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When to change

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Fri Jul 15, 2016 5:28 pm

Hey Kdb, excellent advice.  We sometimes emphasize a clean appliance and damage our skin by changing too often.  Conversely leaving soiled skin unattended could be disasterous.

Mike

Fri Jul 15, 2016 5:31 pm

Just a note for Dabnabbit.  Our family has a place on LBI and we fish at Island beach.  

I too was taught to have clean underwear at all times.  I just never had pockets big enough to hide it.

Mike

Fri Jul 15, 2016 6:06 pm

Mike, I wear the same.....hernia belt...., One thing I tried that worked really well when I first started. After surgery I had a pretty good divit next to the stoma and was changing alot, just trying to get something to work. After alot of different products I bought a Nu Hope belt with a standard opening...2 & 3/8's I believe. Then I orderd barriers/flanges that were 1 3/4's. It allowed some clearance over the flange....then smapped on a 1 inch belt over it to the tabs on the flange. Really worked well, the belt held everything flat & the added 1 inch belt kept the pouch firm. I wore it this way for along time...no leaks ..no problems...made everthing last a long time. Eventually I gained some weight and the divit became less of a problem.....not sure if it would help anyone to try....but really worked nice.

 

J

Fri Jul 15, 2016 6:40 pm

Wow letsrock!  That's a terrific story.  We can learn so much from experimenting and sharing the results as you just did.  

Thanks so much.

Sincerely,

Mike

Sat Jul 16, 2016 9:19 am

Hi Everyone, regarding changing....I seem to always have issues in the warmer months.  I develop a rash under my wafer...almost like prickly heat.  I have tried everything, stoma powder, no powder, and eventually changed my barrier wipe.  It helped.  I am guessing that I was having a skin reaction to the wafer, perspiration and barrier wipe which caused the rash and the warmer months accelerated the rash.  The joys of stomahood. LadyHope 

Sat Jul 16, 2016 1:49 pm
LadyHope wrote:

Hi Everyone, regarding changing....I seem to always have issues in the warmer months.  I develop a rash under my wafer...almost like prickly heat.  I have tried everything, stoma powder, no powder, and eventually changed my barrier wipe.  It helped.  I am guessing that I was having a skin reaction to the wafer, perspiration and barrier wipe which caused the rash and the warmer months accelerated the rash.  The joys of stomahood. LadyHope 


 Ladyhope......have you tried a spray on skin protector?  I have been using one for a while and helps my skin....mosty during the hotter months

Mon Jul 18, 2016 10:31 pm

Hi Mike,

Thanks for the info.  I will look into that type of belt. 

Does it need to be made to fit my specific wafer size or is it more generic, like the clip-on belt that I use now? 

I understand the "psychological" need for a belt.  I am so used to having it on all the time that I feel weird without it. 

My main goal is to keep the skin around the stoma as healthy as possible.  With the warmer summer weather, it is an even harder challenge!  There are always new items available and I appreciate your suggestion.

Stay well.     Lavern

 

 

Tue Jul 19, 2016 4:56 pm

Hi Lavern.  You can, and should, get the belt made specifically for you.  Maybe your needs can be satisfied with one right off the shelf but, to be sure, call NU HOPE at 1-855-527-8369.  They'll ask you for the identification of your wafer and pouch.  When you give them the ID numbers and/or letters they'll know exactly how to begin.  They'll ask if you have any lumps, bumps, crevices, etc. and provide you with a "custom" belt.  Their people have been great with me.

Most insurances will allow two per year and that means we can order one, try it for a week or month or whatever then order the second one.

Let us know how you make out.

Mike

Wed Jul 20, 2016 9:03 pm

Hi Letsrock!  Thank you for the suggestion and the information.  I am trying new products in order to see which ones work the best....better late than never...right?  I seem to be a creature of habit and trying new things are a bit uncomfortable.  I am doing my best to step out of my comfort zone.  The spray sounds very promising. Thank you again.  LadyHope

Wed Jul 20, 2016 10:51 pm

Hi LadyHope,

Your comment about being a "creature of habit" really struck a chord in me.........I realize that I don't have enough confidence in my ability to use a new product correctly. 

