Reacting to Ostomy TikToks | Let's Talk IBD
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- čas přidán 20. 01. 2023
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I have been following you since the beginning as my sister had crohns. She refused an ostomy through the years. Finally became malnourished and took her own life in July 2022. I wish she would have followed you Maggie and seen how she could have lived. It was a sad and painful journey. She is. Now at peace. Thanks for your video for family and patients as well. God bless you and your family and Zak. Hope Dad is healing co
I am so sorry about your sister. Such a tragedy
Prayers for you and your family ❤
I had an uncle that had IBD symptoms. I’m not sure if he was ever properly diagnosed, but I’m almost sure he had Crohn’s disease or UC disease, he refused an ostomy and unfortunately he passed away
I’m so very sorry for your loss, may her memory be a blessing 💔my husband was diagnosed about 10yrs ago, just had and still is in a very bad flare right now. I wish you all the best.
@@mommabird2813 thank you. It means a lot
After 13 months with an ostomy due to cancer, I am having surgery tomorrow to get it reversed! I'm very excited but glad that it kept me alive for the last year!
Best wishes for your surgery tomorrow and in the coming days & weeks!! Take care :)
@@chronically_cls Thank you very much for the well wishes and my surgery was a success!
@@63LindaLou yay congratulations!
How did your procedure go!? Very excited for you!!! I hope everything went perfectly!! 🙏 ❤
@@melissas6205 Thank you so much! The procedure was a success ... and I am cancer free!
I use to work in GI ward and found women more likely to support and share.
How lovely to see 2 young men just sorting out ostomy.
I know Social Media can be so Toxic but equally it so good to see men using it to debunk the taboo I know my patients would have benifited.
Maggie! I just wanted to say, I met someone recently with an ostomy bag, and he was so shocked & relieved by how much I knew on the topic- love you and your Channel ❤️
Aw
I was super embarrassed when I first got my istomy but watching your channel has made me become more confident. I’m still not super confident but getting better. I do also wish I knew people like around me where I live that had them. I guess people don’t just go walking around saying “hey, I have an ostomy” and there are more than it seems but I’d still like to know others where I live that have them. This was fun and interesting.
Find your local chapter of the United Ostomy Association. Help is what they do.
Having an ostomy I felt so embarrassed but it’s people like you that made me accept it!!
I LOVE my ileostomy! It saved my life! I show my ostomy to everyone who will look. I take it as a chance for education! I named my stoma Fountain. She is sooo darn cute. 🙂 I have several other chronic conditions but I am making it through! Thanks for the vid, it made me smile ☺ Oh I forgot to mention, I think they OT student was making stoma paste. My ostomy nurse talked about that.
I was diagnosed with UC fall 2019. Things went south real quick. Had a total colectomy fall 2020. I started watching your channel, and you have inspired me so much and helped me through this transition to life with a ileostomy. God bless you!
You have a good heart, Maggie.
I can’t thank you Maggie and others who have talked about having an ostomy. I adjusted to my permanent colostomy as if I had always had it. My doctor could hardly believe how well I’ve done. I told him it was because of you Maggie and others who made this so normal!! When I had an illeostomy 17 yrs ago, I knew no one. It was reversed after three months. So much has changed for the better in supplies. My ostomates have saved me from depression! Can’t thank you enough!!!
Love this video. Makes me feel less self conscious about mine. Unfortunately I have 2 stomas and a nephrostomy. So managing 1 was hard but 3 is a different story. Thank you for this. I feel so much better. I also let my stomas hang out at every opportunity ❤❤❤❤
Girl I'm double your age nearly and you've made it normal to have an ostomy, all the best to you👋
I do not have an osteomy bag or any problems like yours. I just wanted to say your videos have taught me so much and I have been educated by you and I appreciate it. You have a wonderful way of teaching us, a friendly and down to earth demeanor which makes all of it very clear. Why do I watch your videos and other medical type videos you might ask? I’m fascinated by most medical & health procedures as long as the videos are well presented and presented with truth and warmth. Thank you for being your charming self and sharing such a big part of your life with us. I wish you all good things and much happiness in your life. I shall keep watching. ❤
Putting the barrier over the powder helps set it and keep the powder in place. You wait for it to dry and then the bag sticks well like theres no powder there. I find this method works better and helps heal better than powder alone.
