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Urostomy Info

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  Past Member
Posted: Sat May 28, 2011 6:47 am
People with urostomies, please give me any info you can.  Anything at all, however trivial it might seem to you.  Thanks in advance.
Posted: Sat May 28, 2011 5:21 pm
Hello Male Urostomate for 4 yrs . Bladder removal due to bladder cancer. Had a post op Incicsional hernia op last year , all healed no problems . Learned to live with my Uro & doesnt stop me leading an almost normal lfe.

It suits me to use a one piece Welland bag & I dont push this more the 2 days wear. It would last longer , but for hygene & peace of mind  every 48 hous is fine for me . I have only experieced 3 leaks in 4 yrs , mainly my own fault for twisting about in my sleep.

I was 2 weeks in Hospital ( UK --we dont pay) & took 4 months off work . I carried on working for another 12 months & then decided to take early retirement any way.

I dont wear any special clothing or belts , & I have no bag flange adhesion problems . I do have some support briefs & wear them on special occasions ( If I need the flatter tummy look)

No its not the most pleasant operation , but can be got through with a positive attitude , a sense of humour & support from family & friends.......Best wishes ....Pete.
Posted: Sun May 29, 2011 1:39 pm
Hi.What sort of information is it you are after?

I have had a urostomy since 1991, with a revision in 2005. I also have a colostomy but due to short bowel syndrom it is more like an ileostomy. I cycle, play golf, ski, swim, pretty much anthing I want to do.

Although its not fun at first you will learn to live with it. It takes time and perseverence but after a while it becomes second nature to look after it.

I wear normal clothes although I do wear boxers underwear as I find it helps with two bags to look after.

You will be helped by a stoma nurse at all but I feel experience is the best teacher.

Best wishes
Posted: Sun May 29, 2011 1:51 pm
I have 18 months experiance with a stoma, are you having any problems? I have found the secret to stop the itching.
Posted: Sun May 29, 2011 2:04 pm

I have had my urostomy for over 49 years. I had my bladder removed when I was about 1 1/2 years old maybe 2.
I have lived with it my whole life and then around 1984 I had a revision because the stoma was to small. Since then I found the Convatec appliances with the flange and pouch stay on for me with a little adhesive and I also use the pink tape so I can shower with it.
If I have a leak it is because I either put the flange on in a rush or I have had a problem with the spout on the pouch but otherwise my appliance stays  on for about a week.
I live in Oak Lawn, IL  and I see you are in Elgin.
If you want to contact me more please feel free at ****.

If I was given a chance to reverse this I wouldn't except for the expense.
Otherwise I am happy with my little stoma. Hope you do well.
Posted: Sun May 29, 2011 3:24 pm

Marion from Cape Town South Africa, can you share your secret to stop the itching.

Posted: Sun May 29, 2011 7:28 pm
Hi, Kat:  I had my urostomy a year ago in February.  It has been a challenge at times, but I am getting used to it.  I currently use the Coloplast one piece system.  I have had few leaks.  Most of my leaks have been due to my mistakes.  Once you find a product that works for you, few leaks happen.  I live in Texas and my biggest challenge is the high humidity.  My wafers do not last as long in the heat and I am plagued with yeast infections.  Currently, I am keeping the yeast under control with powder and an infrequent dose of Diflucan.  I used to have a serious itching problem, but I finally discovered that my itching was due to using too strong barrier wipe.  Currently, I use the Convatec barrier wipe and I have eliminated my itching problem.  My biggest friend is my overnight drainage bag from Coloplast.  It allows me to sleep through the night peacefully.  When I had cancer, I had to get up about 4 times each night.  Now, never!  

Make a friend of your Ostomy Nurse.  Around here they are very busy folk and hard to get in touch with.   But they are a font of good information.  

I should suppose that you and your dr have discussed other options besides an ostomy such as an internal pouch?  For some folks pouches are preferred.  For me, I am glad that I chose an ostomy.  It has become part of my routine and I am glad to be free of cancer.  Good luck to you.
Posted: Mon May 30, 2011 3:15 am
Hi Kat,

As what may be the youngest ostomate [2 months post op] here I will tell you what I know.

You can investigate as much as you like but it will be all different to what you expect. Get to be close friends with your stoma nurse, there is no one better to tell you all you want to know. They are better than your urologist in that regard. Sure your urologist knows all about your operation but the physical and mental situation is the realm of the stoma nurse.

My bladder was removed due to cancer and I am now hoping to be totally cancer free. The pain after the operation was horrific but was handled by a constant drip of pain killer at first, then by my pressing a button to deliver more as needed. I was out of hospital in six days and took 4 more weeks to rest before flying 3000km home to the Philippines.

