Make-shift Ostomy

Posted by Past Member

on Jul 05, 2012

Has anyone ever have to make their own ostomy because you ran out and there was no place to go to buy one?

Comments:

tdbm : ...OR can't afford them?Oh boy, do I want to hear some replies to this question! Jul 06, 2012

Past Member: I had to make one when I ran out heading from Reno back to Las Vegas on a 8 hour road trip. It consists of paper towels, a diaper, and packaging tape. Jul 06, 2012

littlewheel : How about duct tape and a zip lock baggie? Jul 06, 2012

Past Member: Try it, seeps right through the duct tape. Jul 06, 2012

mooza : OMG obviously your American so u dont get free pouches ?? hmm thinking maybe you can try ebay im sure you can buy from there im soo sorry to hear this kinda stuff , makes me feel lucky though but still ... Is it a colostomy if so i would invest in irrigation set or look up on computer about making one to help for awhile :( good luck hunny mooza xx Jul 07, 2012

Past Member: I'm talking about being stranded in the middle of no where. I do get free pouches through Insurance. Are there any supplies that are useful in making a tempory ostomy or in my case, Ileostomy? Jul 07, 2012

Primeboy : What drives me crazy is the high cost of ostomy supplies. Even though Medicare and my other insurance cover my cost, I get sick looking at thousands of dollars charged. An ostomy bag, for example, is as cheap to produce as a ziplock bag or milk carton. The manufacturers, however, charge all they can because they know the government will pay in most cases. The sky's the limit. Going back to your question, LV, it's really a non-problem. As long as we can afford supplies, we just don't run out. These supplies are vital to normal living; and none of us, even people like myself with ADD, would ignore monitoring our inventory. Now, what were we talking about... PB Jul 07, 2012

Past Member: Your stranded in a town without a hospital or a medical store, you do however see a general store and also have cash on hand, what materials would you use to make a tempoary ostomy? Jul 07, 2012

mooza : Well if you get them free mannn you telling us u dont take spare pouches out with you gees i get stranded i have at least 2 with me use a amn bag LOL Jul 07, 2012

mooza : man bag sorry :) u know ova the shoulder or an ugly bum bag :) Jul 07, 2012

Past Member: Hypothetical Question: Your stranded in a town without a hospital or a medical store, you do however see a general store and also have cash on hand, what materials would you use to make a tempoary ostomy? Jul 07, 2012

littlewheel : maybe some silicon glue, or goop (a brand) might make a good seal, and then some kind of bag. Jul 07, 2012

funnygurl : duct tape and glad sandwich bags. They have really pretty duct tape now--leopard is my fav Jul 07, 2012

Mike : they (suppliers) charge as much as they want to they know you need supplies and they dont care Jul 08, 2012

funnygurl : i am hopeful that there will be more competition and more suppliers in the near future. As the boomers age there will be a lot more ostomates. It is all about supply and demand. We have to have them so they can charge whatever they want. Jul 08, 2012

notexpectingthis : Huuummmm.......I am thinking......RED SOLO CUP...I'd fill it up....LOL! but seriously you might could press it against your skin real hard put duct tape over it to hold it down - change or dump the thing when it fills??? I don't know - but I have thought about this myself - what if I forgot my supplies - heck even if a pharmacy was open don't think you could find anything accomodating in there either!!! Jul 08, 2012

weewee : if you were stranded with only cash and need to make shift a waffer and bag. go to the toilet section grab a wax ring for a tiolet cause they also have the plast ring for the waste to flow away from the skin tape your bag to the plastic ring to secure it to the body with a elastic wrap Jul 09, 2012

weewee : if you look at it if they dont have a wax ring then go buy a diaper cut to fit then take the tape and wraparound the daiper andstick to your skin there are lots of things to make shift a emergency fix Jul 09, 2012

Nicky-T : Richard,Lucky for YOU. You did not need to make an OSTOMY (you already HAVE ONE). You just needed something to catch the shit (that's a medical term. It used a lot by the medical professionals I work with and sometimes has nothing to do with stool wherever THAT work came from!).At any rate. Why not just put a plastic bag over the damned thing and tape it with anything that is handy. Duct tape seems like an overkill solution. But it should work for a bit. My favorite tape is 3M Micropore and I never travel without it. I use it to fix a LOT of things. I fly toy airplanes and it comes in real handy for hinge tape, holding on things that I don't want flying off while I fly off. Oh, wait, well you know what I'm saying. It sticks really well, sticks even better once it gets wet, and fortunately even comes off when you want it to.So if you REALLY want to produce an ostomy, I would suggest a sterile number eleven blade and some surgical sponges. And a surgical scrub tech would be handy.NT Jul 14, 2012

Nicky-T : Can you believe all the typos my keyboard made in that last post? Jul 14, 2012

