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Urostomy with No Urine!
Has this ever happened to anyone here who has an illeal conduit with outside bag? My 81-year-old father (RC in April with resulting leak, ileus and massive infection and stent placed in left kidney which is still there 8 months later) woke up yesterday, drank coffee, took meds with water, drank cranberry juice — the usual. However, when he checked his pouch about 2 hours later, there was no urine there.
It must have frightened him (it did me when Mom told me about it) as he called his urologist’s office and told the woman who answered the phone what was happening. She evidently told the uro because she called Dad back later and said for him to go to the ER.
In the meantime, Mom, who changes Dad’s appliance twice a week, decides to take a look at his stoma to be sure the stent is not plugged with mucus. She doesn’t see anything, but the stent seems to have moved somewhat so she moves it gently back to where it usually sits. Dad then went about his business and, lo and behold, urine started flowing. As a matter of fact, he had much more output overnight after the stoppage than usual.
Should Dad go in and have this checked? Any ideas on what could have stopped the urine flow? And, I don’t know if it’s a coincidence, but the day the urine stopped, Dad started feeling as if he were coming down with a cold. He has had a few UTIs and says this feels more like a cold than UTI.
This is only the latest in a string of problems my Dad has had post RC. Right before this problem, he has been bleeding since July (not from the stoma). His uro finally (after 6 months of bleeding) ordered a retrograde urethrogram which was negative. Bleeding continued. Last week he scoped Dad again (continually having to stop and clear the blood) and said he saw a polyp this time (that apparently wasn’t there 2 weeks before when he had the urethrogram) so, instead of removing the polyp and biopsying it, he wants to take out the urethra! Seems a bit extreme to me. The uro originally left the urethra because Dad had been under anasthesia for a really long time due to adhesions (over 8 hours) and the margins were clear on the urethra.
Dad’s uro is unresponsive to Dad’s calls and can’t or won’t figure out this bleeding problem. Either way is unacceptable. The only way Dad can communicate with this doctor is to make an appointment and go in. When Dad calls him on his lack of responsiveness, the doctor profusely apologizes, like he does EVERY time. I am going to BEG my Dad to see a new urologist. I’m no doctor, but I don’t think these things that are happening to Dad are normal. Dad is reluctant to start all over with a new uro, but I think staying where he is could be disastrous.
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4 Replies
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Harley,
From my experience with Gene’s stoma and outside bag you should see urine certainly in the bag continuously thru a two hour period. We have had no mucous problems,,I know it can happen, I can’t see Gene’s stents, they took any of those out after surgery. Why does he have stents still? I think its cause for a er visit or Doctors office for sure.
Urine comes out every 5 minutes or so. I wouldn’t be touching the stoma except to clean it when changing the bag… or moving anything around in there either,,,yikeees,,, and why is there blood???? hope this helps…..Ginger Beane -
Hey Harleygirl, sorry to hear about your dad, hope you get the help you need for him soon. I can empathize with your anxieties for your dad, you are obviously a very caring daughter and a good advocate for him.
[quote author=Cynthia link=topic=1567.msg11611#msg11611 date=1197482831]
Harley,
One of the things I would ask his Urologist is if he does email. Some doctors are finding that it is a time saver for them as they can answer routine quick questions without having to see someone. If he does not do emails ask him what he would suggest to make communications work well between him and your parents.
[/quote]From personal experience it is so frustrating when doctors ignore you and then smooth it over with an apology, but the damage is already done!
I tried to email my doc 4 times and did not get any response. I desperately needed help to find out how and where to collect pathology slides and find another cancer specialist. Another issue arose and my sheer frustration led me to write a blunt message. Well, I got a blunt response (at least I got a response) to inform me ‘please do not email me anymore’ ‘you will get a faster response if you contact my office’ ………..the point of emailing was because I was not getting the response from the office…….I never did get an answer to my 2 important questions. The other alternative was ‘make an appointment’ well thanks, but no thanks!I find communication skills in health care just do not exist, you are right it is unacceptable! I too am reluctant to find another doc, but recent issues have forced me to reconsider. Good Luck.
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Harley,
It is always difficult when you are not the one making the decisions. I know as a personal fact that as caregivers to our parents that you can talk until you are blue in the face and they are going to do what they want to do. Would your father allow you to go with him to his next appointment? One of the things I would ask his Urologist is if he does email. Some doctors are finding that it is a time saver for them as they can answer routine quick questions without having to see someone. If he does not do emails ask him what he would suggest to make communications work well between him and your parents. If they do not want you to be that involved it leaves you in a place where you can only support and be there for them. And yes I know how hard that is been there done that.
Your other question was should your father be checked out after the trouble he had with his tubes? I would think it wouldn’t hurt as from what you said it was a placement issue. Has anyone called the Uro office and explained what happened and asked if he needs to be seen before his next appointment?
I know this is not a lot of help but if nothing else you know that someone else is out there that knows the frustration you feel in your situation. I hope that some of the others jump in with more suggestions.Chin up and straight forward
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer SocietyGeez Harley..its already disasterous and has been but you know your dad won’t budge..and now i wonder if a second uro would even want to touch the mess the first one made? Good luck…..Pat
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