More Ostomy Supply Issues - Will They Ever Get it Right? | Let's Talk IBD
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- Опубликовано: 6 июн 2024
- Today I am sharing my recent ostomy supply order which, yet again, has issues with the adhesive remover included. I also share putting supplies away in to my ostomy supply closet, and an an ostomy bag change sharing how they don't always go perfectly!
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Hi, I'm Maggie and I have Crohn's disease. I am thrilled to be here sharing my personal experiences with Inflammatory Bowel Disease as well as living with an ostomy. I'm proud to share a little bit from a clinical experience as well, having worked as a GI pediatric nurse and ostomy telehealth nurse. I am so glad you are here. ♥ #ibd #crohnsdisease #ostomy
![TRASH or PASS! Eminem ( Houdini ) [REACTION!!!]](http://i.ytimg.com/vi/cB1WrZcMwMc/mqdefault.jpg)
I am in UK and have found over the years that it's a good idea to keep a months worth of supplies in a box and when i come to the end of the last box of the bags from the previous month, order a new batch of supplies, open the box from what I'd held over, and keep the new one in storage, and just keep switching out the months worth i already had in storage and store the new supplies. This way if there's a problem with an order, you never run out. Hope that makes sense 😂
I have a battery powered hand fan I use to dry my skin protection spray. Saves me time, and also stops me fainting from hyperventilating from blowing to dry it!
I do that to glad I’m not the only one as my stoma nurse told me off for doing that 😂
@@CattyT1I have the same thing, got it from Amazon. I use to take a paper towel folded in half and wave it over my skin.
@@jojogreen_muaI hope she was nice about it. I have found some stoma nurses are very firm when they say things.
Pleased to hear I’m not the only one with a sensitivity to Coloplast bags too
Hi. I use Byram and have never had a problem. I’ve had an illiostomy for 9 years. I would recommend them.
Newbie diaries… I made a small change to my order (to pre-cut flanges) and it’s taken 2 full weeks to get approval by my Dr and the supplier with daily phone calls to both, basically 3 weeks from order to arrival… no wonder I’m always chronically low on bags, wearing them longer than I should have to. I hope my box is correct so I don’t make ANY changes next month!
I don’t understand the approval for everything ! I asked them to send me adhesive wipes and they told me they’d need a script and it would hold my order up. Seriously!? For adhesive remover? I don’t get it! I asked them what do I do when my surgeon retires? I havnt even seen my surgeon in 3 years.. so annoying!
I use Byram's online ordering for my 17 year old daughter--- takes me 3 minutes and the order that arrives is 99% correct. One time they sent 5 barrier rings instead of 5 BOXES of barrier rings but I had plenty so I let it be. :) Knock on wood I've been happy with Byram. Your videos are so much fun to watch but I feel badly you've been through so much!
Thank you for these videos. I am having an ostomy at the end the month and your videos have given me a wealth of information and question to ask the WOCN and my insurance company.
I keep my supplies in an old steamer trunk . I use it in the living room as a coffee table as well. I had lots of extra supplies as well and donated them as well.
I’ve FINALLY gotten my ostomy products correct (knock on wood), but am currently working on getting my Crohn’s meds set up correctly. I’m sure that no one other than those of us with chronic conditions know how much time is spent on phone calls and online taking care of these issues. Sigh.., Sending you positive vibes from Seattle!
Can you send the supplies back? Talk to a supervisor about messing it up. So very frustrating! Congrats on your job. You’ll be great! Happy Birthday. Mine is Tuesday
Did you know that with an ostomy you can claim disabillity payments?
@@monikamichaelis-iw3toreally?
@@HopeofGlory-qx4lk when I had my ileostomy I had joined the local ostomy society and that is what the said.
