Finally free of the dreaded bag, I am now intubating every 2-3 hours. My stoma is sore and has even been bleeding a little. Is this normal? It makes me nervous that something is wrong or is this just part of the growing pains on the road to a happy life with the k pouch?

Also I already had my first public bathroom trauma, where I used the bathroom in a Dunkin Donuts and came out 10 minutes later to the whole coffee shop staring at me. Apparently as my husband later told me they thought I was drunk and throwing up in the toliet. Must have been the splashing sounds of the K pouch emptying into the toliet???? So weird!

Hi Rosie,
Congratulations on your freedom from the dreaded bag!
Yes, it is normal for your stoma to bleed a bit, just a few drops now and then that get mixed up with the mucus and makes a pink spot on your stoma cover..you will probable granulate occasionally (the tube irritates the nice pink tissue that makes up your stoma (intestine) and as you intubate and pull things out you make micro tears in it...that causes bleeding/healing/scaring/bleeding that creates these tiny little bumps that can be whitish, kind of look like miniscule pimples that bleed...not dangerous at all, just uncomfortable sometimes...the doc just runs a cauttery stick over them and burns it...no more pain or bleeding)
As for the irritation, use stoma powder, keep things extra clean and dry (you may want to keep a packet of baby wipes around and wipe your stoma with them each time for the first while...I used to use talc on my stoma before I discovered stoma powder)...you may also need some sort of hydracort cream or ointment on the skin around it to help with the irritation...I almost never use it anymore except after reallllly spicey foods or in the summer when it is really hot and humid out and I feel like my stoma has diaper rash )
Congratulations on your Doughnut shop exploit! You are a champ! Wonderful...I would have walked out, hooked my thumb in my belt hoops, burped like a trucker and ordered a double on the rocks!
They are just jealous that we can now poop standing up! Yup, in the case of the filthy truck-stop toilet you can do it standing!
Enjoy your new pouch and start having a life again...
Sharon

Hi Rosie,

I've had my Kock Pouch for quite a few years now and have always been sitting directly on the toilet seat when intubating, not standing up. The contents then have a shorter distance to go before hitting the water. I've never noticed any noise while I am emptying my pouch this way. Congratulations on your new pouch!!

- Dixie

Hi Dixie,
HOw are you doing now? How is the valve behaving? I also intubate sitting on the seat but have on rare occasions, when the public toilet was realllly grungy, had to do it standing...just throw a bunch of paper on the water to absorb the noise and splashing, aim and fire.
Much better to do it that way than to sit on filth...as for the sound, when I have too much gas I do the same thing, throw paper on the water first to keep down the noise level.
Sharon

Hi Sharon,

So far I'm doing just great. Had an appt with Dr. Cohen on Thursday. The stitches were taken out & he removed the drainage tube. My stoma looks different this time. The tube goes into the side, not directly into the centre of my stoma & there is an area on this side that isn't quite closed yet. Dr. Cohen said not to worry - in time it will close. He had me intubate right there in his office & the tube went in very easily. I'm having no problems at all putting it in & there is no leakage. Gave me the go-ahead to go home. I was expecting to have the tube in for another week, so that was a very pleasant surprise. I'm booked to go home this coming Tuesday. Will be very careful this time to do no heavy lifting, housework, etc. for a very long time. So happy!! - Dixie

Sharon, Thanks I never thought of it that way. Of course they would be jealous of us pooping standing up and avoiding those nasty toilet seats. (Although I don't enjoy looking at them up close while emptying either!) I guess I will have my moments of misunderstanding by others, but I am not going to start worrying about what they think now. I have already made it through the UC days, the bag days and of course the incontinent j pouch days.....I am slowly growing to love my K and I won't let anyone make me feel embarrassed about it!

Dixie, Thanks for the congrats, it is always good to hear from other k pouchers!

Dixie, Glad to hear things are going well for you. Did you have your valve re-done? Do you mind if I ask what happened?

Rosie

Hi Rosie,
I got my ileostomy of 29 years converted to a Kock pouch in 2004. Went 4 wonderful years with no problems, then for some reason the pouch fell off the wall. Dr. Cohen attempted to repair it in 2009 & 2010, but it still leaked, so he made me a new second Kock pouch in February of 2011. Valve still leaked & I also had a fistula when he operated on me just a few weeks ago on November 24th. I'm not sure exactly why I have to intubate into the side of the valve, but he told me immediately after surgery that this would be the case & he had no other choice because he used the same location as in all of my other surgeries. I knew going into this that sometimes a number of surgeries are needed to get it just right, so I am really hoping that it works perfectly this time. Some people have their initial surgery & have no problems at all. When it works, it works wonderfully. Hopefully both of us will have many carefree years with our Kock pouches!!

Dixie,
Mine has to be intubated to the left side too...don't know why but I have a mobile stoma that changes directions depending on how full it is and how much pressure that my bladder puts on it...not a problem other than the tube that tends to splash the wrong direction...
You might wish to experiment on strait and curved tubes...I used to use only curved and now I find that the strait works best.
Be kind to your new stoma...please.
Hugs
Sharon