Urostomy - Welcome to the VeganOstomy Community Forums!

Severe pain and skin issues for 2 years

Momofbboys — Fri, 01 Apr 2022 00:48:19 +0000

Hello, I am new to the forum but post surgery from 2017. I have had severe skin issues for over 2 years. I’ve been through allergy testing, more products than I care to know about, steroids. Nerve blocks, I am now being prescribed hyperbaric oxygen treatments for 8 weeks 5 days a week 2 hours a day. Dermatologist, etc say they don’t think it’s my skin. I have what I call a moat around the stoma with very icky looking skin. I can’t use any product or rings on the area as it goes into the worst pain , burning and leaking problems. My skin around the aroma the same size as flange is purple. The looked at portal tension but ruled it out. They put me on lyrics . Did nothing. The only thing that helps is to take the bag off and use hydrocodone. I have to change 3 or more time a day. I use simple safe protective sheets which sometimes helps. I can’t function in my daily life to well. Can only sit for a max of two hours before the pain is overwhelming.
im looking for any ideas anyone may have.
I’m at a loss … bout know I can’t keep doing this. They don’t want to move as it may happen on other side. Im thinking it may be my only option if the new treatment doesn’t work.

thoughts??

Showering with 2 piece without bag

lg — Tue, 06 Jul 2021 03:12:14 +0000

Have a Urostomy and enjoy showing without my 1 piece when I change it. Has anyone with a 2 piece taken the bag off at every shower and replaced when getting out ? It would keep bag dry and not have it in the way during shower. Don't know what the downside would be, but am not familiar with 2 piece systems. Thanks ;-)

Urostomy care poll

lg — Sun, 09 Feb 2020 03:11:53 +0000

About 2 1/2 years from Urostomy install and reversal of ileostomy and 2 years cancer free!

Just wanted to poll how every one cares for their Urostomy. I'll go first;

Appliance? Coloplast one piece SenSura Mio Convex

Barrier ring? none

Adhesive remover? Coloplast Brava spray, every change, love it!

Support belt? Yes during day, take off at night

Night bag longevity? Change mine every 2 weeks, flush it daily with water, then vinegar solution

Skin Barrier? never

Powder? yes

Flange extender? Silex by Trio Medical

How often between changes? 3 days

Shower without appliance during change? every time

How often to visit Ostomy Nurse? only when having issues ( was never given any guidelines )

How often visiting Urologist? Mine moved haven't seen for a year now

How often seeing other physician ? Oncologist and GI cancer surgeon now see every 6 months, was seeing every 3 mo before. General Practitioner annually.

Thanks!

Go to routine for fellow Urostamates

lg — Wed, 11 Sep 2019 13:32:51 +0000

I have just always changed after a shower, light stoma powder I brush off after lying still with soft cloth over stoma for about 10 min. Then apply bag with no ring, apply pressure, then heating pad for 10 min. Had incisional hernia repair hernia repair last week. One of the stab holes had to be near my stoma which was covered in surgical glue. This has caused a few leaks, esp the bag they applied in surgery ( not their fault, they didn't know what to do). Have been considering using the Trio Ostomy ring seal (Silvex or Siltac) ( is there a difference ?). With my ileostomy and colostomy (both reversed) I always used paste or a ring. I know a urostomy eats right through the paste. I use the Silex flange extenders from them and really like and have been successful with them. Any different routines would be appreciated, Thanks

eta

I see the Silvex is convex and the Siltac is flat

Support belt and clothing

Tony — Fri, 26 Apr 2019 14:34:27 +0000

I live in the U.K. in Northumberland just a few miles from the Scottish Borders I was diagnosed with bladder cancer last March and I now since June live with a stoma

I am really struggling to find support belts etc that are for Urostomy pouches everything seems to be for ostomy pouches any answers out there

Tony

Fight Bladder Cancer (uk)

ShropshireLady — Sun, 23 Apr 2017 13:15:29 +0000

I'm my husbands carer, he came by his urostomy due to bladder cancer. We have found the Fight Bladder Cancer support group very helpful to us as we went through treatment and looked for advice regarding post-op issues. They are a UK based charity who raise awareness of this condition, and are involved in research towards alternatives to BCG treatment. Please have a little look if you need the latest advice on treatment options.

P.S, I've signposted this forum there too.

http://fightbladdercancer.co.uk/

https://m.facebook.com/groups/124453424252307

Traveling with urostomy

mangie — Sun, 09 Apr 2017 20:00:15 +0000

My husband will be traveling overseas for a week by himself (first big adventure since ileal conduit a year ago last january). He's 80 years old. He has no interest in a leg bag. We thought he could connect his Foley and put it in a black canvas bag, carry it to his seat holding it snug to his body and drop it into the floor. Reverse before landing. Any other ideas? He's a little tense about emptying on long bus rides if they don't have a bathroom in board or don't make stops....

Thank you!

Welcome! :)

ShropshireLady — Sun, 02 Apr 2017 12:55:15 +0000

Hello from sunny Shropshire (England). However you have come to be part of this select group of ostomates, please be assured that there is lots of help and support available.

I am not a urostomate myself, but I am the main carer for my husband who "acquired" his thanks to a nasty run in with bladder cancer 18m ago.

Welcome to the forum :)