Hi all,

Was hoping some experienced k-pouchers could provide some advice (and encouragement!) for my husband. He just had his j-pouch converted to a k-pouch April 22nd after suffering from pouchitis and cuffitis and all kinds of misery since takedown 2006. Surgery went well although he wound up with some infected abscesses that needed a drainage tube through his butt muscle for almost two weeks - ouch!

Anyway, he JUST removed the bag and started the intubating and is having a really hard time. He doesn't have any trouble getting it in; his problem is more with positioning on/around the toilet, getting stool on himself or the toilet, etc. He is SO discouraged, thinking he will never be able to do this outside of the home, get a job again, etc. I told him he just started and I am sure it is a matter of practice, trial and error and finding both the method, position and catheter that works best for him.

So I was hoping you all could let me know:

1) when you intubate - do you stand, kneel, sit, etc?

2) how do you avoid spilling/leaking stool?

3) do you use an extra-long catheter to ensure stool reaches the toilet (which one/what size)?

4) how do you rinse things off when in public bathrooms - spray bottle, etc.?

ANY helpful hints would be very much appreciated!

Thanks!!

Muggette,

I felt the same way as your husband at first as well. I couldn't sit and intubate without needing to shower and change underwear at first. Idiscovered that, at home, it was easier to intubate standing at the bathroom sink, emptying into one of those measuring emesis basins that they use in the hospital. It has been over two years now that Dr. Launer gave me my K pouch, and now I am intubated, emptied, washed and flushed in under 3 minutes.

When I have to empty elsewhere, I do it sitting down. It seems awkward to me, so I use a longer cath. I also take along a syringe to clean the cath out at the toilet, always making sure I fill it with water before I go into the stall. That part took a little time to get right. I carry my supplies in a small lunch box. It isn't all that conspicuous and it keeps the cath bent over enough that intubating sitting isn't as hard for me as it was.

It will take a good six months of trial and error (for me, lots of error) to find a routine that works for him. The key is to read what his body is telling him and go from there. At least, it was for me. Hopefully, others will get on and help you out.

Best of luck,

Les

Hi
I can tell you what Chris does:
He kneels, keeps a towel folded for comfort, keeps the syringe and water receptacle on the tub edge.
He splashes and drips down the bowl but no big deal, that's
what paper towels are for.
You can try floating some t paper to ease the splash effect.
He uses a 30 fr catheter and even cuts it.
Intubating takes time to get the feel of it. It is frustrating at first.
He goes to school and dates and works and never has a problem in a public bathroom.
He carries his supplies in a small nylon bag he got from convatec when he had the ostomy.
He also has a leg luggah if he wears pants and needs hand fee, the large size holds everything.
www.legluggah.com
Please tell him he will be happy when he gets adjusted. Chris is and he's 21.
His j pouch was removed too as was Les W.
I also purchased a case of the small sterile water bottles they use at the hospital. He can refill them and take them in the bathroom.
I also purchased a smaller syringe.
He uses a small ampatch.
Most days just a curity nursing pad. They are perfect and tuck inside his boxers.
I buy them by the case also.
I will PM you my e mail.

hi...this is dmarie...i'm located in newbury park, (thousand oaks area)...i had my revision surgery for my k-pouch in la jolla by dr. launer...i was leaking and needed a valve repair...when i intubate i always sit down..i use a 6 inch catheter (always have..met a guy at a ostomy convention..he kept it in his pocket)..i drape toilet paper from the stoma to the water in the bowl...then i just empty onto the paper and it goes into the toilet without splashing..yes..i sometimes get poop on me...that just happens...at home you can clean off easily...when i'm out and about i take some individual packed cleansing wipes..just clean up in toilet stall...flush...then i flush again and hold onto my tube over the bowl and quick rinse...then wrap in toilet paper and put in ziplock bag...wash up at the sink...when you get home you can wash your tube thoroughly..sometimes i take an old tube with me and just wrap it up and throw it away in the trash...i know people will think it "horrible" to rinse in the toilet...i have had this pouch since 1985..with small children...i'm never sick..supposedly more germs on the handle of the toilet then anywhere else...my nurse friend thinks i'm crazy...but if she only knew how many disgusting bathrooms i had been in when i had uc...i think it takes time getting quick at it...if u r ever in the area look me up..best of luck....