@@monikamichaelis-iw3to oh gotcha! thank you for thinking to mention it! I’ll look into it. 😉
It is so good seeing you feel so good, makes me feel happy
I’m in Australia and everything is covered by the government. We pay a yearly fee of about $60-$70 and a set fee of $13 per month delivery. For this we are entitled to
One piece
1 piece closed flat pouches - 90 per month
1 piece closed convexity pouches - 60 per month
1 piece flat drainable pouches - 30 per month
1 piece convexity drainable pouches - 30 per month
1 piece flat urostomy pouches - 40 or 60 per month, depending on product
1 piece convexity urostomy pouches - 30 per month
2 piece - base plates 20 or 30 p/m depending on type
Pouches 30, 60 or 90 depending on bag
Adhesive and barrier wipes 60 per month
Sprays 1 barrier and 2 removers p/m
4 hernia belts p/y
Paste 2 p/m
Seals 30 p/m
Extenders 60 p/m
Lubricant deodorant 1 per month
We get to pick our supplier and choose whatever brand we want. Most orders are done on a portal and you are emailed if something is out of stock so you can organise an alternative.
You are living in the wrong country 😊
If the government covers that then why wont they cover my CPAP equipment. 😭 So inconsistent. It costs me a fortune and I am on the disability pension. I am in Victoria. Some states do have help but not all. Good to know this stuff is covered by our government because I was just wondering as I may need one of these one day. Thank you for listing the costs! ❤
The cost may be less with a healthcare card
@@wendyjohnson5711 Hi Wendy, I just got told I will likely need a stoma after my hysterectomy because my endometriosis has caused me serious bowel issues and adhesions. I knew this would happen. Before I make the decision to go ahead with this surgery, I am just wondering if there are samples I can try (I have skin problems and adhesive allergy) and where did you manage to get these supplies for your ostomy? Can you please help me? I am in Victoria.
I always look forward to watching your videos! I makes my feel less alone ❤️
There are always friends here 👍
Have you thought about donating any supplies that you don't use. My daughter in law just had just get an ostomy. She doesn't have insurance to cover her supplies and if there was an option for people like you could help people like her. Just a thought 😊
I've seen people offering supplies on community Facebook groups and you should check with local community organizations sometimes they help with medical supplies. Also maybe your local department of social services can aid in resources. I'm praying for your daughter in law.
What type of pouch system does she use? I had a friend whose husband had a temporary ostomy because of another surgery. She sent me a ton of unused stuff. I'm using pretty much all but the two piece convex with open pouch. I could use them in an emergency but, I use the single pouch convex type since my stoma doesn't come out very far. I'm jealous of Maggie's perfect looking stoma. Mine's oval as well. Anyway, his came from the VA as well as I get mine from the VA but they won't take them back. I just have them all in a big trash can in their boxes that they originally came in. But, don't know who would actually take them. Apparently when you get them no one is able to take them which I find very strange that I guess for health purposes they don't want to take them from people that have extras. Let me know if she can use the two-piece convex type. It's such a waste because ostomy supplies are not cheap.
Omg when I first got my bag I sat in the bathtub and cried as well ha ha.
Why is it so much fun watching you change a bag?! 😂
Feel really lucky. My WOCN is a Godsend and between her and my surgeon everything is smooth sailing. I've been with Byram from the beginning and have never had them make a mistake with my order or experience shortages. The only issue I've encountered multiple times is the delivery service seems to think dropping my package at the garage door saves them a walk of 20 feet to the front door. Have come close to backing out and running the box over!
It’s the same way with feeding tube supplies😩 I have found out that giving the rep on the phone the exact reference number of the specific supplies I need will get me the right supplies more often than not😅
I had a colostomy for 7 moths and I think one of my orders out of 7 was correct. Wrong products, other people's orders, and yes, one wafer in a ziplock bag instead of one box of 10. I was blessed to have a reversal but you are 100% correct, it is a mess!
Funny, I thought the same thing after my last bag change - that it felt so good! I'm sorry you're still having supply issues. It's hard to believe they keep getting the order wrong. I hope it gets straightened out for you soon. And congrats on being Stoma Cloak's ambassador. I bought one months ago after hearing you talk about it and I like it. I wear it any time I go out of the house and like that I have the confidence that it will stay on and not fall off. 💜
Thank you. Hopefully they get your supplies straight!
Girl! You go and have ALL the fun! No one deserves it more! ❤❤❤
Can you contact the manufacturer of the wipes that you do like and let them know your supply company is continually screwing up you order? I'm sure they would want to know if they are sending out competitors products/ messing up orders. Also I use 180 medical for my catheters (I don't have a ostomy as of now), and they've always been great.
