Share Your Ostomy Tips! Helpful advice for daily life with an ostomy.

I haven't seen any threads titled Tips, so I'm starting my own! I have a few tips that can make daily life with an ostomy a bit easier. If you have any, then post them. I'd really like to keep this thread strictly for tips so newcomers can find the information they need.

1. Carry an extra tailpiece clip with you at all times. This is in case you drop one while you're in the bathroom or if the hinge breaks. This hasn't happened to me yet, but I'm prepared!

2. Buy a box of Wet Naps and carry one or two with you when you go out or to work. These are handy for anything from cleaning a toilet seat, the appliance tailpiece/clip or your hands if anything should get out of control. I use them to clean the tailpiece clip on my appliance during the day at work.

3. Carry loose change in your pocket. The noise the change makes will disguise the noise the ostomy appliance makes when you walk in a quiet area! People will hear the change and not the plastic bag.

4. Use a curved tailpiece clip if you are active. They stay close to the leg and don't get in the way. I've pulled two clips off of my appliance while working, without knowing. Eeek. Both were straight clips. Since I've gone to the curved ones I haven't had any issues and with being a mechanic and going to the gym regularly, that is an accomplishment!

Let's hear any tips you may have. This is a great community and I'm sure there are little things we all do that we take for granted that someone else may say "hey, that's a great idea"!

Paul

Excellent idea, Paul.

I am going to bump this back to the top. Here's a tip I picked up on this site...drop a Tic Tac in the pouch for odor control (sorry, can't remember who posted it). Surely there must be others with tips...don't be shy.

Oh! Tic Tac, first time I hear about that one, I personally did Listerine sheets or mouthwash. It's cheaper than the odor control drops.

Another thing I've done is to cut the bottom seven inches off of a t-shirt and hem the unfinished edge. Buy some Velcro and stitch each piece onto the shirt. Now you can wear it around your waist like a cummerbund with your appliance tucked underneath it. The Velcro should be located far enough apart to have to pull the cummerbund tight. Now you can get intimate with your significant other and have your appliance tucked away!

I know what you're thinking. A big tattooed guy who knows about sewing???? Necessity IS the mother of invention (and learning to sew a bit)

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hi Paul,
That's a great tip about the t-shirt. I bought a similar product for about 30 bucks and while the concept was great, their quality wasn't. Aside from their crappy sewing, the velcro is not exactly the softest thing and the edges of the velcro are quite sharp.
The product does work but personally, I would prefer something else to hold the ends together rather than this particular piece of velcro! Suggestions anyone?
Thanks as well for starting the thread.
Regards,
Bill

I once read somewhere if you put a couple squares of toilet paper on top of the water in the toilet before you empty it, you don't get the "splash back". It actually works.

I also carry with me in my purse:

Those small Glade room sprays if needed.

Roll of Medical Tape in case a minor blowout happens and an emergency repair job is needed.

Hi Budd002,
Those are great tips too. The TP or Kleenex definitely works very well on top of the water. I use that one all the time.

Another tip is, I carry a spare pouch, plastic bag, pre-cut flange, Kleenex in a small cloth bag with me ALL the time (I call my carry-on). Since I don't carry a purse and this all lies quite flat, it just goes in the back pocket of my jeans or jacket pocket. It has saved me on more than one occasion...especially the pouch change. I just make sure if I (luckily) haven't had to use the "carry-on" items in the several months that I swap them out for new ones. Don't want to take a chance on them not functioning when I need them to.

Wish I could carry the Glade air freshener too though...just can't get into my back pocket!!!

Bill

That's a great idea. Another reason for laying toilet paper in the bowl first is that if you eat greasy foods, they tend to stick to the bowl. Laying the paper down stops that.

Mr. Bill, I would suggest using another type of fastener if the Velcro doesn't work for you. Maybe a set of hooks, or even bra hooks. Please forgive me, ladies.

