Maggie, I just wanted to say that a few months ago I was at CHOP and told I needed an ostomy. I was sooo overwhelmed and upset and all my nurses pointed me towards your videos. I just wanted to say that you have brought me so much comfort during my hardest times. Your channel has helped me soo much in adjusting to life with an ostomy, and I cannot thank you enough. You are amazing❤️❤️
@@LetsTalkIBD How lovely! I’m a (now disabled) Critical Care Nurse. That surely is the Highest Compliment! Maggie, I want to join as a member, however I don’t see a “join” button. Perhaps this is a function only seen on a laptop. Tips? Love your work; I am 6 weeks out myself from a loop ileostomy. It will be permanent as I’m too malnourished/ill for a Colectomy etc. Blessings to you and your work and family! @Georgia Mosley How are you doing now? 🙏🏻
I love that you're talking about how you organise being a messy person! On the internet I always see people with their ideal storage and theyre so neat and tidy and able to keep it clean. I struggle so much! I dont have an ostomy but I have empty pill packets all over the place and I can never find anything. It was so refreshing to see someone who struggles with chaos demons too
I wish I could promise it would stay this organized, but it won't. If I could show the rest of our house right now, I think I'd scare people away! haha!
Absolutely love your channel, I have only had my illeostomy/total proctocolectomy since January, but have watched all your videos. I am one of the old folks dealing with this, thanks for everything. I look forward to supporting your channel.
Thank you for all the tips you gave us. My system for keeping my supplies in order is this: When my box of supplies arrives. I have quart size zip lock bags and in each bag I put a full change of supplies. Then I put the rest that are extra in an under the bed storage bin. I have a basket in my bathroom that has a cover. All the filled ziplock bags are in there. When I need to change I grab one of them. Everything is in there even folded paper towels. My insurance company allows me to get 10 small bottles of M9 and two of the larger bottles. I use the small bottles when I go out. I also refill the from the larger bottles. Seems to work well for me. I save all the empty bags to refill again. I have extra supplies but keep them because with all the supply chains breaking down here in the US I don't ever want to be without. The last time I ordered my supply company told me that they didn't know when the next shipment would go out since everything was backlogged. I am a newbie this year to all this and I have learned so much from you. Thank you for being such a blessing to me. Hugs and blessings to you.
That is fantastic organization! I just got an email from my supply company that there may be issues with getting certain supplies, so it is definitely smart to keep a few extras on hand!
Very helpful video, thank you!! I am I guess semi organized, most of my supplies are in the guest bedroom, but kind of scattered, so I do need to go through stuff in there. I keep a small amount of things in the bathroom, it makes it a lot nicer/easier to have things I need to change my wafer and bag right within reach, I have wafers, bags, Eakins seals (rings), adhesive remover wipes, that clear tape like you showed, it is great for many different things, oh and I swear by Walmart brand (I believe it's called Parent's Choice ) unscented baby wipes they make cleaning and changing a wafer and bag SO much easier, I always have a supply of those. I do have some supplies I can probably donate, again I need to go through what I have in the spare bedroom. Hope you are well looking forward to your next video! 😊💕
Thanks for posting this video. Wow, that’s a lot of supplies. Although I suppose it is sensible for you to keep all those different products because you have had skin issues. I have been very lucky to have found the right combination of just 4 products at last. It’s been 3 years of trial & error but for the last 6 months I have not had any issues. Less has definitely been more in my case. Of course I have gone & jinxed it now !!!! So happy that you have sorted out your problems. Love from Kit in York England. X
I love seeing you, I just had my Boston reversed, and I still want to watch your channel, you got me through all my problems, I had no idea what I was doing, I came back from the hospital with an ostom, I am from a very small town, it was an emergency surgery, I had no idea what a wocn nurse was. Our town didn't have one, so I had to learn what to do on my own with your help, thank you so much. How is Zac and the barn coming along, I would like to know!!!!!
Hey Maggie! I use those Coloplast “arcs” with my Hollister one piece which has the fabric edges. But what I do is put the directly on the skin like another barrier and then place the bag on that so the fabric and wafer attach to the arcs. Doing this does a great job of protecting my skin which is very sensitive. Using this method also gives me a better wear time than attaching the bag directly to my skin.
