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Help with concealment and a general rambling word salad looking for help and tips

Wed Feb 23, 2022 8:50 pm
"This is the best website for people with an Ostomy, hands down. So much understanding. Everyone should join."

Hi everyone, I'm a month in today basically. I'm looking for help in finding wraps for swimming/showering and concealment. I'm currently using a convatec 2 piece pouch on my illeostomy wearing it vertically but am going to switch to horizontally, seemed easier when I tried it in the hospital, so I'm looking for a belt/wrap for concealment on that part of my request for help and suggestions, I've seen a few 3 piece combo sets that seem like they would work, I'd rather hear it from an ostomate than a sales pitch though, I'm weird like that. I'm sure as I get further into the journey I'll be looking into pouch covers, just not quite there yet and everything is so very expensive. Also have seen what looks like a draconian torture device type belt that protects the ostomy while driving, seat belt protection for ostomy. Does anyone have experience with these? I'm not all that convinced I'm going to stick with Convatec either I'm not impressed with the blimping of the pouch it doesn't seem to release gas at all and the stickers for showering seem ineffective at best, then again maybe I'm just gassy. That brings me to my last request for advice. What is your experience like with a "muffler" to reduce the fart noises at random moments? Do they work? Can you recommend one or point me in the right direction?Thanks for making it this far, Thanks for your time and acceptance. Thank you in advance for your help cause I just asked for A LOT of it.Also thanks for putting up with my anger after my surgery and kind words. I'm in a better place now, namely my house and not that hospital.Appreciate that more than anything. Thanks for being you

Abe aka Paul


Wed Feb 23, 2022 9:56 pm

Hi Paul, I found veganostomy.ca a very helpful website. You don't have to be vegan.

I had an old post called 'working retail with an ostomy' where folks gave me lots of ideas to help with noise reduction. You could have a look at that for starters. 

MeetAnOstoMate - 26,936 members
Wed Feb 23, 2022 9:59 pm

Hi Paul!

     I'm pretty new to all of this myself. 6 months in with continuing changes to the landscape so to speak. 😅 My journey started with a botched surgery, followed by an emergent surgery, a two week hospital stay, and 2 more surgeries. Because my ileostomy was placed emergently, and my body was septic, it's been a bit messy. Lol

     I don't know what your specific needs are for your particular ostomy, but I've required convexity, and a fair amount of building up. I had a trip planned to Cancun the end of January, and I was terrified. I love the water, but an ostomy adds a whole new layer. I ended up purchasing a neoprene Stealth Belt. (Stealth Belt is the company.) I was extremely happy with my purchase. I used one seal on the outside of my flange, but I don't think it was necessary at all. I did not leak, and I felt confident with the support my belt gave. We spent 6-8 hours in the water every day, including ocean waves. It was the first time I felt "normal" and free.

      I don't do a lot in the concealment department. People will either deal with it, or they don't belong in my life. As far as the noisy ostomy moments? Just laugh. It really is funny, and you have nothing to be ashamed of. ❤️

-Rachel

Wed Feb 23, 2022 11:28 pm


RaenotRay wrote:

Hi Paul!

     I'm pretty new to all of this myself. 6 months in with continuing changes to the landscape so to speak. 😅 My journey started with a botched surgery, followed by an emergent sur...

I really like that last part of your post, great attitude to have. 🙂

Wed Feb 23, 2022 11:45 pm


RaenotRay wrote:

Hi Paul!

     I'm pretty new to all of this myself. 6 months in with continuing changes to the landscape so to speak. 😅 My journey started with a botched surgery, followed by an emergent sur...

Oh I do think it's funny, just some situations I'd rather avoid it, I work in live theater so being quiet and not breaking actors focus is pretty crucial. 
my nieces and nephews think it's absolutely hilarious.

The concealment game for me is work situations when I have to wear a 4 point harness for climbing, seat belt safety in the car/cars/planes, as well as playing with my nieces and nephews and pets so it's less concealment than it is protection. 