For intimate times, I bought a back support belt without the shoulder straps. I apply my pouch sideways so it's horizontal to the floor, hanging to my side rather than toward the center of my body, then put the support belt over it. It holds the pouch tightly and securely. Plus, it practically eliminates the possibility of the pouch becoming dislodged from the wafer, which is an instant mood killer.

All,

Great tips, much appreciated. Just found this site, so wanted to post some of my own tips, and ask some questions (I have an ileostomy, since '94, I'm now 3:

Tips:
-As mentioned by others, the odor eliminator drops are life savers! Several foods (fish in particular), cause me much embarrassment when time to empty pouch! These drops are life savers. Hint: what I do is buy a small Visine eye dropper and use the drops, or simply empty it, and refill it with the deodorant drops (squeeze dropper and hold upside down in some of the liquid; after filling put top on and you have a discreet amount of the liquid that will generally last all day.

-Intimacy: probably not the very best of ideas, but it works for me... I ALWAYS wear an ostomy belt, because I am fairly active, and don't want ANY chances of an accident that could otherwise be avoided! I simply fold the pouch upward, and tuck the tail clip in under the belt (belt has to be fairly snug). This keeps it out of the way.

-Concealment/Intimacy: I use some of the pinkish tape (HiTape??? Sorry, don't remember name off the top of my head: best stuff ever though, NOTHING will make it lose its "stick") to "fold backwards" the top of my pouch and tape to the back of my "floating flange". This changes the appearance from a somewhat high "arch" shape that would come up to my bellybutton, to a straight line that is much more easily concealed under my boxers. Part 2: I have found that during intimacy, sometimes my partner's motions put a lot of pressure on the point where the pouch connects to its own plastic "connector" that attaches to the wafer's plastic "receiver". I have done nearly the exact same thing as just described, taping from the bottom of the floating flange up onto the actual pouch, which provides the structural integrity to ensure the ripping away of pouch from plastic does not occur. Some others have described a cloth wrap to secure this, which seems like a good idea, but with my method I always feel ready on the spur of the moment.

Questions:
-Does anyone have good input on travel? I have traveled several times, including to third world countries (on resorts though), and am always a little nervous about "what might happen". Will I be prepared, etc. ANY advice in this area would be helpful. I know the general rule (take 2-3 times as many supplies as you think you might need). Example: I was on a bus on a tour in another country...and there was no toilet, and the only way to use the bathroom was literally, to get off...and find a way back to where the bus started. It worked out OK...but that was a nervous time! I try to eat sensibly (small amounts before excursions, etc)...but that is not always a guarantee. Sometimes NOT eating produces more "liquid", etc.

-Heat is a killer for me. So is water. When my wife and I travel, we generally go to hot places, with the ocean nearby. I love it, but my wafer/pouch don't. Any easy, not too cumbersome ways to address?

-One other question: I wear briefs (to keep pouch in place) AND boxers (to hide pouch). Probably overkill, but I used to work out a lot, and had to change in gym with others regularly...now just habit I guess. I have been looking for a GOOD pair of undergarments that look OK, and most importantly hold the pouch in place! I don't like the feel of it against my leg (seems movement prohibitive), and therefore haven't found anything that will keep it "centered", but also comfortable. Anyone found such a thing?

Thanks all. Glad to have some folks I can get some advice from!

Ok, this might sound odd at first glance but well, it saved my life numerous times.
I traveled to Cuba on a bike for 2 months and needless to say, they don't have the greatest access to stoma supplies.... actually... I haven't found any when I was out there (didn't really search for it either). I have been kinda crazy to go there with what I brought, I could have been in trouble but I really had to bring the minimal amount of supplies considering you don't carry much when you bike 100km a day. What did save my life and I still use that as an alternative whenever I'm in trouble is actually duct tape. That thing can be so wonderful. Ok, it's nothing too fancy but it works amazingly. So I consider it to be a lifesaver when you are traveling light. It sticks and stays but... it is still hard on the skin so it's an extreme solution. Considering I was always sweating from the island humidity and the 6 hours of biking a day... it was very welcome to save my flange and have them lasting a few extra days.

