattached end and form a one-way valve that allows you to put a tube (catheter) into it to empty out the pouch but closes off as soon as the tube is pulled out...thus no air (gas) or stool can be released from the pouch. Technically it does not leak.

They then make a low stoma (around where your apendix used to be) in the abdominal wall and attach the pouch over it on the abdomen.

http://img.webmd.com/dtmcms/li...on_of_kock_pouch.jpg

Practically speaking, once you are healed (it is an open surgery and requires a minimum of 7 days hospitalization or more depending on your healing and post op complications (the biggies are ileus, when your gut decides to not wake up, infection + fever or some other fun stuff) you leave the hospital with the tube still in place. It stays there for 1 month attached to a leg-bag.

As time goes by, you start to clamp the catheter (tube) for an hour at a time...The rythmn is 1 in 4 hours then 2 in 4 then 3 in 4 etc until you are permanently clamped. 

This allows your pouch to  stretch and get used to filling up and holding matter & gas in it.

Once you clamp 4/4 you basically only empty the pouch when you feel the need. That feeling is very natural and is not painful.

You feel your pouch fill, you reach the point where it feels uncomfortably full, you put the tube in (you Always use lube), it empties into a reciepient and then you remove and rince the tube and put it away.

The contents remain liquidy. 

Roughage is to be avoided in the begining because it clogs the flute-holes in the catheter and then needs to be cleared out (you remove the tube, pluck the gunk out and put the tube back in and repeat if necessary then continue to empty)...Chewing is essential with a k pouch.

Eventually you can eat almost anything. (things like pineapple, mushroom, corn, leeks, some nuts and a few other foods don't like the k pouch. Overly pasty foods like mashed potatoes and white bread or rice tend to thicken things up in there and often require extra liquids in your diet or prune or grape juice to get things thin enough to go through easi.)

If things are too thick then you just inject water into your pouch (irrigate it)...I do it constantly without any adverse effect...

If  I eat after 9pm I usually wake up around 5am to empty out...if not I sleep through the night.

I empty about 6-8xs day. 

When I wake up, before or after most meals and before bed.  Many people empty much less.

When out I carry a make-up bag with my tube, mini packets of lube, a 60cc syringe, a tiny water bottle with a squirt top and mini packets of kleenex to cover my stoma.

I fill the bottle with water before entering the stall, intubate normally, if it flows then I just rince the tube in the bowl and dry and pack it up.

If thick or clogged I irrigate, empty and repeat.

I work at different locations and am out a lot for business...I alway manage.

There are a limited number or  K pouch surgeons around the world, most in the U.S. and 1 in Canada, 3 or 4 in Europe (England, Sweden...)

You need an experienced surgeon to do this surgery...There is a master list somewhere here.

PM me or any one else here if you want more info.

Sharon

I had a J pouch for 13 years following an emergency colectomy for severe UC. The J pouch was never a success. A surgeon tried to redo it  but failed and I ended up with an ileostomy. After a year I persuaded the same surgeon to give me a Kock pouch. I have had it for eight years now and am really pleased with it. I have been lucky because my valve has never slipped and I have not experienced any major problems. I empty the pouch 3-4 times a day and always irrigate. I regularly take the probiotic VSL#3 to prevent pouchitis. My surgery was done in Oxford, UK. It was the best thing I ever did and I hope to keep my Kock pouch for ever.

Love mine! Best thing that happened to me post-UC. I agree with what the others said. Takes a little getting used to but then the pouch learns to go longer with out emptying. I love not having a conventional bag 24/7. I wear a nursing pad over my stoma (stoma is flat) to collect mucous. But wear a large square bandaid during swimming and sex. It literally gave me my life back!