TimothyK : I've had a radical ileostomy with complete removal of the rectum since the surgery in October 1992. I really really didn't want to get it, but they told me I would stay in the hospital for most of my life if I didn't get one. I had already spent what amounted to three years at University Hospital. So I went through it. I've had some accidents at work, mortifying embarrassing, but I managed to get to the bathroom in time. No matter what type of pouch I try, there are still inevetible leakage here and there with few major accidents, some close calls. However, I've found, somewhat mercifully, that most of the explosions I've had have been at home or apartment. So I don't have to go through even more emotional trauma having something like this happen in a group of people. Still, the average person who doesn't know about ostomies become horrified when even the subject is mentioned. They can't handle it, it dissolves their little minds. When I was in the hospital before the operation, some businessman who shared my room freaked out about even hearing about it, and told me f iit was him, he would commit suicide. But I was stronger than that weakling. But I usually keep quiet about it. Overall, let me say it is a very shitty situation, lol, pun intended.I have tried some makeshift attempts at pouchs, zip lock bags with duct tape, even a sock, but it doesn't really work, it comes apart too quickly because of the principles of gravity. Also, it is an unnatural artificial appendage to have, but there's nothing I can do about it. Even after all these years. I've had prospective dates who just couldn't handle it. But an old friend of mine, who is now passed on, said if the women has a problem with it, f-'em. Crude advice but basically true. Jul 14, 2012

TimothyK : And I've made even more typos, and it's even more upsetting to me, since I used to be a commercial freelance writer, lol. But the print is so damn small, etc...Oh well...couldn't even find the delete button to re-post correctly. Jul 14, 2012

TimothyK : I worry about what I would do if a major natural disaster occurred and I had no way to get any more supplies. Being an Ostomate, one is at the mercy of technology. I am still thinking ways to have makeshift pouches. Possibly a thin hot water bottle with duct tape? But then again, there's the Gravity Fail, =X Jul 14, 2012

kbd : Stay at least one month ahead on supplies. In an emergency I'd first wrap it up in toilet paper, then head to a hardware store or other store and get diapers, adult or baby, they are made for catching crap. I'd use duct tape to hold it on as well as possible. Alternately I use a heavy plastic bag and duct tape it as well as possible. If no duct tape or plastic bags I'd look for a plastic bowl or container, maybe even a plastic bottle, but it to size and hold it firm until a better solution was available. But I seriously hope such conditions would never occur :-) Jul 14, 2012

Bill : Hello Ivmak,I couldn't resist replying to your blog even though I am trying hard not to lose focus on other work that I'm supposed to be finishing at present.Having an inventive turn of mind can be both a help and a hindrance in life- The subject you mention needs some explaining. Does this hypothetical situation allow you to buy or borrow tools as well as materials? I have made many such cheap, home-made ostomy aids at home, where I have access to tools, Some of these gadgets work quite well but as I get my own aids for nothing on the NHS I have not had the incentive to use them regularly.I took a photo of the two that have worked best so far but I don't know how to post the picture on this blog so I will describe them to you. I believe these two would be feasible to make in a few minutes with access to what might be available in either a hardware store or general store.Gadget 1) A plastic container for toilet cleaner (available in the UK.)called 'DUCK' because of the shape of the spout which can squirt the liquid under the rim of the toilet.I simply cut it into a shape and melted parts of it to make a flat surface where it meets the skin. The back of it goes over the stoma and the spout faces downwards into a bag (any plastic bag would do)This gadget is simply tied on with a belt tight enough to form a seal without taping. It needed a stiff strip of metal/wood just under the spout on the outside to ensure the tightest of fits as the plastic was not thick enough to keep its flat shape.Gadget 2) I 'borrowed'(stole) a stiff piece of plastic from one of those display cases that hold leaflets. Cut it into a suitable shape (oblong/oval)the height of which was similar to the flanges (approx 9cm). The length was approx.14cm (to allow for the belt to pull the device close to the skin. The hole was drilled with a standard hole cutter to fit my stoma. I attached a Dansac irridrain to the plastic sheet and it has stayed there without problems for at least three months.It is kept in place with a couple of bits of wire and an elasticated belt ('borrowed' from - I forget where! - any belt would do.) I actually use a similar device daily as an adjunct to a hernia belt that I made up to suit my stoma circumstances. So if I did find myself in the situation you describe I would already have the gadget suitable to overcome the problem.It might be worth noting that I use the Dansac irridrain at nights to catch any surplus shit after irrigating whilst in bed. These bags are huge. There is more than enough room for anything that might come out. They are of course folded in such a way that it doesn't simply run straight out of the bottom (or top)as it is designed to do.They are really easy to access for cleaning whilst in situ and they are easy to clean when I've finished with them.I have searched high and low in the hardware section for things that might have potential but to no avail. However I did find a part on a vacuum cleaner that might have made another version of the gadget but I could not find a way of bending the tube so that it would go satisfactorily into a bag.It's a pity you can't see the actual prototypes but I hope the written descriptions help.If you know of a way to post pictures I will be happy to blog them.I agree with other commenters that it seems most unwise to travel without spares of everything.Best wishesBill Jul 16, 2012

