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2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603

   Posted 5/4/2011 4:48 AM (GMT -6)   

everyone,

 

i started wearing an ostomy belt yesterday for the first time and find it's really great and comfortable. i always thought it would be very uncomfortable to wear one, but actually it's so comfortable that i don't even feel it's on me at all. and most important, since my stoma has retracted even more lately, the belt helps it stick out a bit more. i just wondered, do you all also sleep with the belt?

 

thank you!

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Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115

   Posted 5/4/2011 7:17 AM (GMT -6)   
When I use them I do keep them on at night...so glad you found something to help!

Do you have more than 1? They can be washed in the washing machine and air dried:)

formally known as OHIO76 honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

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Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111

   Posted 5/4/2011 7:32 AM (GMT -6)   

Hubby keeps it on 24/7 as he finds it does help. I ordered the NuHope support belt weight 4" size. Hasn't used it yet but we thought it might be wise to give some support to the stoma area when he gets back into golfing and when doing things around the house that may be a bit of a strain.

64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

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2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603

   Posted 5/4/2011 7:35 AM (GMT -6)   

thanks OHIO - i'm still used to call you OHIO :) i have just one - a stoma nurse gave it to me yesterday to see if i liked it. so i'll have to order some more. yeah, she told me i can put them in the washing machine. i slept with it last night and it didn't bother me at all. she said that after about 2-3 mons of wearing the belt, the stoma will stick out more on it's own, so that is great. i will keep wearing them from now on. thanks again lots.

Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

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2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603

   Posted 5/4/2011 7:39 AM (GMT -6)   

thanks UC wife :) is your husband's stoma also retracted? is the NuHope support belt different from hollister's ostomy belt?

Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

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windy city
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Date Joined Dec 2010
Total Posts : 607

   Posted 5/4/2011 11:57 AM (GMT -6)   

Had surgery last year & because of weight gain and more pronounced incision/scar dips, wear time was decreasing.  Convatec nurse sent me a belt and this increased my weartime to 11 days or so.  At same time started using Eakin seals, but think because my stoma became so retracted, the belt was the solution.  I wear it day/night except with certain clothing that I seldomly wear (some jeans/sheer dresses)...I use my discretion.

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2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603

   Posted 5/5/2011 10:15 AM (GMT -6)   

thank you both. well, it seems everyone also sleep with the belt. Windy, WOW.... you're able to keep a wafer for 11 days!!!! that's a lot.... doesn't it cause you some skin issues?

Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

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windy city
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Date Joined Dec 2010
Total Posts : 607

   Posted 5/5/2011 1:05 PM (GMT -6)   

Hodaya...yes, can you believe it!!! In the beginning I did get 8-11 days using the stomahesive paste. Then, at the beginning of this year, with gaining all my presurgery weight back, this caused more dips (had open incision), and going to the gym...decreased to 4/5 days. Still good though. Then couple of times used Eakin 2" and gave same duration, but gave me everso slight redness around stoma (still have that same redness, no itching or irratation, I just keep a watchful eye on it). Called the nurse and she sent me the belt and immediately 11 days! I've been lucky and thankful with the stomahesive paste, the wafer adhesive, the Eakin, the prep, my skin hasn't reacted negatively. Last change, tried the stomahesive paste again after not using it for 4 months, had a terrible blowout 3 hours later, as I was out dress shopping with my 7 year old and we were in the dressing room together. Yikes poor girl, she screamed and I had absolutely no indication as I use the A/L sure seal and it kept it somewhat in. Eakins it will be!!

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2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603

   Posted 5/5/2011 1:32 PM (GMT -6)   
hey that is awesome you're able to have such a long wear time!! OMG i can't imagine what it's like to have a blowout in a dressing room of a dress shop...... it must have been horrible.. how did you manage the situation???

question, have you tried hollister's adapt rings? i use them, as they are the best product here in israel. we don't have eakins, so never tried them. which did you find is better, the adapt rings or eakins? the thing is, with sure seals it seems i can keep the wafer forever lol, but the adapt ring cant hold for more than a week (for me) and after a week i start to feel the itchying. is the eakins more durable?

Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

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stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059

   Posted 5/5/2011 1:44 PM (GMT -6)   

I have never worn or even tried an ostomy belt but I'm lucky in that the wafers and bags I use stick really well without seals or paste. I usually get 7-9 days wear from the wafer.

Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

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2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603

   Posted 5/5/2011 2:13 PM (GMT -6)   
wow...... 9 days!!! you guys are amazing!! well, to be more specific, i don't use the sure seals. i tried them for the first time couple mons ago and they are really great with improving the wafer's wear time. but the thing is, i use coloplast sensura, the wafer (w/o sure seals) usually holds for a week, with sure seals it can hold for.. i don't know, but say for at least 2 weeks for this matter. BUT the adapt ring melts after a week anyway, so what's the point extending the wafer's wear time with sure seals, if the adapt ring cant keep up, right?

so anyways, i can't go more than a week and it's b/c of the adapt ring. but hey, can't complain. one week is really great too ;)

Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

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windy city
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Date Joined Dec 2010
Total Posts : 607

   Posted 5/9/2011 6:35 PM (GMT -6)   
Hodaya,

The dressing room experience was horrific. But, there was a rain storm and lights were flickering. So, after I saw the blowout as did my 7year old, she screamed, I redressed, and told the store clerks that my daughter screamed because of the storm. That I would return the next day to try on the clothes I picked out. Now it's funny and I can laugh, but at that moment, I just thought of my daughters emotions and curiosity. I wonder what my children feel (7 year old daughter & 8 year old son), and how this has affected them. I was hospitalized 5 weeks, in ICU, was downhill for over a week, when I returned home, I was unrecognizable. My daughter answered the door of my ex-mother-in-laws and ran and cried when she realized it was me. My kids hadn't seen me in about 10 days. But what can be said, what can be done. This is life and I'm calm and not spastic. But personally, this was million times worse than my divorse and even the suffering/death of my parents.

