new kid on the block

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Sat, 18 Nov 2006 09:16:14 +0100

Hi April,

Ah, so you have an Indiana pouch, you're a pouch potato now. :) Just read that this is the most common choice for patients needing bladder removal, because it's supposedly less likely to....leak! There's quite a large post-op complication rate for bladder removal, but it goes away in time. There's a learning curve (a steep one). Sometimes the valve must be tightened, sometimes this leakage problem passes on its own. You're too soon post-op to tell if it's a passing or lasting complication, I think. Good luck with things and I hope you get off easy on this one.

Do you have an ET nurse, or an ostomy wound nurse you can turn to for help? You're very fresh out of surgery and can use all the input you can get. Call the doctor and complain, you didn't bargain for diapers, after all.

BTW there's a glossary of terms and acronyms: http://blcforum.com/cgi-bin/forum/YaBB.pl?board=general

Have a peaceful, non-eventful weekend.
Wendy - Wendy

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Fri, 17 Nov 2006 12:25:55 +0100

Hi Wendy,

Nice to make your acquaintance, as well. :)

You asked some questions...

Yes, the mass in my uterus was a large fibroid, connected to what was in my bladder. Both nasty, but only one cancerous. (Very glad about that.) And yes, we were very scared. Still are. It will take a lot of time to recover from the mental and emotional trauma of all this, too, not just the physical.

As for the terminologies...they confuse me a bit, too. ;)
What I have is an inside pouch made from a portion of my small intestine, with a stoma, just to the right of my belly button, for voiding with a catheter once I'm healed to that point. Right now I still have an in dwelling catheter that drains into a leg bag, and I have to irrigate the new bladder every six hours with saline solution. My urethra was removed along with the original bladder, so no regular functioning in that way for me now.

Of the choices offered, this seemed like the best, but I'm having such a rotten time just now with leakage from the stoma, even with the catheter still in, that I wonder if I didn't make a bad choice after all. (The only other choice he offered was to have an ostomy bag, and I didn't want to go that route if there was a better way.)

This is awful. I'm even wearing an adult diaper to try to avoid messing up everything, and it isn't helping much. Hopefully my doctor will offer some relief and advice soon. :-?

Anyway. Thanks so much for the warm welcome and the insight.
Lots of strong survivors here, especially yourself.

Strength in numbers, right? ;)

Take care, then.

~A - April36

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Fri, 17 Nov 2006 06:30:08 +0100

Hi April,

Welcome, it's an honor to make your aquaintance. You're a true survivor in every sense. Your post reminded me of a new twist to oncology, how to deal with the long term survivors who get second cancers WAY down the road, as a result of childhood cancer treatments. Even breast cancer survivors (like me) get second cancers from radiation, if we live long enough, and in our cases it's usually lung cancer or so I read. Or like with kids that get Hodgkin's, they get breast cancer down the road. It's very tough.

A sarcoma of the bladder, eh? Very unusual. It must have been extremely scary for you and your partner, thinking there was also a large cancer in the uterus, I suppose that was a big fibroid then?

If you have a stoma and a urostomy, then I don't think you have a neobladder as well. It's usually either/or. Neobladders re-connect to the natural urethra. Lots of terminology in this game, but don't fret. If you do actually have an ostomy and not an Indiana pouch or neobladder, please consider adding your experience to WebCafe's Trench Tales. We only have one experience with an ostomy/ileal conduit and could use more than that. ([url]http://blcwebcafe.org/stories.asp[/url])
If you browse the cystectomy section of the website you'll see the various techniques discussed.

You're too young for this! But you are no stranger to challenges and there's every reason to believe you'll be fine.

I wish you all the best,
Wendy

- Wendy

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Thu, 16 Nov 2006 20:52:49 +0100

Thanks, Rosemary!

A study in endurance, you say? :D Can't say I disagree, tho I hadn't really thought of it like that.

;)

I think we can all learn from each other, and likely the greatest exchange of all is that of kindness.

Blessings & good wishes to you, friend. - April36

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Thu, 16 Nov 2006 19:18:27 +0100

Welcome, April,

If I may say so, you certainly are a study in human endurance!

We can all learn from you!!

Rosemary - Rosemary