I'm Over These Leaks So I'm Ordering Different Ostomy Supplies! | Let's Talk IBD
Вставка
- Опубліковано 26 вер 2024
- Is anyone else dealing with Hollister 2-piece appliances leaking from the ring? I'm totally over it as you can tell in this video, so I'm happy to finally have my ConvaTec order placed! Calling the supply company isn't always easy, but at least it is done!
For 𝙗𝙪𝙨𝙞𝙣𝙚𝙨𝙨 & 𝙘𝙤𝙡𝙡𝙖𝙗𝙤𝙧𝙖𝙩𝙞𝙤𝙣𝙨 requests ONLY, please reach out at maggie@redefined-agency.com!
𝙒𝙤𝙣𝙙𝙚𝙧 𝙬𝙝𝙖𝙩 𝙄 𝙪𝙨𝙚 𝙛𝙤𝙧 𝙢𝙮 𝙫𝙞𝙙𝙚𝙤𝙨?
◈ Camera: amzn.to/3QFyF6P
◈ Vlogging Microphone: amzn.to/3SogUdr
◈ Sit-Down Filming Mic: amzn.to/49g03j4
◈Music Software: share.epidemic...
◈Editing Software: Adobe Premiere Pro
𝙇𝙤𝙤𝙠𝙞𝙣𝙜 𝙛𝙤𝙧 𝙬𝙖𝙮𝙨 𝙩𝙤 𝙨𝙪𝙥𝙥𝙤𝙧𝙩 𝙢𝙮 𝙘𝙝𝙖𝙣𝙣𝙚𝙡?
◈ Become a Channel Member! / @letstalkibd
◈ Intimate Rose Get $5 off Coupon at www.intimatero...
◈ Let's Talk IBD Gear www.letstalkib...
◈ Amazon Favorites www.amazon.com...
Links within this description may be affiliate/sponsored links in which I receive compensation from purchases made. Thank you for supporting my channel!
*This video is not meant to diagnose or treat any illness or condition. This is for entertainment purposes and to get you thinking! Please ALWAYS refer to your physician for medical care.
Having difficulties hearing this video? Please click the "CC" button on the bottom left of the video screen!
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
you should send this video to the company... that'll show them.....
Exactly. Working for a company that sells ostomy bags, but the person on the phone doesn’t know what an effing ostomy is? 😂😂😂😂
If the company has any sense, they would be monitoring this site.
She’s a wonderful addition to the community. She should be listened to.
Hey Maggie. I’ve got a colostomy, it looks like a crater rather than a stoma and has been like that since like 3 wks post surgery, never healed properly. Been fighting leaks ever since. I also go back & forth from Hollister & Convatec, but add in Coloplast brand too. I found Convatec moldable convex flanges are the best for me. Not a fan of their bags lol, they’re hard to clean the ends when emptying, the plastic is flimsy. But that flange makes up for it. No leaks and no odors, and I get 3 days wear time which is wonderful. The one thing I don’t understand though? I don’t get why you need a prescription from your surgeon for the insurance companies but it’s not considered a “prescription”. Therefore, you have to meet your deductible before getting any kind of a discount on supplies.
What a rip off. This REALLY needs to change in the U.S. My supplies cost me over $400 per month out of pocket. It’s insane that you wake up from an emergency surgery with a stoma and no one asks you, hey can you afford this? I’m surprised there’s no advocacy group fighting to change this!
I see your pain and frustration. Hang in there, it will get better. Be glad you didn’t have to use ostomy supplies in the 70’s, the plastic then was very poor and the adhesive wasn’t very adhesive. Things are so much better now and will continue to improve, we just need to speak up. Take care of your skin first and foremost. Love your channel.
Man, American healthcare and insurance systems are just bananas. I can’t believe you have to deal with that sort of bureaucratic crap as a patient. Sending you much love from New Zealand 🫶
I feel your pain. I have monthly supply order, and I had a similar situation where I couldn’t use the product set up by my insurance company, and it probably took a full year before I was able to successfully cancel my monthly order. In the meantime, all of these supplies kept arriving at my house; I had boxes of unopened, not expired medical supplies that probably cost my insurance thousands of dollars. Of course I couldn’t return them, not sure why if they were unopened, undamaged and year from expiration. But nope.