The adapt rings, never tried them. I've only been using the same things, when the paste didn't work, used Eakin. Afraid I guess to experiment. The sure seals I use. I switched back and forth between the sure seals and just waterproof tape. Neither one changed wear time. But I like the tight seal of the sure seal, as I have a big dip in the middle of the wafer due to the scar.

Thank you for your opinions and sharing what works for you!!!! ((hugs))) Christine

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Another UC wife
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Date Joined Jun 2007
Total Posts : 2111

   Posted 5/9/2011 8:06 PM (GMT -6)   
Hubby does wear the regular thin belt all day and while sleeping ever since the hospital.

His stoma is a small size like 5/8" and doesn't protrude very much which is the reason for the convex wafers. However it does seem like it is protruding a little more now so maybe being fully healed, using the belt consistently, and no longer using the eakin seals and the new moldable wafers it looks quite good and seems to be responding to this wafer changeover.

Yes he does have the nu hope 4" cool comfort ostomy belts but that is more for when he will be playing golf and doing things that require more physical exertion to hopefully support the stoma and keep hernias away..I hope I hope.

64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

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2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603

   Posted 5/10/2011 7:24 AM (GMT -6)   

Christine..... oh my gosh.. you've been through so much.. so sorry it's been so rough on you and your kids. the bad condition you were in had to affect your kids. sometimes rough times make you even stonger and ppl can be amazed to find strength they never new was inside of them, but only when they experience a crisis they learn how strong they can be. i wish you the best and that you and your kids will always stay strong to overcome any obstacles in your lives. (((hugs back at you)))

Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

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2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603

   Posted 5/10/2011 7:33 AM (GMT -6)   

UC wife, thanks for the info! about using the ostomy belt, the stoma nurse who gave it to me did say that if wearing it consistently, after about 2 mons the stoma will start sticking out more on it's own.... i'd love that too. and yes i'm also wearing the belt to prevent hernias in the future. i can't believe i was hanging around 10 mons w/o the belt.... best of health to us all!!!!

Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

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Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768

   Posted 5/10/2011 8:20 AM (GMT -6)   
I wear my belt most of the time. At night for sure.

Sometimes with certain clothes going out I just don't want an extra layer around my middle. Try not to be too vain about it.

My first belt was white but then I bought another and it was beige. That blends better. I even wear it swimming!

Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy

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ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 411

   Posted 5/10/2011 9:56 AM (GMT -6)   

Ron,

 

What brand of ostomy belt do you use?

 

NASCARon said...
I wear an ostomy belt 24/7

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ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 411

   Posted 5/10/2011 9:56 AM (GMT -6)   

2b ColonFree,

What brand of ostomy belt did you get?

 

2b ColonFree said...
everyone,

 

i started wearing an ostomy belt yesterday for the first time and find it's really great and comfortable. i always thought it would be very uncomfortable to wear one, but actually it's so comfortable that i don't even feel it's on me at all. and most important, since my stoma has retracted even more lately, the belt helps it stick out a bit more. i just wondered, do you all also sleep with the belt?

 

thank you!

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2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603

   Posted 5/10/2011 10:10 AM (GMT -6)   

thanks trigirl. wow, a beige belt is a great idea, i'll have to see if i can also have one :)

Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

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2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603

   Posted 5/11/2011 11:47 AM (GMT -6)   
thanks Ron. i also change every 7 days. my stoma is really retracted and i believe if it was sticking out as much as needed, i would have been able to wear it longer. but 7 days is really good enough.

enigma, i wear hollister's belt and so far i really like it.

Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

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answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321

   Posted 5/20/2011 5:50 PM (GMT -6)   
Hodaya, Hello friend. smilewinkgrin

 

I wear a hernia belt from nuhope and love it. I don't sleep in it though because it just doesn't feel right. I wear it all day and take it off to sleep.

 

As far as wear time, I have to change the wafer every 3 days because the EAKIN or the ADAPT ring has already melted???? Neither one seems superior to me. I have even used tried using paste with the eakin or adapt ring and still no help! eyes

 

 

I waited 4 days last change and my poor skin right around the stoma was burned up pretty bad. OUCH, it hurt when the water hit it. I used extra stoma powder and the no sting barrier and won't wait 4 days again.

 

 

I also rolled a piece of the Coloplast strip paste and squished it right around the edge of the stoma, right on top of the burned skin, and am hoping this will let the skin heal. I was going to change the wafer every other day, but I do not have enough wafers to do that, so I ordered more and am hoping my insurance will cover them.

 

Do you ever have this issue? My doctor said it is because it is a loop??? I am having surgery June 20 to have the loop changed into an end, so we will see.

 

 

 

 

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2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603

   Posted 5/22/2011 12:40 PM (GMT -6)   
hey there dear friend :))) wow, i couldn't imagine having to change every 3 days.... i change once a week, as you've probably read already. i think it's possible your hernia is causing it to leak so soon. also, maybe its b/c i don't have as much output as you during the day and during the night it's only just bits of thick stools, so maybe that's why my adapt ring doesnt melt so fast like yours...? just my thought.

i know about your surgery on June and hope everything goes super well for you, hon!! wish i could also have an end ileo. you'll have the rectum left in there, right? will you be able to expel the mucous when it's not connected to anything..??? i just wonder.

Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

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