Input about double ostomies from the UOAA (www.ostomy.org) discussion forum

Need input from double ostomates: colostomy and urostomy
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Need input from double ostomates: colostomy and urostomy
Postby randyhenniger » 2013-11-27 09:23:53

Calling those with both a colostomy (or iliostomy ) and urostomy….

I have had a colostomy for 27 years and find that it does not interfere with any activities I enjoy; surfing, hiking, biking, swimming and being intimate with my wife. If I hadn’t chosen a treatment for colon cancer that included a permanent colostomy, I am certain I would not be here today.

Due to complications from pelvic radiation for colon cancer (and getting older lol) my bladder function is declining. I have had multiple UTIs due to incomplete voiding and frequent incontinence. In an attempt to resolve this, I have recently had urethrea reconstruction surgery (Oct. 25, 2013), but the outcome was not what was expected. I still struggle to void my bladder and have continued leakage. Most troublesome, especially at work.

Now you would think that since I’ve learned to live well with one ostomy that having another would be no big deal…right? Wrong, I am still trying to justify why I should live with incontinence. Crazy, huh?

Anyway, I am seeking advise from other double ostomates about their experience with both a colostomy (or illy) and urostomy.

Thank you for taking time to have read this and reply. WOCN input is very much appreciated also!

Be WELL!
Randy (OstomyMan) Henniger
TheOstomyMan@gmail.com
randyhenniger

Posts: 9
Joined: 2011-10-20 16:46:27
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Re: Need input from double ostomates: colostomy and urostomy
Postby tpdiva » 2013-11-27 20:29:26

I’m so glad you posted this question. Though I won’t be much help to you, I’m hoping you (and I) get some helpful replies. I’ve had a colostomy since October 2012 and I too am debating having a urostomy.

My bladder, along with much of my large intestine and part of my small intestine, were compromised by pelvic radiation leaving me with a colostomy and nearly total bladder incontinence. I wear pads and I am wet all the time. It is very uncomfortable. So far, knock wood, I have no skin problems. So I’m wondering if a urostomy would make my life easier or just create other problems. I don’t know how to make this decision on my own. When I asked my family doctor about it all he said was “I can’t believe you are even thinking of going through this again”, meaning surgery I guess.

So I would really appreciate advice from this wonderful support group. Thanks!
tpdiva

Posts: 3
Joined: 2013-07-08 17:15:17
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Re: Need input from double ostomates: colostomy and urostomy
Postby smashms » 2013-11-29 10:12:24

There are several people on here that have both, i have a urostomy and can tell you it completely changed my live as i was before tied to catheters and a very strict cathing schedule now i just empty my bag about every 2 to 3 hours!! The surgery is not an easy surgery but since you already have an ostomy the training will be easier for you. I was in the hospital for a total of 10 days after but mostly because my bowel dis not wake up right away! Took that a week before they felt comfortable enough to take the ng tube out.
neurogenic bladder and MS ileal conduit 2/15/2011
smashms

Posts: 650
Joined: 2010-10-23 22:18:12
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Re: Need input from double ostomates: colostomy and urostomy
Postby baglady » 2013-11-29 20:31:20

I am a double bagger (Uro and Colo) I have had the Uro since 1973 and Colo since 1993. I was born with Spinal cord issues and nerve damage. So I had neuro-genic bladder/bowel. I find it no different having one or two. You do need to be more careful of dehydration and make sure you drink enough water, but other then that I have my life back!
Urostomy 1973, Colostomy 1993, 5 failed hernia repairs, kidney stones.
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baglady

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Re: Need input from double ostomates: colostomy and urostomy
Postby wiseman » 2013-12-14 21:57:07

My surgery 5 years ago left me with both a ileostomy and a urostomy, so I have always had both. You must be careful of cross contamination, as in, do not get poo from one stoma onto your urostomy stoma, it may cause an infection. So when changing both bags at the same time, always do urine bag first. I shower bag less, and always washing and shaving the urostomy area first. After showering, I bag the urostomy first, then the ileostomy. Having them both being active at the same time, can be a bit of a challenge when fitting the new bags. Sometimes I’m stuck standing in the shower for ages, with a box of tissues, wiping one then the other, before I get a break to stick a wafer on. But if you time it right, when your colostomy or ileostomy is quiet, then is manageable. Apart from those couple of issues, no other problems. Would be better than having to cope with incontinence. Also as baglady said, drink lots of water so you don’t dehydrate or get kidney infections.
September 2008 ileostomy and Urostomy
FAP Colorectal Cancer
wiseman

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Joined: 2009-05-22 19:51:29
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Re: Need input from double ostomates: colostomy and urostomy
Postby SuzieTampa » 2013-12-18 17:03:19

Hi, I’ve just joined. Cancer surgery left my bladder neurogenic. I self-cathed for 7+ years, but could urinate a little. Gradually I became incontinent and had recurrent and antibiotic-resistant UTIs. I got 5 opinions before I finally got a urostomy in 2010, and it has greatly improved my life. However, I did get a lot of adhesions, and required a lysis of adhesions (i.e., they cut apart my scar tissue) in 2011. Scar tissue returned, plus I have problems from pelvic radiation in 2002. I ended up with an emergency colostomy this Feb, and it’s permanent. My ostomies have greatly improved my life. One great thing about a urostomy is not having to get up in the middle of the night to pee.
7/2002 — dx leiomyosarcoma
2/2010 — urostomy
2/2012 — transverse colostomy
SuzieTampa

Posts: 6
Joined: 2013-12-18 10:20:16
Location: Tampa

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