I could not bear to send them to the landfill. I just couldn’t. I know there’s tons of people in the US with poor to no insurance who would have been thrilled to receive them, but after making inquiry after inquiry, I could not find anyone to take them. Don’t worry, I did not throw them away; I sent them to a nonprofit offering humanitarian aid to the Ukrainian people. They were so thrilled to get desperately needed supplies. I gave them everything from my ostomy and SP products to saline flushes, heparin flushes, iv kits, dressing change kits and more. I’m just glad they went to good use, but I wish it had been easier.
Ostomy products can also be sold on eBay. People who have no insurance also look there for low cost supplies. I sold some Convatec supplies when I changed the type of pouch I was using. The lady who bought them was very happy to get them at a lower cost. Also, the local home health nurses would likely be glad to get them as well; I gave a few supplies to them for those with no insurance.
I've seen this exact same complaint coming up about Hollister here in Canada in local support groups over the past several months, exactly that type of leak, so it's not even just in the USA where this is a new common occurrence.
Quality products are so important to not just the skin health, but also the dignity of ostomates. I'm sorry you had to jump through all these hoops. 💜
I am 75 and I have had an ileostomy for 52 years. When I started out I used Marlen supplies. That was 1971. When I retired I had to switched to Hollister because it was less costly and my insurance and Medicare would not cover the Marlen cost. I have been using only Hollister for about 10 years now. I can only use the drainable because I have to much air/gas, sometimes with no stool. I use a medium pouch and just open the bottom to let the excess air out. I use Edgewood Surgical and I'm very happy with them. I've never spent more than 5 minutes on the phone with them.
Hollister puts out great products!
I can't understand why they make it so difficult for people to do things as it's supposed to be the new advanced generation 😕 as it's such a pain. I am sorry you have to deal with this when feeling under the weather. Thank you for sharing all the best with this .Take care get well soon 😊
I agree that Hollister’s product quality has been declining over the past few years. I’ll have to look into other brands. 🤨
Coloplast... The best ever in my humble opinion.
Have followed your channel for 3 years now and always admired your stamina. Our thoughts and prayers are with you.
Thank you for sharing your life with us, Rosemary and Dave from Nova Scotia
Same from me. Melody from Wisconsin
Same from me, Ellen from The Netherlands😘
Keep being bold, other people are going thru it too. They need you to be the warrior now!
Maggie you look like you’re in pain.Sorry for you. I have had an ostomy for 30 years or so. I had used Hollister but after my last operation the nurse used coloplast. However as the years rolled on I began having periodic problems with leaks. I had quite a hoard of ostomy supplies so I examined them and the oldest were well past the expiration date. I threw out everything that had an old expiration date. I still have occasional problems but found that Brava strips work most of the time. Courage!!!
Brava strips are great! I love Coloplast systems.
I literally had 4 leaks today!! It’s been awful!! We couldn’t get the ring to stick at all!! We used powder and barrier spray and everything!! Literally one lasted 2 mins!!! Peeled off right away!! My output did not help the situation at all and not to mention it was 5am. I use the hollister two piece system. I’m considering trying the convetec myself but I am a plus size girl with lots of curves and such so it makes hard to find a good fit. It was good for a while (recommended by my stoma nurse). This vlog couldn’t be at a better time!!! Thank you!!
Update: make that 5 in 24 hours
try a one piece and use as little powder as you can. barrier spray does not affect sticking but I find powder is lethal at unbsticking the bags
@@claresinclair8030 we've tried those and they do not work for my body. We also use powder and brush as much as we can off.. just didn't want to stick! I was also producing volcanic type eruptions which didn't help at all
Iv tried using the ring but never felt secure enough, so I just use the paste 😹🙀😻💙💙💙
I’m at 180 now, and wear coloplast sensura mio, I love it, sometimes it lasts a week ;) I use paste , rings don’t work to good on me,
I just want to thank you for sharing your story with us! It's because of your channel I've been able to learn how to care for a elderly man that i care for that just got his colon removed. People that are making comments about how gross it is that you share, have no freaken clue what it means to live with this or care for someone that has a stoma. I pray they never do! He's back in the hospital for fluid in his abdomen and infection. He was home about 30hrs from being in ICU for a month. His blood pressure was dangerously low and i could tell his abdomen was distended. He has a ct tomorrow to check for more fluid. He almost died when this all first started. I'm scared for him. My family and i have cared for him for 7yrs and lives with us. He's family to us and I pray he pulls through! Thank You again sweetheart!!
