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Hello Maggie, I have a stoma nearly 26 and I'm looking for some information about Ibd as I have diarrhoea a lot of days, doesn't matter what I eat, don't know much about it. Lot of times still can't handle having it, as it just destroyed my and was told that I should, but the surgeon never told me the truth. Right enough back in 90s in Ireland, I didn't know what to ask, when I did, got told nothing but lies. Don't know if I have irritable bowel disease or the symptoms, I get constipated a lot, every few weeks and the pain is awful x each time, the pain is getting worse, last time I thought I was going to have to go hospital. Need some information, I hope you can help me. I went through that surgery in November the 3rd 1997 when I was 26 Can you get health insurance with having the bag as I can't Is illeostomy the right name for it. Sorry for all the questions and any spelling mistakes. Love your videos Thank you Sarah Louise Stafford
My father had colorectal cancer in1965 and got a sigmoid ostomy. Back then it was a long stay in the hospital and little kids weren’t allowed as visitors. He showed us the stoma when he came home and it kind of became part of the family! He was very involved in “the ostomy club” and did outreach to new patients. He lived thirty more years and died of an unrelated cancer. Your channel is so amazing and you are a great educator.
You’re so precious Maggie. I have no health issues like you but somehow TH-cam recommended your channel to me. God Maggie, your personality is so vivacious. You’re a keeper. You have my continued 🙏. I also give my admiration to Zak. Above all Maggie, you’re beautiful. Much 🤗.
My Nana had an ileostomy in the 1960s, she lived with one for over 40 years. It saved her life and for that I am grateful because I would have never met my Nana if she had not had it! She became an occupational therapist and helped people who had stomas, and ran a supply store from her home for the rest of her life. She was a true angel for so many people who were going through these surgeries. Thank you for doing these videos and helping people learn and understand.
Biologist here, hence my interest in all things biomedical. You’re doing a great job demystifying and destigmatizing ostomies. I know a lady who has one due to Crohn’s, and she celebrates the date of her surgery as her second birthday because she feels it gave her her life back and improved her quality of life immensely.
A great video, Maggie - very informative and helpful especially for newbies. I got Kermit (my ileostomy) 8 years ago as a result of colon cancer following ulcerative colitis misdiagnosed throughout my adult life as IBS and therefore untreated, until my first bowel cancer screening test at 60 revealed bleeding and I had a colonoscopy. Getting Kermit completely changed my life and I've done really well once I got through the initial learning curve, and it has definitely improved my general health. I am sure my body has adapted, and believe that my lower ilium has taken on part of the role of my absent colon - gut microbiome, thicker output etc. I am very fortunate in that I am able to eat anything I want, and have no problems with a very high fibre diet (whole-food plant-based). I do have ongoing problems with a parastomal hernia which has been repaired twice but live with it mostly OK.
God bless you. I have digestive issues that are controlled with medication and diet and I thought my problem meant I could never lead a normal life, and here you are saying you are married, can do everything you want to do…you are so positive and brave. I realize now I’m lucky I got better and just having to stay on my diet and meds isn’t so bad at all. Thank you for having the courage to come on you tube. Just listening to your story has helped me have a better attitude and outlook. Thanks so much.
Thank you so much for the informative video, Maggie. My maternal grandma needed a colostomy after getting diagnosed with Ucerlative Collitis back in 1994. It did help manage her symptoms for a time, but she succumbed due to other complications from the surgery. I can only imagine how her life would have been today. Medicine has come so far in those years, and I'm grateful that people, like yourself, can lead an everyday life.
Wonderful and informative Maggie. I woke up w illeostomy and it did save my life. You are so informative more so than my doctors. I have complications but am alive to fight the cancer. Thank you so much forr the great information !
Most people don't understand that you will do what you have to when you have chron's. As if you don't have it, you need not too be watching unless you want to be educated on in .Thank you for sharing this with us. Take care.
I don't have digestive issues but I've watched your videos. It's like listening to a doctor. You're so knowledgeable. I imagine you've helped a lot of people. Keep up the good work!
I am not an ostomy patient, but have been subscribed here for almost two years. I was too embarrassed to ask a fairly obvious question. I had assumed (not Googled anything) that the bright red stoma was painful and inflamed. However I have now learned it is healthy and I feel happy for you. I realize there are other ongoing health issues, but having had (different) surgery I associated the deep red area with pain. While I probably should have known, I am so glad that I was wrong. It would seem to be a good idea to discuss all the other ostomy situations.
I wish I could show this to family and friends. Then I wouldn’t have to explain what it’s like living with 20+ years with Crohn’s disease and the effects of having over five feet of my intestines removed. Thank you for posting this.
If I ever need an ostomy, I feel fully prepared from watching you through the years. (I don’t have intestinal issues. My only GI issue is that I struggle with acid reflux.)
You continue to amaze me. Your ability to be both very factual and matter-of-fact about this topic and still be so caring and empathetic is truly inspiring. I don't have any kind of G.I. illness but my father died of cancer of the small intestine which had to be completely removed. I was only 11 in 1964 and 12 when he died. He was a pathologist. Bodily stuff doesn't bother me. Thank you forbeing so special, Maggie.😊
Hi Maggie! I’ve been lurking on your channel awhile and always feel supported in my experiences with Crohn’s disease. Someone mentioned that it is rude to ask “why would you get that?” To me, I wanted the answer to that question in hopes that it would help me make a decision. I’ve been considered for an ostomy because I have multiple fistulas near the anus. Because of their location, surgery to fix them is very risky. Having one would be a quality of life change but I’m also indecisive because I’ve been known have complications after surgery. This video provided me with some very useful information that I can use to help me decide. Thank you!
