My Ostomy Would Leak Everyday & I Wish I Had This! | StomaCloak's NODOR Review | Let's Talk IBD
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- čas přidán 10. 09. 2024
- Thank you to StomaCloak for sponsoring this video! I'm thrilled to share my experience & thoughts about their new ostomy cover NODOR. You can find it here: stomacloak.com...
Living with an ostomy, especially in the first few months after surgery, is definitely difficult. You're learning what products work for your stoma as you experience some of the negatives - leaks & odor. I reflect on my experience as a 16-year-old with a new stoma and the leaks I'd experience at school, the odor some ostomy bags had, and other difficulties. I also share about how NODOR could have made a positive impact on my experience and how it is doing exactly that today!
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*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.
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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
I’ve been living with my ostomy for 6 months and most of that time has been spent learning how to deal with it. Your videos have made making the adjustment so much easier and I’ve been able to go back to living normally again - including working. Tomorrow I have a doctors appointment to see about getting it reversed.
Good luck to you!! I got mine a couple of weeks ago. Still in the hospital after the surgery. Mine leaks sometimes multiple times per day still. 😞
Good luck, you got this!!!!
Ugh sorry to hear about the night sweats. Try getting dehumidified bedsheets
I have my ostomy for 10 years and im still learning and trying new products. You are a sweetie ilove watching you💜
Hi Maggie! I have been watching your videos, ever since I had my ileostomy last year. I must say, that watching you, is like talking to a friend; you have taught me so much, and I want to thank you.
Thank you so much, Maggie, for your work helping us to normalize our lives. I am new to this situation, and you consistently hit on issues that I’m personally going through. Please know that you are a beacon of confidence for us all. ❤
I knew nothing about this topic and youtube put your video into my feed. I watched several of them because I was fascinated. I knew nothing about the topic! Thank you for being so open and educating me. You are amazing and an inspiration to many who suffer from this disease. God Bless you.
I have been in contact with the StomaCloak group, and they have been so helpful! Just wanted to put that out there!
Thank you so much for this info. Leaks are the pits. Blessings to all ❤
28 years i've battled UC. Finally run out of drug options. Every biologic, JAK Inhibitor, Anti-TNF, you name it. Finally had them all. Absolutely love these videos because they give me a ton of hope. UC has kept me from being able to take my wife on the dates she deserves, going on adventures, or even just going for a drive without thinking about the nearest restroom. And it's all final once it happens. Ineligible for a pouch so this will be a single-stage proctocolectomy. Permanent Stoma(until they can clone the colon).
Thanks, interestingly, I only battled ULcerative/ IBD for less than ten years: before Relapse/ Fulminant, etc. ( Oddly,nENTYVIO INFUSIONS resolved Symptoms: unfortunately, C DIFF, cytomMegalovirus,)
Maggie
First of all i want to thank you for making these videos. I have had ileostomy 5 months back for adenocarcinoma sigmoid colon. I had total colectomy with J pouch.
Have used all types of bags with issues like leaking, irritation of skin and so on. Used Hollister,Coloplast and others.
I am now satisfied with Medifeliz , 2 piece bag with base plate. I use paste for sticking. My bags have never leaked. No irritation on the skin. I change the bag every 6 days.
I am from India and I am a retired Gynecologist of 65 years.
I also want to know should I go for ileostomy closure as J pouch is already made
Sucks that this is kind of the norm for most ostomy patients because the hospitals give you very little information about how to go through daily life with an ostomy. I was lucky enough to find an NP in my area who specializes in ostomy care and she was very helpful in getting me fitted for the right bags and anything I could think of to help me with daily life. She even leads a support group of various ostomy patients who share I. Their experiences and we meet once a month. The group is about 20-30 people and it’s been very valuable to be able to ask questions of other people living with the same issues. If you can find something similar in your area, I would highly recommend getting involved in something like that.
This would be a game changer at night. I’m an incomplete L2 paraplegic and cannot feel when I am having an issue that fills my bag (diarrhea) and then have an explosion…this is horrendous as I also have a urostomy and have a tube connected to a container on the floor. So I am going to give it a try.
Thank you. I live in rural Maine n don’t know anyone with an ostomy. Thank u
5 months with my ileostomy. The only thing that really upped my game is using the paste instead of the wax ring. Also just being meticulous about shaving the area and treating it with skin barrier spray. No leaks no odor. The only time I ever had trouble was early on when someone else changed my bag.
