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

Okay people, I am all over the place talking about Colo-Majic flushable liners. Google it and request samples from the distributors. No more squeezing, draining, smelly, and leaky filters. It can keep the stool from leaking under your appliance and irritating your skin because it all goes into the liner and never gets in the pouch. $65 for 300 liners, and you can use the same pouch for days.

I've been using them for about a month now, and I am extremely happy. Check them out.

I realize this is a fairly old post but I have just finished reading every last one and I'm sure I can put some of those tips to use.
What I really find amazing is you mentioned being a mechanic. In my younger days I did most of my own work, (with a lot of information from my mechanic friends) but I can't imagine leaning over a fender with an ostomy, it just boggles the mind.
Thanks for starting this thread, elzie

I also use the 2-piece system and found them to be comparable in price with the one piece. They are opaque and so you cannot see through them - which I like. As for intimate times - Convatec carries a mini-pouch. I use them for the intimate moments. Doesn't seem to be in the way at all. I do not use the filtered pouches however - stool can leak through that filter. Eat enough during the day - watch the gassy foods - and it really isn't a problem for me.

Hope this helps - be well.

I have a urostomy and have a different set of challenges. My bag fills with urine constantly and if I don't empty it hourly, the bulge starts to show. Also, I dislike having my stoma submerged in urine all the time. Two hours at a movie and I sometimes have to hold the bag with my hand to support it on the way to the ladies room, even if I am wearing an oversized girdle over the bag, to keep it from swinging in the breeze. Anyway, at night I hook the faucet on the end of the bag to a hose that runs into a jug sitting on the floor next to the bed. It keeps my bag flat all night and I don't have to get up in the middle of the night to empty it. It's by Convatec and it's called a night drainage container. The supply company I use charges people without insurance $32.52 for it. I have been on private insurance that lets me have one a month and only pays the supply company $16.31. In March I can go on Medicare, thank God. My private insurance costs me $816.00 per month and Medicare is less than $100. The supply company charges Medicare $23.71 (Someone earlier was appalled about people without insurance being charged more, what's the deal with sticking Medicare with $23.71?) Anyway, Medicare will only let me have 2 a year. Totally unacceptable, changing it out every 6 months. The hose starts looking discolored after about 4-6 weeks and I rinse it in vinegar and water every morning to keep the bacteria from growing in it before I hang it up to dry. I don't want to hook up to a filthy hose, so I will have to pay for a new night drainage system, or at least a hose out of my own pocket. The other thing is, the darn hose is too short. My boyfriend has a tall bed and had to take it off its frame and set the box springs and mattress on the floor. I still have to sleep on the edge of the bed. Is anyone else using a better system?
Lin

Good idea, budd002, about carrying tape with you for emergency repairs.

My Ostomy Journey: LeeAnne | Hollister

I can't understand a society that makes people pay for what amounts to an essential for life. Guess it's the old story of the haves and have nots. Sorry for posting this but I'm bewildered by it.

Here's a site for intimate wear for both women and men.
I have bought her stuff and it's of excellent quality.
http://www.intimatemomentsapparel.com/jeanne.html

What a topic, but what a problem. I am not sure if this affects all of us, since we all have different reasons for having ostomies. I did discover that instead of having a lot of leakage every three days or so from a buildup, this could all be avoided if I used a small bottle from a feminine vaginal rinse and used just water from the shower to fill and used as a small enema. This keeps all the mucus rinsed out and helps prevent irritation.

Regarding the disposable bags, they have my vote. I pop the full one off quick, pop it into a zip lock bag, place it in the trash for feminine napkins, and snap on a new one. No noise, no odor, nothing to splash on me or my hands.

Also, women, if you can't find a comfortable fit in jeans, try the maternity section. They have some really cute ones, and their shirts cover the panel.