Bill : Hello Ivmak,I found out that I could download a photo to 'my profile' - so you can view the two DIY gadgets there. Bill Jul 16, 2012

Tiffy-poo : I would take baby bottle nipple, cut the tip off, and push a plastic baggy through that, but leaving a bit of bag sticking out of the top. The nipple would keep the bag from falling off and provide support. Then cut holes in either side of the nipple, and tie your shoe laces through the holes and around your stomach tightly. But you would have to hold that in place or use duct tape so it doesn't slip off.Say I were driving, and the bag fell off and I couldn't change it right away, I'd grab a pop bottle and push my stoma into the top and hold it in place until I could stop. But that is why we always need to be prepared! I have extra supplies everywhere, my car, purse, desk, etc. Jul 28, 2012

MissMeganM : This is so interesting!!! I've been wondering this SAME THING - really more because what if the world goes ka-blooey, like everyone says it's going to - uh, pretty sure you're not going to be getting your durable medical equipment anywhere. So knowing how to DIY a wafer and pouch may be something we all should figure out :) What I was thinking about doing is looking up old-school ostomy supplies - like from back in the 20's when the surgery first started becoming a practice - and seeing how THOSE were made! Apr 21, 2013

Past Member: I did ont know ostomies were made back in the 20s. Apr 21, 2013

MissMeganM : Yeah, the first ostomy surgery was performed in 1921. So just IMAGINE the stuff they must have made appliances from back in the day. Crazy! Apr 21, 2013

Past Member: wow! Apr 21, 2013

panther : www.stomaatje.com has some history about stoma's says on there Literature shows that there were kind of stoma's in 350BC and there's a mention of them in the bible? Apr 22, 2013

MissMeganM : I don't think I've ever heard that panther, but personally I doubt it. The first ever ostomy surgery was done by a French doctor in the late 1700's but it wasn't until Hartmann's procedure in 1921 that people had ostomy surgery that didn't kill them afterwards. Either way, I'm glad it was invented LOL Apr 22, 2013

Sandi21515 : I am new to the world of ostomies. There was a mixup with getting my initial supplies sent to me so I am one of those with an immediate emergency. An Ace bandage is holding a duct-taped diaper in place. Never knew life could be this exciting! Jun 05, 2016

Past Member: Wow, what a way to get introduced to your first Ostomy bag. Jun 05, 2016

Past Member: Sandi21515--what kind of ostomy do you have ? I have an ileostomy, and I have some supplies that I cannot use. Also, you can call every supplier that exists and they will gladly send you samples to try out. Send me a message and we'll see about sending you some of what I have. I use a coloplast one piece, and I have some of those that are cut to size, so you can cut as you need. I could no longer cut with my hands, so I had to switch to pre cut. I also have some eakin and brava seals and brava strips that I can no longer use. Get back to me, I'll be glad to help you out
Peace
Nancy
PS what's wrong with your wound nurse and surgeon---shame on them!! Jun 05, 2016

Teddiee : I think Tiffy-poos idea is the best!! Top of a baby's bottle, cut the end off, Attach a sandwich bag.

As others have mentioned, I always carry 2 bags, 2 seals, 6 LBF, or similar of those small skin protector wipes, of which I find 3 to be sufficient along with toilet tissue for a good glean up. That said, I have found - AFTER 45 YEARS with my Ileostomy, and trying must be every bag out there, a bombproof bag. I have not had a leak....NOT EVEN ONE LEAK, since I've been using it!! No activity I do budges it!!! Just finished 5 hours of gardening.....digging, weeding, tree cutting, bending over uncountable times - and I don't even NEED to change it!! I will though, as I take my shower in a while. I'm exhausted from all that gardening though, so just having a rest and read on here.... Jun 07, 2016

Teddiee : Oh.....and I forgot to mention.....I take dry wipes in my "emergency kit" and some disposal bags. All these nits fit in a small, zipped top pouch.....and come with me in every handbag - NO FAIL. It's habit now....house keys, emergency kit. More difficult for a guy, but my brother carries his spares around in a LEATHER type wallet. The "bits" all fit in - he is an excellent folder and packer - and he keeps it in his trouser or jacket pocket. The leather helps the products from getting yo warm. Anyone who saw it would think it was just a wallet!! Hey! I'd love to see the expression on the face of a PICK-POCKET THIEF!! when they opened the "wallet". Priceless!! Jun 07, 2016