Right now I have a foldable cubbie cube that holds all my medical supplies, and that's overflowing into another cubbie. My plan in to have a rolling cart dedicated for my medical supplies once we move and I have more room. All the homes I've looked at have doors in the master bedroom, so I'll be occupying that room as I can't trust my mom (she has advanced Alzheimers and wanders), with a door so accessible to her. Ice even been told to get special locks for the front and back doors by her neurologist, which I will when we move... but I'll have a large enough room to handle all my medical supplies, finally.
I like your videos and advice. would like to give you an advice in return, switch between the bottom drawer that holds your most used supplies with the top drawer that holds random things. Your back will thank you 😉
Just a tip to help you stay organized- put the stuff you use more into the higher drawers that don’t require you to bend over to get to it or restock it. Less frequently used items should go in the bottom drawers. You will be more likely to keep things neat if they are easily accessible.
I guess as a short person I don't tend to notice things being lower as I typically sit on the ground to get my supplies - I must have subconsciously put them in this order for that reason!
@@LetsTalkIBD that definitely makes sense! I hate having to bend over or sit on the ground to get something so I guess that’s why I would have put them up higher. Everyone is different so whatever works for you is best!
@@LetsTalkIBD look forward to that video, as I have a high output fistula, not a stoma, and wear a bag where a stoma would be, so sometimes have skin issues
You're right - I'll have to go back in and stack them!! And the next drawers up contain cricuit vinyl and nail polish haha! I don't usually use gloves, just making sure my hands are washed afterwards.
2nd to comment... Hey Maggie I need a friend...I just found out that 70% of the mass is Cancer!!! Any advice will be helpful!!! Also how are you 2 love bugs doing??? Take care!!! It's kidney cancer!!!
I'm so sorry!! How are you managing so far? Are you in a lot of pain?? Keep me updated! I tried to find your instagram message but couldn't see it! We are doing OK!
So sorry to hear this, my Brother has been a cancer patient since last December, its been a very scary time for my whole family since the day he was diagnosed. My heart and prayers go out to you. 🙏🙏🙏
Hello, I love your videos I have watched a bunch and learned a lot. I just have one question. How often do you change your skin barrier thingy if there isn't any leakage and everything is holding on well??? It's a week too long?
I change typically every 3-5 days, but there was a time where I was regularly getting 8 days! If it feels secure and your skin doesn't feel damaged, I think you are good to keep it!
I have 1 drawer in my bedroom and a shoe rack that hangs off the back of my bathroom door. It all fits a 3 month supply of ostomy products. Where do you get your black trash bags?
Maggie, I just wanted to say that a few months ago I was at CHOP and told I needed an ostomy. I was sooo overwhelmed and upset and all my nurses pointed me towards your videos. I just wanted to say that you have brought me so much comfort during my hardest times. Your channel has helped me soo much in adjusting to life with an ostomy, and I cannot thank you enough. You are amazing❤️❤️
Awww which nurses?! I was a nurse on 5 South and I think a lot of them knew about my channel! :) I hope you are doing great!
@@LetsTalkIBD How lovely! I’m a (now disabled) Critical Care Nurse. That surely is the Highest Compliment!
Maggie, I want to join as a member, however I don’t see a “join” button. Perhaps this is a function only seen on a laptop. Tips? Love your work; I am 6 weeks out myself from a loop ileostomy. It will be permanent as I’m too malnourished/ill for
a Colectomy etc. Blessings to you and your work and family!
@Georgia Mosley
How are you doing now? 🙏🏻
I love that you're talking about how you organise being a messy person! On the internet I always see people with their ideal storage and theyre so neat and tidy and able to keep it clean. I struggle so much! I dont have an ostomy but I have empty pill packets all over the place and I can never find anything. It was so refreshing to see someone who struggles with chaos demons too
I wish I could promise it would stay this organized, but it won't. If I could show the rest of our house right now, I think I'd scare people away! haha!
