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Any Men w Neo having Urethral Burning?? HELP!

9 years 9 months ago #33827 by jrod1220
I will approach this topic with him again and see what he says. He never saw a psychologist......just his primary prescribed some mild anti-depressants to help him cope, sleep, etc. But my stubborn dad would not cooperate. He took it for a few days and then stopped.....that was a year ago.

Soon....I'll be needing them...just to continue the fight, research, alternatives, etc. It's taking a toll on me too and I am only 46!! I have always been a problem solver and solution oriented but on this one.....I have hit major road blocks and hurdles.

Let's see what happens with the pain mgmt team tomorrow.

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9 years 9 months ago #33825 by jrod1220
Hi Harleygirl! My fear is that there is cancer in the urethra causing this burning but has not been found. He has been scoped and biopsied but all clear....yet this burning is driving him literally nuts.

I'm not sure what type of operation would reverse a neo into a ileal but if not too complex or dangerous...perhaps it is worth a look. My dad is 78....and not very strong now after the BC and RC. He has deteriorated significantly in the past 3 years.....lost so much weight...mental sharpness much lower, physical strength not there. It's really very sad for me to see this happen to him.

I'm praying for a miracle! :)

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9 years 9 months ago #33824 by mmc
If his antidepressants make him feel like a zombie, he's on the wrong one's. I know lots of folks on different ones and it is just the opposite for them. They feel "normal" when on them.

When I tried Chantix for quitting smoking, it made me feel depressed and that is not a good place to be. No joy in anything. That was zombie like to me--the state of feeling depressed.

If his B12 is low, then that can be a cause.

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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9 years 9 months ago #33822 by jrod1220
Mike,

That's right.....a neurologist is for nerves....duh! LOL

I really don't think it is nerves either but you just can't be 100% sure of anything. I read up on Interstitional Cystitis and although this is primarily for women.....men have been known to have this too. Some of those symptoms are exactly the same as my dad's (go figure). I read that a chiropractor or PT actually re-aligned the spine and took pressure off some nerves that were pressing in the wrong places for relief. Some women got immediate relief from the IC symptoms. I guess it is worth a try, right?

Whem he was in the hospital this last go around...the infectious doctors were running all types of tests....no fungal, no blood count issues, nothing except the e-coli found in the neobladder...and that took about 5 days to culture.

Yes, I believe he is more than just bummed out at this point....he talks about ending his life, not worth continuing, can't go on like this, this is no life, there is no hope for me, etc. His primary has already prescribed some low dose meds for this but he REFUSES to take them because he says he doesn't want to be a zombie. When he is feeling well...he is fine, happy, outgoing, etc....but lately that is just a few days out of the month which is what has him so down.

It is not easy dealing with a very stubborn, set in his ways male (yep...my dad), that has never had to deal with any medical issues other than this BC and does not tolerate pain.

He does get the B12 shots from his primary...that was very low. I do have a medical summary for him but I guess I need to update it now and include the tests run at the hospital these last 3 times.

By the way.....he has been on Cipro for the past 7 days now and the burning is not going away. They gave him the Cipro for this last strain of bacteria found.....something called Serratia??? not sure but in the family of e-coli. Doc said the lab recommended Cipro but it must not be working at all because the burning is still there....unless it is not caused by any bacteria/infection. This is the biggest mystery!!

Thanks again for all your help Mike. ANYTHING you think of....please write to me!! :)

Jackie

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9 years 9 months ago #33821 by harleygirl
I am so sorry to hear that your Dad is having this awful problem. My Dad had continual bleeding from his penis after RC and a year after his RC it was discovered that there was cancer in the urethra which was then removed. He had the ileal conduit and not the neobladder.

If they could determine that it is truly the urethra that was causing the problem, an extreme solution would be to turn the neobladder into an ileal conduit and remove the urethra. Extreme, I know, but if the pain is as unbearable as you describe, then this may be a solution. Just a thought.

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9 years 9 months ago - 9 years 9 months ago #33819 by mmc
Jackie,

So sorry to hear about your dad's problems. That is a long time for all of this to go on.

A nerve doctor is a neurologist.

It just seems like those injections of antibiotics clearing things up for a while holds some sort of clue to this. However, you don't want to over prescribe antibiotics either.

It doesn't sound like nerve damage if it didn't start until two years after the surgery.

I wouldn't think 'salt water' would be a problem but who knows about the bacteria in there.

Infectious disease doctor might be a good next step. You probably want to pull together all of his records related to this. Has his white blood cell count been high on his blood tests? I think Pat mentioned getting his B12 checked also. That is certainly something that should be checked. Have they also checked for fungal infection?

When you say he is depressed, do you mean just periodically bummed out or do you think he may be clinically depressed? If he is, you may want to see about getting some treatment for that.

If he doesn't already have one, you might want to consider putting together a medical summary with him. List any and all medications (including vitamins, herbal supplements, etc.) that he takes on a regular basis, list surgeries/treatments, etc. Detail the various antibiotics he's had trying to deal with this situation. You just never know what can be relevant so get it all down on paper in a timeline. Give that to the doctors as part of his medical history.

Sure hope he is able to get some relief.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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