For the bus trips, well... I usually don't eat when the trip is short or otherwise I take like a boost/ensure or whatever else like that that has no fiber and a few soda crackers keep me from having the liquid issue. Other than that... I haven't found out any amazing solution yet... so I'll be glad to have extra ideas to try even though it's not too big of a problem for me as of now.

I have a random question, just out of curiosity (because I have the impression most people seem to use the "emptiable" bags rather than the closed-ended pouch). I was wondering, doesn't the attach/clip (call it as you wish) bug you...? I was hating that thing back in the days, maybe it did improve a lot in the past 10 years... I mean... I never tried it back after I started using the closed-end one. And I had more ease dealing with those ones and intimacy because I have the impression they are more "quiet" and I can flip and fold them into a little square that stays flat more easily and tuck under whatever lace/waistband I can find.
Ever tried them?

I wear briefs (to keep pouch in place) and boxers (to hide pouch).

That is a great idea. I don't get changed in the gym because of my appliance. Everyone there knows I have one, but I still don't visually flaunt it.

PJane, I use the curved clip and I don't even know it's there. Sometimes I have to check to make sure it is there! The straight clips were irritating on my leg after I recuperated and became more active. Plus, the fact that I've accidentally pulled them off twice. I swear by the curved clip.

Paul

On a side note, would it be possible to make this thread a "stickie"?

Thanks all.

PsychoJane, I only use the emptiable version and the arched clip. I never had a problem with it (the clip)... except that it "floats" rarely-sometimes (remember the briefs!) and finds an uncomfortable position on or between my legs. Usually, it's pretty easy to discreetly shift it somewhere more comfortable. The only thing I do is keep an eye on its two main components: the "hinge" where it remains connected (unlikely to wear out... but), and the "snap" where it comes together for a seal. That part starts to get a little weak after a few weeks, but there's a new one in each pouch bag.

This is why I am looking for some good undergarments that would hold it away from me slightly, but directly in front (so as not to get in the way of my legs, walking, squatting, etc). Actually, I don't know how the other version works... and wondered why people would use them. Do you have to replace the pouch with each empty? Or is it a remove, drain, put back on thing? Any light you can shed on that would be appreciated.

FYI, though I have not done a great deal recently (family life!), I have been in full contact karate, jumped off 40+ foot ledges into the water, climbed up through waterfalls in the Dominican Republic (lot of pressure straight on flange), etc., and truly been "living life". I have been married twice (unfortunately the first!), all after having the procedure. There are some times where things don't work out great (be sure to have something spare... even if minimal), but it is rare. For me, it's been a challenge to prove to myself that I can overcome and do what anyone else can.

OK, to risk sounding like a nut... I'm a "be prepared kinda-guy".... Anyone out there thought about designing and producing products that are "next gen"? Stuff that lasts much longer (I get about 4 days out of mine... if I'm not being extreme) for people that run marathons, engage in Mixed Martial Arts, live in very hot, high humidity areas, etc? Anyone out there thought about the worst case (trust me, my mind doesn't go here too often... ..), but a time when war, swine flu, etc., break out and cut us off from needed supplies? Ever watch "Survivor Man"? Any plans for how to simply exist with no products that are purchasable?

Thanks again.

First of all, I am amazed by how much fun things people have been doing...
Seriously, I think that for a lot of us, it gives us some psychological kick to just go and do whatever we feel might be doable. I mean, I don't want to make a "generalization" out here, it's not everyone but still, from the few conversations I had, people live their life with more challenges than people in general it seems. Anyway, I think it's awesome!