He passed away feb.17th at 7:32pm😭
Dear Maggie~ First of all KUDOS for sharing your heath journey!!! I am a 68 year old woman who had an illial conduit last year due to bladder cancer. I have been blessed with an awesome surgeon and online support group but you have addressed many every day challenges that aren’t spoken about. Thank you for your courage and transparency!
KnitWitMY, I'm in the same situation you are lost my bladder do to bladder cancer in 2022, didn't think I would mAke it, surgery and chemo took a lot out of me.but here I am, Thanks to the surgeons and the Good Lord above🙏I use Byram to get my ilostomy supplies,one piece,never had but one leak in 2 years, it's a good company to get your supplies from.Ive been following Maggie through the hole time she has taught me quite a bit.Tha k you Maggie.
Take care of yourself KnitWitMY.Forgot to mention I'm
66 YO.
I’m in the U.K. and the couple of companies I’ve dealt with have been great, really knowledgable. Here most people are very loyal to their delivery company and always recommend them, which you never do because you’re loyal to yours!
I’ve had a filter problem with some of my one piece bags. Half woman, half balloon…
I'm in the UK and use Salts Confidence Be colostomy bags and the filter sometimes blocks on these too. I find the adhesion good though I get the sausage look at times too.
showing your frustration on line is a good thing…call the companies ask for a supervisor who may help you more and may refer your video to their product development dept…
Hi Maggie! I have had my ostomy for a little over a year now and also order my supplies from AdaptHealth. I understand your frustration! I also have experienced ordering problems and I am quite familiar with that background music! Ugh…Hang in there. Thank you for your helpful videos. You are an inspiration!
Thank you for speaking up and sharing your frustrations Maggie! I use the one piece drainable Cera Plus Convex bags and I've been experiencing the same kind of leaks as well as noticing odour and the side of my 'spout' splitting. Like you, these bag failures are happening with freshly changed bags. I feel your disappointment and annoyance at the process of changing supplies. Good on you for getting it sorted and protecting your skin (and sanity)!
I hope your new bags give you back the confidence and security we all appreciate! ❤
My mother had the same issue with Hollister….Im so glad she’s using Convect now, great company. Love it
Newer subscriber here, first a big THANK YOU for sharing your experiences and all the information about IBD. It has been very very helpful!
My wife has an ostomy and we are on a learning curve to be sure. She has a loop ostomy it doesn't protrude very much from her abdomen.
It makes it hard to keep the skin right around it from getting irritated. We have been switching between Hollister and Conva Tec as well.
She likes the Hollister bag because it has a spout but, it is hard to attach it to the flange. The flange is too flexible and not positive feeling.
I like the Conva Tec flange way better but the bags are a little smaller and she doesn't like the folding end seal very much as it's harder to
accurately direct the contents when emptying. Anyway, YES catalogs make it easier!!!
We hope you feel better soon young lady!!
Hey Maggie, thanks for sharing. I have used Hollister since 2016 when I received my ileostomy. I have been pleased until about a year ago. The issue you have been having is a quality issue that is happening across the board. I have seen the flanges leaking in areas they should not. My has been from the side as well. These thing are so expesive and to have them fail is terrible. It has been an issue that has also happened when I am out away from home. So embarrassing to have the bags fail. Hope is works out for you and I may follow your lead.
Hi Maggie I am 70 years old and have now had to resort to putting duo derm extra thin sticky wound dressing under my flange. My equipment now almost never leaks. Do give it a try. I use convatec natura 2 piece. I wouldn't use the flat glue ones. Who the heck thought that was a good idea. I know you get a lot of suggestions, but this really works and keeps your skin very good.
Jane Perryl
Hi there! I take care of my mom who had a colostomy recently. She’s having problems with her skin. Where could I find this duo derm you talk about? Thanks in advance!
I just love your knowledge and candidness ❤ you've helped so many people to overcome their inhibitions... You ROCK, lady 🎉
in Norway we are very lucky that we get it all for free .the Norwegian stat pay it all .. all the supplies that we need and we can choise what we want.
That is so interesting! Definitely different than US!
Lucky Canadian here to. Gov pays 1000$/yr for gear and my Sunlife pays the rest.