Teddiee : All these NITS???....sorry, should read BITS.... Jun 07, 2016

LadyHope : This is a very interesting post....I actually thought about it when I first had surgery. I was so worried that I would run out of supplies in the early days. To answer the question... I would mostly likely use a sandwich baggie with duct tape to my skin if I did not have medical appliances on hand. It would be a real mess but it could work for a short time. I also carry the hytape with me at all times, just in case a spring a leak. it is super sticky and will temporarily fix the wafer until I have time to make a complete change. Thanks for the post and the answers. Very thought provoking..... LH Jul 03, 2016

Sandi21515 : Hey dadnabbit,sorry it took me this long to reply but thank you for offering supplies! After wearing plastic leftover dishes & duct tape, I was soooooo happy when mine finally arrived; I felt like I'd won the lottery : ) Jul 04, 2016

Past Member: Sandi21515--glad you got your supplies, can't imagine anything worse than being out. I still feel as if it is ridiculous that some unknown authority decides when we get to change our dirty underware! Hopefully you won't find yourself in that situation again but if you do you know where to find me.
Peace
Nancy Jul 04, 2016

Sandi21515 : Hi Nancy,
Thanks again. Yes it's hard to believe the home nurse & UPS reduced me to leftover dishes for weeks! Yikes!
Sandi Jul 04, 2016

Teddiee : Hmmmm......Tip Folks - NEVER, EVER pack your ostomy supplies for holidays in your suitcase that goes in the plane's luggage hold!! If you arrive at your destination and your suitcase is lost - you'll be in big trouble. Guess you all know this....just thought I'd remind you. I carry ALL my ostomy supplies for my holiday in my carry-on hand luggage. Jul 05, 2016

Marza : Me too, have xtra in purse & car. I order way more than I should but I have insurance that pays for it, fortunately, we're all afraid of an embarrassing "blowout" but you all gave me tips on what to do just in case!! Jan 18, 2017

LadyHope : Well, I thought that I would comment on this post. I just ordered my monthly supplies and the supplier told me that my insurance denied my claim as I am not approved for the amount that I ordered. This quantity is the same quantity of supplies that I have been ordering and approved for the last 4 years. Isn't insurance wonderful? How do the claims people know what I need and don't need each month. I understand Medicare guideline but they are only guideline....not written in stone. Now, I need to sit down and appeal my insurance. I really hope and pray things change here in the US when it comes to insurance coverage and needed ostomy supplies. My last three medical requests for medication have been denied too. Insurance says that I am more that welcome to pay out of pocket for the medicine that was prescribe by a medical doctor but who has an extra couple thousand dollars just hanging around? Thank you....I needed to vent because I am very upset and deflated with this system. Ostomates need what we need to have quality of life....we got the surgery to live and now we are being persecuted for living and needing medical supplies. Thanks for listening everyone. Have a nice weekend. LH Jan 21, 2017

Bill : Hello LadyHope.
Sorry to hear about the problems with your insurance claim. It seems that insurance companies have a reputation for not paying out if they don't absolutely have to but they appear to mind taking the premiums and putting up their prices whenever they feel like it.
You are welcome to vent with us at anytime as we can all empathise with your plight and with your feelings about it.
Best wishes
Bill Jan 22, 2017

kbd : LadyHope, sorry to hear your insurance company is being an ass. If you have opportunity to appeal their decision--it might be worth doing so. If are running low on supplies you might find some at a reasonable price on ebay. I have bought a few ostomy things there. Jan 22, 2017

LadyHope : Thank you very much for allowing me to bend your ear and for giving me encouragement. Yes, my insurance company is being very difficult this year. I am going to appeal their decision. It is ridiculous that ostomates can't get the supplies needed in the US or anywhere for that matter. The number of supplies is based upon Medicare guidelines. Well I need more. It makes me sad to hear of others who have no supplies because they are forced to pay for them completely out of pocket....and our products are so expensive. They should be free of charge or at the very least more affordable. I am feeling more positive today and preparing myself for a nice discussion with the insurance company tomorrow morning. It is Sunday here and going to Church gave me a renewed perspective and a vision of Hope. I have a rough draft of my letter completed as well. If I need to take it to Washington... I shall. Ostomy supplies are an important issue! We need them.... period. Thank you again. Take care. LH Jan 22, 2017

Primeboy : Hi LadyHope. Over recent years I have received notices from my secondary insurer that this drug or that is no longer on the Medicare Formulary. While ostomy supplies may be a different issue, I believe the appeal process is similar. In doing so, I have found that a letter from my doctor indicating why an exception must be made seems to work. Good luck, and be sure to let us know how you make out.
PB Jan 22, 2017

LadyHope : Thank you very much PB for your post. I will keep you up to date on my progress. I hope that I am successful with my appeal. My insurance is a challenge. Thanks again. Take care. LH Jan 29, 2017

