Intervention x-ray.....

Hi Lois,
Ok, I have the wire (the crazy people at the hospital here were planning to throw it out! so I kept it!!!)But you do not need to have that wire...it is a $150 wire that has the whole gilliotine thingy on the end of it (I assume to take biopsies or remove things like polyps)...I was given something else by the stoma nurse that works pretty well and is cheap and easy. It is a 1 time urinary self catheter, pre-lubified too! They come in skinny foil packets and are the right length and stiffness to be able to navigate the twists and turns of our valves without hurting us.
That makes it easy to navigate the twisties and elbows of our valves....My valve's geography is upwards and inwards meaning it aims up to the bellybutton (probably because it is "down" off the wall and has to go upward to get into the pouch).
So try that Lois, it is safer than any wire and less likely to slit your valve open like a wire can.
If it doesn't work I will ask my best friend's hubby (he is my go-to-guy for McGiver type fix-it solutions for ridiculous problems...he is a Veterinary surgeon so he makes me bark once before dispensing any advice!)
Take care and be safe
Sharon

Thanks Sharon, I will have to find one and keep it in my arsonal. We Kock Pouchers have to use what ever is safe and works. Thanks!!!! Be Well!!!

I keep one in each kit bag so that in case of an emergency I am good to go.
Someone on this site once suggested that we walk around a hardware store to find possible solutions for our rather unusual problems...not that things would be surgical grade or sterile but they could give us some ideas...Tubing, hook up stuff etc...we really do need to be k pouch McGivers!
Stay safe and healthy
Sharon

I've been thinking of that actually. You never know what you'll find that could come in handy. I have used a wooden dowel in the end of my catheter as a plug, I now use the cap from an eye dropper....they work great.

I've made an ostomy plate for holding an ostomy bag into, a "catheter with plug inserted" holder. I come up with all sorts of ideas. I haven't tried it yet, I just glued it together so I can put my gauze under it and glued a water bottle cap in the middle to hold my catheter with cap in place. Now to see if it works, I'm trying to get away from tape. This will be washable too. I don't know if the super glue will hold yet. Yes, I'm a Kock Pouch McGiver myself.

I've also looked at different gauge coated wires for electrical stuff. I would have to sterilize it and coat the ends, but it may work for those times I can't get a catheter in. So far just checking it out on-line. Not sure what gauge would work. Not to leave in, just to use to get a catheter in....somehow, put it inside the catheter or run the catheter along side it. Just brain storming here. Alcohol will work to sterilize it, after a good soap and water washing. So far, just in the thought stage.

For the face plate, I used a potato peeler to smooth out the top and bottom so it sits flat without a rim. Yes, a potato peeler....LOL. It worked like a charm. Then I super glued a round piece of a plastic cover to a carton I cut out to put on the face plate so it doesn't have a hole (where the ostomy bag would have gone through). Then I super glued the bottle cap, that the eye drop cap fits right in perfectly. LOL If this works I'll be very happy. Right now I use gauze and tape around my hips. The faceplate has hooks for a belt to put around the hips. It'll work for me!

Let's just rename you Mc Giverette!
In Toronto they use a faceplate/flange with the hooks on the sides for the belt and then pull the tube through the rubber center of the faceplate...They then suture the tube onto the flange so that there is no tape at all. It holds quite well and you can pull it a ways away from the skin to change the gauze.
I wore it for a month each time...you need to wash the belt and change the flange every so often or the center gets hard and the tube slips through.)
I still like my colloidal patch. I use 2 layers. 1 I tape onto the skin (it forms a protective barrier and helps to heal the skin) to the right side of the stoma. I then put the tube in, tape it down onto the colloidal patch with another 2nd piece and leave a space on one side for the gauze.
This way my tube is facing right and downwards. I plug the end with a syringe stopper (perfect size!) and tape it down.
I was able to survive a couple of months between surgeries this way..Even taking public transportation to downtown every day in crowded trains. No one knew and I never leaked (thank goodness!).
I would be really, really careful about those wires, even coated ones. I used them. I took a lot of risks and could have honestly done myself harm. Our tissues are super delicate and can rip so easily or scar and build adhesions. So be very, very careful...not to mention the dangers of infection.
Keep up the Mc Giverisms...
Sharon

Good point Sharon, I'll stick to urinary catheters for the hard to get in days.

Right now, I'm afraid to take my catheter out to start the every 2 hour empty and wear a leg bag at night. I have made so many trips to Mayo Clinic already, it's expensive to go and stay there again and again. So I need to pay off the bills I already have. But I am prolonging another dilation if needed or valve reconstruction. With winter coming, I don't want to have to go then. So I don't know, what I'm going to do yet.

I was given a urinary catheter at one of my ER room visits. I will have to take a look at that. Right now I take my catheter out about once a week to clean it really good and to check to see how pliable it still is. If it is starting to harden, I will have to put a new one in so it doesn't perforate my pouch.

I sure wish they would come up with a valve that worked without worrying about problems. After 36 years with my original one that Dr. Beahrs did.....who would have ever thought this wouldn't be the main operation for UC. I thought it would be done everywhere. Which it should be, they need to keep perfecting the valve. The valve Dr. Beahrs did....was a keeper!

Too bad they couldn't have, a leave in catheter that you cap off and then just hook it up to another catheter to empty. The catheter would have to have a valve at the top to open and close so you could hook it up without output coming out before you hooked it up to the other catheter to empty.

I also wondered why they couldn't use a stent in stricture and bend problems in the valve. I suppose rejection would be an issue.

I have my homemade faceplate with catheter holder on with belt. I have washable material under the faceplate to absorb mucous (trying to save money). So far so good, I think I will have to use the gauze at night to tie the catheter in place. I don't know if it will stay in place while sleeping. Or I'll have to come up with something more for my faceplate so it ties it in place. Or wear something tight enough to hold it in place because my catheter will come out if not held in place by something. It's like my body pushes it out.