We spend 422 billion a year in non Americans living in America 😢 100 billion on keeping people with dementia on ventilators. All we do is waste and hurt actually Americans that give to society. It’s awful . Our government is evil.
Oh Maggie, we feel your pains! My husband is an ostimate and I help him with bag changes more often than not. He usually wears ConvaTec drainable 1pc. and we go through Adapt Health as well. 😩 We have had sooooo many issues with the consistency of ConvaTec rings and the bags adhesion. Also, had issues with the seal, where the bag is sealed around the EDGE coming apart on him. It is so extremely frustrating!!
We didn’t have good luck with Hollister either. 😩
Anyway. Good luck and hope you feel better soon!!! 💖
Hi am a double ostomate, colostomy and urostomy. I have tried different bags and being small and short of tummy space I need small bags. I very rarely get leaks now and they are my fault because are let my bags get over full. Using Pelican bags and a Coloplast night bag. The bags have a soft bendy base plate that bend around my lumps and bumps and stay stuck down. Brilliant.
Damn, I can’t even imagine what you’re dealing with. But I hope you feel better soon, and that your skin heals up soon. And I hope you find an ostomy bag that doesn’t leak.
I don’t blame you for switching. Leakage of output and skin breakdown are absolutely unacceptable.
That wait time was ridiculous, btw. My former employer had the same hold music, lol.😂😂😂
I totally understand your frustration. I love and use all of Hollister products EXCEPT for the bags. I wear the one piece Sensura Mio. I started my ostomy journey with Hollister one piece and they would actually leak from the bottom AND often the liquid output would seep through the bag itself. After telling my Nurse, she ordered samples from Coloplast and I haven’t looked back.
I get where you are coming from I go through the same thing I've had mine over ten years
I switched from Hollister to Coloplast Sensura Mio Click 2 piece.
Love the quality of life changes...the flange is great because its not fabric.
Same! I have since switched to a one piece, but coloplast's quality is so much better!
Coloplast is the best ever! I use the sensura mio convex flip one piece. All my troubles vanished after that. Coloplast is the only company I'd recommend.
I have a urostomy and LOVE my Coloplast Sensura Mio appliance! I especially like that I'm able to get a shorter bag since I'm short. Their skin care products are the BEST! Also: those people have the WORST hold music and so many companies use it - UGH!!
That's awesome! I wish I wasn't so allergic to them!
I’m allergic to Coloplast as well. 🤷🏻♀️
@@LetsTalkIBDThere are differences between the products they make even if they are supposedly the same. I’m Dutch and had to get supplies in France once. The French ones are made from a different material and I’m allergic to them as well, while the Dutch ones are okay. I’m not sure how it works in the US, if they use the same material everywhere, but if not it may be something to look into.
The flanges are way bigger than Hollister. That is a downside unfortunately, but you’re right. They don’t leak as much. I just wish they had a softer moldable convex so I could switch back to Convatec. My Hollister bags don’t want to stay stuck on lately.
I use Better Health Supplies for my Ostomy supplies and I’ve never waited more than 5 minutes to talk to a person! They also let you order by text or by going on their website. Orders always arrive within 4 days.
Also, everyone who works there is either an Ostomate or has a spouse who is, so they know their stuff! They get it when we are having issues with our Ostomy supplies and have great support.
Coloplast sensura mio two piece with barrier tapes are the best. Hollister is no where close in quality
My Hollister products have been starting to leak more than normally, plus not sticking as well anymore.
Aw man!! I wish they worked better!
I have a massive parastomal hernia and have trouble all the time with flange failure right next to my belly button. I understand your frustration.
I’ve been waiting a month for Coloplast pouches from Adapt. And, yes, the process is maddening.
Are you serious?! I'm at least thankful they ship fairly quick here!
My mom uses Hollister. This happened for the first time yesterday.
Being sick and having ostomy malfunctions is horrible. I use convetec and love the moldable flange, but recently I had that happen with my convetec products. I hope you have better luck.
Good grief! It’s so complicated. Wishing you luck lovely lady 😊
what has helped me is putting cohesive protective seal around the rim of the barrier
I followed you when I first had a radical cystectomy/ ileal conduit three years ago. I wear urostomy equipment due to cancer/bladder removal. You have been so encouraging and helped me through that phase and I appreciated it so much.