I recently tried a new barrier ring to decrease the leakage under my wafer, but that was a disaster!!  I was able to stretch the ring to fit around my stoma, but it was very stiff and resulted in causing the stoma to swell up and became very painful.  I said to myself, "so much for trying something new!!" 

But, reading your posting has given me inspiration to also try to "step out of my comfort zone" and stay positive about the future.

Thanks!  Lavern

Thu Jul 21, 2016 7:57 pm

Hi Lavern.  From one Eakin Slim or one Hollister ring I get three seals.  I cut the original seal into 3 equal pieces and roll each piece between my palms until I have a thin, wormlike roll about 4 inches long.  Then I flatten each so it's a little over a quarter inch wide and about a sixteenth inch thick.  I warm the one I'm going to use and carefully lay it on my belly, surrounding the stoma and leaving no space between it and the stoma.  I change every 7 days and it's still soft and plyable .  BTW, I do use a barrier film like Cavillon or a spray like Letsrock suggests.

If this sounds like it's in a wierd language just let me know.  I'll try to make more sense of what I'm trying to describe.

Mike

Fri Jul 22, 2016 12:39 am

Hi Mike,

I think I can visualize what you are describing, and will try to follow your directions.  Currently, I am using the Hollister Adapt barrier ring (#7805), which is the one that I have found does not cause my skin to get inflamed.   I had very bad reactions to the Eakin product. 

The only thing that seems odd is that what you described sounds like you are using less barrier ring material (dividing one ring into three pieces) than I do.  I use one ring every time I change , stretching the opening to fit around my stoma as close as possible.  As it attaches to my skin, it softens and fills in the spaces of the wafer around my stoma.  Does your stoma change shape and size constantly?  I think that having the entire barrier ring material helps fill those gaps that occur with each change in size?  What do you think will happen when I use less of the material?

Also, since you change every seven days, do you also use the same pouch for the entire seven days?  After the first 2-4 days, the pouch gets really smelly, no matter how much product I use to fight the inevitable odor that develops from the output. 

Thanks for your help.  It's been two years of learning, and still trying to find what really works for me!

Stay well.  Lavern

 

 

Fri Jul 22, 2016 9:51 pm

Hi Lavern.  That 7805 is the barrier ring I'm using and I do end up with a third of the material I started with.  My stoma measures about 7/8" diameter and, at the risk of jinxing myself, doesn't seem to change much.  Mine is a colostomy and I use the same pouch for the week but I really rinse it each time I empty.  Most people would chastise me but I just like to keep it as clean as possible.  I also clean the last 2 or 3 inches of my Convatec, 2-piece, drainable appliance with TP dipped in a mixture of cheap mouthwash and water.  I use about 15 -18 of the M-9 drops instead of the 4-12 drops they prescribe.

It's about 3 years of learning for me and, hopefully, we have lots more years to learn and share.

It's all good and I thank you.

Mike

Sat Jul 23, 2016 2:25 pm

I have terrible luck with barrier rings too. While on vacation, (meaning not when I have to go to work daily) my order of Coloplast Brava moldable 4.2mm rings came in and I was excited to give them a try. I cut them in three pieces and flattened them to fit around my stoma after I rolled them into the rope shape. No luck, leaked the first day. Then I tried just stretching the hole big enough to fit my stoma. I think my problem is they are too thick.

I ordered samples from SecuPlast and their thin wafers are the only ones I have had success with. Their in the UK and I can't get them from my supplier frown or I would have them with every order.