I certainly could have been a lot more clear, your post was very helpful in pointing that out as was it's humor and candor.

Thanks

Paul

Wed Feb 23, 2022 11:53 pm


AlexT wrote:

I really like that last part of your post, great attitude to have. 🙂

Thank you. It's never easy, but laughing is good for the soul. Choose joy right? ❤️

Thu Feb 24, 2022 12:00 am


RaenotRay wrote:

Thank you. It's never easy, but laughing is good for the soul. Choose joy right? ❤️

Always joy, no reason to be upset everyday mostly about stuff a person can't control. 

Thu Feb 24, 2022 12:14 am


Abefroman1969 wrote:

Oh I do think it's funny, just some situations I'd rather avoid it, I work in live theater so being quiet and not breaking actors focus is pretty crucial. 
my nieces and nephews think it's absolute...

     Isn't it funny how we all imagine everyone's life is like our own? I wouldn't be caught dead on stage or doing anything that requires a 5 point harness. 😅

     I honestly think you should look into the Stealth Belt. They make a more breathable one for everyday wear as well. I chose black and wore black swimsuit bottoms, so there was a camouflaging aspect in that respect. I met an RN from upstate New York who had no idea I had an ostomy. We ended up hanging out several times, and had some great conversation. 

     The beginning is really uncomfortable too. You're still healing, and everything feels precarious. I've found that most day to day things, including caring for my grandchildren, are pretty comfortable now that I'm further in the healing process. Don't worry, you'll find what works for you. If you're anything like me, you'll have lots of funny stories too. ❤️

Thu Feb 24, 2022 12:14 am


AlexT wrote:

Always joy, no reason to be upset everyday mostly about stuff a person can't control. 

Exactly. I only have so much energy. I'm not about to waste it. 🥰

Thu Feb 24, 2022 3:01 am

I ware a tummy sleeve from a maternity shop. It conceals and contains any leaks, no flopping bag. I use when swimming also. 

Thu Feb 24, 2022 9:42 am


RaenotRay wrote:

     Isn't it funny how we all imagine everyone's life is like our own? I wouldn't be caught dead on stage or doing anything that requires a 5 point harness. 😅

     I honestly think you s...

How about a true story? I grew up in western WA in Tacoma and went to Stadium high school, started my theater career at the a Pantages in Tacoma, it was called the Roxy when I saw Star Wars there!



Last edited by Abefroman1969 on Thu Mar 10, 2022 7:44 am; edited 1 time in total
Thu Feb 24, 2022 1:21 pm


Abefroman1969 wrote:

How about a true story? I grew up in western WA in Tacoma and went to Stadium high school, started my theater career at the a Pantages in Tacoma, it was called the Roxy when I saw Star Wars there!

Really?? We've already been neighbors and didn't even know it. 😂 I grew up on Whidbey Island after moving from Florida. My dad was Navy. How did you end up in Massachusetts? Don't you miss our 9 months of rain every year? 🤦🏼‍♀️

Thu Feb 24, 2022 4:44 pm


RaenotRay wrote:

Really?? We've already been neighbors and didn't even know it. 😂 I grew up on Whidbey Island after moving from Florida. My dad was Navy. How did you end up in Massachusetts? Don't you miss our 9...

Oh I absolutely do not miss those days of gray, the year I decided I had enough was something like 110 days without seeing the sun. I had family in MA and after my mother passed away there wasn't anything really holding me there except my Union seniority. Family said they wanted me closer so my sister's  Mother who I call Ma came out and packed up the condo and when I got done with the tour I was on I lived in MA. I don't regret a thing other than not doing it sooner. 
I love 4 seasons, my neighborhood has a private beach and I'm just far enough away from Boston to work there but don't have to live in the city.



Last edited by Abefroman1969 on Wed Mar 02, 2022 7:16 am; edited 1 time in total
Thu Feb 24, 2022 7:42 pm


Abefroman1969 wrote:

Oh I absolutely do not miss those days of gray, the year I decided I had enough was something like 110 days without seeing the sun. I had family in MA and after my mother passed away there wasn't a...

