Glenn Henry, thank you for replying to my question. I really appreciate you dissecting my e-mail and answering in portions. That helped me a great deal. I have decided not to have the surgery. It is too invasive for me. As of the present. I am not having any major health issues, and I would like to keep it that way. I feel that, if I have this surgery. I'll just have all types of problems afterwards. It's not like it's reversible, and I can just change it back. if I start having a problem.
Forty-four years with an indwelling catheter is a long time. That's the longest I've ever heard of anyone keeping a catheter. I'm sure you must have been devastated, when the doctor told you, you had cancer. Thank God for His interventions. I am so glad that you did not have cancer, and that you decided to get a second opinion. If I was still thinking about having the surgery, I would have gotten a second opinion, also. Thanks again for replying. Glenn Henry, thank you for replying to my question. I really appreciate you dissecting my e-mail and answering in portions. That helped me a great deal. I have decided not to have the surgery. It is too invasive for me. As of the present. I am not having any major health issues, and I would like to keep it that way. I feel that, if I have this surgery. I'll just have all types of problems afterwards. It's not like it's reversible, and I can just change it back. if I start having a problem. Forty-four years with an indwelling catheter is a long time. That's the longest I've ever heard of anyone keeping a catheter. I'm sure you must have been devastated, when the doctor told you, you had cancer. Thank God for His interventions. I am so glad that you did not have cancer, and that you decided to get a second opinion. If I was still thinking about having the surgery, I would have gotten a second opinion, also. Thanks again for replying. Naomi. C-4 quad due to Transverse Myelitis since July 2, 2005 -----Original Message----- From: gah17...@aol.com To: ladyno...@aol.com; quad-list@eskimo.com Sent: Wed, Jun 2, 2010 2:44 pm Subject: Re: [QUAD-L] My Dilemma In a message dated 5/17/2010 6:31:56 P.M. Central Daylight Time, ladyno...@aol.com writes: I am a C-4 quad with an indwelling Foley catheter. I have had an indwelling catheter for 44 years. In the 1960s it was the only way to go. I am a male, and my urethra has eroded severely. My urologist says that my urethra is eroding, and suggests I have a procedure called a urostomy. . I would do a lot of research before I make any decisions. Five years ago I went to a urologist, he was smart and cocky and told me that he knew that he would find tumors and bladder cancer. People just don't live 47 years with out big problems. Well, needless to say after he examined me one of the areas biopsied came back "low malignancy potential" and he informed me that I had cancer. We were scared, but God intervened and I feel my life was saved. He wanted me to have a urostomy and my bladder was to be removed. The next day I got very ill, he wanted to speed things along, but I felt that my symptoms were that of AD. He said there was no way and I immediately started to see red flags. I called for a second opinion, the urologist said there was no hurry and that I should go to John Hopkins urology department. That is exactly what I did. After meeting with the number two man in the department, he recommended viewing the biopsy slides and we were to return in three weeks. I returned and the first thing he said is "I have good news, you do not have cancer". He saw no reason for me to not use the catheter. 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.. Mine holds about the same. 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). . One Big issue is UTI's and with this procedure name may be more prevalent. 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. I also had problems getting wet when I went to the hospital. Since I has gone to using 2 ditropan 5mg each day morning and evening, and started to take two tablets in the morning, two midday and two at night a day or two before a cath change and for two or three days after the change. Today I am dry 90% of the time. Which I don't have anyone to change them, because there's just me and my 80 year old mother, living together. . sometime life sucks! 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. . I usually have someone around to empty my bag, but you may want to look into a leg bag emptying system if possible. My mom cannot handle me to change briefs, and if they're left on, I would have all types of sores. . at the least I would try the double ditropan if the doctor OKs it. 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. Glenn Henry