It is a whole change of life with your bag, and you will make many mistakes in the early stages but like life, you learn quickly what you can and cannot do.

I was told that many would find the bag offensive but I have found the opposite to be the case. No one at home minds seeing my bag under normal circumstances. Though when the Prime Minister, President calls at my home, I do cover it.

To sum up, ask your urologist all about the operation, but ask your stoma nurse every other question, don't be shy, she has heard all the questions before, talk about sex, or any subject that worries you. She will always be your best source of knowledge, but places like this and people like these here will always be there to talk to when needed.  I have and it is good to be able to let off steam here that you bottle up elsewhere.

Posted: Mon May 30, 2011 9:55 pm
I have had my urostomy for 11 years..been there done that..everything that can happen has just about..let me know what I can do to help you..I am open to sharing anything.
  Past Member
Posted: Tue May 31, 2011 2:15 pm
Wow!  Leave a coupe days and SOOO many responses.  Thanks to all of you!  I have squamous cell bladder cancer (with a couple precancerous areas waiting in the wings if they'd done a less radical surgery) so I'll be getting a urostomy in July.  I really don't know enough to know what I don't know (if that makes sense).  I was notified of the cancer on 6 April, the urologist gave me his opinion and meantime I got a second opinion.  Both the same - urostomy.  But then the odds are overwhelmingly in my favor of being cancer-free.

I am pleased that those who mentioned leaks have had that happen so rarely.  Also that those of you who were given this operation for cancer are doing well.  If I come up with any specific questions, I'll ask.  Very Happy

Thanks again to all of you.

Posted: Tue May 31, 2011 5:00 pm
A minor inconvenience, Kat, for a lifetime of peace of mind.  No, please change that: for a lifetime.
Posted: Sun Jul 10, 2011 11:20 pm
Hi Kat65,

Read your post about the "Phantom Stink."

I have two small supoort groups for Ostomates. In both groups there are only 2 "Urostomates."
I phoned both when I read your post, as I am not a Urostomate - I have a colostomy.  Both ladies felt the same because they went through similar circumstances. "It's probably all in herr mind." As it was in ours.

I believe as do my members that your issue is psychological... Remembering my own ostomy 10 years ago, I to smelled something that wasn't there.  We are very critical of our situations and at times can manufacture that which isn't.

Trust your husband  -- He's probably been with you for some time and I'm sure, if he smelled something, he would tell you.

I hope this helped,


Lawrence (Larry) Pilarski

Ostomy Alliance of Jersey City
"However Long the Night...
    Dawn Will Break!"
Meets 1st Mon. Every Month
4 PM@ Jersey City Medical Cntr.
Web Site:
Phone: 201-339-5251


Bayonne Ostomy Alliance
"Lighting a Candle Amidst the Darkness"
Meeting 2nd Wed. Every Month
2 PM @ Bayonne Medical Cntr.
Phone: 201-339-5251
Posted: Tue Sep 20, 2011 11:43 am
3/4" Diameter Rosebud Stoma
  1. Shower and wash skin around stoma with soap and water, scrape off any excess adhesive.
  2. Wipe skin around stoma with alcohol swab.
  3. Coloplast ostomy powder and blow-dry excess powder.
  4. Install Coloplast 2320 Ring
  5. Install Coloplast 2-Piece base plate
  6. Place ostomy powder around base of stoma.
  7. Install Coloplast 2-Piece bag.  Placing ostomy powder around the base of stoma before clipping on the 2-Piece bag is the secret.
Posted: Wed Jan 25, 2012 2:56 am
can you tell me if you get a lot of wind pain? i have a urostomy.and no matter what i eat i have painful wind, i go tothe toilet after every meal which i,m not complaining about cos i,ve been in hospital so many time with bowel blockages.but lost my bladder,just wish i cold eat wihout wind pain. had my ostomy 20 months aga.x
Posted: Wed Jan 25, 2012 11:33 am

Even though it was 20 months ago sometimes the intestine needs to adjust to the new plumbing. If you keep getting this much pain when you eat I would mention it to the doctor.
Eat light and small meals see if that helps. I know if I eat a big meal it hurts alot because it is to much for my intestinal track to handle. I have had mine for 50 years.
But don't take any risks and if the smaller lighter meals don't help CALL THE DOCTOR. To many people wait until it is to late (believe me I know from personal experience).
Hope that helps a little bit. Any other questions you can contact me.
Feel better,
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