Do the ostomy nurses in the hospital help you learn to take care of the K pouch? All the talk about emptying the k pouch is so foreign to me since I have only had an ileostomy. I am nervous that I would get woozy (light headed)
(I am a fainter) trying to stick a tube inside of the stoma. I always felt like I had to treat my stoma gingerly when I had my ileostomy because it looked raw, and bled so easily. I guess I am just having fear of the unknown.

Rosie,
The Ostomy nurses at CC are great! They will definitely teach you to take care and empty it. I was very nervous myself (scared actually!) and they are very patient. When you first get the pouch you have an indwelling cath for 4-6 weeks while the valve heals. Then they pull that out and you learn how to intubate. When I went up to have the indwelling taken out and learn I brought my mom so I could have moral support. The nurses watched me do it twice and since I did fine I was released. I think though, had I shown trouble they would've kept me until I was confident. You can also call CC and talk with an ostomy nurse, they are pretty good at returning phone calls if you have to leave a message.
Did I see in another post that you have an appointment in Aug? Good Luck!
--
katie

Hi Rosie,
When I had mine done they kept me hospitalized for 1 month and the catheter in for 28days (for the first 3-4 weeks it free flows allowing the pouch to heal and then slowly they clamp the tube 1/4hrs, 2/4hrs, 3/4 hrs and finally they leave it clamed...that is when they finally pull the cath out)...then when they took it out they showed me how to lube it up (you are never in too much of a hurry to use lube!) and place it in...all of my fears vanished and an incredible curiosity took over...I was facinated to watch it go in...no pain, you feel almost nothing other than a slight pressure when it passes through the valve (you are supposed to)...by the end of the day I was an expert...they tell you to empty every 4 hrs to allow your pouch to grow but since you already have one the whole thing will be a bit easier...
The only real 'problem' with the tube/intubation etc is that you need to chew your food really well so that you don't clog the tube holes (no problem, you just pull out the tube and pick out the stuff...some people use tweezers)...
What is strange compared to the j pouch is that you drink prune juice (I have learned to love prune juice!) or grape juice (wine works fine too ) to keep thing 'flowing' and nice and liquidy so that it can pour through the tube...
Once you have the knack you never want to go back
Sharon
ps. Fear not...you always have friends here to talk you through things if you have concerns or questions.

Thank you Katie and Sharon for the information and the support. It is nice to have knowledible, patient people to ask questions and share my fear with. Thank you both so much!!!!!

Do you guys still use probiotics with the K pouch? I have been using VSL 3 with the j pouch

Rosie,
I really don't use anything other than prune juice/grape juice on a regular basis although I do rotate suppliments depending on the season, what I am/am not eating at the moment and how I feel...I generally take a good women's multi, iron, b's, calcium/D, and collagene but probiotics only if I feel the need or have been on a run of anti-biotics (almost never!)...
I eat healthy when all is well and use a mixer/blender/juicer for the stuff that I can't digest like pineapple or certain stringy veggies...I get my fiber from whole grain breads/cakes and eat tons of popcorn! I limit my milk to ice cream and yoghurt or French cheeses (full of natural probiotics!...the stinkier the better ) but eat leeks, artichokes and asparagus daily (only the tips).
I love my k pouch but am careful...lettuce is limited in quantity because it can cause 'root balls' (kind of becomes a big mass that gets stuck at the end of my tube) but most other veggies other than the NO-NO list (corn, mushrooms, peas, beans...) are a daily thing.
Keep asking questions...we are here toanswer them.
Sharon

Thank you. Oh how I look forward to drinking grape juice and even coffee. Right now I have to avoid both of them because they cause everything to liquify....which will be what I will need to have with a k pouch.....oh my mouth waters just thinking about guzzling a large glass of ice cold grape juice. I think I will go pretend my gatorade is juice. ha ha lol.

I don't use probiotics. I do take a multivitamin and Vit C both chewable and Cal/Vit D chewables since balanced nutrition is a bit of a problem.
FYI I was told by my GI Dr Shen to stay away from non chewable Vitamin supplements as they can accumulate in the k-pouch 'k-pouch pharmacy' he called it!
I eat tons of dairy and drink coffee all the time, not a big fan of juice. Funny, but I eat most of the veggies on Sharon's NO list.
I eat corn, even straight off the cobb. I eat peas and all kinds of beans, not mushrooms though, only cause I don't like them. I discovered lately I tolerate broccoli slaw really well which is great since I can make a salad out of it!

Kaybird,
You must be a really great chewer, have a wonderful digestive system or have a different type of tube than I do because if I eat any corn without blending it first I spend an hour with irrigation and tweezers plucking corn ..most of the stuff that I don't eat I avoid because I am afraid that they will block the tube and pull at my valve as I remove the tube (already prolapsed that way!)...
But I do eat both steamed and raw broccoli and cauliflower but avoid cabbage due to the gas.
Sharon

Funny! I do chew it really well but I don't have amazing digestive capabilities which becomes increasingly obvious when I DON'T chew. I started out with tiny amounts of course and worked up. But I don't mix these things. I won't eat an ear of corn and a serving of baked beans, now that would be asking for trouble!