Lin, I am shocked Medicare isn't going to pay for more. That upsets me, but I do know you can get samples free from every company that sells them at least once. I would write a letter to Medicare, but it wouldn't do any good. I do know if you get an in-home nurse, Medicare will pay for that once a month or more if needed, and the doctor can tell the nurse she can order your supplies. Then you will pay nothing. I used to be a geriatrics nurse. I know there is a way to get a nurse in your home to make those orders, and then you won't have that kind of limit as that is a lot of money out of pocket. Gus is right. I will ask my friends about this and do some research because this is really wrong. Take care of yourself, and I will let you know what I find out. Love, Jenny

I use Convatec disposable system, (a convex backing because I have an "in-nee" stoma) and a disposable bag that has a cloth-type outer lining that doesn't make noise when you walk. Medicare sends a 3-month supply of everything that allows me to replace the backing every 3 days, and all my supplies last almost 5 months. They actually seem to allow more when the supplies are disposable. If you can save by making a change in supplies, it might help leave more in your budget for the night bottles. Just a thought. The ostomy nurse I had for the 1st month helped me figure out which supplies would save me the most money and allow me to change more often. She was a wealth of information since she sees others like us all day and works with the Medicare system. Hope this helps someone. Good luck.

Almost all companies make lock and roll end pieces now. I hated the clamps but really like the lock and roll.

keysgirl, how do you keep the internal liners from filling with air? They tell you to blow into them to open them up, which sounds gross to me, and then push in with fingers. I tried it and mine was full of air. Any suggestions.

I have had an ileostomy for a little over two years, and my worst problem is that sometimes the wafer will leak out one side or the other and we can't figure out why. Sometimes, I can wear the appliance 4-5 days without any problem, and then will have 2-3 of them leak in one day. I use the 2-piece, and put a clip on the bottom because when I first had surgery, I had the bottom of the bag pop open and stool running down my leg. I also have several pairs of underwear with the pouch, but even though they are helpful, they don't really seem to be well thought out in their design. The outside should be higher, and the pouch lower.

Hope to hear if any others have problems like myself.

I have worn tube tops around my waist in the past. Now I use Bella Bands! You can find them in most
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maternity stores or online. I wear them every day with my low-rise jeans again!

Hi, I have the same problem!! It happened to me today - I had a two-piece system on for 6 days, even showering every day, then I changed it because I did not want to push my luck. When I did, I had to change the two-piece system so far 4 times. What I did notice is that my stoma changes size and shape. When it's longer and thinner, my system stays on forever, but when it's short and fat, that is when I have all the trouble. I really don't understand why it does that and I would like some help in either correcting the problem or some way to overcome the issue.

Thanks

Tess

Your going to love this story.
I'm 69 years old and I wear this all the time for support until my hernia belts come in. I went into a local store to buy one. When I got up to the cashier to pay for it, the clerk was looking at me kinda funny. I could just see she was thinking "What is this old guy doing buying a maternity item". I felt she was going to ask, so I beat her to the punch. I told her in case you're wondering, "My girlfriend was pregnant". I thought the girl was going to fall out on the floor she was laughing so hard. Bob

Tess, get either a convex-shaped barrier or ring. What this does is pull out the stoma so you do not have all that acidic drainage at the barrier site. Just make sure you read the directions before using the ring because it looks like you are putting it on backwards. I have an ileostomy and this has saved me so many leaks!!
Eddie

Tess, try a convex ring or barrier. It pulls out the stoma and will prevent leaks. Just be sure you look at the directions before putting on the ring. It looks like you are putting it on backwards.
Eddie

Great tips--thanks! I have a stoma that is high, above my belt line, so I can't comfortably hide it beneath my pants/shorts. I wear long shirts to cover it, and I use a two-piece bag that you can't see through with a nice cover (Hollister 18183 bag). Sometimes that bottom clip part will stick out even when I wear a long shirt, so I will fold the clip part up underneath the mesh cover to shorten the bag. I also keep on hand some good 1' bandage tape, the good stuff made out of vinyl or silk not the paper tape, and will use that across the bottom of the bag and will pull the bag back to tape on my upper thigh to keep the bag out of the way for intimate times.
Now if someone could just come up with a way to keep these stomas from talking! I notice most people give their stomas a male name, but I call mine Pandora. You know, like the Pandora box story--you never know what will come out of that thing, especially noises at the worst times.
KBD

If you're an ileostomy sufferer having problems with thick output pushing the bag away from your skin, and wear a bag capable of being emptied, try adding 1-2 tbsp water into the bag via the outlet when you empty it. If it doesn't directly contact your output while you're upright, try lying down for a few seconds and gently massage the stoma port so that it's cleared.

