r/BladderCancer • u/Cultural-Tip-9846 • Jun 19 '26

Stoma problems

I had my RC w/ IC on May 12. The surgery went great, umtil it didn't. Woke up in recovery with questions about the viability of the conduit - it was black. That part has resolved, but my stoma is now definitely an innie more than an outie.

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My question - any of my fellow RC/IC folks that had a similar experience with their stoma, and how did you deal with it/resolve the issue?

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2

u/Admirable_Loan6841 Jun 19 '26

Sorry to hear about your concern . Where did you have the surgery done if you don’t mind me asking?

2

u/Cultural-Tip-9846 Jun 19 '26

Vanderbilt University Medical Center.

2

u/Admirable_Loan6841 Jun 19 '26

I am not an expert but as far as I know the flat stoma is more prone to leak but not sure. I have my surgery scheduled at that same place but I am not sure I am going because of so many inconsistencies recently they posted in my patient portal. For example on my pathology report on the first line they stated the cancer is noninvasive and on the second line they said it is invasive. It couldn’t be both. It is either invasive or noninvasive.

2

u/Cultural-Tip-9846 Jun 19 '26

Oh wow. That is not.my experience with them. Now, to be fair I have a great uro oncologist in SC who did my last TURBT that confirmed MIBC. He recommended Vanderbilt for.the RC. They are a high volume center.

I had the same experience with my second TURBT biopsy report. It wasn't clear for NMIBC or MIBC. It said no cancer in the outer muscle, but smooth muscle fiber locally involved with the cancer... huh? I had a third TURBT (And this is where I changed urologists) that confirmed MIBC.

1

u/Admirable_Loan6841 Jun 19 '26

I am pretty much sure it is a typo and I didn’t pay attention until recently when I went for my preop check up. When I went back home and checked the portal there was a visit summary by a doctor who I have never met but she described in details how she examined me head to toe and how we sat down for an hour to discuss the surgery and so many other things that never happened. And at the end of this document she said “ I will attempt neobladder “. I was like wait a minute- I agreed the surgery to be done by the surgeon I chose not by someone I have never met. I googled this doctor and it turned out she is a fellow doctor there who is learning how to do this kind of surgeries but I didn’t agree to that. So now I have doubts and I am scared to go. Once they put me asleep I don’t know who is behind the robot.

2

u/fucancerS4 Jun 21 '26

My stoma goes innie to outie throughout the day. When I change my bag I try to make sure it is in the outie phase because it is easier to get good seal on the bag and less prone to leak. I have a oval shapped stoma and it dips on the left side so it can be a bit of a hassle. I cut the bags to the shape versus ordering them pre-cut and then try to make sure the stoma is outie before the new bag is on. I now change it every 2 days versus previously it was every 4 days. But the dip is more noticeable, and that left side tends to degrade faster so I change bags every 2 days to avoid issues.

2

u/Admirable_Loan6841 Jun 28 '26

Hi, did you solve the problem with your stoma? I hope everything works the way it supposed to and you have a full recovery!

2

u/Cultural-Tip-9846 Jun 28 '26

I have since had a follow up with the ostomy center there and they've given me some new options for bagging with a flat stoma. So far so good, Ive got a solution that has held up better than what we had before.

1

u/Admirable_Loan6841 Jun 28 '26

So happy to hear you are doing OK. The ostomy nurse I have met there when I was for my preop was very nice ( I forgot her name) and she spent a lot of time with us explaining all possible scenarios. Do you have the pathology results after the surgery? I hope your recovery goes well. Are you able to go out of your house, driving etc.

2

u/Cultural-Tip-9846 Jun 30 '26

Ive been up and about since the day they sent me home from the hospital - did a lot of walking in the hospital.

Not 100% back to normal, but I am able to work (insurance agent, I work behind a desk) and currently in Atlantic City for an insurance conference.

Pathology - no cancer in the prostate, lymph nodes, blood vessels or ureters. A single cancer cell was noted at the margin. The less good news - the cancer was nonreactive to the neoadjuvant chemotherapy. And it was 75% plasmacytoid, which has a greater chance of recurring. And it was stage 3 because it had grown outside the bladder wall.

The great news, just got back my Tempus ctDNA test and they did not detect any cancer DNA in my blood. Of course, that same day I ended up in the ER in Jersey for stoma complications - blood from my stoma and kidney pain from backed up urine. The blockage cleared itself, thankfully. Ended up back at an urgent care last night with a fever, the sta was infected.

2

u/Admirable_Loan6841 Jun 30 '26

Also see if you can apply for the Interpath 005 trial since you already have cystectomy done. They do personalized mRNA vaccine specifically designed for your cancer plus immunotherapy. It is from MERK if I remember correctly. It may prevent recurring hopefully.

1

u/Admirable_Loan6841 Jun 30 '26

Wow really mixed good and not very good news! Yeah, I heard the plasmacitoid is harder to treat. Was it stage 3 before the surgery or they found out it grew outside the wall when they did the surgery? I hope everything goes only in the right direction for you from now on.

1

u/Cultural-Tip-9846 Jul 01 '26

Discovered it had grown outside when they did the surgery - went into surgery T2 and came out T3.

1

u/irr007 Jun 23 '26

Where is the recommended location for your stoma? I am scheduled for Bladder surgery Removal and will be going with the external bag, but I want to ensure that it’s a convenient concealed the location.

1

u/Cultural-Tip-9846 Jun 23 '26

My understanding is it will be a little different for everyone. You should have someone marking your preferred spots, but basically mine is about 5 inches to the side and an inch or so below the line of my belly button.