Past Member: I didn't understand Bills post. Tiffy-Poo seems to make more sense. I have found the micropore is great stuff, but if you have diarrhea it will seep right through it. I like Hy tape. If you can't afford supplies, a baggie with scotch tape will hold for a few hours, if you don't eat too much. Also an Ostomy nurse should be able to help you if you are in trouble. SHOULD be able to being the operative term. I can't get home health while I have a job. You could call Collaborative Works, in North Kansas City. People donate supplies to them all the time. When I was down and out I even tried some things I hadn't seen before, and learned from them. This place was a God send. I'll bet the might even send you stuff. Look it up. They are only open a couple of days per week, and operate solely with volunteers. Give them a call. Good luck, Dear. Mar 11, 2017

Past Member: LadyHope, how is it going? Did your Dr. help with the insurance Co. My Dr. refuses to deal with Humana anymore, so I am with Blue Cross Blue Shield. My PPO only pays 85%. So there are ostomy supplies, but there is also the 15% copy for my infusion I get every 8 wks. I understand where you are coming from. It's only March so changing insurance means waiting until Jan., if that is an option for you. Contact Collaboration Works, in North Kansas City, and they can probably send you some supplies for free (maybe for cost of shipping). Also, the major supply companies will send free samples. Get some at least once/yr to try new things, and keep ahead of your orders. Mar 11, 2017

LadyHope : Hi Geekjen, Thank you very much for the post. Well, what can I say... I am still arguing with the insurance company regarding my benefits and montly ostomy needs. The medical supply company has been sending the products that I require monthly thank goodness. I did receive a bill last month for the co-pay portion but again, the medical supply company said that they would take care of it. Not sure what that really means.... hopefully no extra charges for me. What upsets me is having to "follow the Medicare guideline"....It seems to be the insurance companies way to deny products and services saving them money. I think of all the years I paid into a policy and I never utilized. Today, I need my insurance and they are charging me, penalizing me. My new insurance bills according to age. Well, I am older so my premium is higher. It is not fair but what is? Last month I used 17 wafers.....insurance only wanted to give me 10. Who makes these rules anyway. Not an ostomate. Anyway, Good luck to you and thank you for reaching out. Have a nice Wednesday. Sincerely, LH Mar 15, 2017

Primeboy : Hi Ladyhope. Wow, this thread goes back years and I see the names of some old friends. One of them (no longer living) told me she had to resort to baggies and duct tape because of cost. This is completely unacceptable today, and I think it is cruel that supply manufacturers are charging what they do and that insurance companies minimize claims. I am very fortunate that I have Medicare and United Healthcare both completely covering my supply costs. My supplier sends me the maximum allowable supplies under Medicare which is 60 bags and wafers per a 90 day period, plus a related amount of strips, powder, etc. I am telling you this because, by this calculation, your insurance company should double what it provides you according to the "Medicare Guideline." I was not a great math student, but I was reasonably good at bull5hit detection. Challenge your insurance company per your state's guidelines. Write to your Attorney General's Office for Insurance Fraud if necessary. Unless we Ostomates make some noise, no one will hear us. Good luck, and keep us posted on your success. PB Mar 15, 2017

LadyHope : Thank you very much John for your post. I am challenging both my insurance company and medical supply company. So far, I have been receiving plenty of supplies. My issue is I use cut to fit wafers because my stoma is never the same size, even after four years post op. Sometimes, when I cut the wafer, it is too large and I can't use it. Stanley just shrinks in front of my eyes to an extra small size while I am making a change. I know it is a wasteful but I don't want to use a wafer that is cut too big. Other times, I place the wafer on and it is too close to my stoma. I feel that I am choking Stanley. So, off the wafer goes and I cut and fit another one. I wish I knew a better way to remedy this problem but I don't. And other times, the wafer just peels off after a day or so. I don't know why. I don't use soap or anything with oil on my skin near my stoma. It is frustrating. Thank you again for the post. I will certainly keep you up to date regarding my ongoing conversations with the powers that be....insurance and supplies. Have a super weekend. Hopefully... goodbye snow for another year. Sincerely, LadyHope Mar 18, 2017

Primeboy : Hi Ladyhope. Forgive me for saying so, but I think you may have spoiled Stanley and he is taking advantage of your accommodating nature. Let me tell you why I think this. A number of years ago, when I first took a good look at my stoma, it scared me because it looked alive. It was heaving and hoeing, swelling and retreating. At other times, however, it seemed asleep. I came to think of my stoma as a temperamental volcano. Anyway, the shape-shifting behavior you describe seems to be connected with peristalsis, the wave like motions of our intestines when pushing stomach content out. I will not change my bag for several hours after I eat until I know my stoma is dormant. It is always the same size when dormant; and, for that reason, I always use a precut wafer. So, you may want to consider measuring your stoma when it is dormant, because that is probably its average size, and then use precut wafers. On another note, I don't know why your wafer would peel off after a day's use. I usually get 4-5 days out of mine, but I get less if I accidentally use too much stomahesive powder. Good luck with your campaign! PB Mar 18, 2017