Here are a few tips learned over my 22 years with a colostomy:
Instead of wearing the flange "square" (i.e. so that the top of the flange is parallel with the tops of your pants), place the flange in a "diamond shape" ... this prevents the elastic of your underwear shortening the lifespan of the flange. I also "picture frame" the flange with Hypa-Fix tape (this ensures the longest possible wear time for your flange and I'm not allergic to this brand of tape). Do NOT use the "vents" or "vented pouches" ... they almost always soak up fluid from the pouch contents, thereby ensuring that everyone in the vicinity knows that you had re-fried beans and a 6-pack for lunch! I keep a bottle of baby powder on the shelf to use on my thigh (just under the pouch), so that on warm days, my pouch isn't making me sweaty. Ever since my surgery, I keep an extra pillow at my right side so that when I am on that side, I can pull the pillow close to me, allowing the pouch (which is on my left side) to "dangle" (this helps to diminish "pancaking" where stool collects at the stoma) ... obviously if you have an ileostomy, the pillow goes on the opposite side. In my kit, I have small curved scissors which I keep sharp for cutting hair close to my stoma and for cutting the hole in the flange. I have found a small light source (battery operated) with a flexible neck and a magnet in the bottom ... this is superb for sitting on top of the Q-Tip lid, right beside the magnifying mirror which I have sitting on the counter in the bathroom ... I stand right in front of this set-up to see where I'm working on my peri-stomal skin.
Since my surgery, I have not slept on my stomach, so the pillow idea is a bit of a minor miracle for me.

Love the "Coins Cover Up"!

Hey gang! There's lots of ostomy supplies out there these days and you can find good undergarments. I have purchased from Ostomy Secrets, Awestomy, Weir Comfees, and C S Ostomy Supply. I have some wraps and I find them to be very useful, but expensive for me. Usually, I purchase underwear and wear 2 pairs at once. I use a hipster or boy leg panty next to my skin and then on top of those wear a regular brief. It works great!

Plus, I have another tip. I purchased a handheld bidet sprayer from American Rinseworks and attached it to my toilet. It has really improved things for me because now I can actually rinse out the pouch completely. I believe it allows me to get another day or two out of the same pouch without having to worry about odors. It also helps to keep the toilet clean!

I have a tip that you may find useful. One of my biggest embarrassments is the sound my colostomy makes. It never fails to happen when I'm around other people or in a quiet area. I've tried to laugh it off, but usually people ask "what's that; that was gross". I've tried all kinds of things to reduce the gas and resulting sounds coming from my colostomy. Well, after much experimentation, I've found the following works very well for me. It would be worth a try for you.

1. Softgel probiotic twice a day (one in the morning, one in the afternoon). I use the CVS brand. Softgels are easier to swallow than the capsules.

2. Aloe softgels twice a day. Aloe helps with digestion and keeping your stomach quiet.

3. Simethicone softgels twice a day (extra strength); anti-gas gels. This doesn't work for me by itself, but in conjunction with the above, it does.

All together, this works for me. I have gotten to the point where I rarely have any active noise problems. I feel much more confident and better able to engage with people in close quarters or intimate situations.

Best trick I have... I wear a Hollister 2 piece... I go to the dollar store and buy doggy poop bags and use them as a liner... works GREAT!! No clogged filters; pretty patterns; LOL and cheap. I change my pouch every 3 to 4 days... I use 2 poop bags every change... one for the liner and one to throw the filled bag into... works like a charm.

That is what I use too. I've noticed they changed the material to denser plastic. I don't like it as well as the transparent one.

Rather than a t-shirt & sewing, buy a cheap fat burner weight belt 6 to 8 inches tall.
Does the same thing. Also, if the doctor will okay and prescribe an antidiarrheal taken a couple of hours earlier, it sure makes the evening "safer".

Listerine strips are a great idea! I assume that you have tried it with no issues? I'm still new to this and worried about hurting the stoma.