This channel is dedicated to helping people with IBD or an ostomy through product reviews, tips and commentary. My content is created from a vegan's perspective, but it's relevant to anyone.
I've been living as a vegan since 2000, was diagnosed with Crohn's disease in 2008, and received a permanent ileostomy in 2013. I hope that my journey and experiences can help others.
Great review! Interesting product. I prefer "burping" rather than using a pouch with a filter. This system would probably not be easy to "burb" because of the difficulty of applying and detaching the pouch from the wafer.
From my experience, Convatec included instructions for their filters, unless that's changed recently. Either way, using a filter sticker tends to be fairly universal and should work with Convatec bags. Hopefully, they do still include stickers! If not, you can use anything that isn't porous, including good quality tape.
This can be a good strategy if the cost of supplies isn't too much. It can also be better for skin health, provided that the wafer you are using isn't too aggressive. Thanks for commenting!
I have been a user of Hollister convex one piece pouches for almost 30 years and as such am reluctant to try another brand but recently they have discontinued a lot of their products and it seems Hollister pouches have really deteriorated in quality and as such - even though the flange will be still firmly stuck down - after 24 to 36 hours the actual pouch itself is stinking. I also find that when cleaning the flap the seams are so weak they very often tear at the sides. I am thinking I am going to have to bite the bullet and try another brand but I am unsure which company to try😕
I had the same experience with Hollister bags over the last few years, but ultimately ended up with a skin sensitivity to their wafer, so I'm no longer using them. After 30 years, you never know how much better a different appliance can be, so I'd suggest getting a hold of any and every sample you can find! Good luck!
Thanks for this wonderful information, Eric! Just got my ostomy on 8/6/24 and am at home and learning. This was very useful information, even years after it was recorded. God bless!!! ❤
Glad it was helpful! You'll get the hang of things pretty quickly, but will continue to learn and adjust as your life and circumstances change. Wishing you all the best!
Thank you for your comment and suggestion. Unfortunately, because I don't have a urostomy, it's difficult to offer any advice that's specific for urostomy care. Generally speaking, most tips for an ileostomate can apply to a urostomate, but there are certain products and care which only apply to a urostomate.
Yes. It's the same with any ostomy bag. There's no danger in getting the bag wet. Just be aware that prolonged soaking may cause the edge of the wafer to absorb water and peel off a little.
My husband had surgery a month ago and is now having to use a colonostomy bag. We have been using the one piece and have had to change daily. He has developed skin irritation and we are putting the powder and using the adhesive to put on the bag. I noticed you don't say anything about using that. Every day his bag is leaking. Everyone has tried to keep the bag to stay on but to no avail. We are at our wits end on what to do to be able to make the bags last 😢. He is on hospice and doesn't need the added unnecessary burden
I'm sorry to hear about your husband's struggles. I completely understand your frustration and urgency to find answers. If at all possible, having a stoma nurse look at his skin and appliance can be helpful, and they should be able to find a solution. That said, there are so many reasons why an ostomy bag might not stick. I have an article outlining many of the factors that I can think of, but I do offer possible solutions to each. www.veganostomy.ca/ostomy-appliance-wont-stick/ I don't usually recommend adhesive or extra supplies unless absolutely necessary. If someone has the right appliance and are not having skill issues, there's often no need to use extra product.
Thank you for these tips. I have a question that I haven’t seen mentioned on any videos from any channels that I’ve looked at and it is about disposal. Especially for closed bags. Where do you put them? So that they don’t smell the entire house up until you empty the garbage. Does everybody have a diaper pail?Any tips or hints because a normal plastic bag does not cover the smell. Thank you
There are ostomy specific disposal bags, that are basically thick ziploc bags. I use the disposal bags that come with some appliances, but have also used doggie poop bags. Really, anything that can be sealed will be fine until the garbage can be taken out. I've never used a diaper pail system for my ostomy bags, as they are too expensive.