I feel for you,! I have had similar frustrations. I am now using Medline and Coloplast products. Medline has been very receptive and helpful after some issues in the beginning. I gained some weight after surgery. I switched from Hollister to Coloplast 1 piece convex flange with bag and a ring. It was much better. I also like the coloplast nightbags.. Insurance does not cover Coloplast adhesive remover so I purchase it privately. I do not use prep wipes due to skin sensitivity.
Your situation is more difficult but I can relate to some issues.. You should be so,proud of yourself for being so candid, brave and inspiring. I hope you quickly find relief with more effective and comfortable equipment.
Lynne
Naples, Fl
I also have a urostomy and use Coloblast but most of the time I have to use the extra bravo strips due to leaks sometimes. I love their bags and the drain spout.
In my 6 years of having a stoma I have used Hollister and Convatec. I wouldn't recommend either of them. The Coloplast Sensura Mio Convex Flip one piece is a dream. It comes in the drainable bag and also the single use. I use the single use. The skin around my stoma has never looked better. I wouldn't use anything else now. Not only that, the pouch looks good on its own.
COLOPLAST IS GARBAĢ DON'T STICK ABD DEPENDING IF YOUR SEXUALLY ACTIVE WHO WANTS A 'CLEAR' POUCH?
P.S. Going through all these samples, I'm finding Coloplast bag is best so far but the flange stoma ring starts to looks pale and puffy the second day. The nurses have me using stoma adhesive everytime and that works better than the rings you break pieces off from. Today was a very confortable day, though, PTL, and this newbie is grateful. Hope you get it all straightened out!!@ ❤
Just make sure the skin around your stoma is clean and very dry. Don't use baby wipes to clean around the stoma, or moisturizer of any kind. Use a skin barrier wipe, let it dry and the flange ring will stick nicely. Coloplast is the very best in my opinion. Quality! Made in Denmark.
I use use the drainable bag, but have always used the two strips to keep from having leaks.
I use Hollister, and haven't had any leaks since I changed the wafer from flat to convex, and then later I extended that wear time even longer by changing the way I do my barrier ring. You live in PA too right? I switched to a really good company for supplies. I don't have to wait on the phone, they have online catalog, an app, the app you can order, re-order, pay your bill, online chat etc. The people also are very helpful and some really know their stuff with what you could use, etc. My other company barely had any brands, this one is great and has many. The supervisor goes out of his way to find things for me and has over 20 years dealing with ostomy supplies. So he knows his stuff too both with coverages and brands. Let me know if you want their info.
I also alternate from hollister to convatec.i live in Canada and use Canmeddirect I have no insurance but I do receive some money from the government .I use the accordion flange moldable and I really like it I use a closed bag with Attivia liners .I have the same problem with matching bag to flange .I just wanted to tell you that I found this torbot liquid barrier and and torbot contact cement both for people with leaks and I sweat so much that my flange wouldn’t stay on and I use coloplast strips and hollister remover wipes which I find the best .The torbot liquid barrier is a very sticky product and you really need a good remover to get your flange off I have an ostomy but even when I had a bad flu that convatec accordion flange did not leak I was so sick I couldn’t sit up to change it for five days I empty it but left the flange on praying for it not to leak it took a beating and did not leak I found the torbot products on Amazon and thought for 35 bucks I would try anything .I use the barrier all the time and the contact cement in the hot weather .They also have the barrier in wipes .I know this is a lot I have followed you for 5 years now and maybe those products might help .Anyway love your content and hopefully things will get better for you .I will continue to follow you to see how your making out with convatec.
I don’t think they know the products they sell need to match up. I got a whole box delivered and very few matched up, and I was new patient. I was totally confessed!
That's terrible! They should be aware of that!
My husband has has leakage issues with his urostomy as well. His issue is that he is heavy with a round belly. So, getting his wafer to lay flat on a round belly causes issues, as is snapping the pouch. He prefers a two piece system.
I know you like the two piece configuration, and that's what I had in the hospital. When I was in rehab, I had my first leak, probably from the movement I was having in the rehabilitation. Ever since then, I prefer one piece bags, I'm still with hollister, but one piece are just so flexible, if you're active. My nurse and I agreed that the rigid ring of the two piece is the reason for the leak(s). That rigid ring pulls the barrier away if you're active.
