spunkylady checking in no resolution yet

[spunkylady]

Hello everyone!

I have been reading the posts everyday but avoided posting as I am still really no farther ahead - concerning my leaking situation etc.

Lisa I did get your e-mail thanks for checking up on me. Frankly I have been so frustrated I did not want to talk about this whole annoying thing.

It is interesting that the continent ddiversions section gets a lot less postings than the general one. But this is where I belong so I will post here. I read everyones posts and in your times of trouble I am saying little prayers for you all.

I went to see Dr. Herscorn in Toronto July 12th and had to stay longer to July 14th for a bunch of tests. I asked him if I should stay with the urologist I am now seeing at home and her said that was a good idea. Apparently there are not a lot of Drs. doing the continent urostomies, at least it seems pretty rae where I am from ( not a hick town either) I can not for the life of me understand why this option would not be offered to anyone who can tolerate it. Dr. Herschorn seemed a little confused as to why I was having so much difficulty getting someone here to follow up with me.

The conclusion of the expenseive visit was that my pouch is not leaking, this is a good thing.. However I do have stones that need to be removed. I know I read info from someone on here who had this procedure, will have to search it out. Also as far as the leaking is concerned it is more about another surgery I had 2 weeks before my ostomy. I had a blockage in my left iliac vein (in the abdomen) I walked around with that for about 6 weeks before an awesome lady vascular surgen fast tracked me into surgery and put in a stent, I was a stroke waiting to happen spent many days in hospital with my left leg twice as big as my right one, while they screwed around and could not figure it out. Anyway that is the story of my life with the system. Dr. Herscorn said the tumour that everyone is watching to see if it grows, could be infected and leaking out the vagina. Gee I only have this for 2 years?? he says it has already grown since I was there 2 years ago. Keep in mind it was a benign tumour that killed my right kidney, attached itself to my insides causing me to have major surgery removeing my bladder, building a neo bladder and a complete hysterechtomy

So he said on July 14th he would send letters to the appropriate Drs. They would not even let me make an appontment until they read the reports. Guess what my Urologist just got it September 1st! I am still waiting to see if the vascular surgeon received her report, called there Tuesday no reponse back.

So I really do not have any concrete answers and this is why I get frustrated and just do not want to even talk about it. I try to tell myself there are people with worse things, but this leaking is so uncomfortable as you can imagine.

The best to all of you and thanks for your thoughts.
Debi

[squid56]

Debi, I am sorry that you have had no resolution yet to the leaking. I also feel bad that your doctors are not prompt about sending medical info to the other doctors. It puts you in a bad position and at their mercy as to what you can do.I can feel your frustration. If it was me, I would be calling up and being a "squeaky wheel" to get things moving. I also have leakage problems, but mine is from my stoma due to IBS in my urinary pouch. I am able to deal with it since I know what the cause is. I do hope that soon things will get resolved for you.

[LisaB]

Wow Deb

I understand the waiting stuff. His office called me last week about a culture from the end of June!!! I hope this gets settled soon for you. There aren't any uros in Windsor either who deal with this diversion thing, at least no one I'd take a chance on.

Thinking about you.

Lisa

[LisaB]

Hey Deb.

Saw Herschorn on Mon. He found stones in my pouch too. Have to go back the end of Oct to try and fish them out. Has he taken care of yours yet?
How is everything else going?

Lisa