Hi, I am five weeks in with the new ostomy and it seems like my stoma is extremely small at this point. It’s retracted so I’m having issues with pancaking so when I put ostomy deodorizer in the bag it just shoots to the bottom. Just thoughts or if anybody can give me any tips, I see my surgeon in a couple of weeks. Love your channel, I eat more tofu than I do meat! I have tried different essential oils, but again they just go to the bottom. I know that my stoma might change shape. I hope it doesn’t get any smaller. Most people would never say that but… Right now it’s challenging. Love your channel
If you're using a lubricating deodorant, the trick is to smear it around so it coats the inside of the bag. Yes, some will fall to the bottom, but some will stick. Pancaking can be challenging even with lubricating products, so do your best and try not to stress over it. 😊
@@VeganOstomy Thank you so very much for getting back to me so soon! I love your channel as you’re honest and you explain things in a calm and understanding manner. My stoma is very little, if protrudes may be 1 cm out so that’s probably why I have so many issues with pancaking? Have a wonderful day and thank you again 😀
I don't think having a small stoma would make pancaking worse. 90% of the time, it's down to the consistency of the output: thick, gummy, sludgy output will pancake. The other 10% is often caused by the bag. Either not enough air in the bag to allow output to drop down, or the filter is creating a vacuum effect that holds onto output in the form of pancaking. See if any of the suggestions in this article help: www.veganostomy.ca/pancaking-ostomy-tips/ Good luck!
Thank you for posting this. Ive just started using these bags, and im fine putting it on , but couldnt figure out how to separate it again shouls i need to
Hello y'all 🤗 I was born waaaay to premature (26 weeks gestation and weighed a smidge less than,1lb) and developed necrotizing enterocolitis which is fatal for almost every baby especially 42 years ago but thankfully obviously I pulled through. However it left me with an intestinal system that is prone to shutting down entirely seemingly for no big reason and doesn't respond to anything drs try and so far it magically kicked back on just in the nick of time before I would be in an unsurvivable state and my Dr all warn me that the next time it may not reverse itself thereby requiring a stoma . Im legit terrified of the whole thing im not sure why but I freak out every time I am faced with any sort of tummy issues now so I'm watching videos such as this one to help educate myself so that maybe knowledge of the actual reality of it won't scare me so badly so thank you for helping us all out by giving honest realistic feedback and advice! Its doesn't seem to be an easy topic to talk to ppl about so without vlogs like yours i don't even know where id go to learn how to manage everything that comes with it. I hope you all are having a wonderful day and I send you warmest blessings wherever you may be in this very moment ❤😊
I know exactly how you must be feeling. The thought of having a stoma terrified me, before I started to learn more about it! If a stoma is in your future, know that the ostomy community is large, and so many of us love sharing our experiences. Take care!
i was in the best shape of my life, life was going the best it's ever been and then was getting new insurance so I had to get entirely new referalls to a new GI whilst going through a bad flare up, long story short i lost 30lbs and went through an emergency life saving collectomy, its been around 4 months and I get surgery on August 8th for a j-pouch, i'm extremely nervous but I will hopefully be able to go back to living normally somewhat like before. The colostomy bag seriously affected my mental health and nearly all my daily tasks I can barely look at myself in the mirror, I got UC when I was 10 years old and im 22 now I really hope i'm making the right decision.
Best of luck! There's no silver bullet solution to any of this, especially emergency surgery. But most people are in a better place now than they were before, so stay positive. 👌
Hi Eric. I'm a very recent stoma person and, to add complexity, a paraplegic as well. I've found your videos very helpful resource to manage my stoma and associated devices. I'm from Canberra, ACT, Australia. Your RU-vid videos have de-mystified some of the concerns I had regarding pancaking, blockages and leaks. I've also found your product reviews very helpful. Your videos are succinct and detailed. Thank you.
I listened to one of your videos two nights ago in which you recommended prune juce. Now you advise against it. I was glad when you recommended V8 Juice, because I bought a bottle of that also because I want to make sure I am taking in vegetables. But now you say that it's not good for people who have heart problems.
You bring up a point, so let me explain for clarity. Re: prune juice. I, and others, find it to work well as a laxative. In that sense, it can work well to prevent blockages or to treat minor blockages of the stoma. At the same time, this laxative effect may work against staying hydrated. So, I would advise against using prune juice (or other laxatives), if you're having a hard time with hydration. For vegetable juice. The regular kind should be fine for everyone. But low-sodium versions often use potassium chloride as the salt substitute, and people with heart problems should avoid that one. I hope that helps :)
Yes, and it's unfortunate. I want to make a points as to why hospitals (and maybe even some stoma nurses) do that. First is liability. Some people really do need to be extra cautious about what they eat following surgery, and it's often safer for hospitals to say that all foods should be soft and contain no fiber. But many patients aren't told that those rules really only apply for the first month or so following surgery. The second reason is likely that most advice or literature given to patients is outdated. Provided that there are no serious medical risks that prevent someone from eating this way, something like a bowel motility distinction or stricture, most ostomates (ileostomates included) should be able to sensibly increase their food options and volume over time with no major concerns. I do long distance cycling, which often has be consuming 6000 - 10000 calories in a day. That's a lot of food, and liquid that needs to pass through my gut. But I can manage this without issues, mostly because my early approach to food had been slow and expanded over time to accommodate regular food.
