I was advised to start a new discussion since my first communication was buried in an old discussion of what type of bladder diversion to choose. I catheterized myself for 2 years before I learned that I had an adenoma of a diverticulum of the urethra. It was removed and I had chemo, radiation and bradyradiation. Lived with a suprapubic and foley urethral catheter for a year. Eventually bradyradiation, wires containing radioactive source implanted for 3 days in urethra to really give a zap, caused the urethra and surrounding tissues to break down so now have no urethra although urine leaks out through the tissue. Suprapubic catheter that as placed was too small and now is blocked completely. Now choices are Indiana, external bag or larger suprapubic catheter.
To complicate things, recent colonoscopy should active polyp (not cancer, at this point) ande will discuss with MD next week what should be done.
The worst part of everything is waiting, waiting, waiting for decisions and for scheduling what should be done. To be honest after years of this I am getting worn down. I wont mention the numerous drusgs I have been on. Am a pharmacist, retired faculty member, from a well known school of pharmacy. thanks for your ear. Joanne
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General Information re indwelling catheter
- By JoanneWhitney
- Posted October 3, 2009 at 12:21 pm · 6 replies
- In Treatment choices
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- By Karego
- Posted October 3, 2009 at 12:38 pm
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Your situation is somewhat different from most of us, I would think. I'm assuming you do not have a bladder cancer diagnosis, but that because of the urethral damage, the bladder can't drain properly. For all practical purposes, I would still think you need to have the best urological specialists working for you to help you make an informed decision as to a solution for you.
I have an Indiana Pouch (neobladder with stoma on tummy), since my urethra had to be removed because of cancer there at the same time as my radical cystectomy.
I'm wondering if it is possible to have a stoma connected to your original bladder? Haven't heard that it is possible, but it would serve you better than a suprapubic catheter for the long run.
Thanks for putting your post out for us. You do have a unique situation that we can learn from.
As always, we encourage everyone to be advocates for themselves and ask lots of questions of their medical teams. Solutions come when doctors work with the patient to explore all avenues.
You might give us more information so that we are sure we understand your diagnosis.
Karego
- By Cheyenne
- Posted October 3, 2009 at 2:58 pm
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Gee, I,m sorry you have all those problems. I can;t imagine having to live with an indwelling that long. I don;t know, this is a new one for me. The only thing that comes to mind is possibly having a urinary diversion done which I guess would mean bladder removal. Then an ileal conduit could be used, and possibly a neo or Indiana pouch, but likely they would not be first choices in your case based on what I know about them. I think if it were me I would look into getting an ileal conduit. You'd have a stoma and a bag, as many people do, but I would think that would' be better than what you have. That's my personal thinking. But I sure would get the best urologist I could find. Have not come across this before. Please keep us informed, you can help us out a lot. And hopefully we can help you too. I wish you well and will keep you in my prayers.
- By Tamlin
- Posted October 3, 2009 at 8:52 pm
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Joanne,
I have an Indiana pouch and am very happy with it. I absolutely hated the suprpublic tube I had after my surgery, so painful and sore. I know a gal who is a quadriplegic from an auto accident and she has a small slit into her abdomen just like mine that she catherizes directly into her original bladder and does well with it. Those decisions are very hard to make. I will pray for you to make the right decsion for you. Let us know what we can do to support you in your decision.
Tamlin
- By SailorMan
- Posted October 4, 2009 at 5:11 pm
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Well, I understand where yo uare to an extent. I had a R/C in July of 2008 and a few weekds later, when my foley was removed, I only got a very small amount of urine throiugh my urethra and then nothing. My urethra scarred internally and until I can get it fixed, I have been using the Suprapubic that was made as part of my neo. The plan was to get the urethra fixed earlier this year but I had a kidney stop functioning and head to undergo a lot of proceduers to try to get the kidney working and then finally when it was found to be "dead" to get it removed. Thus, the urethra repair was put ofrf until next year (probably).
We have experimented with a couple of different catheters in the suprapubic position - I preferred a "Valved" catheter which required no bag but that did not drain my neo as well as a conventional foley (through the tummy/suprapubic hole).
Right now, I have a foley in and my wife and I are fully capable of changing them as needed as thats what my uro wants us to do. When I use a foley, it is set up with a leg bag but most of my work or away from home time is spent with the foley clamped so as to keep the urine in the neobladder except for when I drain (of course)_
- By JoanneWhitney
- Posted October 8, 2009 at 1:01 pm
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I want to tHANK all who replied. To be clear I did have a cancerous ademoma of the urethra. Radiation treatment destroyed the urethra. Have had great pain, have been overdosed and underdosed. Constipation is a great problem. Can't seem to get a good regimen. Tried MoM, Mgcitrate, duculox, PEg, softeners. Next week am having a bigger suprapubic put in. Am waiting 3 mo for new colonoscopy before making a decision to have a portion of bowel removed. Hope I do qualify to be a member. Some of the replies seemed to hint that I did not. Joanne
- By Karego
- Posted October 8, 2009 at 1:12 pm
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Joanne, thanks for the clarification. With your particular problem, it is very important to have specialists working with you. It does sound like an ileal conduit or a continent diversion (like the Indiana Pouch) would give you a permanent solution. We are learning along with you that our unique situations require thinking 'out of the box' for solutions.
Karego
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