Maggie, you make life with Crohn’s less scary. Truly, thank you ❤
Paul from The Raw Life recently had to get a colostomy. They were able to film the bag changes when they went to the nurse. She told him to keep the area around his stoma shaved.
Oh my gosh, Maggie. I’m having my ileostomy on the 31st of this month! I loved watching these quickies. I have been watching many of your videos. I have learned so much from you and now I am less afraid. Thank you so much!
Thank you for all you do to remove the stigma of having a ostomy. I have run into so much negativity since getting mine.
I love your channel. It’s the first one I found and the main one I watched when I got my Ostomy. Thank you. There was a stigma in my mind that only older people had them. I felt not normal. Finding someone young like me helped me feel not so alone. It’s been nice to watch your journey.
As with body hair, I just shave around the stoma and the area covered by the flange. Usually have to shave every time I change my flange usually 3 to 4 days.
I loved when you talked about the special occasions bags. I mean how cool is that! Even your ostomy gets to dress up!! love it. My ass cannot dress uo so fancy
I loved this Maggie, thank you. It makes me feel less alone to see fellow ostomates 💕
Just found you. New sub. I’m a semi retired nurse and I love your content. Your compassion shows through with every video you showed. ❤️
I agree, the lady that had the video that explained Crohns Disease and the digestive tract, was amazing. I was thinking they should use it for nursing students. ❤️I was always so intimidated by ostomies until I had some experience.
I think you would make an amazing nurse. Compassion is the number one qualification with love for ppl a close tie.
Thanks for your video.
God bless and have a great day!
Aww thank you!! I actually am a nurse! Well, used to work inpatient GI but due to surgeries now just hang out on CZcams! :)
I kind of stumbled in to your videos. I watch a lot medical stuff as a male nurse working in post clinical intensive care just to keep me updated and don't forget stuff I didn't have to take care for for a while. I liked this video because of the many people that show others that it isnt that hard - most of the time. Keep rocking it, you are great 👍👍
Catching up on videos while recovering from Barbie Butt surgery few days ago. You have helped with the understanding and comfort of all the changes. I’ve had my Ileostomy for over a year now.
Thanks for this… I have EDS and Izzy is great. I was just told that an ostomy is in my future (depending on when I am ready) and your videos have been so helpful in giving me a real look at it. Thank you so much.
Loved the reaction video! You should definitely do more reactions!
Love the information you give us. I do not have a osteomy but if I ever have anyone talk about theirs I will know about it. Thank you Maggie !
Awesome!! You should do more of these types of videos. Very interesting!
Please do more like this❤ I didn’t know these videos were out there!
I told my sister the other day that I had a “naked” shower without my bag and told her the minute I stepped out the stoma became very active. I don’t think she understood the concept but when I tried the new Hollister bag, it was too small, so I’ll make the next one a bit larger. Thanks for sharing these videos, we don’t feel alone as ostomates
I shower "naked almost every time I change my bag. It gets my peristomium much cleaner than just baby wipes.
Great video👍 I really enjoyed it!! The one where the young woman put an illustration up of the digestive system was really excellent!! I’d definitely love to see more of these type videos. I, like you Maggie absolutely love my heating pad!!!! My security “blanket/pad” for the past 4 years since my surgeries.. helps with any gas discomfort as well as relieves achy abdominal muscles!! Sending love to both you and Zak ❤ thank for another informative enjoyable video 😊
That was so informative and interesting to see different people at various levels of their condition & the confidence and comfort with wearing their ostomy. Thanks for sharing, Maggie. 💕🤗
What a fantastic video-I'm not on TikTok so thanks for posting these Maggie!!❤This made my day! OMG the girls drinking out of the bags cracked me up!!!
I think my husband gets fedup of me saying that l dont feel great .He siad he dosent and he is so loveing and understanding l know am lucky but sometimes l do feel alone you are the only one l have watched a couple of times but l am going to watch you more because watching your videos makes me feel that am not so alone 💖😊💖
I get family members that do the same to me. I'm pretty lucky to have a fiancé that is super understanding and patient when it comes to my health. But yea my own family some of them I think, they just don't understand what I go through daily.