My incision site is still numb and it's been 30 years since it was last operated on. I cut into it's one time using fiscar scissors when trimming the garden down there and didn't even know it until I got blood on my hand. FYI, I don't use big scissors anymore! Lol. At 61 nature is taking care of that and just not a big deal anymore. I know, TMI, but that's how we swing in the ostomy world. Lost the modesty a long time ago and it was reestablished when I had to use a bedpan with a male nurse. When you gotta go, you gotta go!
That would be interesting how you store your medical supplies in your medical closet.
I like your supply closet! Good to have! Happy early birthday, Maggie! ☺️🎂 🥳 🎉 🎈 🎁 🎊
Maggie it's lovely to see your smile & sparkle in your eyes ❤❤ I hope this helps that last year when I had my urostomy/hysterectomy surgery it took approximately 4 to 5 months until I got all the feeling back in my abdomen. The feelings soon came back once my stoma started to heal & settle down. Sadly I've had so much trouble with my midline wound, with it still being open approx 2 inches in the middle along it's length. It's now over 12 months since my surgery & I've been put on the waiting list here in Australia which hopefully means I should have surgery to fix it within the next 90 days. I hope you, Zac & man child have a great weekend. Please wish your Dad a belated happy birthday 🎉🎉 Much love Maggie ❤❤
I had a hysterectomy years before my urostomy and they went thru the same insision from my endometriosis which is vertical from a little below my bellybutton to about 6 inches down.
Love the new towels!
I'm glad to hear we all have issues with stoma change I thought it was only me thanks Maggie for sharing ❤
Do not use those wipes. You are correct. They are actually oil based and made for medical adhesive removal. Its isoparaffin based which is chemically mineral oil. It can really hurt adhesion not just sting
Too bad you couldn’t just keep 12 boxes of wipes from the 50! Makes me appreciate my supplier. I use Edgepark.
When I was in the hospital (on the "ostomy" floor) they used Remove and UniSolve (both by Smith & Ne...) for ostomy bag changes. That was what I was set up with when I first went home.
Hi Maggie, so sorry to hear! That is super frustrating. I use Byram and they are very good, support people are knowledgeable and they are prompt and accurate.
I’m so glad you talk about this. Reordering my supplies is a literal part time job. I have a recessed stoma and sensitive skin plus my stoma keeps shrinking. With that I sometimes need different supplies from the month before.
Byram then stopped sending me adhesive wipes and tells me they need a separate script 🤦🏼♀️
Also had the last order with 1 skin barrier wipe in a ziplock . Then they sent me Convatec wafers with Hollister bags.
I eventually put a negative review and got feedback from the company but it’s exhausting to do this just to get medical supplies😓
I have Adapt also. I have never had a problem with them. So sorry they messed up your order.
Hello and good to see you again and congratulations on your new job and have a great time with your Birthday fun ! 😁 take care 🙂 ❤️
I felt this in my soul. The past 5 times I’ve gotten my ostomy supply orders they’ve been wrong. I prefer two pieces so tell me why they send me the wafers without the bags..🤦🏼♀️🤦🏼♀️😂😂
Hi Maggie and zac first of all I have to say I have watched your vids about 4 years now and love watching you and zac and flowers and dogs .and where you live .it's lovely.i had a full hysterectomy when I was 50 and lost feeling around the wound site .I was slim still am.and had dissolvable stitches on outside and no probs but feeling came back gradually .but never bothered me.and you are slim as well .take care and as your a nurse you know not to do anything heavy or lifting. From u k ❤❤
I use Colonlast for my urostomy with an innie stoma. I need to use the extra adhesive strips and boy are they hard to get off your skin. I like how easy your flange came off. I also want to call them about what other style bag I can use due to leakage and maybe not having to use the extra strips.
I work in education and we frequently receive expired supplies as donation from patients and clinics because the supply companies send to many, things like flushes etc. but then of course other supplies they never have enough of. It’s such a waste and a shame!
My supplier told me that the Convatec Esenta Remover SPRAY is too expensive and most insurances won't cover it, so they no longer carry it. They DO carry the wipes AND they carry the Esenta Skin Barrier SPRAY. I order my Remover Spray online for $14.95 each.