Thank you for sharing all the aspects of living with an ostomy, etc. I’ve switched companies recently, & put off ordering for a week because I was so confused about what I needed & #’s etc. I just appreciate knowing I’m not the only one!
I have been getting my supplies from Duke Medical in Fenton ,Mo. I switched to Convatec many years ago for many of the same reasons. Have had an ileostomy since 1982.. They have a very complete catalogue and good customer service.
Hi Maggie, for any of your Canadian followers. I get all of my supplies (from whatever company I use) from Can Med Direct online-they have everything-;easy to order, will answer phone questions and they deliver within a few days (and prices are good). I use a two piece system which works well though I have trouble in public (from being nervous in public washroom. Thank you for all the information you share on your journey. Your positive spirit is remarkable!
I’ll never moan about my IBS again , so sorry you are dealing with this , hope things improve for you very soon 💐
I love your determination, Maggie! I hate having to call customer service for medical reasons because it is always a long wait, and most of the time you seem to know more than they do...so sad. I loved your hair during that phone call.😍 Hope you get what you really need.
Oh wow. Bless you for having to go through all that. I have to compliment your fireplace in the background, btw. Very elegant!
The frustration level I feel for you. Been there done that with my son multiple times. Between allergies to adhesives and not being able to get matching flange and Bags . I completely feel the frustration through the video. You’ve got this.!
I get it from a medical supplier called Fittleworth in the UK. If you are in the USA any medical supplier I should think. It is effectively a wound dressing and comes in various sizes. Wishing you the best.
Jane
I have so many issues with my crohns and illeostomy. Thank you so much Maggie for making me feel less alone
I have so many issues with my crohns and illeostomy. Thank you so much Maggie for making me feel less alone
I'm enthralled with the saga and involved as well. I share your pain regarding dealing with supply orders, making any changes in the order, the frequency of my order, dealing with automated calling, and getting incorrect shipments. Not as if we don't have enough 'stress' that we have to fight for our durable medical equipment. That we don't get to buy from the manufacturer makes understanding all the possibilities a real challenge. I've ordered some adhesive remover in a spray from Amazon and I've looked at bag systems there. I wonder if anyone has any input on those?
I loved Hollister, then they changed their adhesive recipe and my skin reacted big time. So frustrating when you have a bag you like but there's issues
I have used Convatec 1 piece drainable 10 in. Bags for my ileostomy for over 30 years. No problems at all. No flange to worry over and no odor. I use Skin Prep wipes for a skin barrier, so no adhesive is needed. Not a Hollister fan at all.
I use the Hollister bag and flange. I have noticed recently the cloth part of the flange seems to let go a lot easier/sooner than they used to. No matter how i treat my skin.
I totally understand your frustration with this problem.
Thank you for putting yourself out there - sharing the good, the bad and the ugly situations so honestly. Because of one of your previous UA-cam Shorts, I was able to order samples from Convatec Canada. I have been trying out the moldable convex flange and the drainable urostomy pouch. I do like the product and enjoy the freedom of not having to wear a belt to keep everything in place. The only issue I have faced is with the adaptive connector for the overnight collection bag I use. The tubing for the connector is quite soft, and because of this will get twisted during the night if I move around. Several times I found my urostomy pouch to be so full it almost burst. I don't get a truly relaxing sleep because of this. I will be talking with Convatec to see if there's another solution for a non-flexible tubing for the adaptor. Fingers crossed!
i have a colostomy and i have used Salts produkt in almost 4 years now and have zero problems .i find it to be the best of all the supplies in the marked . ( norway )
I love the Salts design! I wish their full line was available in the US!
I felt this on sooo many levels
I use a one piece bag. And I love it.
I think the girl is brave and adorable. Learning new things provides great insight thank you
You areVERY SMART & knowledgeable you need to write to the company & discuss
Giving them EVALUATION INPUT ,
Or you need to research founding your own COMPANY
YOU UNDERSTAND 1st hand HOW THESE FAILED SYSTEMS REALLY WORK !!!!
Maggie thank you for sharing your frustration. I too have had issues over the last 13 yrs with my supplies. If I ever get overwhelmed, I book an an appointment with the ostomy/wound care RN. I know you are a nurse and I was in the medical field as well and I used to think Nah I dont need to see a nurse/expert. I now run to them if theres any issues. They set me up with new ideas, solutions, and order my supplies for me. I’m just trying to help, as I know it can get very overwhelming.
