I had UofM (young Drs) in Ann Arbor wanting to do a Urostomy on me back 10+ years ago, had me so scared about surgery, off weeks 4-6, then I called my SCI Dr Yarconi in Chicago-RIC, he strongly advised that was radical surgery, should only be done if absolutely necessary, I had indwelling from 89-02, had supra done, been good all these years, did have another quad friend had Urostomy, had lot of infections and even talk of a re-do, he's many years gone now. Bottom line with me was like my dr said, only if you have to have it, he did also say that they believe someday we hope all sci pats will walk again, so they don't believe in drastically changing things far from "the norm".
Matt Wermer C-4 Quad Incomplete 49 & Still going strong! ----- Original Message ----- From: Dan To: [email protected] Sent: Monday, May 17, 2010 7:46 PM Subject: Re: [QUAD-L] My Dilemma Hi Naomi, I'm a little confused, having an indwelling catheter for five years isn't that long. in any event, I certainly would get a second and third opinion before undergoing such drastic surgery. And even if your bladder has shrunk does it really matter? As for your eroding urethra, I'm no doctor, but it seems there should be some easier way to fix it. Dan At 07:31 PM 5/17/2010, [email protected] said something that elicited my response: I am a C-4 quad with an indwelling Foley catheter. My urologist says that my urethra is eroding, and suggests I have a procedure called a urostomy. He performed a procedure called Urodynamic, which measures the amount of urine your bladder can hold. Mine is holding less than an ounce of urine. So now he wants to remove my bladder, and make me a new one using part of my small intestine. During this procedure, both ureters are relocated, a new bladder is made, and urine as directed from the body through a stoma in the abdomen, which connects to a bag that adheres to the skin. I am going to the hospital on Tuesday to have an MRI, to make sure that it's safe for me to have this procedure because I also have Crohn's disease and disturbing my small intestine, may cause my Crohn's to flareup (which is a very terrible thing).<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /> My dilemma is this: I have to choose between having this very invasive surgery, and all of that may come after it including infection from many sources, including the new bladder, ureter relocation, the stoma, and skin irritation from the adhesive for the bag, and not to mention the Crohn's flareup Or. I can wear incontinent briefs which I don't have anyone to change them, because there's just me and my 80 year old mother, living together. She won't be able to change them throughout the day. I have an aide comes in the morning and gives me a bed bath and get me in my wheelchair. The rest of the day, there's just me and my mom here until bedtime (around 9:00 PM) when my nighttime aide comes to put me to bed. My catheter bag is usually not emptied from morning to night. My mom cannot handle me to change briefs, and if they're left on, I would have all types of sores. Does anyone on this list have a urostomy? If so, how is it working for you? I would love to hear what others have to say regarding my dilemma. Naomi. C-4 quadriplegic due to Transverse Myelitis since July 2, 2005 Have a Blessed Day, Naomi