 

 

Mon Jul 25, 2016 6:22 pm

Mrs A   When I first was using the coloplast brava moldable rings, I also found them to be too thick.  I would take one ring, tear it in half, flatten and stretch it out and found that to be sufficient to surround my stoma.  It provided better protection from leaks and was able to be put flush against the stoma, and even up the stoma a little if necessary, which is difficult to do with the thicker ring.  Good Luck

Nancy

Tue Jul 26, 2016 6:13 pm

Does everybody here use a two piece system?  All this talk of barriers and rings and belts and I feel a bit lost.  I use a one piece drainable and depending on consistency it can last anywhere from one to five days.  I have two questions.  Why do you use a two piece over a one piece (drainable) system?  (ie what are the advantages over a one piece system?)  Also, what is the point of having a belt?  My ostomy nurse showed me a belt one time and clipped it on me and I took it off that night and never put it back on.  What is the point of one? 

Wed Jul 27, 2016 1:38 am

Hello HarleyDoll. When I was wearing bags I tried all sorts but decided that the disposable ones with the ability to drain were more suited to my needs and that is the point. All these things are about personal preferences and we are fortunate that there are so many things out there to try out and choose from. I am never content with leaving it at that, so I tend to experiment with stuff of my own but most of the time I can say that between them, the manufacturers of stuff for us have done a pretty good job between them to provide a range of goodies to try.

As for the belt. I wear a hernia belt because I have a hernia. I wish I HAD BEEN WARNED EARLIER, as I probably would have worn a belt as a precuationary measure to prevent getting a hernia - but there you go! Yet another personal choice.

Best wishes

Bill  

Wed Jul 27, 2016 10:10 am

Hi Bill thanks for your response to this. 

Well this is precisely why I am asking 'what is the purpose of a hernia belt'?  (plus are one of those thin belts to hold the bag on considered a 'hernia belt'?  The one the nurse gave me was only one inch deep and clipped onto those little hook things at the side of the bag.  Is that a hernia belt?  Somehow I thought an actual hernia belt would have more support and be bigger and tighter).  So I guess my question is twofold 1) is the belt I am describing a hernia belt??? and 2) what is the purpose of the kind of belt I am describing?  (is it to as you say PREVENT A HERNIA?  Is it to hold the bag on better, what is its purpose?) The reason I am asking is because there are a TON of things I had never been told, and like you, I do not want to end up with a hernia because I should have been doing or wearing something that my doctor and surgeon and ostomy nurse never bothered to tell me about.  I was never even told about the possibility of hernias before my surgery.  So this belt the ostomy nurse gave me, it would seem to do nothing but hold the bag on, it doesn't give any support.  My bag stays on, I don't need a belt to hold it in place, so why would I wear one I guess is the question.  I don't see the purpose.  Hence, what IS the purpose of it?
Wed Jul 27, 2016 3:27 pm

Hello HarleyDoll. Thankyou for describing in more detail the device you have been given. My opinion (1) is that it is not sufficient to be an effective hernia belt and (2)  it is really only designed to hold the bag on. If your bag is holding on without it then you are one of the many that have found a small alternative solution to a minor issue in this regard.

You are certainly not alone in not being told about the possiblity or even the probability of developing a hernia. It seems to be a common problem and I am one such 'victim' of this ommission.

I would recomend a hernia belt to anyone starting out with a stoma because thye 'might' help prevent one forming. ( Prevention is better than cure!)

I have tried a few hernia belts and supportive girdles, long pants etc.  that did not work very well for me and I ended up making my own.

The nearest ones that matched my needs were those made by a firm called CUI international Ltd.  These are basically a strip of firm, elasticated material  with velcro on either end so that it fixes together and two hand-pockets which makes it easier to pull around your waist and fix it at the right pressure for you.  They make them with holes for bags etc. But I couldn't get on with the widths of belt that they made so I simply ordered the size that 'I' wanted and they made it up for me. 

