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Hi Eva, sorry you are having the problem.  I have the indiana and cath to void.  Why not try a different catheter?  Sometimes if it is too rigid or too soft, it is tough to find the way.  You did not say what you were using-- but if the rigid scope was not getting in either, perhaps try the Rochester Medical silicone ones-- they wil even send you a free sample.  800-243-3315.  Karen

Karen,

Thank you so much for the suggestion. I use a soft Robinson 16", whereas a few years ago I was using a stiff cath. only. After drawing blood with the stiff cath., my surgeon told me I had traumatized my urethra. However, later he gave me some stiff caths. to try out. So I'm not sure that he remembered he told me to use only the soft kind. The stiff ones work moderately well, and when I have this particular problem I have used such  thinking it would "straighten" things out which they sometimes do. It's the infrequent times that NOTHING works I find so frustrating and scary.

A few years ago, I went into shock during a CAT scan and the ER room panicked because they couldn't cath. me and my doctor was on the other side of town. Everything released except for the neobladder. I was uncomfortable during this time and sweating profusely.

Do you carry medical alert information on you? I carry a letter explaining my situation, but I'm not sure anyone would look in my purse to find the letter.

I imagine my skeletal frame is changing as I'm growing older, and that complicates matters. I'm 63 now.

Again, thank you for your reply.
Eva

HI Eva,
I think position and posture when cathing does change things as well.  Try different poses... sounds like a yoga class.  I do not know why the position of your urethra should affect cathing-- it is all behaind the pubic bone for protection.  

The stiffer ones I have used are the mentor ones-- and I alternate with the silicone ones.  I tried the red rubber ones but they collapses inside like a chinese lantern and abraded the passage... so out with them!  

I have a medicalert bracelet which I never take off.  It just says I have a continent urostomy and need to be cathed through an abdominal stoma... no bedpans for me.  No one is going to look for a letter in your purse!  They have an 800# and you can register  online as well.  That must have been terrifying in the CT that time.  
Karen

Karen,

If there is a position I haven't tried I can't even imagine it. Standing on my tiptoes, rocking from side to side, lifting one leg, several knee bending postions, looking to the left, threading slowly, making sure the cath. is clear, lots or no lubrication, washing the neobladder with a dilution of aspirin...that helps, and, of course, trying to pick a time when no one is waiting for me to finish.

You have a stoma? I don't have any. In fact, I have only one long scar indicating I am different from any other woman you would meet. When I had my surgery it was relatively new on the market and I was made very, very continent. If I don't cath. every few hours the entrance to my neobladder becomes smaller...it constricts.

I used to wear a necklace from Medic Alert, however, I lost the medallion twice, and then gave up replacing it. When I did need someone to cath. me the letter was read, but there still were problems. The doctor kind of stared at me as if he simply didn't know what to do and felt sorry for me. My surgeon guessed this would happen.

Off to play my guitar. Eva

Before I let him do anything, I would get a second opinion about the constriction issue-- could be a bunch of things and their are some docs who specialize in urinary sphincter/continence issues [talk about a niche business].  Karen

Karen,

My surgery entailed giving me a valve (cecal) that did as it was supposed to making me very continent. It does constrict when I am full. I think it was my surgeon's own invention, and very new at the time it was installed in me.

I wouldn't go back to my original surgeon, if I elected to have more surgery, for several reasons, one being I have moved since the operation. So I would have to start over with a newby.

Tomorrow (Wednesday) I go for my annual checkup and will ask my new GP if there is another urologist in town that he would recommend. I need to know, if I am in serious trouble, where to turn.

This leads me to another question...I've been told I wouldn't know if cancer had returned without an exam. However, I can't help but believe there would be indications of serious problems. For instance, I know when I am infected...smell, thickness of urine, etc. Before cancer would get to the stage of my coughing constantly wouldn't I have other indications something was going seriously wrong? What are your thoughts on this?

Thanks for answering. Eva

Eva-- we all worry about recurrence-- I would suggest talking to your uro-- or another-- and asking what kinds of symptoms of recurrence to watch for.  If you are being monitored regularly-- Ct or sonogram or whatever he/she uses, it should pick things up-- but ask your doc.  Most of us who have the internal reservoir have the ikeocecal valve as the continence  mechanism, it is sort of standard in the continent diversion world.

Thanks Karen, I have a list of questions to ask my new GP Wednesday.

How long have you been cancer free from surgery? I celebrate my 12th year November 1st. Think I will go to the casino and take some risks. Eva

I am 6 years out.  Good luck at the casino.  K