Bladder cancer Ileal conduit (ileostomy) Surprises?

6 years 4 months ago #53324 by Jmitchell418
Replied by Jmitchell418 on topic Bladder cancer Ileal conduit (ileostomy) Surprises?

Best wishes in your journey. This is beatable! Here is my IC assessment copied from a different post:

Hello, all,

A few posts ago in this thread, I asked if anyone with an ileal conduit was willing to share their post surgery experience. I'll answer my own request for the benefit of others!

In Aug, 2015, I underwent a cystoprostatectomy to cure stage 1 high grade cancer. It was my third surgery following the removal of my left kidney and a second surgery to remove the ureter. Life was dark and gloomy for a year.

I am now 6 months post surgery with an ileal conduit diversion and I couldn't be more satisfied with my decision. The first several weeks where challenging in order to test the different appliance systems and get used to how best to change it. Once I settled on the appliance arrangement, I was able to refine the process of changing it weekly. Yes, I am getting 1 full week out of an appliance and that is only because I am choosing not to push it longer. I have gotten the time down to about 10 minutes before a shower to remove it and 5 minutes after to reinstall it. Showering without the appliance once per week is quite nice!

I chose the IC because it would be the quickest way for me to get back to normal and I knew I would struggle with the mental fortitude to train a neobladder. I do not have any regrets.

I am active at home and at work. I travel extensively for work. My wife has had to FedEx supplies to me! I have had no issues traveling by plane or with airport security for that matter.

I had my first round of scans in December and all were clear of cancer. I celebrated the results with my first tattoo.... A compass tattoo with the words Faith, Family, Courage, Hope at the NE, NW, SE, SW locations. My focus on these four things will guide my through the cancer journey.

It's hard to keep spirits up when you get that news but I'm certainly a believer now that there is life without a bladder. Life for me is 6 months at the time for the next 5 years. And I'm going to be damn sure I keep my focus on the important stuff!

Thoughts and prayers to everyone. Thanks for all your support and guidance when I needed it most!


45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!
The following user(s) said Thank You: Jack R

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6 years 6 months ago #53027 by Alan

Welcome! Sorry for the reasons to be here but, this is a treatable and beatable disease.

I have not had to have a diversion. However, many of us have bookmarked a very useful summary of the 3 different types from the Cleveland Clinic listing pros and cons. Also, it seems that most posters and other fellow BC warriors are usually happy with whatever type they chose. Anyway, here is the discussion:

Hopefully, others will chime in that have had your type of diversion.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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6 years 6 months ago #53025 by Dave H
Hi all.

I have been diagnosed with aggressive, high-grade muscle invasive bladder cancer. After the initial cytoscopic resection to remove the two visible bladder tumors, I have started chemotherapy. The chemo is "dose dense MVAC".

I accept that my bladder will be removed after I recover from chemo, as has been recommended for my situation by 3 urologists and 1 oncologist.

I am leaning towards doing the ileal conduit (illeostomy) option for bladder diversion.

For those of you who did the ileal conduit (ileostomy), were there any post-surgery surprises or new information about recovery and living with the bag that you really wish you had known about?

I have asked my health care people for a referral to the nurse who handles this area post-surgery, but I'd sure like to hear from you as well.

Thanks for your help, and best wishes to all posting here.

The following user(s) said Thank You: Bwendt

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