I have in the past also used a pair of my daughters very tight tights... cut to size and then put my sewing skill to use...
Both seem to work for me and I wear tee-shirts alot and no-one can notice..until it erupts that is then I need a duffle coat to hide it...lol
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.
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 integrety". I think this might mean fraying. http://www.compressiondynamics.com/compress_links/Product_Sizing_Guide_2011.pdf
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 calfs - extraordinary pain problems - can barely stand pressure and touch. Regular compression garments wouldn't work either.
The product was recommended mostly because is worked with the irregularities of Dercums hills and valleys and has fewer uncomfortable pressure points. A bit different in design and seems like it might be better for me.
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!
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
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 of advice. Knowing there are people here who care makes all the difference. Take good care, Colm
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 have a great selection which go on sale occasionally. The elastic is not too strong - this is important as you don't too much pressure against the Stoma. These slim my bag when full and allow me to wear skirts, dresses, and skinny jeans.
I've tried a few of the fancy (and expensive) belts I've found on the internet but I always go back to the home made ones because they are more comfortable.
She is working on a new design using old boxer shorts to achieve the same goal. Only problem is....I don't wear boxer shorts!
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" waste.
|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 cause they help to conceal your bag without restricting the flow of output. Hope this helps you some!!
i modified my hernia belt toake 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.