     Yeah, it definitely sounds like you win. Private beach and 4 seasons kinda sealed the deal. 😂

     It's weird reading your history. My Mama passed away at the end of October, and I never thought about moving until then. I do have kids, and grand babies, but I know they would be okay. Just something to think about I guess. 🤷🏼‍♀️

Thu Feb 24, 2022 8:50 pm

Hi.  Living in Florida full time, I'm either in the ocean or pool almost daily.  I, too, have an ileo and wear a two piece by ConvaTec. I suggest you keep things simple.   Check out a wrap from Ostomy Secrets or a Stealth belt.  Good luck. 👍 

Fri Feb 25, 2022 7:46 am


Riva wrote:

Hi.  Living in Florida full time, I'm either in the ocean or pool almost daily.  I, too, have an ileo and wear a two piece by ConvaTec. I suggest you keep things simple.   Check out a wrap from ...

Thank you so much. For now I'm keeping it simple, I'm just worried about kids, pets and cars. My stoma nurse suggested I get the Dr. to write me for a hernia belt that way insurance would cover the stoma protector in the hernia belt and I did have 5 minor hernia's that were fixed when I had my ostomy surgery!

Funny to me anyways, yesterday was my second solo bag change, I was pretty dang proud of myself walking about the house like a rooster, my layout was beautiful and there were no issues with the change, about an hour later I noticed my right thigh was kinda damp and smelled of poo. I checked my pouch and left out one crucial part! I never closed the drain! Got myself cleaned up had a good laugh and told myself to not get cocky and to always double check EVERYTHING! 

Fri Feb 25, 2022 7:54 am


RaenotRay wrote:

     Yeah, it definitely sounds like you win. Private beach and 4 seasons kinda sealed the deal. 😂

     It's weird reading your history. My Mama passed away at the end of October, and I n...

It's all about what makes you happy. I certainly missed my Drs and specialists when I moved, but that was really about it. Luckily my sisters Mother has taken me as her own and wasn't going to take no for an answer.

im super lucky that I found my 4 sisters and their Ma through my theater travels and that they wanted a relationship. My father didn't do the right thing coming back from Viet Nam and abandoned me an my mother so I grew up on the struggle bus with Mom doing everything she could to make sure we had the basics. My mother was able to meet my sisters before she passed and gave her blessing for me to come and be close to them once she had passed.

Oh and don't ever call my sisters or their Ma my step sisters or step Ma, they are like rabid badgers once anyone suggests we are less than a whole family.

Im a very lucky man in this regard. 

Paul

Fri Feb 25, 2022 6:12 pm


Abefroman1969 wrote:

It's all about what makes you happy. I certainly missed my Drs and specialists when I moved, but that was really about it. Luckily my sisters Mother has taken me as her own and wasn't going to take...

     We are a lot alike you and I. Family is family. Sometimes by blood, and sometimes by chance. I have a big, crazy family, and they're my world. I'm learning that it's okay to love them, care for them, but not let it consume me. It's been a tough lesson, but I may just move somewhere warm eventually. We'll see. 😉

     I'm so glad you found your people. Especially during this crazy time in your life. People that love you unconditionally make all the difference. They're my favorite people to make inappropriate jokes concerning my every day struggles. 😂

Mon Feb 28, 2022 10:14 pm

I've had an ileostory for quite a while.  I have found Coloplast mio 2 piece works best for me.  In addition, I use the convetec seals (the thinker ones). As far as gas, I use Simiticone or generic GasX right before or after some meals to greatly reduce the effects of pillowing of the ostomy pouch.  Since I have a hernia I use a Nuhope hernia belt.  So be careful lifting heavy things so you don't get a hernia.  My ileostory is below my waist, so when I use a seatbelt I make sure it is about the stoma.  Hope that helps someone.