Same. My husband is so good to me. But, yea, I can tell he’s annoyed when I complain too much. So I decide I don’t say anything unless I need his help or I need to lay down and miss out on whatever we have planned. Or to take care of the kids. If I need support, I just give hugs.
We cannot help how we feel .try to make them understand .But if we all go out for dinner am the first to leave because after food my stoma starts working and l need to gey back home to lay down so l can hold my bag on while my stoma is active .l once stayed after a family dinner and my stoma started working and it was all over my belly the mess a d my bowls were loose luckily l only have to say to my hubby l have to go and he says come on then love he dose understand because he see me everyday how l am .But with family when l do go everyone wants to say there goodbyes but am sorry there isnt time to do so when l have to go l have to go and l know everyone knows that feeling on here when we are out for dinner. Dont get me wrong l have a lovely family and l know am lucky but its a bit hard trying to get them to really understand. Thank you for the coments thay do really help talking to people who gets me and my new body. I do hope everyone has had a great day today. One last thing l am not the sort of person to keep going on about my stoma and l am a positive person .It might not sound like l am but l also know you all get me 💖😊💖
I don't think people get tired of us, they get tired of not being able to do anything about it. It's easier to ignore it because most people are solution oriented, and people who love you get frustrated that they can't make you feel better or fix it.
You're not alone dear, I can assure you. And indeed Maggie's videos did help me. Keep up the good work you can do it.
Body hair: if you have warning about an upcoming ostomy, permanent hair removal (laser, electrolysis) is a huge benefit. When I had my ileostomy, one nightmare was having to shave the area around an active stoma. So when it looked like a permanent colostomy was in my future, I started laser hair treatments. Huge improvement on comfort. I still have a few hairs in the area, but they are much thinner and less of a problem.
oooh that second video. My daughter is 17 and doesn't want to TALK about it, let alone SHOW it to people. I see it, the school nurse sees it, and her docs and nurses see it. She would be GREAT with a youtube or tiktok or whatever in gathering a community of ostomy teens but she doesn't want that at all. So of course I'm not encouraging it. If she ever wants to make others not feel alone, I'd gladly HELP her share. Frankly, the ostomy is the BEST decision we've made for her.
Hi Maggie, loved the video. I have had my stoma moved, relocated twice. I have been having problems with a parastoma hernia for the last three and half years. My colon was removed March 2019 due to severe constipation that it was no longer functioning. My first surgery for the parastoma hernia was August 2019. I went on to have two more surgeries in 2020 for a parastoma hernia and again two more in 2021, The surgery in October 2021 was a massive hernia repair with moving the stoma to the left side. I had my 6th parastoma hernia surgery September 9, 2022 and I also had an incisional hernia at that time. The recovery from this surgery has been rough and is going at a snails pace. My abdomen is still swollen with discomfort and pain with some days being better than others. At this time though I have no hernias.
My surgeon wanted to get me as far out from the October 2021 surgery to give my body a chance to heal. We knew I needed another surgery in January 2022 because of another parastoma hernia. My sister had repeatedly said for four years she was going to move me to Jacksonville, Florida so she could help me but when I really needed her help she basically said no, I was devastated. But I'm blessed to have a great friend who has become like a brother to me and begin helping me back in February 2022. It has been with all of his help that I currently don't have any hernias. He and his fiancée are moving to Hawai'i to help his parents in the first week of March. They are having me move with them so they can continue helping me. My problem now is finding the right stuff to keep a seal. I have never had a routine and over the years pain has been a problem when changing everything that if I had a good seal I didn't remove anything until the seal was compromised. But with this last surgery my stoma became really small and it is oval instead of a round circle causing some difficulties in finding a ring and flange that will work for me. It is due to the fact that my abdomen is still swollen that is causing a lot difficulties. The placement of the stoma would have been better if it was a few inches this way and few inches that way and all would be good now if it had been relocated to that spot but it wasn't. So adjusting and adapting to the current situation and continue working with my ostomy nurse and finding one once I get to Hawai'i. I'm in Nebraska right now and looking forward to continue my recovery in Hawai'i. The one thing that helped me get through all of this was my Bachelors in Nursing Degree and watching your videos Maggie. Thank you so much for sharing. And yes, there are those days that are for crying. And pet therapy, my cat Simba has been a champ throughout the years with me in and out of the hospital. Looking forward to more videos. . .