They are wonderful!! I do have a WOCN I see every now and then and a few WOCN friends I'll consult once in a while!
If you want to do a smaller bag, I can tell you the reference number of the one I'm using. I was using the Hollister bag like you and then it just wasn't working with odor. Which was the smallest bag Hollister had. I change my bag like a third to a half full. So the Convatec bag I use works for my colostomy. It does have the filter as well... Maybe you may want to change the order to this smaller bag instead of the 8 inch bag.
If it's a nondrainable yes please! I only have seen the 8inch ones or the circular ones which are a little too small!
It's a nondrainable circular, which may be what your saying is too small. It's a 6"bag.
I was thinking it may be a little too small for what you need. It's the 6 inch circular bag. I do the 12 inch drainable, when I just want to do something different on those days that are annoying or the one piece non drainable 8 inch.
Darn I was hoping I could be of help. I've sampled the 8 inch non drainable which are good as well. I decided to do the 6 inch circular non drainable. I could see where they might be to small. I'm a colostomy and for more liquid output I could see where it could be maybe to small...
Hi Maggie. Gosh the things you have to deal with. Hope your order comes soon. Xx
Never liked the feel of the Hollister bag. I don’t have leaking issues on my colostomy side because my output is not very fluid. I do sometimes get leaks on my urostomy side but it’s usually when I’m trying to stretch wear time. I usually max out at 4 days.
Also regarding this product I found from Instagram of the one piece which I never used in my life because I thought it was going to be more expensive but it turns out I was wrong😊😊 I actually had to buy adhesive remover spray first time ever because the wafer stick so well😊😊😊
I understand your frustration and pain with dealing with ostomy products. Dr tried changing me to a flange that helps protect my skin and the entire thing leaked urine everywhere. I may be trying a Convatec sample. I hope it works and you get relief
I used Hollister 3278 Karaya bags for 40 years, and then they turned to junk. They have since been discontinued. No surprise.Their suggested replacement is too small. So, I ,too, am done with them.
My supplier was in New Jersey Glad no more
We use to get covitec supplies for my Nanny and there wasn’t a vent or filter on her bags. We would poke a tiny hole in the very top of her bag with a safety pin. It worked for us. She was on the watery side as well. We never had an issue with leaking
Having spent my day dealing with Medicaid, I feel your pain. Thankfully, I finally found the online portal so I could update my income without calling, and should be taken off after years of no one doing their jobs. And, at least I have recent proof that I don't qualify anymore.
You should TRULY !!!
Write a book about your experiences & A SELF HELP FOR OTHERS SWEET GIRL
Byrum medical is wonderful for my osteomy supply needs. I Use hollister 14403 base, 18133 bag and 7805 rings. In 3 years no leaks
Yes except for a few small glitches that were handled in a timely matter I have been very happy with Byram.. The one bummer I have had that is not Byram's fault is I cannot get the 3M Cavalon wipes anymore.. Love that product so much for keeping my skin protected and healthy. But 3M was not being a reliable company and Byram was constantly having to put the product on back-order. I am also a Hollister user and at the moment have not run across the ring problem yet..Praying I am not going to have to look at a new company. I have been happy with Hollister and do not want the stress of trying to find new products that work as well as Hollister has for me. I tried Coloplast which was a nightmare for me. I am glad others are happy with them but it did not work well for me at all. I still have a few samples of the two piece system, one piece system and brava barrier rings that I dont know what to do with. Can't find anyone that wants them. Oh also have some barrier rings from TRIO that never worked for me either..I hate to throw them away, and it is such a small amount I dont know if it would be worth the money or their time to send it to Kindred Box or Friends of Ostomates Worldwide either
A tip that is working for me, I’ve been using a stealthbelt to hold my bag tighter to my stomach and which alleviates some of the pressure on the flange and bag due to gravity. After I started using the belt it’s relieved a good deal of the anxiety that I have about the bag hanging off my stomach. I liked it so much that I ordered a second one so that I always have a clean one available after a bag change.
I do not BLAME YOU
MY GOODNESS IT IS SUPER CRITICAL , these products are
Priority !!!!! For SKIN, ODER , health & PERSONAL HTGEINE & piece of mind these products DO WORK TO MAXIMUM QUALITY!!!!!