The problem for newbies is that you need to try a few before you know what is right for you. I wouldlook on the web and then ask for samples of the belts or pants that you fancy most. To have a look at the ones I use, you could try www.cuiinternational.com but there are loads of others out there who are just itching to sell you something! I am tempted to suggest that you to go back to the professionals and embarass them about why they did not tell you about hernia belts before. Just a thought based on what I did -- not an appraoch I'd really recommend for everyone! unless you have a panchant for stirring the pot

Best wishes

Bill

 

Wed Jul 27, 2016 5:43 pm

Thank you for your patience with me.  Obviously I now understand it was not a 'hernia belt' the ostomy nurse was using on me.  I have no knowledge of ostomy or hernia belts, what they were for and I assumed the belt she gave me was a hernia belt.  After I responded to you I did a bit of googling and realize the difference now, but since the 'professionals' never even MENTIONED a hernia belt, let alone suggested it might be a good idea, I had no frame of reference, so the one she DID show me, I thought was a hernia belt. 

So now, knowing what a hernia belt is, and looking at the link you so kindly shared with me (VERY GOOD LINK BTW, THANK YOU!) I at least understand what the concept and purpose of a hernia belt is.  I had been looking online a week ago at something called a STEALTH BELT, is that a hernia belt too, or is it just a belt to hide the pouch?

I'm curious if the company at the link you shared will ship to Canada.  I note that your NHS covers all sorts of underwear and ostomy clothing, I have no idea if they cover it here in Canada.

Thu Jul 28, 2016 1:44 am

Hello HarleyDoll. Thanks for coming back to us with your thoughts. You summed it up very well when explaining what you naturally thought without the proper information and then with it. Posts like this are so important for all those who are sitting at home wondering the same sorts of things but are too shy to come out and ask the questions. They rely on people like yourself to start the conversation off and people like us to suggest answers.

I have heard of the STEALTH BELT but like you, I really don't know whether they are, as you suggest only to cover it up or whether they are also designed to act as a hernia belt. Perhaps someone else on here can enlighten us both. Otherwise it might be worth asking the company or your stoma nurse. Come to think of it, your stoma nurse should know about whether you can get this stuff on your health system.

As for shipping to Canada, the company call themselves CIU 'INTERNATIONAL' so I would presume that they at least aspire to exporting their goods. I got the impression that their parent company was somewhere like Holland so I presumed that they made them there and exported to the UK.

I would email them to ask that question. They were pretty good at knowing the details of what the NHS would and would not supply so maybe they know about provisions in other countries as well. It would do no harm to ask them and they have always been very helpful with my 'off the wall' questions and requests.

Best wishes

Bill

Thu Jul 28, 2016 11:31 am

Bill, HarleyDoll.....

 

 I bought a Stealth Belt @ first thinking it would double as a Hernia Belt.....not so. It is a good belt to hide the pouch underneath clothing, but not much support there. Its made of a soft material so it will conform to you, so if you have a bulge so will the belt. Its  made so the the pouch goes on sideways, you fold the pouch over on the edges and slip the pouch in a pocket so to speak, then zip it shut. I do wear it from time to time, when wearing a tee shirt, and it does hide everything pretty well. The biggest problem I have with it is that it will flatten the pouch to the point where you will get a pancaking effect if you wear it very long. Also takes alittle effort to get everything to lay flat in the belt pouch.

 I went to a Nu-hope hernia belt, I don't have a hernia, but don't want one either. I pretty much wear it all day, every day.....works great

Thu Jul 28, 2016 1:20 pm

Ahhhh thanks for posting that Bill.  You are so patient, so kind.  Thank you for that, as I've had a few wretched days in a row and this morning was the worst.  Yes, the Stealth belt, I went to get the link for anybody who might be interested and they call it an 'Ostomy Belt' on their site, so ???? confused me more.  They are quite expensive and would run me $150 plus once shipping and duties and taxes are included and likely this would not be covered under my medical plan.  So I will give it some thought.  Here is the link:  http://stealthbelt.com/

 

I have to tell you, I took a look at your profile and tried to 'Comment' on your beautiful black doggies!  But I think I have to have a membership maybe in order to do that?  So I will take the cheaper route, and tell you here that your dogs are beautiful as are your gardens.  I love black dogs, had a black spaniel but had to put him down in Dec. 2013, just about killed me.  I am dog lover through and through; like dogs better than most peopel - lol.  Have a GREAT day Bill!

