DIY Ostomy Belt/Wrap - Need Help!

Hello all - I was wondering if anyone has made their own ostomy belt, wrap, underwear, etc. I have hunted the web for a free sample and I can't seem to find one. I use the belt that was supplied to me in the hospital, but it moves around all of the time and drives me insane. It does not matter how I adjust the damn thing; it never stays in place. Stefan is in a low spot and I am very small in stature. I have seen a tip to use a tube top, but since it's winter, I'm not sure where I would find one to try. Any help would be great. Thanks a bunch, Terry.

As a cover for my bag when going out for a meal or more frequent times of late, I use an elasticated support bandage. You can buy them in all lengths and sizes. I cut mine to about 7 inches and it's just enough tension not to restrict me.
I have in the past also used a pair of my daughter's very tight tights... cut to size and then put my sewing skills to use...
Both seem to work for me and I wear t-shirts a lot and no one can notice... until it erupts, that is. Then I need a duffle coat to hide it... lol

They have bands for pregnant women for abdominal support that are the same idea as a tube top. There are some online called Belly Bands (I think), and I don't know if you have Target stores, but they have some that are cheaper and work the same. They come in black, white, and nude and look like you are just layering with a camisole or something. They are nice because they help to conceal your bag without restricting the flow of output. Hope this helps you some!!

Good luck,
Kellie

Hello Tess45,
I have tried a few things (mainly for hernia support) and the best of them so far has a belt that I can adjust using velcro as the holding device.  These belts have the disadvantage of being far too wide for me so I fold them over. So, I'm thinking I will make a belt to just cover the stoma and the hernia region (behind the stoma) about 3"-4" wide.    There are medical elasticated bandages that will probably do the job and then it would be just a matter of sewing the velcro fastener to it. I don't need a hole for the stoma as I wear stoma plugs. However, if I did need a hole I would think about cutting a small hole for the stoma and sewing some material onto the bandage to stop it fraying. Also the hole would probably need to be burnt out rather than cut as cutting would leave a frayed edge that would probably run.(like a ladder in tights).  It's all a matter of experimenting until 'we' find the right solutions.   If you find or make something that works even reasonably well, please let us all know so that we may resolve the problems for ourselves as well.
  Best wishes  
Bill

Hi Terry. In fact, my recent project is making my own pouch covers. I'll let you know how it turns out. In the meantime, there are companies like "Ostomy Secrets" and "Weir-Comfees" that sell these products. I like the wrap from OS and the underwear. I want to try the boy pant from WC. I double up on undies, granny panties covered by hipsters. And men's boxer briefs are comfy. Good luck!

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I cut the bottom 8 inches off an old shirt to make a belt and added a couple of bits of Velcro to it so I could adjust it. It was more for concealment at the time. Since my last op, I'm making a revised version to make it more comfortable for when I go running.

Hey Bill, I think I have found something for small people - I went out and bought a little girl's training bra - yes, a bra (almost like a tube top) - I just cut the straps off and it fits just like a wrap or small hernia belt - it has the added bonus of looking cute as opposed to butt-ass ugly - I guess I'll have to see if it holds up over time. My Wound Care Nurse is the one who suggested it to me.

I was looking at some possible solutions for another health problem (Dercum's Disease). I found something that might be helpful to some of us who would like some sort of torso support for hernia or to just hold bag and everything in place. I currently use a stretchy type tank top.

I have not used this yet and can't make a recommendation but it looks like something worth considering. I plan to order the torso item. It can be cut without "compromising the integrity". I think this might mean fraying.http://www.compressiondynamics.com/compress_links/Product_Sizing_Guide_2011.pdf

Hi Carol, just had a look at your link and it reminds me of the anti-embolism "stockings" I had to wear after surgery. If the fabric is anything like that for the torso, I'd imagine it would be ideal for supporting the hernia. I'm actually on the lookout for a parastomal hernia support, but will probably hold off until after the surgery and see what my consultant recommends. Sounds like the ideal solution though. Thanks for posting and take good care, Colm

Colm, I have your reversal date as the 24th. Still on for then? I will be thinking about you and holding good energy for a quick recovery.

After my surgery, they had me in some sort of boot contraption that caused me so much more pain that I finally just refused to wear them. Oversized calves - extraordinary pain problems - can barely stand pressure and touch. Regular compression garments wouldn't work either.

The product was recommended mostly because it worked with the irregularities of Dercum's hills and valleys and has fewer uncomfortable pressure points. A bit different in design and seems like it might be better for me.

Hi Carol, yes still happening on the 24th. I have to be in the hospital at 8am on the 23rd... for tests, I guess. Thanks so much for the encouragement too. I need it all!
Gosh, I do hope you find some comfort with this new garment. Have you found a similar forum for Dercums? It would be wonderful having a little support from those in a similar situation. I don't think I'd be half as positive about going for surgery had I not been able to chat here. Here's wishing you better days, and I'll keep you in my prayers to find some comfort from this Dercums!