100% AGREE Dear 😊👍
Share your pain Maggie, with all the confusion associated with products. No filter, then you have to choose a transparent pouch. Or, limited sizes as I recently found with Convatec's moldable... The one positive is the dependability I've experienced with my supplier, Byram Health Care. Have never been told any item is unavailable, and ordering online is a breeze.
Omg I would love love love an opaque bag without a filter! It is so annoying that only transparent bags are without filters. I use transparent bags and ez vents.
My late husband had a colostomy then a take down and a permanent ileostomy ( colorectal cancer). He never had luck with Hollister. Always leaked and he’d end up with his skin irritated . He loved Convatec.
You should send the leaky bag back to the Co.
The hospital I work at only carries Hollister, and I find they often leak out the side, just as yours does.
I’ve had to deal with customer service recently and noticed on three different companies. Three complete and separate entities, all of their call centers had problems and said we will call you back in four hours. Not four minutes or 40 minutes four hours one said will call you tomorrow and they called at 7 AM, the person on the other end of the line was useless.
I’m writing this post because I want to agree with you and tell you that I understand your frustration.
Hi Maggie. It’ll be a year end of March I use Coloplast two pice You can feel an hear the click You got a bad patch of bags that sucks. Half the time you talk to someone that’s at home. I use barrier ring then barrier I wet the barrier part that bag goes on a the ring on the bag I even wear the belt with two clips on both sides. I have a high output bag. Good luck if you want to try my kind let me know Thanks Michael
Oh yeah... fyi... i only have liquid output and never have leakage out the velcro. If there is leakage from there then it's not being secured and folded up properly. The "vents" have never worked and i only have issue with them leaking either but they do come with sticker plugs). Lastly.... i shower with my bag completely exposed to the water without covering it... i even soap and scrub right up next to and on top of the bag... I've had less than a dozen unexpected bag changes in 6+ years. (I always change it every other morning but could stretch a 3rd day if I wanted)
Hollister bag plus Convatec Eakin ring was the magic for me. And again I know you hate it but the belt was a must lol.
Lol you know me too well! Dang belts! 🤣
@@LetsTalkIBD maybe just at night?! 🤣
I had the leakage problem when I first got my ostomy. It was a constant problem I would go through like 3-4 bags and rings a day and then people wouldn’t let me have new products because I used the months worth in 2 days. So frustrating 🤬🤬🤬
Urostomy here. I use Convatec. But if I go inpatient ever.. they give me Holister. Total awful products. I carry Convatec with me. Convatec for 30 yrs. A few times products are not quite right. And won't last 24 hrs but on avg I get 7-9 days between changes..so happy except for those days.
Would never use Holister even though they offered me many free products. I refused.
I feel you... i used Hollister for about 8-10 yrs and the last 2½ yrs i often had leaks. I like Hollister because they felt better and the filter doesn't touch my stoma, but they often leaked around the ring and the plastic between the ring and the base would rip or cut if i cleaned it really good and the bags have a very thin (seam/seal/hem or whatever is called) all around the bag that had also popped when i slept on my stomach and was gassy.
I then switched to Convatec bcuz my insurance no longer works with Hollister and I have not gotten any leaks, HOWEVER... the filter touches my stoma and irritates it occasionally I've even ordered filterless bags but still have gotten the ones with a filter.
But I'd rather deal with that than to have leaks.
@user-bm6wo5lx9x it is sometimes awkward but when I do sleep on my stomach I do a little proping, ove learned my lesson and not sleep flat on my stomach anymore, but i put a pillow just below my ostomy for my stomach and hip and one above so I can hug a pillow, there's a little space between the 2 pillow so I'm not completely flat. Like
__.__ so it would be similar to that look.
So far I have been lucky using Comfort supply Stuff comes from twin cities in Minnesota. They don’t listen when the pack everything It’s to heavy for me in 1 box. I call an complain I’ll call Medicare and report them I aggravate them till then send me even some extra
I’ve noticed that my hollister bags do this if I unclip/reclip my bag a lot while also having loose output. I guess that loosens the seal enough that things can leaks out?? If I don’t try and clip the same bag on/off it doesn’t happen to me. But obviously if you have a closed bag that’s a non-negotiable for you!