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Parastomal Hernia

Wed Jul 20, 2022 12:20 pm
"This is the best website for people with an Ostomy, hands down. So much understanding. Everyone should join."

 I have a parastomal hernia and have been told, by a surgeon, it is common with an ileostomy.  Two ostomy nurses measured and ordered a hernia belt for me.  It is a Nu-Hope belt supposedly fitted to accommodate my size hernia/stoma.  Problem is, whenever I wear it my stoma bulges out as though it might pop.  Not a pretty sight and not comfortable at all.  They tell me to try wearing it for short periods of time to get used to it but when wearing it my stoma seems to bulge out more than usual.  I avoid pulling the belt too tight knowing this may be the problem.   Current plan is to contact another stoma nurse and question and ask for further information/direction but just wondering if anyone else has this issue and any advice?

Wed Jul 20, 2022 12:38 pm

Technically, we all have hernias. I looked at those Nu-Hope belts but I ended up getting a vertical Stealth Belt. The thing I didn’t like about the NU-Hope one(at least the one I looked at, maybe there’s different models 🤷‍♂️) was the fact it didn’t actually hold the bag along with adding support around your stoma. The Stealth belt does both for me, adds support around my waist/stoma and also holds/conceals the bag itself. Plus, it kinda hides my love handles and gives me a funky ass tan line, but those are just individual specific benefits for me. 😁

MeetAnOstoMate - 27,282 members
Wed Jul 20, 2022 12:46 pm

Hi

I am going through this right now. Tried every appliance without success with multiple leaks and shortened wear time. Spent $ on a hernia belt and now they tell me that the belt shouldn’t have a hole 🙄Duh-no wonder my bulge went through it and looked like I was pregnant!! I scrapped the belt and never wore it again. Broke down in tears even went to a plastic surgeon who wouldn’t touch me -finally got a surgery date next month to get the peristomal hernia repaired as my depression and anxiety is through the roof-I’ve been back and forth wondering if I should have another surgery but what’s the worst thing that can happen and  I’m back to dealing with the 💩 I’m dealing with currently??!! The anxiety of not wanting to leave the house or be around people for fear of a leak/blowout?!! Absolutely no way to live!!

Wed Jul 20, 2022 12:54 pm

I wear the Safe 'n Simple ostomy security belt.  My parastomal hernia doesn't bulge enough to be a problem, but I wear this occasionally, like walking outside the morning that I've changed the appliance.  It doesn't seem to affect my stoma in any manner.

Wed Jul 20, 2022 1:06 pm


HenryM wrote:

I wear the Safe 'n Simple ostomy security belt.  My parastomal hernia doesn't bulge enough to be a problem, but I wear this occasionally, like walking outside the morning that I've changed the app...

I looked at that one too. I’m pretty fortunate since I don’t have constant output like those with ileostomies. I’d wear a belt 24/7 if I did. 

Wed Jul 20, 2022 1:08 pm


Barbyh wrote:

Hi

I am going through this right now. Tried every appliance without success with multiple leaks and shortened wear time. Spent $ on a hernia belt and now they tell me that the belt shouldn’t hav...

Could you wear a wrap that adds a little support and holds your bag? I would think there has to be a setup that could prevent the leaks. 

Wed Jul 20, 2022 3:27 pm

Wow - now I am really confused.  First I am fortunate in that I have only had one leak in almost 2 years and that was a new product failure.  Wearing a belt to prevent a leak is not an issue for me.  I’ m not sure how you would wear a belt with no hole for the ileostomy stoma - thinking this would cause pancaking and major backup.  I have searched Google and Amazon and it looks to me like there are only a few choices.  Pressure on the hernia to keep it from expanding and the need to give an “out” for the stoma just does not compute and my end result is a bulging stoma.  I am a candidate for a reversal of the ileostomy but fear any more surgery at my age (soon to be 79).  If hernia continues to expand surgery may be in my future.  YIKES

Wed Jul 20, 2022 5:52 pm

Hi I also have developed a parastomal hernia not pleasant and painful. Instead of the belts you could try supportive underwear its not perfect but it does help to feel supported. I wear them and pull them right up lol over my bag and hernia it makes me feel less self conscious about it sticking out. There are a lot of different supportive under garments you could try. 

Wed Jul 20, 2022 7:55 pm

I do wear skinny jeans and stretch pants with long tops and they are very comfortable and do hold in my stoma somewhat.  I just don’t want to choke my stoma.  The tight clothing does help and thanks for the suggestion on the underoos .  If output is not thin I do experience pancaking with tight clothing but this is better than a bulging stoma.

Thu Jul 21, 2022 1:07 am


Justbreathe wrote:

I do wear skinny jeans and stretch pants with long tops and they are very comfortable and do hold in my stoma somewhat.  I just don’t want to choke my stoma.  The tight clothing does help and t...