LadyHope : Thank you so much for the words of encouragement. I try not to get to consumed with changing my wafer and monitoring Stanley's behavior. Yes, a temperamental volcano is a great analogy of dear Stanley. I should change everything when things are quiet but I usually eat breakfast and begin the process. Not a good plan, but I can't think in the morning without my breakfast and at least a cup a tea or two... LOL. I will keep you posted on my progress. Thanks again PB! Take care and have a terrific weekend. LH Mar 18, 2017

LadyHope : Hi Everyone....here is a quick update regarding my insurance and ostomy supplies. Yesterday, I received a bill for $478.92, and the date posted on the statement is 1/2016. I contacted the medical supply company to find out the particulars of the charge. Of course, the office was closed for the weekend. I left a detailed message. I can't believe that they billed me over one year later. I will keep you posted. There must be an easier way? Thanks everyone. Have a great evening. Sincerely, LH Mar 19, 2017

LadyHope : PS - Today Stanley was much more cooperative and I had no issues with my wafer change. Cut to fit and it fit fine....Let's see how long the wafer sticks to my skin...hopefully no peel off - 3-4 days is usually my average wear time. Crossing my fingers....LOL. Mar 19, 2017

Past Member: keeping fingers crossed. Mar 20, 2017

Primeboy : Good luck, Janet, in taming the beast. My greatest resources in my early ostomy battles were friends here at Ostomates who published extremely helpful information not covered by the few ostomy nurses at the hospital. Other great resources were video clips on proper ostomy changing procedures made by young ostomates for YouTube distribution. Their work gave me years of contented ostomy living and a desire to share what I have learned with any and all apprentice ostomates. PB Mar 20, 2017

Sis :

for people having trouble ordering stuff thru medical supply companies and paying thru the nose. I found you can order supplies from Amazon if you know your model # for a lot less than what medical supply companies will charge you. Mar 20, 2017

Sis : Plus, you don't need a prescription from your doctor. So that saves another office call to the doctor.

Mar 20, 2017

Immarsh : Hi All, very interesting comments. I am one of the "oldies" 50+ years with an ileostomy, so you have no idea of just how lucky you all are. I tested many products back in the day, for the few supply companies that were around. We advised the "president" of one, to make a muddy mix ( or choc pudding) fill a pouch and wear it for a few days... Some of the then executives did. My original permanent pouch was black, "rubber" the flange was clear plastic, and was held to the pouch by a swivel hinged disc. The glue was flamable, and came in a can, with a brush, and one had to brush it on both the flange and the skin and wait until both dried so they'd adhere to each other....if not, you would burn your skin. I Owned two pouches, so that one could be washed out, while I wore the other....Life was really messy, back then, but it prepared me well for my babies dirty diapers. BTW, that was my inspiration for a make it yourself "pouch", when I was on an emergency run to the hospital, with a bleeding stoma ( BRooklyn into NYC) a pamper and a lot of surgical tape,did the job.
Other than that, in all the 50+ years, I've lived on the edge, and never carried extra supplies ( other than tape) with me. If I had a leak, I could always, plug it with toilet paper and tape it closed. I guess that's the preparation mentality of a 15 year old. I only got caught once, when teaching, when I had to leave school, find a surgical supply place, and purchase off the shelf. I guess I should have learned from that....but never did.
However, I do carry my ostomy supplies, along with diabetic supplies, c pap machine, and medications in a carry on bag when traveling. it's a sight to behold, when they make me open and sort through the case. More problems here in the US, than in any other part of the world.
Re: prices of supplies & drugs.....I recently ageed to take Harvoni ( for Hep C) which I've had since before it was named. The cost of the pill....$1,400 a pill, for 90 days. Dot the math! With insurance, it was $1,400 for 30 day supply. If an agency hadn't covered the cost, I could not have afforded to take the pill....and would have to have lived with the virus, and the ongoing liver disease until "the end". Prices of Ostomy supplies just keep going up....because they can. But there are also places in t he world, where supplies are to expensive, or are just not available. I traveled with a suitcase full of extra supplies, to send to one of our members in Papua new Guinea. People there just do without, and wear an improvised diaper. So as difficult as we think we may have it....it can always be worse. Best wishes to all. Marsha Mar 20, 2017

ladyjane : I really feel bad for osteomates in Puerto Rico or other disaster areas. They must be having a hell of a time. There are some good ideas here, thanks for all of the input Dec 13, 2017