 

 

 

 

Thu Jul 28, 2016 2:56 pm

Hello HarleyDoll.  It's so sad when dogs that have been your closest friends die and that's what happened to both of the black ones' in the photo -they were very old - a bit like me!! My wife saw them more as hers' than mine  but we never had to dispute the issue while they were alive. However the 'green' ones growing in the tubs are definitely mine and hopefully they will last a lot longer than the ones that run around all the time getting into mischief.

I thought that anyone could comment on the photos but perhaps I'm wrong on that score. Anyway, I like the idea that we share our conversations with anyone and everyone because there are a lot of people that come on this  site who have not yet ventured into posting for themselves. They obviously like to see what other people are saying to each other and the private conversations take away that opportunity. Thank you for all you nice comments

Best wishes

Bill  



Last edited by Bill on Sat Aug 06, 2016 3:28 pm; edited 1 time in total
Tue Aug 02, 2016 6:16 pm
iMacG5 wrote:

Hi Lavern.  That 7805 is the barrier ring I'm using and I do end up with a third of the material I started with.  My stoma measures about 7/8" diameter and, at the risk of jinxing myself, doesn't seem to change much.  Mine is a colostomy and I use the same pouch for the week but I really rinse it each time I empty.  Most people would chastise me but I just like to keep it as clean as possible.  I also clean the last 2 or 3 inches of my Convatec, 2-piece, drainable appliance with TP dipped in a mixture of cheap mouthwash and water.  I use about 15 -18 of the M-9 drops instead of the 4-12 drops they prescribe.

It's about 3 years of learning for me and, hopefully, we have lots more years to learn and share.

It's all good and I thank you.

Mike

 

Hi Mike,

Although I have an ileostomy, it sounds like you and I have similar stomas and routines.  I do the same thing that you do about keeping the pouch as clean as possible every day.  I also find that when I try to eat what I call more "clean" foods, then the pouch has a less offensive smell.  In the beginning, I was very self conscious about the smell, but after two years, I am not as concerned.  I guess it is a combination of being more relaxed and simply getting used to the smell?  

I use mouthwash to help with the cleaning, but have not used M-9 drops.  Will order that the next time I place my ostomy order.  It sounds like a good idea.

Thanks for the information. 

Always good to communicate with someone like you.  I'm willing to try new things.....you never know what works until you try it!

Stay well.  Lavern



Sat Aug 06, 2016 9:02 am

I'm with you, dadnabbit!

Call me "colo-retentive," but every morning the bag comes off, neatly wrapped in toilet paper and into a ziplock back into the garbage.  After the shower, new bag goes on and I'm sparkly clean!

It took over a year before I started doing this. . . pulling the bag off used to hurt my skin if I did it daily. Now my skin has no problem.

It's so much more bearable to empty the bag during the day when it's already pretty clean to start with. And my Hollister 8081 is supposed to be silent, but I find they rustle after they've been emptied a lot. 

I never get that acidic skin burn around my stoma anymore that I used to get when I changed the bag less often.  And I no longer worry that a long hot shower will loosen my seal.

Mon Aug 08, 2016 12:07 am

Not Dead Yet----Nothing to make you feel "alive" more than being sparkly clean !!! I guess we're two of the lucky ones being able to change daily, as it seems many folks suffer from skin issues when doing this.  I have lately been using only a barrier wipe and a sen sura mio one piece bag, nothing else necessary, wafers, powders, not even adhesive removal wipes.  Luckily while hubby is still employed I am covered by two insurances and cost has not as yet become an issue.  I'm hoping my doctor will be able to keep me in 30/month after hubby retires as a medical necessity, as it really is a head trip for me to be told I cannot change daily !! I caused quite the uproar in hospital right from the start over this issue, and solved the problem by forcing the issue, removing it myself and tossing it daily.  I was bedridden from leg surgery and it left nurses really no alternative other than to give me the needed supplies.   Grateful for the simplicity and the feeling of some semblance of control over my own life.

