Hopefully a Happy New Year Eric,
Like I said, if you are having problems like this you should have that tube taped in because every time that you intubate you are damaging it a bit more and at the moment it sounds like it is repairable...or at least partially functional...keeping it in will allow it to scar in and straiten out if it is mildly twisted but if you keep forcing it open then you are hurting it and may end up unable to put that tube in at all...
So be a good patient, tape the tube in and stay nice and good until you see Dr C again...
Hugs
Sharon

I agree with Sharon. Eric you need to put your catheter in and leave it in for at least 21 days to scar it into place if it is even possible. Keep it in 24/7, I've done this myself and for me it works. It's worth a try, things are not right with your valve so do this. You end up scaring it into proper position and may not need anything done or very little done to correct it. Whenever I have an irritated valve or entry way to the valve; or have trouble inserting my catheter; I do this. Sharon's right, you may end up not being able to get the catheter in and you may be doing further damage! I use a strip of gauze to tie around me and tie it to the catheter to keep the catheter in place so it doesn't push out on it's own. You can tape the gauze around you at the level you need at the position of the stoma (about 4 strips of tape around you to keep it level with the stoma).....I've done this many times over my 34 years. I was told to do this by the Mayo Clinic, when I first had it done for problems with the valve and insertion of the catheter to scar the valve in place....they said 21 days for scar tissue to take hold. When I wore my catheter I wore a soft one...I wouldn't use the Medena it's to hard to bent; use a softer more bendable one so that you can bend the catheter and tuck it under the gauze belt....like a U shape. I use a golf tee or an eye drop cap to block the catheter end and then remove the cap to empty the pouch and I also irrigate every time I would empty it to make sure the holes aren't plugged.

Thanks Sharon,

The only reason I don't use the perm cath is I hate lugging around a bag of poop everywhere I go. My biggest issue is morning leakage, so I'm using the bag at night until I can see Zane, but during the day, I just empty my pouch every 2 hours to ensure nothing major leaks out, but either way I seem to be producing a lot of mucus, with more blood then usual, that's a mystery, even weirder, some days it's perfectly normal. During our little 4 day trip to Washington for Christmas, I had no problems (thank god, it was a long drive!), I just don't get it!

Ps - hi Lois sweetheart, just noticed your post, thanks! I'll let you all know how it goes, fingers crossed!

Eric: I had a tube in for 3 months straight waiting for a needed procedure. At first I just used a clamp like you use to keep a large pile of papers together. Then I used a plug for the end of the tube that I taped in to be safe. I never used a bag and I even went to my club to workout most days. Good Luck

I am going to support the advice given to you. Consider using the bag only at night. I've also "plugged up". I used a binder clip to close the end of the catheter, and the I skillfully hid it in my clothes. Because you are having trouble with leakage, I would recommend you emptying often if (and you should) do this.
Good luck.

Sounds like a good idea, think ill try that, I don't mind leaving the cath in, I just hate the bag, think I'll clamp it, thanks guys!!!

Yes I agree. On the outside of my valve it is covered in ulcers due to problems inserting catheter. I was not aware of this until a more recent examination of reservoir. Reservoir 100% perfect after just under 40 years.
Best wishes for 2013 to everyone.

I used a clamp until it didn't work right and just added weight. I use these and they rock!

It is a plug for the catheter.

https://www.edgepark.com/shopcatalog/item/570414l