Use a Sure Seal over your ostomy wafer. I’ve been using them since 2017 and I have never had a wafer come off of my torso. I live in Florida and use my pool and hot tub and it never comes off.
Sure Seal is a great way to prevent the wafer from peeling along the edges, for sure! But some people have poor adhesion under the wafer, where the Sure Seal won't be able to help, unfortunately.
@@VeganOstomy I’ve had good luck with Eakin Cohesive Barrier Seals that act as a barrier between the wafer and the skin around your stoma. I found it to work better than the stoma paste I was using soon after my ostomy surgery in 2017. And yes, everyone’s situation is different.
Sweat can be a problem for some, and I wish I knew what differs from one person to another to make it worse for some people. For example, some people have oily sweat, and others have very salty sweat. I would imagine that either would negatively impact the wafer. Finding out the source of that (i.e diet, hormones, medication, etc.) could go a long way to finding a solution. I've been lucky, and can ride my bike for 10 hours straight in high temperature, but my wafer seems to stick *better* in that context! My sweat is not salty, nor is my sweat oily, so I think that plays a big part.
Hi there. I have a Peristomal hernia which appeared soon after my surgery on 8/21. The size of a small grapefruit half, I can’t keep pants up without suspenders and a belt is not an option. I wear a custom hernia belt which is a huge necessity. Stretch waist pants and tops that conceal the suspenders are my wardrobe. I am 76 years and grateful cancer appeared later in my life. Any tips are appreciated. Thanks for your help.
Hey, Bill. I don't have a hernia myself, so my experience is limited. I'd invite you to ask on my support forum, as I believe we have members who may be able yo share what works for them. It's at www.veganostomy.ca/community
Thank you that was very helpful. I’m fairly new to this world and have only been using the two piece but curious about the one piece. I think I will ask convatec for a sample. I had my surgery 5 months ago. Barb
Hello, it would be best to inquire with the company who makes the shower guard to see what options they offer for international shipping. Their website is: www.empoweryourchange.net/
It's a small stoma guard, which helps to protect your stoma from impacts. It's not necessary to have or use for most people, but it's one of many options for those who need impact protection.
64mm is large, but you should be able to fit it within several types of wafers. I would recommend seeing what is available to you in both 1pc and 2pc systems. Most 1pc appliances I've seen will accommodate 65mm.
Yes, and no. When fitted properly, water from the shower won't went the bag. But steam and any splashing coming up from under the cover will get the appliance a little damp/wet.
Thanks for your comment about finger strength as I have CIPN in my hands and feet. Oh, Canada! Go Oilers! Thank goodness we don't have Dallas vs Florida in the finals... that's unnatural. Great review! Product was appealing, but after your review, it is not for me unless some of the problems get worked out. Thanks again!
Videoclipul este pentru cei care preferă formatul, dar articolul scris arată mult mai mult: www.veganostomy.ca/guide-to-ostomy-pouches/ Vă mulțumim pentru vizionare
Hello I was 35 when I had my first stoma bag and I've always used a one piece that is what I had on in hospital I have had cases where with colour blast iPad still one piece and that has just dropped off as soon as the weights coming to the bag I've also been with fitter Earth anthem one pieces of brilliant but I do not always know when the stoma is in the bag so I use the mirror to look at as well but they have told me to go over to a two piece but I'm not too sure about a two-piece cos I've never done it I've not got anyone to show me how to do it so I don't know I don't trust what I don't know I trust what I do now but thank you that was very interesting
My ostomy appliance change video shows how I put on a 2pc, so that might be helpful. I've been using 1pc products lately, and you get the hang out of how to put it on, even without a mirror. Nothing can substitute for experience by just doing. Best of luck!
Body Armor sports drink is another great hydration option. I drank it daily even before my ileostomy. Love that it has NO artificial sweeteners as my taste is sensitive to anything other than cane sugar. Give the orange-mango flavor a try! 🍊🥭