Immarsh : HI ALL, For those who don't know it, there's an organization, based in Washington DC, that gather's supplies from all over the country and stores them in a warehouse in Kentucky. to send to people/ countries/ doctors across borders who are in need of supplies. It's called, FOW, or Friends of Ostomates Worldwide. I've spoken to officials a few times. Although they can send supplies around the world, they do not finance getting the supplies to the warehouse. Between what I have, and few of my friends ( who get endless supplies from Medicaid) I could fill a truck....but don't have enough money to send it to them, or to my " friend" in Papua New Guinea... who supply people who do not have money, or insurance. It's sinful that we in the US. This is for Lady Hope, Janet... I use to pre cut wafers all the time, until I found convatec's moldable ( flat of convex) wafers. The opening is made for you ( and is quite small) but all you have to do, is stretch the opening ( like old panty hose } The wafer is make to form a " collar" around the stoma, and it softens & hugs it and helps prevent leaks. If it doesn't form a " collar" I fill the gap with stomahesive powder, which then becomes like glue and fills up empty spaces. You might want to try a sample of it by requesting both pouch and wafer from convatec. Regarding the best time to change..... as nice as it is, to be able to eat first, easting stimulates intestinal movement....and digestion begins. That's why Stanley moves, and changes shape. If you want enough free time, ( to change) it's best to do it, long after you've eaten ( like before breakfast, or when you get home before dinner, or ....later at night before bedtime. My ex use to come home from work, and I'd have dinner ready to go, and he'd as if he " had time to change". I always said yes. it made what could be a hour task take less than 10 minutes. I think my shortest changing time is about 5 minutes or less. Best of luck to all of you.... Venting about the ills of insurance is a very common issue. I've been told that mediaion I was currently taking was no longer on the medicare formulary. After I stopped a supplementary diabetic drug,, I was told that my doctor could write a letter, telling " WhY" I really needed it. Do they think that my doctor just prescribes for the fun of it? There is a serious problem in the country, because there is a " Pay back" between doctors & the drug companies... who try to convince doctors to prescribe a specific drug " they are pushing/ promoting". The patient, doesn't know who to trust!!! Dec 13, 2017

ladyjane : I found this video on youtube on how to make a home made ostomy bag. It is in another language, but you can see what they are doing. https://www.youtube.com/watch?v=88pkPpzr-kw&t=2s Dec 13, 2017

Immarsh : Hi Janet & Friends, what you're seeing here, is what use to be " temporary" appliances, that were basically a piece of cardboard, with a glue substance on it, attached to a plastic bag. That's the first appliance I wore when I had my surgery over 50 years ago and it took nearly a year, for me to heal, and be ready to be fitted with a plastic wafer, and a rubber bag. The Seeing her home made pouch, brought back memories of that time... those bags might have worked for a Colostomy, but with the more liquid flow of an ileostomy, I had to change several times a day......for months... I am so grateful....for today, and where medical / surgical supplies are today. And I feel for those people in 3rd world countries who do not have access to real ostomy supplies.. Dec 14, 2017

Puppyluv56 : iMMarsh, hi! I found that info thru my Ostomy Nurse. I had some of the convetec moldable that I did not like! The adhesive was always giving and stool would push it up and leak. I guess it was even though it was a one piece, there are stree steps to it! Those bags lasted only hours to 3 days. I changed to Coloplast one piece that are not precut. Thought I would hate that but the precut did not alway fit with my stoma changing stoma. I get a much better fit cutting them myself. Those pouches last up to 8 days, sometimes 3-5. I just put on a convetec 2 piece today. Very interesting! So I am collecting supplies as well. So I may be sending the ones i do not like to this charity! May hold on to them for a while because I hope to start irrigating in the next week and hopefully will not require any bag and if my comfort zone does not allow me to go without, maybe I will order daily, closed pouches that come a lot more to the box! Are you saying that you have an acquaintance in a third world country that could benefit from spare supplies? Aug 15, 2018

dls : Ladyjane et.al.: I too found the Utube video on how to make a stoma pouch. I think the language is Farsi, but I'm not sure. Anyway, it is well demonstrated and certainly doable. It uses underpads-cut to to a square any size you like, then cutting your Stoma opening size in the center. The video is really good about showing how to thread the bag, secure it, use double stick tape in the body side, and any tape you want all around the perimeter. I really want to try this--but where can I find bags that are longish and thin (less than a baggie)? The new bag uses a clip, which I don't know how to do. If you can't use Ladyjane's link, just get onto UTube and enter DIY Ostomy, thats how I found it. Aug 19, 2018