Maggie! What a mess with ordering supplies! Oh how I wish I could help you get them organized. So far we've been very lucky to be getting supplies correctly. My hubby has both a colostomy and a urostomy. He's trying several options as he has problems with the wafers lifting and both of them. So far he can get 3 days on the urostomy (and we are just now trying Coloplast). His output with the colostomy tends to go under the wafer even with using paste, eakin seals or adapt cera-rings. Very frustrating. Do have to say using closed colostomy bags have given him more confidence.
Look at home care delivered. That is who I use and they are wonderful!!! Never had an issue
I am new to having an ileostomy stoma and appreciate all the sharing you do. Can you please explain why you do not use a one piece and why you do not use a drainable pouch. I have been watching you religiously the past few months but seem to have missed the explanation. Thank you.
Glad to see you are using both of your TJ Maxx towel sets, but why aren’t you using the bath towels that match the green hand towels?
Ugh!!! That must be super frustrating? 🥶. . I use Byram , don't know if they serve your area? But they have not have made any mistakes. I hope you get your order fixed. ❤
My husband uses Byram too and have had several problems over the years. He has two stomas which causes them all kinds of confusion. He is lucky if a month goes by where he doesn't have to call them about something. You are lucky not to experience any issues.
I am sorry your husband had problems with. Byram. . Hope he found a better company. 🙏.
Happy 21st, 🎉🎉, plus a few to you both. XOXO 😘 🤗 😘 🤗
Lol, you just reminded me that it's time to reorder my supplies ... even though they STILL haven't sent everything from 2 orders ago.
maybe you should call them about that first....
those wipes are for iv dressing removal and work well for that
Oh neat video for diff companies
As a call centre worker the onus is on me to place the order correctly. Generally warehouse literally just fill orders from a stock sheet.
That is so bad. I would be embarrassed if I'd taken your call & screwed it up but then not to fix it when it's incorrect is over the top.
Do you have to return the items? Geez good help is hard to find huh! Happy birthday to your daddy. You share a birthday with my Grandson ❤️
Love the BOSTON sweatshirt my home base❤
I use Adapt Health for CPAP supplies. I have had issues with them sending me the wrong supplies too.
send this video to the stoma supply company.... maybe that'll teach them
I’m from the UK and my supplier is coloplast and they do a great job and I order through their website and u can order other brands it doesn’t just have to be from coloplast as I have some items from charter… I love watching your videos ❤❤
Does the NHS still cover it if you order directly from them? I didn’t know you could do this. X
I’ve had my Ostomy for going on 3 years now and I have nothing but problems with my supply company
Hi I am on newzealand we are covered by the government it would be frustrating having your order mixed up ibrelly feel for you having your incision thanks for showing new ones by changing on line
In glad I'm not the only one who has been having problems getting ostomy supplies. I go through a home health agency because of other health issues and they provide help getting my supplies. Well, I have to catheterize and flush multiple times a day at least 3 times a day. I usually get 30 syringes a month. They have been only sending 3 syringes a month. As for my ostomy supplies, I would love it if they sent 50 boxes of adhesive wipes. The other issue is that because I'm disabled and can't stand up and get to the bathroom by myself I have these stretchy guard things to put around my flange for extra protection. I usually get two boxes of those. Well there was one time I don't know if there was a misunderstanding on their end but they only sent me ONE guard. Me and my parents laughed for a week straight every time we talked about it. These companies need to get their stuff in order.
Forgive me if you have already done a video about this but, could you do a video about dealing with your bag being wet after a shower, swimming etc. Right now, I shower when I change my appliance as I can't get my head wrapped around getting it wet. Thanks!
Have you tried Glad Press'n Seal? I roll up the bottom of my bag, tear off about 8 inches of the wrap, stick it right over my pouch and then shower. It sticks just enough to your skin and removes easily when you're through.
I have a box of those wipes that a friend gave me after her supplier substituted them for the ones she'd ordered. They're great for getting labels off glass jars that I want to reuse, or peeling the annoying labels off my new laptop. But for getting a wafer off? Forget it! They smell like paint stripper and sting like alcohol, and my stoma deserves better than that!
I get 50 or 25 in a plastic bag and they are so tiny too. They don’t do much either. I’m the same way with my urostomy bag from Coloblast it’s clear. I really don’t like looking at my out put.