The Dercums blog is discouraging (for me). Lots of people trying lots of things. Nothing positive that encourages me in any way. One person is gathering data on commonalities among medical histories of individuals with Dercums (hope there). The disease overlaps symptomology wise with fibromyalgia and chronic fatigue (some thyroid). Autoimmune. There seems to be only one doctor in the United States that is researching the subject.

Several years ago I found one doctor (pain specialist) that had heard of it and understood the pain proces of pressure and nerves - neuropathic pain. He asked to take pictures for training purposes. Of course, I let him. He tried the lidocane drip that is frequently recommended - no results at all. Narcotics is treatment of choice. Published research literature is difficult to find (especially United States). Not much research into rare diseases. I probably won't continue reading the site.

There is support and encouragement for each other but NO solutions or successes. The site confirms that it is progressive until one dies - often after years of disabilities. I function best with research and options.

I am pleased that my ostomy surgery didn't create any new Dercum's problems - it frequently does. I am relative at ease with my situation now. Several months ago I 'withdrew' from doctors and from medications. No doctors and no meds for me. I use some supplements with some success. And I find all kind of interest and support on this site as well as answers for the few ostomy situations I have had. So I am okay with life as it is at the moment. I have discovered many ways of fulfilling myelf and creating contentment.

And I love it when friends, like you, can look forward to the possibility of dramatic changes with significant improvements. I might comment on the suicide forum at some point. The view might be different when there is no option for improvement. I wonder if there will ever be a point of "allowing" death to occur with ease.

One of my outlets is rambling - as you see.Carol

Oh Carol, please don't feel you're rambling. I'm always here to listen. You've been a great source of energy for me to date. And I know you still have plenty more energy, support, and advice to give us all. Like your good self, I'm finding very little information on my own situation, but I keep reading and researching too.

We can only keep supporting each other here and chatting about our own situations and circumstances lets us blow off steam. Like one of our phone companies says, "It's good to talk!". For too long, I used to bottle up feelings and it got me nothing but anxiety attacks. I've now begun to feel a little more in control and this whole period in my life has given me a whole new set of priorities.

Keep talking is my best advice. Knowing there are people here who care makes all the difference. Take good care, Colm

I've had my ostomy since Feb 2011. I'm shaped such that my ostomy is hard to cover with underwear, bands, or shirts. I'm short in the inseam but long-waisted, slim-waisted, and wide-hipped!

I've tried ostomy underwear and like it; however, I bought the wrong size! I've tried bands, but they roll up. I've tried ostomy bag covers and like them, but I also like to wear snug clothing and I like to conceal the bag. I've shopped for off-the-shelf underwear and found that high-waisted underwear created for slimming the tummy work really well. DKNY is sold at The Bay and has a great selection which goes on sale occasionally. The elastic is not too strong - this is important as you don't want too much pressure against the stoma. These slim my bag when full and allow me to wear skirts, dresses, and skinny jeans.

Thanks, Toodie - I will try that avenue as well - so far, the teen bra that I am using is not too bad of a solution, but I do need something a bit wider - Terr

I found a site where you can order ostomy supplies, belts, almost anything to do with an ostomy, and you only pay shipping. Awesome site, they are based out of Florida. Their website link is as follows.... ostogroup.com and their phone number is 1-877-678-6690. I know you asked for a way to make the belt yourself, but why not get one that you know will fit right and cost under $5.00. Good luck. Oh, their supplies are donated, so they might not have exactly what you are looking for, but if you give them a call, they will help you find what you need.

Roostered - I need a little more info on the website - if you go to just Ostogroup, it just leads to another list of websites - which one are you talking about? Thanks, Terry

My wonderful wife makes a pouch holder for me that really works well to hold it in place. She takes the elastic band from my old brief underwear (cuts off the fabric to just leave the band), and sews a bag onto the front of it made out of an old handkerchief. The bag is just large enough to tuck the end of the pouch into. As the pouch fills up, it is supported by the bag so it just doesn't hang loose. These are not real fancy and very simple to make. What they are is a real comfort to wear and an easy way to keep the pouch separated from your skin. Great in hot weather.
I've tried a few of the fancy (and expensive) belts I've found on the internet but I always go back to the homemade ones because they are more comfortable.
She is working on a new design using old boxer shorts to achieve the same goal. The only problem is....I don't wear boxer shorts!

Kellie (or anyone)

What size belly bands would a guy buy? I checked into this once on Amazon.com and could not decide what size to get. They do not state them in "inches", only in trimester. I am about 33-34" waist.

Thanks

I modified my hernia belt to make it fit better by sewing 4 darts into it.

Hello funnygirl.  Thanks for resurrecting this post as I had forgotten it existed.

I found a firm called CUI International that made hernia belts for me. They are elasticated and fix with velcro so they are always the right pressure because I adjust the pressure as I put them on. However, when they get really old, they stretch too much  so I just fold a flap over and sow it across and the belt to shorten it and it is then okay for another round.

Eventually, I suppose I'll have to throw the old ones away but I am reluctant because they are very useful for experimenting with.  

Best wishes

Bill