Update on my valve dilation.....

Lois,
It sounds like you are doing everything right and that you have a good handle on things.
I agree that you probably empty better when you take control and do it yourself...I never felt like things emptied out well with the leg bag 24/7.
Are you drinking a bit of prune or grape juice to keep thing running smoothly?
What about probiotics? They might help too.
Be careful when the tube gets stiffer, wearing it 24/7 may hurt you if you move around a lot a night...if needed you can probably change it for a more supple one, especially if you need to wear it for a lot longer.
My k pouch celebrated its 35th birthday this month and I am still thrilled with it in spite of all of the complications that I have had.
Long live our k pouches!
Stay healthy
Sharon

I am taking probiotics and use Turmeric for inflammation when needed. I do take an aspirin a day because I'm 62 years old.

I definitely get my Kock Pouch cleaned out better without a leg bag. I empty it every couple of hours. I use coffee for a thinner in the morning, works like a laxative on me. At dinner time I take a 500mg of Magnesium.

I tried making a shorter catheter the length of my valve and then a connection to connect to the left in one for emptying. My valve didn't like it, it went into spasms and bled. So I took that out and put in a 15 inch Marlen 30 Fr, all the way in. I cap it off, and tie gauze around me and tape in about 4 places around the hips to keep it at the right level. I make sure to keep changing the dressing around and under the gauze to keep my skin healthy. This way I also don't have to worry about if it's in past the end of the valve. I do have to worry about how long the catheter will stay pliable so it doesn't perforate my Kock Pouch. My last catheter got as hard as ceramic past the point of the valve....I was shocked how hard it got. I also have concerns about the material of the Marlen, I don't know what my body is absorbing from the catheter.

I feel my valve is too long and this isn't going to work. My opinion so far, I think it stretched out and thinned and that's why the bend which probably caused a stricture. I think emptying your pouch more than 2-3 times a day, like I did was in the long run after 36 years maybe a partial reason of the lengthening valve. Just my opinion. My valve is still continent, so I hate to have surgery. But I am starting to have upper GI problems with the esophagus spasming or the stomach not emptying out. Not sure yet....or I'm eating something that is irritating my stomach....down to pepperoni or my lemonade made with splenda.

I am leary of using a acid reducer due to the acid in the stomach kills bacteria. Which may lead to pouchitis, my opinion. So I am using myself as a research object.

I wish they could put in a bigger diameter catheter, that could be left in and is continent. But could be removed to unplug the holes if needed.

So this is where I am at for now. I will have to start over my 3 week leave in catheter time since I irritated the valve and had it bleeding last night with my short catheter and extension catheter project.

Will keep you updated. I love my Kock Pouch!!!!! I am an Advocate for this procedure, it is needed and wanted!!!!! I am praying the Mayo Clinic is coming here and reading this. I told them I am Jasmine in K-Korner on J-pouch.org. Tell your surgeons to come to this site. They need to see that the J-pouch has lots of trouble which I don't think they know. I was told follow ups aren't done.

Lois,
I think that thicker catheters exist, you just have to check out some of the manufacturers to see what they carry in stock and adapt them to your pouch and its needs...when I moved here (31yrs ago) I had no k pouch supplier and the hospital had nothing to give me so they cut extra holes into a rectal cath that they used for enemas...I had to smooth down the holes (I tried filing them then heating them with boiling water but in the end the plastic/silicon material required fire. I used my gas burner to heat slightly and smooth the holes)...once I started flying home regularly I went ot visit the supplier in Toronto and bought stock but also took his advice and picked up a few differnt sizes for emergency cases. I have used the prepackaged urinary caths when my valve was twisted as an emergency method to intubate...then I just followed it with my real tube once the valve was opened.
When I had valve problems and couldn't intubated we tried every distributer and found 2 interesting things...they had a really funky short valve with a baloon attached to the base. It was short and wider and you filled the baloon with water to hold it inside without needing all of the tape and string.
It would have worked if my problem had been a kink or twist but I had a peristomal hernia and the whole thing just pulled right out...nasty night.
I have learned to adapt to my needs (some very kind stoma nurses here have great imaginations!)and have even gone to hardware stores to pick things up. At one time I used a guide_wire (it cut into the stoma so I covered it with a plastic sheath, kind of like a boondogle). It replaced the indwelling tube and bag so that I could go out to work without too much difficulty and was able to follow the wire with my tube.
Because we are pretty much left on our own (expecially here in Europe) you need to be adaptable. My surgeon has subsquently learned from my mistakes (the unsheathed guidewire is a no-no)...
You may need to have an upper G.I. series done to see what is going on up there and get it straitened out...it may have nothing to do with your pouch.
Keep me posted
Sharon

Thanks Sharon, it's amazing what we come up with.

When I couldn't get my catheter in, they used a wire in Interventional x-ray, like they do for a blood vessel. I didn't see the device, I wish I would have. I know that they had a very hard time (twice) getting a catheter in me. Each time it was a different size to widen the valve. Then the dilation in a different x-ray surgical room.

It's very interesting to hear everyone's experiences with the Kock Pouch. Thanks for sharing.

Just remember we are not recommending doing anything without a doctors intervention, to all that read this.

At first, they were wondering if I had a hernia in the valve. Didn't turn out to be one. It was a stricture.

I think with my catheter all the way in, under a doctor's advice, that the catheter is more stable and stays in one place. I think this is why I don't spasm, like I do with the shorter catheter in the valve. Just my opinion.

They had to do the same thing for me, twice, in intervention radiology at Mt Sinai. Both times my valve was herniated and twisted up into the hernia (big ouch).
Here I had to go to ER twice(God bless the goodwill of the interns here...they actually listened to me and got the guidewire divice and I got to keep it!).
My greatest fear is that I one day lose consciousness and there is no one around to explain it to them in ER...and they just stick and flang and bag onto it...and then my pouch explodes!
my K pouch nightmares!
Sharon

You need a medic alert necklace or bracelet with "Has a Kock Pouch .....(along with phone number of a doctor that knows what it is and what to do).

I know what you mean, in my town they don't even know what a Kock Pouch is, until I tell them. They've never heard of it before!!!! Unreal, back when I had my Kock Pouch created....I thought for sure it would become the procedure of the future. I think they thought pouchitis was from a Kock Pouch.....well it isn't. My Kock Pouch lining looked so good they didn't even have to biopsy it this time....36 years later. Turmeric for inflammation....I swear by that stuff and probiotics.