Very interesting to see all the differences, and love the friends who say, all for one and one for all: ).
HI Maggie I loved this. What is great is that they were all young and it shows that this isn't just something an old person has to deal with. I have a question for you . Maggie you have said that you used non drainable pouches. How many bags do you go though in a day? Do you take them off to empty and then put back on? Noticed that yours are smaller also. Thank you for helping me through my last 2 years with and ostomy. My "Winnie" is now 2 years old and I am so much better since I have had her. I knew I was going to have the surgery so I watched all your video's before I went in for surgery and you made me feel so calm and educated about what I would be going through. Big hugs and lots of blessings to you and Zak
Maggie, you asked about hair and flanges. Over the last four years I use tweezers to pull hair near my stoma and use spray adhesive remover to remove the flange. The remover works well in allowing the hair not be pulled during the removal. I have tried shaving both electric and disposable razors. For me I found they created more problems than helped. I have gotten a lot of good things from your channel keep up the good work
You're just the best Miss Maggie! I'm almost 2yrs in with Ollie Jr & you've helped me even more than my drs & nurses with your advice. God bless you!❤
Love this video, different for a change & I really enjoyed seeing other people change & deal with their Ostomy. 👌
Loved this Maggie, really a great idea.
i switched to mini closed hollister bag about 2 months after my colectomy because of you mentioning you using them. I find them super easy and alot less "messy: and more hygenic for me.
I'm not touching shit all through out the day now.
Fortunately my supplies are all covered. I go through about 5-6 bags a day.
Recently I had issues with the supplied brown poly bag that come with my pouches, leaking because they weren't sealed closed on the end.
I ended up ordering some black non transparent doggy bags that are almost the same size. If you need to find a replacement bag check amazon for doggy bags, the come in small rolls so its easy to pack around with you.
body hair around the stoma for me is almost balding in that area now, the few hairs that are around the parastomal skin i usually can pull then out by hand when i change out my bag, but i generally don't have any issue with hair under the flange in my case. I can see this being a bigger issue for dudes with a carpet of hair in that area.
I find barrier extenders have saved me from sooooooooo many leaks. I've used them to "patch" things up if im out and notice i am about to start to leak, i can slap another one or 2 around the edge and buy myself a bit more time to get home to change.
As Maggy Said use a dusting of powder, I like to blow the powder off or dust off the excess with a tissue. If you use paste you cant have to much, the paste is a lifesaver.
I have lupus. Having an auto immune disorder in the beginning made me feel crazy like it was in my head.. Many, many years later cause I'm in my 40s. I came across this doctor who could read me like a book. He knew he just knew before I knew. He asked me questions that shocked me cause I didn't think it applied to how I was feeling, even though I knew something wasn't right in those areas as well.. He sent me for tests and diagnosed me with lupus. It was such a relief to know what was wrong. How do you deal with something when you don't know what you're dealing with. It's really important to take the stigma off of diseases. We realize how similar we all are❤.
When I had my temporary illiostomy, I found 3-5 regular marshmallows would slow down significantly or stop my output for a few minutes. It would take a few minutes to take effect.
With my permit colostomy this isn’t as effective unless I’m dealing with diarrhea 🤷🏻
I think you are very inspirational and caring. My friend who has cancer has got one of these and he's told me a few things about it. The estoma can make noises like farting sounds which he explains to people that he has one because of cancer. Also there are no nerves in the area so it's just numb for him and he gets no pain. I found your video very educating so thank you x
I just realized that I’m now more grateful I don’t have any hair on my stomach so no issues with pulling or anything like that.
i just wanted to say thank you…. They’re talking about taking 85-90% ish of my colon and that scares the pi** out of me….. in the long run it’s unavoidable I’m pretty sure… but I’m already severely vitamin D and B12 deficient I do IM B12 injections every 7 days… I need it more often but that’s all we could get my insurance to cover so I manage with what I’m allowed my primary literally cried when she read the report from my colorectal dr because she was very concerned about the negative effect that it very likely will have on me…. I have POTS I lose consciousness daily it’ll probably lead to me being bed bound honestly…. I just wanted to say I enjoy your videos and I appreciate you and all of the CZcamsrs that don’t just show the positives but show the whole picture…. It’s important for people to be prepared for what COULD happen and for them to know the WHOLE process so they can make a better informed decision and they can ask the right questions…..