Absolutely love your channel, I have only had my illeostomy/total proctocolectomy since January, but have watched all your videos. I am one of the old folks dealing with this, thanks for everything. I look forward to supporting your channel.
Thank you!! I just saw your comment on my members video - thank you so much!
I love watching organizing videos. It makes me want to organize.
That's a lot of equipments for ostomy and injection, Miss Maggie, as well as everything are in place.💖
You are well-organized, too.👍🏻
Hi Maggie, thanks for doing what you do.
Thank you for all the tips you gave us. My system for keeping my supplies in order is this: When my box of supplies arrives. I have quart size zip lock bags and in each bag I put a full change of supplies. Then I put the rest that are extra in an under the bed storage bin. I have a basket in my bathroom that has a cover. All the filled ziplock bags are in there. When I need to change I grab one of them. Everything is in there even folded paper towels. My insurance company allows me to get 10 small bottles of M9 and two of the larger bottles.
I use the small bottles when I go out. I also refill the from the larger bottles. Seems to work well for me. I save all the empty bags to refill again. I have extra supplies but keep them because with all the supply chains breaking down here in the US I don't ever want to be without. The last time I ordered my supply company told me that they didn't know when the next shipment would go out since everything was backlogged. I am a newbie this year to all this and I have learned so much from you. Thank you for being such a blessing to me.
Hugs and blessings to you.
That is fantastic organization! I just got an email from my supply company that there may be issues with getting certain supplies, so it is definitely smart to keep a few extras on hand!
Very helpful video, thank you!! I am I guess semi organized, most of my supplies are in the guest bedroom, but kind of scattered, so I do need to go through stuff in there. I keep a small amount of things in the bathroom, it makes it a lot nicer/easier to have things I need to change my wafer and bag right within reach, I have wafers, bags, Eakins seals (rings), adhesive remover wipes, that clear tape like you showed, it is great for many different things, oh and I swear by Walmart brand (I believe it's called Parent's Choice ) unscented baby wipes they make cleaning and changing a wafer and bag SO much easier, I always have a supply of those. I do have some supplies I can probably donate, again I need to go through what I have in the spare bedroom. Hope you are well looking forward to your next video! 😊💕
Well, I was hoping for a third installment of the Fistula series, but this was good too. ❤️👏😍
Thanks for posting this video. Wow, that’s a lot of supplies. Although I suppose it is sensible for you to keep all those different products because you have had skin issues. I have been very lucky to have found the right combination of just 4 products at last. It’s been 3 years of trial & error but for the last 6 months I have not had any issues. Less has definitely been more in my case. Of course I have gone & jinxed it now !!!! So happy that you have sorted out your problems. Love from Kit in York England. X
I love seeing you, I just had my Boston reversed, and I still want to watch your channel, you got me through all my problems, I had no idea what I was doing, I came back from the hospital with an ostom, I am from a very small town, it was an emergency surgery, I had no idea what a wocn nurse was. Our town didn't have one, so I had to learn what to do on my own with your help, thank you so much. How is Zac and the barn coming along, I would like to know!!!!!
What a great video. I just keep mine in a mid size box.🙏🙏🌹
My god...I really jealous ur storage....we dont have those kind of products, just bag base sometimes can find out the ring.... ohhhh my heaven
Calmoseptine cream is a calamine product and a dab on irritated areas is helpful.
Hey Maggie! I use those Coloplast “arcs” with my Hollister one piece which has the fabric edges. But what I do is put the directly on the skin like another barrier and then place the bag on that so the fabric and wafer attach to the arcs. Doing this does a great job of protecting my skin which is very sensitive. Using this method also gives me a better wear time than attaching the bag directly to my skin.
Oh wow, I didn't think of that!! That is awesome!
Right now I have a foldable cubbie cube that holds all my medical supplies, and that's overflowing into another cubbie. My plan in to have a rolling cart dedicated for my medical supplies once we move and I have more room. All the homes I've looked at have doors in the master bedroom, so I'll be occupying that room as I can't trust my mom (she has advanced Alzheimers and wanders), with a door so accessible to her. Ice even been told to get special locks for the front and back doors by her neurologist, which I will when we move... but I'll have a large enough room to handle all my medical supplies, finally.
