Not to tight please!

[Kaleena]

Hello out there! I have lymphedema in my thighs and have been trying to find compression pants that won't put pressure on my abdomen and colostomy. So far I haven't seen anything. Not sure if compression capri pants for pregnant women might be the solution. I cannot tolerate the pressure on my colostomy or abdomen; it makes me feel sick. Any suggestions? I do need to aid in treating the lymphedema by wearing some compression. Thanks for any suggestions. Kaleena

[Lynora]

Kaleena - are you in the USA? Some compression manufacturers will cater for stoma patients. If you let us know where you are we try and advise.

[Kaleena in reply to Lynora]

Yes, Lynora. I live in Massachusetts. I would be most grateful for a reference. Thanks so much!

[Lynora in reply to Kaleena]

Do you attend a Lymphedema clinic, or a Lymphedema therapist? They may have contact with companies like Juzo or BSN who can make bespoke garments with stoma apertures. I’m sure our US members will be along soon to give advice (this site is based in the UK).

[Kaleena in reply to Lynora]

Yes, Lynora, I do attend a Lymphedema clinic and my therapist has been working hard to find me the right garment. We recently tried some Capri bike pants from a place called Aero-Tech. Like all the others they are too tight and the waist falls in the wrong place for me: across the abdomen and too close to the colostomy. I'm still so tender in the abdominal area. I go to see her again this week and will see what is next. I thought of getting something that a pregnant woman would wear, but not sure how to size it (since I'm not pregnant!). As you said, perhaps some US members will come up with some good suggestions! Thanks! Cheers!

[Chocolate-e-clare]

Hi Kaleena - I'm in Texas (therapist). Yes, you need to find a therapist near you or a good fitter - Jobst, Juzo and Medi are the major companies who make custom-made garments for lymphedema. Do you need coverage over your abdomen/buttocks, or just over your thighs? Just asking, in case you just need thigh high garments. I'm also a member of the Lymphedema Facebook group - nearly 9000 members there - I can ask your question of the group and see what they suggest. There will most likely be other people out there with lymphedema and colostomy. Feel free to friend/contact me. Cheers!

[Kaleena in reply to Chocolate-e-clare]

Thank you, Chocolate-e-clare! (Love the name). I need coverage over the thighs and pubic area, the abdomen is fine. The issue with just thigh-high garments is that I have a hard time keeping them from falling down. One type uses a cloth belt that attaches with velcro. When I wear it (one on both legs) the belts, although soft, cross over my abdominal area and sometimes catch the left side where my transverse ostomy is. I'm still very tender in the abdominal area and my colostomy doesn't like the pressure! Does the FB group have a name? Thank you so much. My therapist has been searching for me as well. So far nothing has panned-out! I'm hopeful. Best to you!

[Chocolate-e-clare in reply to Kaleena]

Hi Kaleena - there are several lymphedema groups on Facebook. Lymphedema, Lymphedema - Support, Awareness …. There is also a site, Inspire - which has a chat group as well. It sounds like you need a special garment indeed. I hope that you can find one. Your idea about pregnancy hose might be a good place to start (won't compress the pubic area much, but will relax pressure over your tummy). Ideally, you would have a custom made set of compression stockings with a hole for the stoma, and an adjustable waist strap to accommodate your abdomen. Sounds doable - hope your insurance will come to the party and help fund this. Fingers crossed! xo

[Naomibling]

Hiya,

I’m in the United Kingdom, I’m not too sure if I have lymphodema in my thighs as when I get cellulitis it’s usually my foot, I wear compression socks and have done since I was 18 I’m now 33.

My mum suffers with chronic lymphodema in both her legs, I’m just about able to weightbare now on my foot I just had cellulitis in, however I’m still using one crutch, underneath and around my foot is peeling but underneath is quite sensitive, I’ve never had peeling skin with this before, I’m applying dermal cream, it’s such a long winded process

[2198224]

Hi Kaleema. I'm in small town Montana with a urostomy since Nov. 2017. I have similar concern that you do. The custom-made capris that are measured to be exact for an opening for the stoma are very expensive, nearing $1,000 according to my lymphedema therapist. So I decided to create my own. :-\ I sent for a Medi size C capri (doesn't have mmHg designation but I guess 18-20. Took it to a seamstress who cut a round hole in it for the stoma and made a smaller hole below for the tubing to exit to a leg bag. Didn't work because the pouch area bulged out 1-1/2" and hurt. So I had her create a velcro closure over the stoma hole. I thought it would work fine, but it didn't (another accident in a meeting). Last month I went to a stoma nurse in a larger city who recommended I go with an expensive custom capri. I haven't yet, and am going to try a different idea first: I learned important info from the bigger city stoma nurse: the custom items have a slit cut in them, not a round hole. And the entire pouch goes through the slit to the outside! In my idea, there was just too much compression on and bending of my drain tubes. With colostomy, you don't have that issue, so getting a Medi capri for about $70, having a seamstress measure where to cut while you are wearing it, then having the seamstress reinforce the cut edges might work just fine. If you are in or near a major city, you might want to run this by a long-time stoma nurse there before going ahead with it. I did have my lymphedema therapist measure me for the capri we purchased. It was too large and we sent it back for the smaller size C.

Too much info, but I hope some of it is helpful to you. Best of luck figuring it out.

[Kaleena in reply to 2198224]

Thanks so much for your recommendation. I see my lymphedema therapist tomorrow, Thursday, and I'll bring the Capri pants I bought and see what we can do with the opening to the colostomy. Most grateful for your thoughts and will let you know how it turns out.