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Help 66yr mom not recovering well from neobladder

13 years 3 months ago #3722 by Patricia
Karen i wish i had you to do the research instead of me! is overload isn't it? Its so great that you are his advocate and that he can call you and ask the questions and not have to worry about the bazillion possible things that could go wrong.
The last time i went back up to Cleveland my surgeon said he had a male patient in there that had a pouch stretched out to carry over ll00cc's.......They were going in to do a little repair. Probably a bit too much beer is my guess! The only reason my pouch stretched out to allow 750cc's is because one time early on ...about 4 weeks after coming home i just couldn't get my catheter in..I stood on my head..tried every possible position to get it just wouldn't enter. I was having spasms like labor...i called my local uro and he said and i kid you not..."well you know more about your bladder than i do..what do you expect me to do"...seriously!!!...At the time i only had the one catheter that they gave me in the hospital. My husband put me in the car at ll:30 at night and i took my mayonaisse jar and some caths with me and as luck would have went in just as we were pullling in the hospital parking lot...750cc's worth. That was a lot of fun. I found out about other more flexible catheters after that thanks to this site and Karen Green. I now keep 3 on hand just in case my stoma and pouch want to do battle with me again!

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13 years 3 months ago #3721 by KarenE
Sorry about the information overload - makes your mind go buggy :o
I had to learn not to tell my Dad ALL I knew. I had copied and pasted all kinds of good info - about 8 pages - and gave it my Mom and Dad. I don't think they read it. It was just too much for them while they were going through everything. My Dad just calls me and asks me the questions. My Dad was told about not getting the pouch too full because it would stretch out... too big ? Right now he is working on getting continent during the night and has to get up twice a night and is really happy with no accidents. He's kinda behind the norm because of having chemo after the surgery and having to leave the suprapubic catheter in during that time.

I know sometimes too much information is bad.... but I hope I help people to ask their doctors about metabolic acidosis and I guess give their doctors the information if they don't know about it!!!

Take Care,
Karen E

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13 years 3 months ago #3720 by Patricia
Geez Karen...i now have information overload!! It reminds me of when i was first diagnosed with bc and i read EVERYTHING ANYWHERE. It still kind of looks like its anyones guess as to who will get it and why? But definately something that needs to be discussed as a possibility...certainly to the doctors who do the surgery! I wonder if the same risks apply to the Indiana Pouch? Or maybe i don't want to know. The one thing i did read that disturbed me was the rupture of a pouch.....noone ever told me what capacity i should not go above....usually my bladder lets me know...but over time (4 yrs now) it kind of goes to sleep with me in the evening and i don't wake up to empty and i usually have between 500cc's and 700ccs to empty in the morning. During the day its more like 250cc to 300ccs. Oh no please don't tell me i have to get up in the middle of the night...!!!

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13 years 3 months ago #3715 by Rosemary

Great going, Karen E!! Thank you for your very valuable input!! Good work!


Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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13 years 3 months ago #3714 by KarenE
After I found out that the metabolic acidosis was the problem with my Dad I talked to his surgeon.  He immediately said, yes that is what he has.  When my Dad saw a kidney specialist, he said my Dad would have to take the sodium bicarbonate for life.  A member of this board who I corresponded with said her Dad's doctor told him he had to take it for 3 months and at that time the neobladder starts acting like a "real" bladder.  It seems every doctor says something different.  When I spoke to my Dad's surgeon's nurse/assistant... she said she had never heard of it.... in ten years!  My Dad had no underlying condition... well bladder cancer... but every bladder cancer - neobladder patient has this.

I will try to remember the story....

The Neobladder is made out of a piece of intestine.  Urine can seep thru into the body.  This causes the body to become acidic and therefore metabolic acidosis occurs.

Maybe some people are just not that acidic....  their bodies handle it better?

This is what I found and read that triggered a disturbance in my Dad's body due to the surgery and not due to his not drinking enough water...
Conclusion Our experience suggests that neobladders composed of sigmoid or ileum are good bladder substitutes and comparable to each other interms of adequate capacity with a low-pressure system. Surgeon preference, ease of construction and length of mesentery are among the factors that must be considered when choosing between them. However, sigmoid neobladders are easy to use, avoid small intestinal resection, reaches the pelvic cavity easily, and protects from met-abolic acidosis in patients with borderline renalfunction. It is noteworthy that with ileal neo-bladders, on the other hand, the patient requires medical supervision to prevent the occurrence of symptomatic electrolyte disturbance.[/b]

From our experiences, every doctor seems to have a different story about this.  Maybe it's too early for exacts?

From another site and information:
Electrolyte Imbalance

What are electrolytes?

There are many chemicals in your blood stream that regulate important functions of our bodies.  These chemicals are called electrolytes.  When dissolved in water, electrolytes separate into positively and negatively charged ions.  Your body's nerve reactions and muscle function are dependent upon the proper exchange of these electrolyte ions outside and inside cells.

Examples of electrolytes are calcium, magnesium, potassium, and sodium. Electrolyte Imbalance can cause a variety of symptoms.

My Dad had blood tests, ER visits and no one caught this!!  The high potassium was causing dehydration which makes you nauseus and therefore not wanting to eat or drink.  High potassium can be deadly and almost caused a heart attack in my Dad.

Here is another site and report that states that metabolic acidosis is a complication.

And yet another quote from a site:

Metabolic disturbances may result from the interaction of urine with the absorptive surface of the bowel used for the procedure -

It depends what part of the bowel is used.

I really hope this helps.  I can keep looking through all of my saved articles I have found and read about this and post them if it is desired.

Karen E.

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13 years 3 months ago #3712 by Patricia
Tru....just wondering if they gave you a cause of the metabolic acidosis? Malnutrition? Is your mom diabetic? Shock? infection right? I'm sure they checked that. A CBC would have told them. Just trying to figure it out. I asked my Dr. about it and he said its sometimes caused by the underlying the cancer itself...or it can be caused by too much asperin........but he said he's never encountered it with any of his patients. I'm just medically curious........Thanks Pat

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