Living With a Neobladder

I received a link in my email today of a republished 2017 article from the editors, Living With a Neobladder. After being diagnosed with the extremely rare Small Cell Bladder Carcinoma in the Spring of 2024, I underwent aggressive chemotherapy that Summer. My general oncologist had recommended radiation in concert with the last two rounds (of four) of chemo, but the urology oncologist I consulted recommended a radical cystectomy - which I been leaning towards. Though there is a lot of useful information in today's post, there are ways that it differs from my recent experience. I thought it might be helpful to someone (or ones) to share that.

Though my original inclination was for the straightforward illeal conduit procedure, my Indiana University Hospital surgeon talked me into the neobladder option instead. In retrospect it reminds me of the old adage: "If you are a hammer, every problem looks like a nail." The guy is famous for how well he does this, and as far as I can tell his reputation is well deserved. The procedure went smoothly. The problem was we were given no comprehensive (or realistic) picture of what happens after.

I was 68 years old and it is a six and one-half hour procedure, which was what had given my general oncologist some pause about recommending it. It went fine as it turned out, but I awakened with IVs and two drains with catheters attached - one for abdominal cavity fluids, the other for urine. I required hourly visits. Injections, pills, bag emptying, wound care, etc. What one needs most is sleep - and you can't get any to speak of in the hospital.

I was discharged after two days stay, but all the care needs persist (sans the IVs) for the first two to three weeks after. For example, the catheters both have to be flushed 3-4 times daily. Bags emptied, measured and reported. Injections, pills, powders administered. Bandaging changed. If you don't have a willing and competent partner at home, you would need to hire significant in home nursing care. This is not a do-it-yourself project, cause at this point merely rising to a seated position is a significant challenge - as is staggering slowly a few steps.

The connections of the catheters are friction only. Great care must be taken to ensure that the seals are complete. Movements while awake or asleep can dislodge them. Leakage is frequent and unpleasant. Over time the plastic gets smoother, making getting a good seal more and more challenging. If the fittings were threaded instead, the system would work a lot better.

After three weeks the patient returns to get the incision (from above the navel to the groin) staples and both catheters removed. The urinary caths extend all the way to the kidneys, so when they are jerked out you feel it rather acutely.

I read with some amusement the characterization that urinary incontinence is sometimes a problem. Remember, your body has been continuously draining, and it doesn't immediately adapt to the lack of catheters. For men, there is the loss of the sphincter that was formerly relied upon as well.

Incontinence is a long term issue. A lot of the literature suggests that diapers at night will be needed for a year or more. Daytime progress is better, but in the early days side issues like stubborn yeast infections have to be dealt with. Finding the right solutions in terms of diapers and pads was more of a challenge than I would have expected. A lot of what's out there is either uncomfortable, ineffective or both.

And sexual function? Forget about it (sans extraordinary measures).

According to my physical therapist, the benefit of pelvic floor exercise disappears at about the six month point. In other words, function becomes roughly the same for those who didn't undergo it at that point. So if you go that route, get it scheduled for as early as possible. It wasn't even ever suggested to me. I finally got into a program about 2 and a half months in, but I could have gotten a lot more out of it earlier.

So now I'm about 5 months removed from surgery. I'm in much better shape. The yeast infection is mostly abated. Incontinence persists, but is much less of an issue. My strength and endurance are showing real improvement. But I'm not convinced that the standard illeal conduit procedure wouldn't have been the better way to go.

What ever you decide, think things through carefully and thoroughly. Ask lots of questions. Get lots of opinions.

And best of luck.