Do you ever have any issues with irritation because you shave around the stoma? I'm always curious about that!
I am so glad I have found you and your videos. My 11 year old daughter has a stoma since middles of last year. Videos like these helps me and my husband understand better and knowing adults out there with stoma. As my daughter grows I can help her to manage her stoma better. At the moment we are trying so many types of bags and which way helps the bag to stay longer on the stomach skin. And exact issue you are talking about in this video we are tackling with out daughter. She does experience odour, usually leakage. Whole shbang. When she does have leak or bag starting to peel off a call comes through either me or my husband needs to go and change the bag... as her school doesn't have school nurse and closest one is next school up about 5 minutes away or hospital which they cant just come over unless appointments is made.
Thanks Maggie!
Very interesting video. Maggie your subscriber numbers are getting up there!! 😃 Feels like you just got to 100k and now you are getting close to 200k!! Woo hoo!!
I also think that the ostomy belt helps a lot, especially at night, to hold the bag closer and more securely.
I’m surprised the school nurse couldn’t help more, aren’t they RN’s? And if she has a student with a particular need, shouldn’t the school district have sent her to classes to learn about it. anyways, So glad we have CZcams and that you are willing to talk about it so others can learn from your experience.
As a school nurse I am 4 weeks into my temporary ileostomy. I knew very little about ostomies until I had one myself. We were introduced to them briefly during school and just a little more if we had a patient with one during clinical. That being said, parents know far more about the health of their child than most nurses. Take time to teach them how to care for your child. We are a team and we want what’s best and normal for you and your children.
Nurses in hospitals don’t even know let alone school nurses. Other than ostomy nurses not many know
For children going through this and other health conditions, there is Smart Doll from Japan that can be ordered with whatever condition they have. These dolls are so well made and to make the child feel that they are not alone.
So glad you’re feeling good using this new stoma pouch. Think I’ll have a look and buy 1 too.
Thanks for your videos maggie
Marion xxx
Your hair looks soo healthy!!!
Hi from Holland. I folow you secretly 6 months , today i had my sergeury. Colon and rectrum gone. (Sorry my Engish is not good, i hope you untherstand a little bit) permently stoma. But i use alcoho 70% to clean around my stoma, and it work verry good to me, i don,t know if you al try alcohol 70%
Love your hair!
Maggie, you look so pretty!
The best thing ever is the blue liquid that you put in the bag that you recommended. Can't remember the name but is was a life safer
Try acupuncture for the night sweats. It will help
Thank you< Maggie, once again for sharing your views about products that work for you. I have an Urostomy, and I also sweat quite easily; especially in the summer when I am walking on trails in the mountains. I live in Canada, so I emailed an inquiry to see if there is a distributor I can order through. It seems your videos are in sync with my journey with my stoma, and how to adapt to various things - good & bad.
Maggie. Thank you so much for all your help..It has been 3 years since i had my surgery for my illeostomy... Where can i get the covers..... is it covered by medical...
You can find them at stomacloak.com/ ! Unfortunately this is an out-of-pocket item, but they are reasonably priced and last a long time!
Hey Maggie thanks about the info about stoma cloak!!!
One major thing you look fantastic!!!
Another thing does nodor bulge out on one side????
Thank you Maggie for all your videos, these are being very useful in this new stage of my life. Now, I am asking If they distribute somacloas in Southamerica 🥰
weird, never gotten any odors with the vented filtered bags . My youngest son is 14 yrs old and got his ileostomy 1/10/23
I've been living with my osteomyelitis 4 8 yrs now
I use a two piece system .
I'm I nested in this product can you tell me or give me information on where I can get this
Interesting how easily this goes on on your bag. I just got my Stoma Cloak and have a drainable bag and it was a little difficult to get on. Other than that it was nice.
Hi Maggie. Just found your channel. My wife just had an ostomy and I’m looking for things that can help. Just wondering if the nodor works for most sizes of bags
Thank you for sharing 😉
I have my ilostomy for almost 3 years and I'm.going chemo and sometimes I don't know what to eat the other day I had corn and it was bad I would love to get a sample of this if you don't mind I live in California and in the summertime here it's sooo hot
I have a ostomy and my mom has to change it I had it for all of my life
Can the NODOR be used for a urostomy bag?
Hi Maggie!
I am in newzealand I hope I can get it here do you know if you can get it World wide
Geç mis olsun bende ayni
What’s your sickness you throw up?
☀️🌼
Also I have a small stoma
It right up from m u belly button.