EaseW, for what it is of the closed pouch one, well, I use a two-piece system from Convatec. It's been like... what now, like 9 years I've been using that one, I believe. Before that, I was using the emptiable bag with the thingy (sorry I'm kinda short with English terms haha... the clip) but I switched because the clip was sometimes hurting me and I was kinda feeling awkward when I was in school because the air was staying trapped in those ones and plus they were making more noise than the one I use now (I guess they might have changed that since...). Technically, the bags I use are meant to be thrown away every time you use one, I believe, but since I got no insurance for that here, I found out ways to make it cheaper. They aren't meant to be emptied, but I mean, it's two pieces, you got the bag and the flange so, you can empty them if you want... I guess it's a bit more messy at the beginning, maybe, but I don't have any issue doing that now. It goes well for me. I guess it's a live and learn activity ^^. So I use the bag couple days depending on how it goes. They are quiet and cloth-like covered. Plus, there is the little hole that keeps the air out... it can be annoying sometimes though cause it may leak a bit from the filter, that's something some people might not like but I personally fold the top of the bag where the filter is and put a piece of cosmetic pad or whatever Kleenex works even and it makes me happy. I guess it's probably a matter of preference. But I found out they are more comfortable for me. They are shorter so not reaching my thigh (especially at 14 the others were too long for me) and are more discreet. You have to check them more often maybe, for me it's perfect since I'm not a big eater most of the time. I don't know if it's helping you any, hopefully it does, but I'm guessing it's a question of trying.

I don't know what's available to different countries but in Canada, Hollister offers an open-ended bag with a "velcro" close instead of a clip. I was quite skeptical in the beginning. Wasn't too sure how well the Velcro would hold, how long it would stay, etc. It's been quite a few years now that I've been using it and I love it!! It rolls up a couple of times and then the Velcro rolls onto itself, so it becomes a little shorter even. It's great, no clips to worry about, the Velcro is fairly soft, so it doesn't scratch the skin and it is quite pliable so it bends with the body. It sounds like I'm a salesman for Hollister! LOL.

Hmmm, now for a tip or two. There are some pretty great ideas on here. I'll have to try some of them.....

I can't think of any great tips right now, but I will be sure to post some as soon as I think of one or two...

Hello folks,
I happen to be a certified Wound/Ostomy Nurse, also a Nurse Practitioner.
I am very active in the WOCN, the national Wound Ostomy Continence Nurses organization.

I have some great tips to offer you all.
First, there are several pouches out there that have no clips. The best is the Coloplast pouch. The Hollister pouch is great, but the little plastic invisiclose ends do get soiled with stool at times. The Hollister pouch is not Velcro, it seems to be, but it is actually made of little plastic mushroom-shaped pieces which snap into each other.

The Coloplast has a wide mouth with a smooth opening, much easier to clean and empty.

Convatec also has a clipless pouch that is great.

I want to also tell you all about the great underwear that is made just for ostomates. The underwear for men is either boxer or brief with a built-in pocket on the inside to contain the pouch. The pocket can be on the right or the left side.
I am not in my staff's office now, but you can find this product in the Edge Park Catalog. All the products are found in this catalog. I will look up the 800 number and post it next time I get on.

The next thing I want to tell you about is the filter pouches. Do you use those?
The filter pouches will release the gas and filter the odor, so it does not smell.

Also, there are the waterproof pouches. I suggest using the closed-end one-piece for swimming. Then replace when you are finished. The problem with this is they will tend to expand at times. So you must wear a swimsuit that covers them or keeps them contained.
These pouches will stay on for 6-8 hours before they start to lose their seal. I suggest you just remove one then replace another.

Here in the states, we instruct our patients to keep their pouches on for as long a wear time as possible. This is supposed to be good for the skin.
However, in Europe, they do the opposite. They change their pouches daily. They do not use Durahesive or long-wearing pouches, they use Stomahesive. They have really good skin and far fewer peri-stoma yeast issues. So... my thinking is we should think about this. Medicare does pay for the use of 20 pouches a month.
Just a thought.
KBear.

PsychoJane, thanks for the info on the non-drainable. I would strongly encourage you to look into the drainable again. They are easy to drain (no mess, unless you had too much to drink!!), and have the covers that make them less noisy, and very comfortable. Also, some versions of them now come with the filters that allow the air/gas to escape...with charcoal, etc., that is supposed to make the odor minimal (I haven't gained the confidence to use that version yet).