Maggie, sorry for question, if you don't mind answering, but do people with ostomy bags get the disability payment? If not they absolutely should receive the payment, I understand it's not much, but still so many products need to be covered by government not the insurance
Wrong. Byram has quit sending any sprays adapt ptoducts. StRted with adhesive 2 years ago. And now remover.
My birthday was yesterday May the fourth 🎉😊
Maybe as a nurse, you should pitch to this warehouse company that you should help them with their ostomy catalog and help them with the current ordering system. ???? Could be an opportunity!?
I've noticed in this video (and in older ones too with different products) that you don't leave any gap between your stoma and skin. Looks like you squeeze your stoma through the wafer. I assume you've never experienced negative effects from this.
Would be good to hear your likes and dislikes of Convatech. I sampled them 5 or 6 years ago. Found the wafers to be very stiff. I was hyper aware that it was on my body. I've had my ileostomy for 11 years. And have had 2 stoma revisions. Most recent one was this past December. The reason I've needed the revisions is something no doctor I've talked to (or any my Surgeon has talked to nationwide) has seen before. Over 4 to 6 years my skin hole (where the intestine is pulled thru) seems to try and close. My first two stomas I settled around 23 to 25mm in diameter. And then by the time i needed surgery 16mm or below in diameter. Almost like my body is too good at healing. See's it as a wound it needs to close. It happens very slowly. So slowly that I didn't notice it the first time until my stoma was down to 16mm in diameter. Might sound like "How could you not notice?". Fair enough. But when you're living and not experiencing any real issues..you kinda just don't pay attention. I'd just cut my wafer's smaller and smaller. Feel a little dumber saying it but....
I've thought about posting a video incase anyone else is out there who's had it happen. But...I really don't think there is. My new stoma is huge. I'm 6 months post op. It's a long oval at the base. About 30mm top to bottom. Maybe 26/27mm on the sides. It goes flush with my skin when I lay down. But can be 1.5 inches long and maybe a tad longer when standing...
Hi there I'm very new I can pause be getting a bag in the next few months I had a couple questions like dietary stuff and what do you do if it's not runny. Also I would send the extra supplies back so the insurance company is not wrongly billed
I bet the wipes would be good for someone with the diabetes pump thing. To take that off since there’s no open wound area.
You got some of your frustration out by trying to open that box. 😂
My ostomy supplier has an online ordering system. Seems to be pretty good. My tale of getting started is that my Medicare+ health provider is that they could not give me a supplier that was doing ostomy supplies OR that was considered a ‘good’ supplier. Did some digging with my ostomy nurse and she pointed me in the right direction.
Maggie, I love your attitude. Very helpful!
BTW, my bag/flanges last about one week most of the time. My bags usually fail before the flanges.
Please share who is your ostomy supplier. Many thanks. 😊
What spray adhesive do you use?
HI Maggie, I have to agree with you. I do not like that brand of adhesive wipes either. I remember when I ordered the "ez vent. My insurance covered 100 of them So I order 10 bags that come with 10 in them. Well the box arrived and it had 100 bags of 10. It was so crazy. I of course sent them back. But the company couldn't believe that the order went through 3 check points and it passed them all. I use Byram and they do really well for the most part. I would sent the wipes back to them and ask for the exchange to the ones you want. Let them go crazy for a few minutes. Enjoy your day. Hugs and blessings.
They burn my skin as well yet they seem to be the cheapest so suppliers love to send them. I’m curious what they charge insurance since they are only $9 on Amazon.
We live in Michigan
I am having an issue with odor, causing frequent bag changes. What do you use to prevent this? I am really frustrated. I use a Hollister bag with ring so it's one piece. Thanks for any advice you have for me.
I don't recommend this brand it's smells really bad
My Coloplast bags have 2 filters and pretty ok on odor but I empty frequently and use a deodorant, but if I get the little charcoal filter wet it’s game-over… stinky diaper.
I guess I should try Coloplast. Do you know if Medicare covers them?
Hi Maggie my sister works for McKesson in customer service
I know it’s unrelated, but I’ve been having a really big problem with my Libre 2 glucose sensor and it itches so bad. I wanna rip it off. Do you have any itching issues with your adhesives?
Hi Maggie. I'm a new ostomate (2 months)(
Stage 4 anal cancer survivor) . My insurance company doesn't cover a lot of the cool stuff you show in the accessories video. I have a lot of animals and I would love to have a stoma dome sadly insurance doesn't cover one .any suggestions on how I can get one? I have no income currently and I live alone. I'm doing it all on my own as I have no family left to help me.