Have you tried just a ostomy wrap? The Vertical Stealth belt doesn’t choke my stoma and you can make it as loose or as tight as you like. My biggest issue is always pancaking no matter if I have a belt,wrap, or nothing over my bag. At my daughter’s wedding last year, I was wearing a wrap and dang near filled my bag on the way to the reception. It didn’t restrict any flow, if it wants out it’s coming out. 😁 

Thu Jul 21, 2022 5:39 am


Barbyh wrote:

Hi

I am going through this right now. Tried every appliance without success with multiple leaks and shortened wear time. Spent $ on a hernia belt and now they tell me that the belt shouldn’t hav...

Please, please keep us posted regarding your upcoming surgery.  Wishing you the best.

Thu Jul 21, 2022 5:46 am


AlexT wrote:

Have you tried just a ostomy wrap? The Vertical Stealth belt doesn’t choke my stoma and you can make it as loose or as tight as you like. My biggest issue is always pancaking no matter if I have ...

Will look into the wrap …thanks for the tip.

Thu Jul 21, 2022 7:52 am

I have the nu hope belt and was told to always put it on laying down so the hernia is as flat as possible. The nurse gave the old horse is already out of the barn analogy about trying to put the belt on while standing. I also have a vertical belt, wrap and bag cover from pouchwear( trust me just don’t) a coloplast hernia belt (haven’t worn it yet) and a knock off horizontal stealth belt from the UK. Out of them all I prefer the knock off stealth belt, so much so I’m going to get the actual stealth belt now. The nu-hope is by far the most uncomfortable and digs into my body, I usually only wear it after an appliance change to make sure the adhesives are stuck then remove it. 

Thu Jul 21, 2022 8:22 am


Justbreathe wrote:

Will look into the wrap …thanks for the tip.

The wrap I have is from OstomySecrets. Very simple as it has a pouch(actually 2) sewn in to hold your bag and it’s just snug enough to support it if it fills and is just a little snug around your waist to give a little support around your whole midsection. Both the wrap and belt I wear are very comfortable to have on. 

Thu Jul 21, 2022 11:06 am

Still researching- appears I would need a “vertical” as opposed to horizontal 

have a call into an ostomy nurse to answer a few more questions then hopefully will pick one that is suitable and dutiful !

Fri Jul 22, 2022 1:22 am

I have a parastomal hernia and instead of putting up with it I will be having it removed on the 3rd August 2022. You don't have to persevere with it. 

Fri Jul 22, 2022 2:00 am

No, but some people have been chewed up and spit out so much that going in for something else is a little overwhelming. I thought I had a tough go for a couple years,  I have no idea how some of the people on here manage just simple everyday tasks. 

Fri Jul 22, 2022 5:49 am


IGGIE wrote:

I have a parastomal hernia and instead of putting up with it I will be having it removed on the 3rd August 2022. You don't have to persevere with it. 

Please keep meet posted brave soul !

Fri Jul 22, 2022 5:54 am


Justbreathe wrote:

Still researching- appears I would need a “vertical” as opposed to horizontal 

have a call into an ostomy nurse to answer a few more questions then hopefully will pick one that is suitable an...

Stealth body and hernia belt - oh my and Uh no - there’s a reason it is NOT called “DE-DUCT”  tape !

Fri Jul 22, 2022 8:48 am


Justbreathe wrote:

Stealth body and hernia belt - oh my and Uh no - there’s a reason it is NOT called “DE-DUCT”  tape !

She’s gotta be single, way too much work to get to the goods. 😮😁🤭

Fri Jul 22, 2022 3:26 pm

Perhaps this is the exact reason she designed it. 🤔😝

Fri Jul 22, 2022 3:39 pm


IGGIE wrote:

I have a parastomal hernia and instead of putting up with it I will be having it removed on the 3rd August 2022. You don't have to persevere with it. 

I’m right behind you Iggie and going for my surgery Aug.31 -do keep me posted how you make out please!

Fri Jul 22, 2022 5:20 pm


Barbyh wrote:

I’m right behind you Iggie and going for my surgery Aug.31 -do keep me posted how you make out please!

I don’t have a date yet but am told that they will fix mine along with the prolapsed ileostomy and Barbie butt all at the same time! Yay me! Please also keep me posted how you both are doing after. 
Best of luck to you both with the procedures. 👍

Sun Jul 31, 2022 4:30 pm

I use a nu hope belt with a hole for the stoma and a prolapse strap to keep the stoma from popping out. I have a 4 inch wide and a 7 inch wide i wear for work. I wear it quite tight and it seems to work better. I have been through many belts but this feels the best. Good luck

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