Peace

Nancy

Mon Aug 08, 2016 2:30 pm

LetsRock - so you didn't find the StealthBelt to be all that good?  Other than for hiding it which would work good if one is having sex or wanted to hide it completely.  Being in Canada, I figure that StealthBelt will cost me close to $150.00 plus shipping, which is a LOT of money for a belt that does nothing but hide the bag.  Plain wraps and high underwear can hide the bag too. 

Hmmmm wonder if I should get a StealthBelt or not.  You don't seem to think the material is strong enough for hernia support, so I might think twice on this purchase as it will likely not be covered by my health plan.

Can you link me to this Nu-Hope where you got your hernia belt so I can have a look?

I have ordred some hernia support underwear from Vanilla Blush which is VERY nice from the looks of it, but don't know how supportive it will be as I haven't received it yet.

Does this look like it will provide hernia support to you? 

http://www.vblush.com/productdisplay/ladies-white-hernia-support-pantie-girdle

Tue Aug 09, 2016 1:47 am

Hello HarleyDoll. 

I tried some of the products such as pants and girdles but found that they were not suitable because either I shrunk around the middle or the garments expanded and became relatively useless. I suspect it was the latter! I now use a belt from CUI that I can adjust for myself each time I put it on. This way, when the fabric stretches I can still make the necessary adjustments to make them fit comfortably. I even have one that stretched so much I had to sow a pleat in it to make it small enough to still fit.

Hope this helps

Best wishes

Bill

Tue Aug 09, 2016 2:30 am
dadnabbit wrote:

 I guess we're two of the lucky ones being able to change daily, as it seems many folks suffer from skin issues when doing this.  I have lately been using only a barrier wipe and a sen sura mio one piece bag, nothing else necessary, wafers, powders, not even adhesive removal wipes.  Luckily while hubby is still employed I am covered by two insurances and cost has not as yet become an issue.  I'm hoping my doctor will be able to keep me in 30/month after hubby retires as a medical necessity, as it really is a head trip for me to be told I cannot change daily !! I caused quite the uproar in hospital right from the start over this issue, and solved the problem by forcing the issue, removing it myself and tossing it daily.  I was bedridden from leg surgery and it left nurses really no alternative other than to give me the needed supplies.   Grateful for the simplicity and the feeling of some semblance of control over my own life.

I don't know what a barrier wipe is.  Never heard of Sen sura mio (although I WILL look it up! I thought there was only hollister and coloplast). Not sure what you mean by "wafer." . .I've seen the word a couple of times on this site but. . .
My insurance just changed to. . . nothing? I was on medicaid, 30 bags per month. That was OK as I stockpiled in my early days when I didn't change daily. (obviously 30 bags/month will bring us into a deficit by year end if we change daily, not to mention the few bags lost due to unforseen surprises.)

Looking into health insurance, it's $10,000/year for me. Cash.   I think I'm better off taking the hospital's no-interest pay plan, with a HUGE discount for self-pay.  At one of my hospitals (clincal trial girl here has two hospitals in two different states) I only have to pay $80/month for self-pay, no interest.

We could probably set up the same at the second hospital.  EXCEPT. . .

EXCEPT the only medical stuff I need, that cannot be put onto any hospital pay plan, are COLOSTOMY BAGS.

I really like the proactive response you took in the hospital, Nancy.

As I am soon to face the issue of not-getting-enough-bags for whatever reason, I need tips and help. These puppies cost $5 per day, and without insurance, that's a pretty big dent in our household finances.

I looked into the
"colostomy bags for free" but those are really for people who are far more desperate than me. I actually already sent them my hospital leftovers and free sample stuff.

Maybe I'm a little fussy. But it's who I am. 

Help?

 

 

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