Well, bad news........2 inserts and I'm bleeding already and it isn't going to work out. So I have contacted Mayo Clinic and told them I need a valve fix. So I'll wait for their answer. Or I have to eat no fruits or vegetables.....which would be a very unhealthy lifestyle choice. I am very disappointed and overwhelmed at the moment.

I am so sorry Lois,
But bleeding does not mean that there is a problem especially if you had the cath indewelling for long periods of time (that was your case)...the mucosa becomes rather fragile and can bleed when irritated.
I bleed regularly and at almost every intubation even with lube.
I do not bleed gobs of blood just a tiny stain or 2 most times with occasionaly a few drops more.
It no longer scares me to death. I accept that it can be from the granulation at the entry of the stoma, from the cath rubbing against the mucosa or when I 'hit a wall' in there...in which case I bleed more but never hemorages..
The only time that I had serious bleeding was when my valve was twisted (my pouch fell off of the wall and twisted up into the hernia making intubation nearly impossible)...and I fought for hours trying to intubate. It took me to the ER and intervention radiology to get it back in...
Is the tube going in correctly? Can you easily find the passage? If you are still continent then there is hope that they do not need to rebuild the valve.
Keeping my fingers crossed for you.
Sharon

I have blood running out of the catheter. So far it eventually stops, it's not just a little irritation type bleeding. I would have to worry about inflammation with the degree the bleeding is. No it doesn't just go in, I have to work to find it. I think there is still a bend, but that bend may be why I have such a continent valve also. So it's a touchy situation. I do realize since it is still continent, I am lucky. My valve is longer than it should be, so it's as if it has stretched out....hence the bend.

I know I have to let it calm down to get the inflammation down from trying to get the catheter in and the bleeding I had. This is beyond normal bleeding from irritation of inserting the catheter. So once again, I will probably end up with more scar tissue. So it needs to relax for now. I won't totally panic until the bleeding doesn't stop, so far it does. But it is more blood than there should be for no inflammation to occur.

This is how it all started, bleeding and inflamed from trying to get the catheter in. I just have to figure out how much blood and trouble getting it in....is too much and will lead to a 90 degree bend again and scarred so the catheter won't pass. I am having cramps and back pain with this so that isn't good. A very fine line here.....

I'm just worried I won't be able to get it in. I have to rely on other people for travel and a car.....so that doesn't help with this situation. I can't just up and go to the Mayo when I need too. My car won't get me there....very upsetting.

Oh Lois,
I am heartbroken for you...this is so unfair.
For the inflamation...could you try chilling (not freezing) your cath...and then putting it in...To reduce the inflamation???? Just a guess here. Or irrigating while the tube is in...with very cold water. (or an ice pack on the spot over your stoma?)
I think that you are stuck between a rock and a hard place...Searching for the entrance of your pouch through your valve...without actually hitting the wall along the way.
If you use a sillicon tube it is too soft to navigate the twists and a harder cath is too rough on the delicate tissues...
Can you aim north? Can you imagine your pouch upside-down and you trying to intubate pointing completely upwards?
Are you using a strait or curved cath? I used a curved one for over 30yrs but now need a strait one because of the direction that I need to aim (or it just shoots the stuff all over the place)....
Here's hoping for miracles
Sharon

I have the catheter in, thank heavens, I slept through Tuesday....fever, sweats, migraine....I emptied once during this time. I woke up and it's Wednesday 1:30 a.m.. Shocked! I woke up hot and now cooled down. So do I have a virus or what?

I use a Marlen 30 Fr. straight, I'm beginning to think wearing my catheter all the time isn't such a bad idea. I'm going to drink some tea and figure out what is going on. If I don't feel better, I'll have to go for an x-ray. Although, I had a lot in my pouch when I emptied it.

Thanks Sharon, I'm so glad you are on this site! Hugs!

Lois,
Please do not forget to drink!
You slept a lot and the mirgrain may be because with the fever and sweats you have dehydrated...please be very careful (although I am thrilled that you slept so well!).
Keep me posted and take good care (and yes, there were times that the indwelling cath was more a Godsend than a pain.
Sharon

I hope your fever and sweats are just from a virus. Keep an eye on it though. With all these traumatic intubations, sepsis is not an impossibility.

Jan

Jan....I'm feeling better right now. I was thinking the same thing....possible perforation. I worry about that with leaving my catheter in 24/7 too. I will keep an eye open for that.

Even without a perforation, you can introduce bacteria into the bloodstream if you are breaking into a vein or small artery. Your immune system should be able to handle a small invasion, but repeated exposures can lead to a weakening of your reserves.

But even a virus can become serious business in short order. I had a close call last year. Good thing my hubby insisted I go to the ER. I was content to shiver in my bed. Smart nurse becomes dumb nurse when delirium sets in!

Jan

Thanks Jan....Then I think I will have to have this fixed. I will be more careful and if I can't get this to go in within bleeding a lot, I will have to let Mayo know. It seems to bleed a lot very easily. I'm waiting for them to answer me, I don't think another dilation will work. The valve seems to stretched out to find the valve without irritating it.

I may wait awhile and try the upward entry, like Sharon mentioned. I'll see what Mayo says. I'm still continent so I hate to have a redo on the valve and have one that leaks. So I'm not sure about all this.

I may just leave the catheter in all the time, if I can take it out to clean it once a week or clean it out if the holes get clogged. I hate change.....and this isn't cheap with all these runs to the Mayo. I have to decide on something and soon.

Sounds like a plan. If bleeding is brisk every time you intubate you are probably breaking open the same healing spot. You probably need to leave the catheter in to gravity drain for 3-6 weeks for healing to be solid enough.

Hope Mayo gets back to you soon. This sounds intolerable.

Jan

Thanks Jan.....I'm so glad you are on this site. You help so many people! Thank You!