Tue Mar 01, 2022 7:33 am


ChickenLegs wrote:

I've had an ileostory for quite a while.  I have found Coloplast mio 2 piece works best for me.  In addition, I use the convetec seals (the thinker ones). As far as gas, I use Simiticone or gener...

The gas bit is very helpful, I had a massive pillowing last night that ruined the adhesive seal and I had to change the pouch first thing this morning after TPN finished, I did burp the pouch several times before bed, the convatec gas relief valve appears to be cosmetic, I don't get it wet and it still pillows and doesn't release any gas. I'm still on the convatec line that I woke up with after surgery and am not all that impressed. My stoma nurse has ordered me a hollister and coloplast? Sample kits, I'll have her show me how to attach the hollister first then the second sample the following week. I also just got my first piece of ostomy clothing, a horizontal pouch wrap/belt. Have yet to try it, last time I tried horizontal it worked great for 3+ days but burst on 4th with no support, hoping the belt cures it. Also getting the vertical pouch holder, the swim wrap, a muffler, and a protector/belt for playing with the dogs and kids and so I can hopefully go back to work in July roughly. Thanks a million for the tips, they do help a lot! 

Tue Mar 01, 2022 9:39 pm

Glad to hear the gas bit is helpful.  Before I eat I try to take generic Imodium some people us Lomotil to firm the stool.  I change the wafer and pouch every 3 days or sooner.  My skin is a big problem so  I need to make sure the skin below my wafer doesn't get irriated or broke open.  I whate Dove soap to cleanse the area around the stoma, rinse and dry with a paper towel, then use adhesive remover and a skin protectant every time I change my wafer and pouch.  I use Adapt deodorizer in the pouch.  Before the ileostomy I had a colostomy for many years.  By the way, I've had Crohn's for at least 23 years.

You are welcome and hope this information help you and others .

Wed Mar 02, 2022 7:07 am


Anonymous wrote:

Hi Paul, I found veganostomy.ca a very helpful website. You don't have to be vegan.

I had an old post called 'working retail with an ostomy' where folks gave me lots of ideas to help with noise re...

How do you know a vegan is a vegan?

Dont worry they will tell you! 


Wed Mar 02, 2022 7:58 am


Abefroman1969 wrote:

How do you know a vegan is a vegan?

Dont worry they will tell you! 

😁

Fri Mar 25, 2022 6:29 pm

I will never order from pouchwear again, order placed 3/10/22. I’ve called twice and emailed twice, had to track down their other site on Etsy and ask whiskey tango foxtrot is going on with my purchase and zero communication? I was told to anticipate I would hear back from the dispatching team as to when my order shipped on a follow up contact. Well shame on me I believed them. My order still hasn’t shipped nor have I heard from anyone outside Etsy. The stomaguard I ordered from Germany the same day arrived today at my home. 
Horrendous/absolutely zero customer service. Yet the sales team is hard at work. 
End rant 

🤬


Fri Mar 25, 2022 6:32 pm


Abefroman1969 wrote:

I will never order from pouchwear again, order placed 3/10/22. I’ve called twice and emailed twice, had to track down their other site on Etsy and ask whiskey tango foxtrot is going on with my pu...

So sorry this happened to you Paul. I'm about to have a glass of wine...pour yourself one. 🍷🍷 Cheers my friend

Thu Apr 07, 2022 4:24 pm


ChickenLegs wrote:

Glad to hear the gas bit is helpful.  Before I eat I try to take generic Imodium some people us Lomotil to firm the stool.  I change the wafer and pouch every 3 days or sooner.  My skin is a big...

Hey CL, I just wanted to share my thoughts about avoiding skin problems.  I was told to avoid Dove because of its moisturizing properties.  My WOCN lady said to use an adhesive remover first, then wash the area with Ivory soap or another with no skin moisterizers or fragrances and rinse and dry thoroughly.  I use a hair dryer.  If we use the adhesive remover after washing with soap, some of it can remain in the skin and compromise the seal.  The skin protectant (barrier film) is important. Just something to think about.

Respectfully,

Mike

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