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Newbie: Neo-bladder w/lots of setbacks

4 years 6 months ago #50830 by resonut123
Hi all, forum newbie here.
My background story- sorry it’s long!!!!

Jan 28 2015- Bladder biopsy
Feb 9 2015- Biopsy results: carcinoma insitu (stage zero)
March-April-May of 2015: 3 months to get 6 BCG treatments, which I was told is 70% effective but did not work & cancer went to stage 4.
June 2015: towards end of June I started 12 weeks of MVAC chemotherapy of which I made it through pretty good.

Surgeon said best option was to remove bladder, nerves, lymph nodes and have a new bladder made from my intestine.
Oct 15 2015: Neo Bladder surgery for 10 hours- surgeon had problems stretching part of the bladder, in hospital 10 days.
Ended up with an internal & external leak (external from incision staple wound hole)
Oct 31 2015: Back in hospital for 7 days, had kidney tubes implanted (Perc Nephs)
After release foot swelled, had ultrasound – 2 blood clots, put on Lovenox (still on until end of April- maybe).

Dec 2 2015 – Dec 5 2015: in hospital with infections. Mersa, Staph, Yeast & Enter-caucus.

Dec 30 2015 – Jan 8 2016: in for outpatient change of kidney tubes (Perc Nephs), when I went into septic shock (ecoli in blood) and was on life support and pulled through.

Jan 2016: in hospital for infections again- Mersa, etc.

Feb 7 2016: in hospital again for fever and infections- Mersa, etc.

Middle of Feb 2016: had outpatient surgey to remove stricture (obstruction) in lower Urethra area.
Have an upper stricture in the Ureters & may need surgey for that in April or May 2016

Finally in end of Feb & March 2016: I had catheter & foley bag pulled, but still have kidney tubes (Perc Nephs) in.
Surgeon wants me to cap the kidney tubes for several days & start training & using my new neo-bladder- which is going reasonably well. I do pain in both kidney areas while capping & developed some abdominal pain as well.

I am able to cap the kidney tubes for 5-7 days at most, then get some kidney pain and the abdominal discomfort is pretty much daily. I am at least using my neo-bladder- but have lots of leaks so go through a lot of Depends & pads.

QUESTION: anyone go through some of the same things that I did?
Any help/tips on how you made it through?

Thanks for reading.

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