Loved this video. Please do more like this. Thanks
So fun seeing so many familiar ostomy faces!
Love the support for eachother!!!
This was fascinating, thanks for sharing.
Loved this video Maggie 💜
I wish docs would explain it like that young girl did too. I been trying to find diagrames too
I heart all the videos I watch from u cause ur inspiring
Another good video Mags! Thank you!
This is awesome, people need to share and be honest with them selves and others. It is OK…. So I say.
18:55 this guy is clearly an Aussie and those wipes are actually chucks, basically a disposable dishcloth.
Your videos have helped me with my new stoma that I got. Also, I would suggest gallon Ziploc bags to put under the stoma bag when you were replacing it he asked me bag put the Ziploc bag underneath and then you can put all your garbage in the Ziploc bag while you’re changing and then you zip the Ziploc bag up and toss it away
Nicely done! You r an empath like me! You face reflects all the emotions in the videos!
Don't normally view TicToc videos, so this was fun!
I'm a fairly new Ostomate. I had to have an elective Colostomy done in Nov/Dec 2022. The only reason for doing it was because I have Spina Bifida and no bowel control at all. I wound up having a bad ulcer that caused Osteomylitis and a Trauma surgeon suggested I have it done. Have you heard of this? I know you have IBD but had you heard of people doing it for skin breakdown? I'm just curious! FYI I happen to LOVE my ostomy now. I wish I had it done when I was a kid to minimize lots of issues over the years. Love your videos! I'm absolutely addicted to watching ostomy videos now. Makes me feel so much more comfortable about dealing with mine. :)
maggie those wipes are a kitchen cloth you can buy in Australia at the grocery store, hes just cut them up. the brand is called 'Chux'.
I love them!! Man, I'll have to find something similar here! Thanks for letting me know :)
Fabulous video Maggie! It took me like 2 years to realize the bag could be folded and tucked. Lol!
I use that powder and mix it with glycerin. It makes a fantastic stoma paste. I always hated the ready made ones in a tube, but I need something to prevent instant leaking. They’re an absolute pain to remove though and never properly dry. “My” mixture stays together and sticks to the ostomy waiver when removing. My stoma nurse introduced me to that technique because I have a very challenging situation. It’s not actually a stoma, but an open tummy with several pieces of intestine “hanging about”. The whole thing is about 5 inches across. It’s terrible and I actually envy all of you with your small, neat little stomas.🙂 An ostomy change takes me exactly 1 hour😟.
Is there a reciepe you are willing to share?
Loved this video
The 2int one is so sweet
To answer your question: you just shave the body hair - my surgeon recommended an intimate area trimmer. Usually they’re a bit gentler on the skin. And after some time, the hair growth under the wafer does slow down.
I use my heating pad all the time. I just got one from Amazon that’s a weighted one. It’s amazing, I love it.
Personally, I'm grateful for every day I don't have to take an ice bath.
I loved this video !
I have endometriosis and i am one of few cases where i am in severe pain everyday, and i mean like 24/7 for the last 5 years. My pain never stops, when i bend, sit or world my uterus hurts like hell because i have adenomyosis as well. Sometimes the pain is even worse and i can barely walk. I have had one surgery and with no success because we have no endo specialists in my country. I need a surgery in another country and i have no money to travel and for the surgery. So i am staying in pain. I cannot imagine having those two together. I just hope her case is not like mine with endometriosis. Because i cannot imagine having bowel problems like IBD plus endometriosis. Some people do not experience pain with endo. Only during periods which is kind of bearable because it is only a few days in month and bot everyday like for me. And i am sad no medication helped me. I tried everything. I am sorry for girls like us with chronic diseases. I wish you well.
It’s AMAZING how Many People have these Bags and seeing Young People like Yourself wearing them….
What I have seen most Men have LARGE ones….I a so Grateful that we now have the Knowledge
So that everyone has their Lives…..