dls : I really love you guys...still a newbie I have learned so much from each and every one of you. Despite my lingering depression, armed with all this new knowledge and, well, here you are if I need you, I'm really coping well with old Stomy. I don't know why, but I think of my stoma as male, yet I am totally female (OK, I was a bit of 'tomboy' when I was little but turned out to be all-girl). What bothers me the most is why so many of you were released from the hospital or rehab without training, call numbers and other 'help'. Here's what happened to me: my first (and only) colonoscopy revealed stage 3 rectal cancer, May 30 2017. FIRE at my medical group, as I have no other physical problems or diseases. SIDEBAR: God Bless each and every one you dealing with multiple problems. As I read I often wonder how you deal with absolute hell on a daily basis AND live your lives. You're the little miracles that keep me going. OK back to me. The month of June '17 was spent inserting my mediport (for Chemo), about a thousand tests to make sure nothing else was wrong--they even checked my feet for foot fungus! They did discover an umbilical hernia--developed over years. When my husband died 17 years ago, I was young, strong and healthy -- fit to raise our seven year old and do all the 'man stuff' around the house. It developed over years of snow blowing, lawn mowing, leaf raking, climbing ladders, minor home repairs (some ratchet wrenches are really heavy) and minor plumbing fixes. I live in a 1925 faux Victorian and it is a big old house, thus the hernia. Mid-July through August I wore a Chemo pump 24/7 and had to report for radiation every day except for weekends (Holidays included). Now the fun part. I had a 10 week 'resting period' that was horrible. My tumor had been shrunk to .5 of its original size but my rectum was obliterated by the radiation. As I had no other outlet, I had to use my rectum, raw and without any of natures protective moisture, also during this time, I was fecal incontinent thus my intro to adult underwear. When 'offloading' during these weeks, I would sometimes pass out from the pain even though they were giving me heavy duty pain meds. They knew it was difficult and did all they could for me, but the 'resting period' was important as the radiation and chemo have a lasting effect and I needed to be as clear as possible before surgery, but waiting much longer could cause scar tissue to form and my surgeon would have none of that, So, on November 9, 2017 (would have been my 26th wedding anniversary) Three surgeons worked on me for 3.5 hours--no more hernia and I gave birth to Stomy. He will be 1 on November 9, 2019, but he seems much. much older. THE GOOD STUFF: Everyone who has said be your own advocate is giving you priceless advice, and possibly saving your life. Regarding the most extensive surgery of my life, I had a far different experience than so many of you--and you should never have had to suffer. TO WIT: After all the testing, I met my oncologist who brooks no BS and after reading all my test results looked me straight in the eye and said 'Donna, we are going to make you well' The one and only time I had to phone he called back within minutes and took every word I said seriously. His advice proved quite valuable. My wonderful surgeon had TWO 45 minute meetings with me to explain everything that was going to happen to me, how long I'd be in the hospital, how long I'd be in sub-acute care (10 days), the he even has his support staff schedule home health nurses when I returned home. It was my surgeon, who has been working with same W.O.C. nurse for years that set me up with an initial appointment BEFORE my surgery. My nurse spent --get ready--ONE HOUR AND FORTY-FIVE minutes with me. This is the practical aspect. While my surgeon answered all my medical questions, this woman handled the fear and trepidation while educating me about appliances, pouches, powders, 'chauk' and all things ostomy. She had me stretch my arms over my head, sit and bend forward in order to determine a good placement for my stoma, although she told me my surgeon would change the location if necessary. I was given a folder with tremendously useful information for a total newbie, and of course her card and email address. Only had to ask her a question or two, each time she replied within 24 hours. During our time together she also chatted with me about looking at my stoma, what constitutes an emergency, and the many things I can handle myself--always telling me that in the beginning if I'm too afraid, she'd be there to help. And she was, along with my home health nurses, all of whom were W.O.C. trained (I had a really good surgeon). When I awoke from my surgery my windowsill was piled with boxes of ostomy supplies ad accessories--my surgeon and W.O.C. nurse will not allow a patient to be discharged to sub-acute care without a minimum of two to three weeks worth of supplies. Should there be a problem, they will send additional supplies to your rehab facility. Oh, on the day of my surgery my nurse came to see me and check the operating room applied pouch. Before I left the hospital, she came to my room and we changed my appliance together for the first time. I was still pretty out of it, and my hernia pain was off the charts, nevertheless she told me that after working with patients for many years, I was going to do well. So far, she is correct. My car service delivered me home, and my driver carried my suitcase into my house, as you all know, you are extremely limited with respect to lifting, plus your as weak as a new kitten and shouldn't be doing much except healing and learning to use your new toys. Yes, I am going to be experimenting with 'homemade' appliances, right now I'm working on a prototype for a better filter cleaner. Rather my bag fart than fill with gas. Thanks for reading. Although this was the worst health disaster of my life, I wanted everyone who has had a bad experience that it doesn't have to be that way. My treatment was organized, seamless and well executed, the reason being is that a 'good result' not only saves my life and 'catches' any possible problems, bit makes the Medical Group look good. I live in a suburb of Buffalo, NY where Roswell Cancer Institute is located. I did not ave my treatment there. After 'my day at Roswell' I decided to stay with my medical group--The Buffalo Medical Group. Good idea. In 2017 this group was voted the #1 Medical Group in Upstate NY. Also, my oncologist and many of the cancer docs also work at Roswell. OK everyone, take care and be healthy. dls Sep 03, 2018