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Cutaneous Urinary Diversion leaks

mrs_mak
Posts: 1
Joined: Jul 2015

I had a rare form of cancer diagnosed December 2014. As it was aggressive it was imperative that the bladder be removed immediately.  I am still mid-40s and professional career woman. I opted for the internal new bladder (cutaneous urinary diversion similar to Florida pouch) to help with my self image. 

I am apparently a case like no other my surgeon has seen. I had problems with my tubes and drains resulting in having to have a revision to the surgery done in a few weeks after the original surgery to replace one of the tubes. During this second surgery , I spiked a fever and was diagnosed with a bad case of c-diff. (Worst thing I have ever experienced - wouldn't wish this on my worst enemy). The c-diff took 5 months and a great many therapies before a fecal transplant was actually performed - only thing that worked.

However, during the course of all of this, I have been doing my flushing, catherizations, and working to expand the new bladder pouch. I have had leakage issues that are just out of control. There does not seem to be any rhyme or reason for the leaks. Also, these aren't little dribbles either. I leak before it is time to drain and before the actual pouch is full - I know it isn't full because the contents when I drain at leakage are significantly less than the pouch had held previously. I have resulted in sleeping with a towel on my stomach, which is soaked when it comes time to do my next drain. I awake every couple of hours to drain and am really sleep deprived. 

I am now almost 7 months into the new bladder and am distressed about all the leakage issues. I have to change my clothes every couple of hours because of the leaks. I have tried pads, but the leaks are so massive and flow so quickly, the pads can't control it. I try to explain to the doctor, but I don't think he understands the magnitude of my leakage.

Is/has anyone else gone through this? Is there an answer? Does it actually stop leaking at some point? What do I need to do?????? I am losing my mind over this.....let's just say I am becoming disillusioned with the prospect of ever being able to return to my actual life. Please tell me this is not how the rest of my life is going to be......

HalBo's picture
HalBo
Posts: 23
Joined: Feb 2015

mrs_mak

I can only fear but not feel what you're going through.  With the nature of this monster that is in our bodies its difficult, if not impossible, to reassure any one of us of anything turning positive.  I have been so blessed by God through this whole ordeal. I pray He blesses you too.

Have you spoken to other doctors about this? Maybe consider that Cancer Centers of America for assistance? Another hospital or group of oncologists? Others here more experienced than I may have better advice than me. I can only offer my ear and shoulder and of course my prayers. You're not alone.

I wish you well 

Hal

  

donaldcdurand's picture
donaldcdurand
Posts: 6
Joined: Mar 2015

 I don't understand what you have for a bladder, (I have a neo-bladder, made from my small intestine) is this what you have? or do you have the deal where you cath @ your belly button? I do have some leakage and had alot at first, but its gotten better with time.

Lazy_Bones's picture
Lazy_Bones
Posts: 13
Joined: Jul 2015

Your surgery type is the neo-bladder, and it has a steep learning curve. You will want to learn and practice Kegel exercises, and probably cath often at first. It is not uncommon to have leakage problems early on, but the leakage during your awake hours should improve soon - wear Depends until then. Night-time continence will take longer, so invest in good absorbant pads to sleep on. The Kegel exercises will develop you pelvic muscles to a degree you never needed before. You can also check out this very active bladder cancer site, peopled only by bladder cancer survivors and caretakers. You can get lots of really good answers to any question there. http://www.inspire.com/groups/bladder-cancer-advocacy-network/

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