I had emergency Interventional Radiology surgery on October 23 to insert a catheter, they could only get in a 28 Fr with tapered end. My catheter had come out and I couldn't get it back in.....I tried for 3 hours with no luck. So I had to go back to Mayo. One thing I did find out was UW Madison wouldn't take me, the Mayo even called them so I wouldn't have to travel so far. So now I have to let it settle down and rest before my next move. The doctor said, the stricture was very tight and he had a lot of trouble inserting a catheter, he was afraid he would have to put a 20 Fr. in and I said no, bigger. I have pain and spasming. I had to take pain meds for the insert, it was painful. Mayo got me in right away, the minute I arrived. So I had to give them my Kock Pouch speech......Advocate at all times!
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I am so sorry Lois,
This stinks!
I think that we should all carry a card with a picture of our pouch from the inside out so that they know what they are dealing with.
Stay flat, do not over do it and let that poor valve rest a bit...no heavy lifting, pushing or pull stuff around (no, this is not the time to hang those christmas decoration or paint the ceiling)...popcicles, ice deserts, soups...keep it light and easy.
A nice hot bath would be in order too...relax it all and add a hot water bottle to that poor tummy.
Hang in there girl, I am rooting for you
Sharon
This stinks!
I think that we should all carry a card with a picture of our pouch from the inside out so that they know what they are dealing with.
Stay flat, do not over do it and let that poor valve rest a bit...no heavy lifting, pushing or pull stuff around (no, this is not the time to hang those christmas decoration or paint the ceiling)...popcicles, ice deserts, soups...keep it light and easy.
A nice hot bath would be in order too...relax it all and add a hot water bottle to that poor tummy.
Hang in there girl, I am rooting for you
Sharon
Thanks Sharon.....it has to get better eventually. I had a problem free Kock Pouch for 36 years....oh how lucky I was. I'm still an advocate for the Kock Pouch. I agreed to trying the dialation, with a valve that still doesn't leak, I was hoping it could be saved.
The catheter that was inserted in Interventional Radiology: is a 28 Fr BARD Urethral Catheter, Ref #056128. It's Red Latex Radiopaque, it has 2 holes, smaller than my 30 Fr Marlen Catheter. It is a stiffer catheter with a tapered end.
I thought I would mention it on here, in case anyone is having trouble with insertion and wants to have one of these in their supplies, just in case.
I have a stricture right before the valve. So I will see what the Surgeon wants to try next after the irritation and inflammation are down and I have recovered.
I thought I would mention it on here, in case anyone is having trouble with insertion and wants to have one of these in their supplies, just in case.
I have a stricture right before the valve. So I will see what the Surgeon wants to try next after the irritation and inflammation are down and I have recovered.
Yes, very fortunate. You definitely beat the odds! Fingers crossed this does not turn into a major valve revision. But, even if it does, you still had a super great run with your current valve. You should be proud!
Jan
Jan
Yes, I have been so lucky with my Kock Pouch. I have been very blessed indeed.
Since my valve doesn't leak, I'm really thinking I will probably try another dilation if needed.
This catheter I have in now will definitely scar with a good opening because of the stiffer catheter. So it's a wait and see.
I am still so for the Kock Pouch! I wish they would come up with a valve that didn't have issues. They need to take a good look at the valve I had made by Dr. Beahrs, that was quite the valve.
Everytime I'm at the Mayo Clinic, they ask me if I have any questions......Hehehehehe, I say yes, "When are you going to start doing the Kock Pouch again?" I think they've all heard of me by now.....LOL. I have shown what this Kock Pouch means to me, and so many others!
I also noticed there is a 30 Fr. Red Latex Catheter too. All it needs is bigger holes and it would be an outstanding catheter for everyday use. Thinking all the time for better catheters. Especially if you have trouble getting the catheter to go through the valve, like me with my stricture.
I still love my Kock Pouch!!!!! Everytime I go to Mayo, I use it, for "Advocate" reasons too! I also can message him, Dr. Dozois, the surgeon.
Since my valve doesn't leak, I'm really thinking I will probably try another dilation if needed.
This catheter I have in now will definitely scar with a good opening because of the stiffer catheter. So it's a wait and see.
I am still so for the Kock Pouch! I wish they would come up with a valve that didn't have issues. They need to take a good look at the valve I had made by Dr. Beahrs, that was quite the valve.
Everytime I'm at the Mayo Clinic, they ask me if I have any questions......Hehehehehe, I say yes, "When are you going to start doing the Kock Pouch again?" I think they've all heard of me by now.....LOL. I have shown what this Kock Pouch means to me, and so many others!
I also noticed there is a 30 Fr. Red Latex Catheter too. All it needs is bigger holes and it would be an outstanding catheter for everyday use. Thinking all the time for better catheters. Especially if you have trouble getting the catheter to go through the valve, like me with my stricture.
I still love my Kock Pouch!!!!! Everytime I go to Mayo, I use it, for "Advocate" reasons too! I also can message him, Dr. Dozois, the surgeon.