I have also recently tried "a" version of the "clipless". Don't recall which it was...but it didn't work for me. Was more comfortable...but with the rolling up, and Velcro, still didn't contain the contents of the pouch effectively (not too much drainage...but I don't want ANY). I'll look into the Coloplast, as I'm pretty sure that's NOT what I tried.

One other tip I have found MOST helpful...I sit in meetings at work almost all day (IT Manager at a bank), which is an environment that is "uptight", and also generally fairly quiet. I used to have many embarrassing noises coming from my pouch/stoma. I have learned that: 1) Eating a bagel in the morning (1-1.5 hours before having to be anywhere I would be concerned about) settles my stomach, and keeps noise almost completely nonexistent ALL DAY (if you read #2, next); and 2) That not letting my stomach get completely empty (very hungry) maintains this effect (if I get really hungry my digestive tract starts to produce gas, which becomes embarrassing).

I appreciate you all. My wife is wonderful and supportive, but of course, not living this life daily doesn't have a lot of helpful input (lots of support...just not good ideas!).

FYI, I've been doing P90X for 3 weeks now! (stay up too late and watch infomercials if you don't know what I'm talking about). WE CAN DO ANYTHING!!!

Please keep the tips coming! I have worked out enough "good ideas" to make my life very happy...but know there are many ideas out there that I haven't even considered yet!

As far as the clipless appliances go, I have had them split in the corners of the folds so I avoid them.

Another tip: Soon after getting an ostomy, I replaced my bathroom faucet with one that has a removable nozzle. It's like a kitchen faucet that the head pulls out and you can use as a sprayer, but smaller for the bathroom sink. It is made by Price-Pfister and it is the Catalina model. This makes life sooooo much easier when changing appliances, or just cleaning the end of it. I like mine so much that when we bought a house, I took the faucet with me! Yes, I did buy a new one to replace it in the old house.

Edit: I forgot to mention that you can also twist the faucet head to get either a spray or stream pattern, and even a mix of both.

Have you all tried the new Coloplast Sensura!
This is a great pouch for the person with folds or creases in the belly. This pouch was developed by accident. The company came out with a great fistula pouch. This pouch worked sooo well that they decided to use this same technology for the everyday pouch.
This pouch does not have tape on the edges, many folks do not like that about it. This pouch is very popular in the UK.
I also am a huge fan of the Convatec modable pouch.
However, I have had folks that develop skin irritation to the stoma adhesive.
I NEVER allow my patients to continue with using a pouch if they develop skin irritation. This will only get worse. You should never try and cover this up with a skin prep.
You MUST try a different pouch.
That is the only thing to do.
Sometimes the skin irritation is a fungal rash and is not an allergic rash. In those cases, I clear up the skin and then get the patient back on the modable when healed.
Kbear

20 pouches a month??? Here in Australia, I get 60 drainable or 80 non-drainable. Man, that's tough.

Lots of great tips. Some of them I can't picture though.

My tip is about disposal of used pouches. After I came home from my surgery, I realized frequent trips out to the garbage can in freezing temps and snow wasn't going to work. I had my boyfriend go buy me a diaper pail to leave in the bathroom. Mind you, I was picturing one with a pail and a top (old school). He came home with 'Diaper Champ' by 'Baby Trend'. I can't effectively describe how it works, but you never have to open the top...there is a receptacle where you put the discarded pouch (in plastic bag of course), and you turn the receptacle over (180 degrees), the pouch drops into the container, and the other side of the receptacle is ready for your next disposal. When it's time to empty the Diaper Champ you just open and take out the large plastic bag with your discarded pouches. You can't smell a thing, and anyone going into your bathroom has no idea what it is. It is really convenient. It costs about $30 US dollars.

I have a colostomy and also use a closed pouch. I can't stand using the squeeze thing at the bottom of the open-end pouches. I empty through the open-end and also use the cosmetic pad to cover the filter.

I recently read about flushable pouch liners, which I am going to give a try.

I never thought about the 'catastrophe' scenario....YIKES...what would we do????