Thank you so much for the info!
I using a hanging shoe holder that has 24 pouches to put my ostomy supplies in. I just don't have the shelf nor drawer space for all the supplies.
like seeing the diff drawers
I like your videos and advice. would like to give you an advice in return, switch between the bottom drawer that holds your most used supplies with the top drawer that holds random things. Your back will thank you 😉
Hahahaha I am fortunate being a short person I guess - I never think about things being too low 😆
Just a tip to help you stay organized- put the stuff you use more into the higher drawers that don’t require you to bend over to get to it or restock it. Less frequently used items should go in the bottom drawers. You will be more likely to keep things neat if they are easily accessible.
I guess as a short person I don't tend to notice things being lower as I typically sit on the ground to get my supplies - I must have subconsciously put them in this order for that reason!
@@LetsTalkIBD that definitely makes sense! I hate having to bend over or sit on the ground to get something so I guess that’s why I would have put them up higher. Everyone is different so whatever works for you is best!
yes organizing helps not over ordering
I like watching your videos make more please 💖💕💞
Would you do a video how you got your skin issues sorted out, and what caused the problem, would be very helpful to anyone that has skin damage
Absolutely! That is a great idea!
@@LetsTalkIBD look forward to that video, as I have a high output fistula, not a stoma, and wear a bag where a stoma would be, so sometimes have skin issues
Everything was so neat, but the rolls of tape were not stacked. My OCD is on DefCon2. What is inside the next drawer up? Do you use gloves at all?
You're right - I'll have to go back in and stack them!! And the next drawers up contain cricuit vinyl and nail polish haha! I don't usually use gloves, just making sure my hands are washed afterwards.
2nd to comment...
Hey Maggie I need a friend...I just found out that 70% of the mass is Cancer!!!
Any advice will be helpful!!!
Also how are you 2 love bugs doing??? Take care!!!
It's kidney cancer!!!
It's kidney cancer!!!
I'm so sorry!! How are you managing so far? Are you in a lot of pain?? Keep me updated! I tried to find your instagram message but couldn't see it!
We are doing OK!
@@shenazpatel8195 so sorry, I saw cancer and PTSD, into my history thing they had something related to a stoma, keep the faith.
So sorry to hear this, my Brother has been a cancer patient since last December, its been a very scary time for my whole family since the day he was diagnosed. My heart and prayers go out to you. 🙏🙏🙏
@@shenazpatel8195 I am so sorry I misunderstood, I hope they have a good plan for your treatment and do well. My prayers 🙏
Hello, I love your videos I have watched a bunch and learned a lot. I just have one question. How often do you change your skin barrier thingy if there isn't any leakage and everything is holding on well??? It's a week too long?
I change typically every 3-5 days, but there was a time where I was regularly getting 8 days! If it feels secure and your skin doesn't feel damaged, I think you are good to keep it!
Ana marrbya hata ana 3ndi nafs li3ndek walakin laysa ldaya kola hadihi lm3idat
I have 1 drawer in my bedroom and a shoe rack that hangs off the back of my bathroom door. It all fits a 3 month supply of ostomy products. Where do you get your black trash bags?
Can i use 2,3times the bag( not base, just the bag)
Here in my country stuff of the stoma very rare. Thats why i ask this question
As long as the bag is not compromised! If you are able to rinse it out a bit before attaching it to a new flange, I think that would work!
Im gonna be going to a new doctor soon and im hoping to figure some issues im having with my stomach,
I wish you luck with your new doctor and figuring out what is going on!!
Do the ostomy bags expire
I believe that they do and are listed on individual packaging for whatever product it is!
How did you meet your husband does he help you with your ostemy?
I met him in college! He lived in the apartment above mine :) he is supportive but has never changed it (although probably could if I ever needed it)
I wish close caption was available. I'm sorry I have trouble reading your lips. 😭
I will check why it's not!! Hopefully I can fix that, I'm so sorry!