ALWAYS watching from Virginia 🌹
Thanks for all you do. I miss having someone to chat with. On other that has an ostomy.
Paula Sojo - the lady that had a flare day, has made OSTOM-me bag covers and they are so cute
Great video! Thank you..
Great information
Love Kya!!!
The video of the mom and her son reminds me of me and my little cousin.
He (10) has had a feeding tube his whole life and knowing he’d grown up with one was one of the reasons I wasn’t afraid to get one.
His mom told me that he’d been insecure about his tube and he’d started trying to hide it when he’d go swimming and things and that people had made fun of him for it. So when I went to his house for the first time with my tube I made a point to wear clothes that showed it.
The entire time he kept holding his tube through his shirt but didn’t say anything. But the next time I came to his house he ran up to me and gave me a pack of tubie pads he’d picked out with his grandma and was all excited to show me how to use them, show me which ones he was wearing, and talking all about feeding tubes.
It made me so happy to know that in a way we were helping each other.
My mother passed away from ulcerative colitis back in 94. They didnt even know how to treat it.
Whenever I post comments they come through with my partners name so with that in mind: The hair on my stomach and what I do. I have a Norelco trimmer for grooming facial hair so I take off the guard that stops you from removing all the hair like a barber would do and use that to cut the hair down. I only need to do it every few weeks usually or sometimes I just use a razor. The hospital said the razor creates micro cuts on your skin although I don't really see or feel any difference. There you go Maggie :)
You are a beautiful soul. God bless you.
17:50........ LMAO. I rarely get shocked, but hey, that was definitely a shocking scene. WTHeck 😱🤪
I have an ileal conduit urostomy and I named it Squirtle like the pokemon for a reason haha it reallllyy loves to act up the moment I get the bag off to change 😂
Regarding ileostomy then colostomy: treatment for rectal cancer is to cut out the cancer and reconnect, and then do an ileostomy to allow the anastomosis to heal. The 'covering ileostomy' is reversed after several months. If the anastomosis fails then that leads to a permanent colostomy. If you happen to be on this path, demand very careful review of the anastomosis before you get the ileostomy reversed.
U reacting to these so neat. Do more
Yes I enjoyed it, for someone who is getting an ostomy soon.
A little hair comes off every time I pull my bag off. After 44 years, there's nothing left. I never had a lot of body hair; I don't know what the other guys do.
I would like to see this video again. Was interesting.
Fun video!!!
Those purple wipes look just like Handie Wipes in the u.s. except I only see yellow here! Hi Maggie!
The wipes he's using look like Handy Wipes. That's a brand name. A type of disposable dish towel. Looks like he cut it into smaller pieces.
I've seen in blue, yellow, pink, green back in 1980's so I'm thinking purple is available now.
I don't have the stoma, my grandmother does. For body hair which there isn't much but it is there I just use an electric razor to trim it down. Otherwise it pulls and she says it hurts a lot.
I shave my hair when needed usually every other bag change
Sendimg much love to you lovely 💖😊💖
Sometimes you can do layers of powder and spray to protect the skin if it’s really raw. A thin layer of power and then spray let it dry and it’s usually thin enough if done correctly. There’s actually a name for it and of course I can’t remember lol my skin has had some pretty bad reactions so I’ve had to do this.
Basically the skin prep wipe id the same as the spray
The name for it is crusting x
Maggie, you are so much like me. Example; the wipes you are curious about because they are pretty💖 Anything new or something I’m not familiar with I must know 😂
Hey, if it's stylish, I need to know about it, even if it's for ostomy care 🤣
@@LetsTalkIBD those wipes are called a chux wipe. They are used in the kitchen or bathroom for cleaning in Australia. Out ostomy nurses tell us to cut up a chux and use it with water to clean the stoma. Chux come in alot of nice colors. I cut a chux into 4 pieces usually. Hope that helps your curiosity
Some very helpful videos out there, well the drinking one was a little weird. I wonder if those "health benefits" from that scary ice bath (I hope there is a human holding that camera in case of emergencies) is related specifically to IBD/ostomy? I know it has been addressed previously on this channel, but I cannot remember why aren't those UK bags available in the U.S. ? Is there some sort of monopoly in the bag market? Or maybe U.S. health insurance is oddly picky about what they cover?