Good tip about making your own belt. I'm going to try it.

Peace Love in the Universe...

Kbear, thanks for the info. I went to the Edge Park website to check out the belts... They cost over $100. The following statement described their policy for the cost of the products:

Actual prices are substantially lower for patients with private insurance coverage, or Medicare and will be displayed during checkout.

Below is a comment I submitted to them:
I was appalled at the fact that you charge people without insurance, more than those with insurance. That is ridiculous. Those are the people who need the lower prices. Shame on you!

I'm wondering if this is true for most suppliers? For a while when I didn't have insurance, I went directly into Binson's Medical Supply and used an online coupon, which helped a little bit. I'm not sure if my insurance will cover the cost of the belts, so if anyone knows where to get less expensive belts, please post. I'm also looking for hernia belts. Thanks...

Peace Love in the Universe...

Fellow ostomates,

If you are recommending a product, it would be great if you would include the product number with your recommendation. Thanks in advance...

I was skeptical when I heard about using a Tic Tac in the bag to help control odor, but we (husband has the ostomy) tried it and it works great. Very economical too!! He uses the closed bags with filters....and has had several incidents with leaking through the filter. We duct tape a cosmetic round on top of the filter, then if it does leak, no little brown rings on his shirts....works great. This forum is wonderful and has helped in so many ways! Thanks to everyone!!

I applaud Elzie for starting this thread! It should become a main selection located somewhere on the Home page Main Menu ... at least I think so anyway ... and drawing more attention to this thread will also bring in more tips from other awesome friends out there! I have to think if I have anything to share... I hope so. I certainly know I learned a great deal already, some very helpful things by reading these posts!!

Doe is right,.. this is a great thread and should be easily accessible for everyone,.... lots of great information here and I'm finding out about products that I didn't even know existed,.. thanks all
Rick

Hi, do those of you in the UK with a stoma know that you are entitled to a reduction in water rates (only if you are on a meter), as due to your medical condition you are deemed to be a high user?

Also, I have managed to get an extra waste bin from my local council due to the excess waste I produce on top of the usual household waste.

Hope this is useful.......

Rachel x

For those in the US:
Most insurance companies follow Medicare guidelines for pouch/wafer quantities; to clarify the allowances:

20 drainable OR
60 closed end OR
half and half order: 10 drainable and 30 closed end

Wafers: 20 (for 2 piece)

1 piece pouch: depends on the brand, may be either 20 or 30 depending

Paste: 2 tubes

For HMO's, you can often get a bit more, particularly if a letter of medical necessity is signed by a physician.

I've noticed changes already happening with Medicare coverage and No Sting type skin barrier wipes; recently Edgepark will cover the Reliamed brand but not Cavilon or Smith and Nephew brand for Medicare.

I think Keys girl mentioned the high cost of belts: if it's a hernia support belt and you are purchasing with cash, you may want to go directly to the source (i.e., NuHope or whatever company) and it might be a bit less cutting out the middle man (i.e., Edgepark). Some companies will give you a cash discount, but you must ASK, they won't offer.

And by all means, if insurance gets chintzy, limiting your supplies or paying for less/brand switches, etc., please become vocal, write letters to both the insurance company AND the manufacturer (probably especially them). The power of the pen is mightier than you think!

Medicaid cuts, particularly in California, almost cost patients only having one brand name supplier. Not all skin/adhesives are the same, and something like this could spell disaster as you all know how products can differ as do stomas/bodies. Uh oh, don't get me going... off the soapbox!

Hope this helps.

Fascinating re: Tic Tacs... my question is, were they successful with solid stool or loose/liquid?

And lower water rates... I love that! Wish it were true here. Great thread!

I am just so surprised that no one has mentioned the Sure Seal Rings. They are supplied by Edge Park. They are like a membrane that goes over the wafer before the pouch is attached. If the wafer leaks, the membrane can stop it. Bamatex put me onto it and it is amazing. I am not sure that they are covered by insurance, but they are not expensive. And so worth looking into.