I can tell your supply closet is a closet. It has a horizontal closet pole at the top with a shelf above it.
From what company do you order your supplies. I order from Adapt (formerly McKesson) and I've never had an issue. Could you consider changing suppliers? They work well with my insurance and with me as well. The customer service reps are knowledgeable as well. Also, Maggie, I get four boxes of closed-end pouches per shipment. I got a letter of medical necessity from my doctor and have been able to get the extra boxes since and paid for by insurance. I agree with you about the wipes. They send me those too and I'm not a fan. After listening to your video again, I realized you are using Adapt. It is so odd that you have those issues. I know they have a direct line you can call and you are not put on hold. If I can ever find that number I will pass it along to you. Interestingly, the box you unpacked looks nothing like the boxes I received from Adapt. I donate my extra supplies to local home health agencies that use them with their patients who can't afford supplies.
I use Comfort Medical, i think they just started an online platform. This is my first time using it as i need to change my whole order as they sent me old supplies so I will see if they shipped out the stuff i need versus what i use to wear.
We used to send leftover supplies to India, where some people put a tin can over yhe stoma. Can you imagine?
💛
I am supposed to be able to have 2 1oz bottles of M9 each month. This past month I got two boxes. Each box contains 12 bottles. I have enough for a year now. 🙄
How you often replace ostomy bag ?
@@user-gn8pe4fn7v Each person can find out the number of days that works for them. My sweet spot seems to be day 4 or once in a while push it to day 5. If I go any longer I might start to get output around my stoma and cause irritation because my Ring will start to deteriorate.
@@user-gn8pe4fn7v Every person finds out what works for them in the number of days between changes. For myself 4 days maybe 5 sometimes seems to be my sweet spot. If I go any longer I can get output around my stoma causing irritation because my ring starts to deteriorate.
I live in the UK and have issues with my diabetic supplies. The doctor - would supply one box of 50 testing strips for a month, then 2 boxes and finally now 4 boxes which is roughly what I use. They also forget the zomorph, probably the same idiot doctor who doesn’t get it, they did the same last month too.
Since the customer service people seem to have no clue about what they carry, maybe it's time to look the company up online and find the names of the top people. Send them an email with complaints and suggestions on how they can make ordering supplies easier for customers and them. I mean why would any one person need 50 boxes of adhesive remover or just 1 remover?? It could help others.
Time to buy some betadyne.
I bought 3 stoma cloaks for my husband and none of them were sewn the right size
I don't know why they can't get this right.If I had to deal with this,I just don't know what I would do.
Coming from WA state, May 18th (1980) means to me the day that Mt. St. Helens blew her top.
eh... what...
@@Sabouma28 🤣Maggie said her birthday is May 18th, though I doubt she was around in 1980.
Maybe you could donate them to someone with diabetes, if they use omnipod or dexacom or both it's really useful for them. And again you don't have that around a stoma, maybe they would fit better for that use.
Have you thought of changing your Supply company with that many problems I would change the company
Wow Maggie, write them a letter it may carry more weight.
Could it be that you are allergic to aloe. Apparently people with a latex allergy should be careful with aloe.
Who is your supplier?
Just for a laugh, email this company with a portion (skills, jobs) of your CV offering your services as a (paid) consultant in getting this rumored (maybe yeet that adjective?) online catalog up and running in beta format. What you are actually telling them is that their customer service s**** big time. I find veiled sarcasm, as long as you are being very polite and use very formal discourse, a joy for the soul (yes I am that odd). BTW I have a friend who deals with a local subsidiary of the company mentioned in this video that has similar comical and irritating snafus regarding orders.
hey, my birthday is May 17th! I'm a day older (hahaha--- I'm YEARS OLDER--- I'm turning 50) than you!
My birthday is May 19
Mine is January 14th
Mine is July 17
Mine is March 9
Half right what sent loll
It seems to me that if you have an ostomy, you can claim disabillity.
Are you allowed to change companies????
I just don't understand why 50 boxes means 50 boxes but 1 box means 1 wipe. It makes no sense. It's like something from the "Computer Says No" skits on "Little Britain."