Need advice for parastomal hernia belt - stoma bulges out

Replies
23
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1385
Justbreathe
Jul 20, 2022 5:20 pm

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. The 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. The 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?

AlexT
Jul 20, 2022 5:38 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.

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Past Member
Jul 20, 2022 5:46 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 what 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!!

HenryM
Jul 20, 2022 5:54 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.
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AlexT
Jul 20, 2022 6:06 pm
Reply to HenryM

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.

 

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AlexT
Jul 20, 2022 6:08 pm
Reply to Anonymous

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.

Justbreathe
Jul 20, 2022 8:27 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 the hernia continues to expand, surgery may be in my future. YIKES

Mellie
Jul 20, 2022 10:52 pm

Hi, I also have developed a parastomal hernia. It's not pleasant and painful. Instead of the belts, you could try supportive underwear. It's 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 undergarments you could try.

Justbreathe
Jul 21, 2022 12:55 am

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.

AlexT
Jul 21, 2022 6:07 am
Reply to Justbreathe

Have you tried just an 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.

Justbreathe
Jul 21, 2022 10:39 am
Reply to Anonymous

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

Justbreathe
Jul 21, 2022 10:46 am
Reply to AlexT

Will look into the wrap... thanks for the tip.

Abefroman1969
Jul 21, 2022 12:52 pm

I have the Nu-Hope belt and was told to always put it on lying 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.

AlexT
Jul 21, 2022 1:22 pm
Reply to Justbreathe

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.

Justbreathe
Jul 21, 2022 4:06 pm

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!

IGGIE
Jul 22, 2022 6:22 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.

AlexT
Jul 22, 2022 7:00 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 of years, I have no idea how some of the people on here manage just simple everyday tasks.

Justbreathe
Jul 22, 2022 10:49 am
Reply to IGGIE

Please keep me posted, brave soul!

Justbreathe
Jul 22, 2022 10:54 am

Stealth body and hernia belt - oh my and uh no - there's a reason it is not called "DE-DUCT" tape!

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AlexT
Jul 22, 2022 1:48 pm
Reply to Justbreathe

She's gotta be single, way too much work to get to the goods.

Justbreathe
Jul 22, 2022 8:26 pm

Perhaps this is the exact reason she designed it.

Past Member
Jul 22, 2022 8:39 pm
Reply to IGGIE

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

Abefroman1969
Jul 22, 2022 10:20 pm
Reply to Anonymous

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 on how you both are doing after.
Best of luck to you both with the procedures.

Old Bud
Jul 31, 2022 9:30 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.