It does take time to adjust to "new plumbing".
At best it is awkward at the beginning. You almost wish you had at least one more hand
Be patient. Let your body be your guide. Relax and take a deep breath when your catheter meets resistance.

I've been doing this for almost 30 years and I still get splashed occasionally. I don't think there's a way around it. Stuff happens!

Everybody has their own technique and you will find yours.
I have always sat when I empty. I use a Marlen 30 Fr. which is fairly long and I like that.The shorter the catheter the more splash. Being female I have the advantage of carrying a handbag. In it I carry a small cosmetic bag with a catheter, a collapsible cup, 30cc piston syringe (these 3 in a ziploc bag because they are wet), small tube of lube, and extra coverings. When I am out, I fill the cup at the sink before I go into the stall. OR, if I am carrying bottled water, I just use that. I do my business. I always leave enough water so that when I am done I can squirt it through the catheter to rinse it before putting it away.
I wash thoroughly at home.

When all this was new, I cared what people thought when I was out. Now I don't

Hopefully, from all of us, you have found something useful.

hi...have had my kpouch for 28 yrs...

1) I just sit and quickly insert while holding the cathetar down into the toilet. If I'm tire, or if I have diareah - I have to be very fast or I have accidently gotten stool everywhere. 2) what do you mean by leaking?
3) Medina french 30.
4) I get much to embarrassed in public restrooms so I simply remove my cathetar and wrap it in a toilet seat cover, then put it into a zip lock bag. I rinse when I get home.

He'll do better in time....

Thank you SO much everyone for your advice and encouragement. We ordered the 30 french that everyone seems to suggest; I think that will help him as it is much longer than his current cath. I am hoping by reading your posts he will be less discouraged, knowing it is just a matter of time, getting used to it, finding what works for him, etc. I really do appreciate all of your feedback. We both say that getting comments and suggestions from people like you - who have actually been through this - is much more helpful than the docs.

Glad you all seem to be doing well and adjusting!

Hi all,
I know that it is confusing in the begining but he has to find his comfort zone and and positon...a lot depends on body shape and where the stoma is situated on the abdomen. When mine was in the original position around where your apendix should be, I found that I splashed a lot and so I floated toilet paper on the water to absorb the splash, I also use paper on my underwear to prevent accidental spillage on it and to act as a shelf for various objects ( pads, precut paper, tube, water bottle (no my undrewear is NOT that big!).
I sit. MY stoma is now lower and so I splash less but big belly's can get in the way and be akward at times so intubating standing or kneeling helps with those. I find that a nipple tip water bottle is my best friend, fill it at the sink and use it to irrigate and to wash up yourself and the tube...the bigger the bottle the more chance to stay clean and fresh...and yes, long before water bottles and even now when there is no real choice, I have used the toilet bowl for fresh water.... I know but sometime you have no choice.
Ziplock is my second best friend.
I find that with an empty bladder it is easier to intubate (now, the only way for me) so sitting is obligatory for me) shape and dimention of the tube is also important but mostly he must experiment until he finds his own 'style'!
Lots of luck for the future and mostly take heart, it will soon be as easy as pie...and a great sense of humour helps too
sharon

My solution is different.
When my doctor removed my catheter after surgery he taught me how to intubate. For the demonstration he had me use a hospital type urinal. When I went home I tried to use the toilet, but it was a mess. I then tried to use a large plastic cup and intubated while standing up. This worked perfectly, and I have used this method for over 14 years. I now use a medium sized cup that I got at a casino. It was designed to hold slot tokens or coins. I actually got a large supply of them before most casino's went to a voucher system. Any type of container will do. I can use mine for many months by rinsing it out well after each use. I can replace my cup when I replace the catheter.
I hope that this helps solve your problem
Larry