I had a spinal cord injury back in 2008 and I’ve been struggling with bowel & bladder issues since then, Watching your videos and understanding more has made me finally get a colostomy! My doctor referred me to a surgeon and we have talked about it and I have a date August 28Th to have it done! I always thought it was going to be something that was going to be hard to deal with but you have made me understand that this is not a death sentence I can finally get better quality of life! Thank you for sharing your life experiences!!
Thank you Maggie! Not sure how I stumbled across your channel but I’m so glad I did. Both of my grandpas ended up with colostomy due to colon cancer but I never knew much about any of it. For being so young you are so vivacious with such a beautiful attitude. I loved the video where you were trying in your bikinis! So very informative for those of us who are truly ignorant to all of this. Much love to you’ thank you!
I just randomly came across your videos. I don't have the health issues you do but I wanted to applaud you for sharing this information in such an understandable way. Thank you so much. And uber respect to you. Keep up this important work.
You are such a neat person! Somehow I stumbled on your channel and I love it. I don’t suffer with Crohns, but your videos taught me a lot about the disease. Lol I have fibromyalgia and it sucks, but like you…I get through it. I just wanted to say that you are a great influence for a lot of people. Even people with fibromyalgia. Thank you 🫶
Thanks so much for spreading awareness and giving so much information on stomas. I have severe motility issues proceding a fall where I landed on my back. Ever since then I'm unable to have a bowel movement on my own. I get lactulose enemas every other day as it's the only one that works. However my dysenergic defecation is getting worse and even the lactulose enemas don't completely empty me. It's a whole long story that's confusing and i won't even get into right now. After a month of dealing with this it has come time to start thinking about surgical options. I'm leaning towards the stoma path, but everyone in my life thinks I'm better off doing enemas the rest of my life and is trying to scare me out of the stoma option. I still have no idea what im going to do, but your channel gives me a lot of useful information that's helping me decide.
As so often happens on TH-cam, I get random recommendations. You were one of those. Hello Random. I now watch your uploads because you're positivity and sparkliness is so cheering. You make me realise that even though I have moderate COPD, my situation is as nothing compared to what you've gone through. The way you talk so openly, honestly and even amusingly about your experiences is a real testament to your love of life. All best wishes to you and Zak - and all best hopes for your wish to start a family.
Thank you for sharing. I learned a lot about this topic, I appreciate the use of scientific terminology (you are correct, it does make it easier to research further) So happy that this operation exists and was able to improve your quality of life ❤
Thank you for these videos they are very helpful. I have bladder cancer and having my bladder and prostate removed in 2 weeks and getting a stoma. I know its not like yours but I still find your videos helpful got to say I'm a little scared but I know it will be ok in the long run. Seeing you cheerful and doing good gives me hope.
Hi Maggie hope you and yours are keeping well, its a long time since i last saw one of your videos but the one you have just done is very good and informative, as you know ive had mine 44 years and it is now a different world for ostomists. I am glad you did not push convatec's appI , I am a convatec user but the thought of an APP really worries me as an ostomast your already living your life so enjoy it, soon they will have an APP telling us how to breathe one thing i say to anyone who needs an ostomy is you have a choice " push up daisy's or feel the sunshine"
I admit stomas are something that made me nervous to think about but the more I watch these videos the more normal it becomes to me. Thank you for making these videos both to educate and give visibility to our differences ❤
You explain everything so clearly, even though you use the correct names you explain it so a non medical person can understand. Than’ you I wish you continued good health . Well done for putting such a positive view across . If I was unlucky enough to need an ostomy I would not be scared because of your story .
Thank you again Maggie. I LOVE YOU SO MUCH. I have lost a lot of my intestine through prolapse. my stoma is not as nice as yours but I am grateful for it. i have had 12 surgeries, you are beautiful and brave. xxx
I’m in tears. I’m in the process of diagnosis. My symptoms are so painful and you just gave me hope. I’m having pyelopasty surgery in a few weeks on my right kidney, yet I know there’s way more going on than my GI doctor will dive into and it’s frustrating and scary not knowing. But I have hope now, thank you!! 🙏🏼
Pyeloplasty surgery helped me so much! Kidney pain is no joke - I really hope you aren't in too much pain!! Wishing you good luck! I hope they can figure everything out 🤞
Thank you for mentioning continent reservoirs. I’ve had one (Kock Pouch, aka K pouch) for 41 years. Only a few complications along the way, but 100% would recommend. The BCIR surgeons have retired, but there are several K Pouch surgeons in the U.S. (Ohio, New York, North Carolina and Minnesota).
I always appreciate explanations. I find today, a lot of people dont like to be explained too. They will say a video or comment is too long. I have googled the stoma out of interest. I dont have chrohns but my friend does who I grew up with and it allowed her to become a flight attendant! I also think its important to not dismiss when people have questions. A lot of people today will refuse answering questions about their conditions and just think people need to accept it and they dont need to explain; they dont want to address the question. I had a drama teacher in high school many moons ago say "if someone doesn't know something, they dont know. Just answer the question". People will treat questions today as someone is just ignorant or they have no obligation to answer questions. I appreciate videos like this, for even those of us who dont have you condition. In a society who likes to say they want to educate, they dont really educate. I think you answer the question well and didn't just answer it. You really explained it and thats so important. There is a way to educate people without putting people down for asking and I think you did that and had no intention of putting people down.
I believe I've been following you since I was diagnosed with Crohn's back in 2019. I just want to thank you for sharing as much as you do. I've learned so much from your videos and you're very inspiring.
I love my stoma and I think it looks beautiful to me! I celebrate this part of my body because that little red thing sticking out of my belly saved my life and made it so much better!
Thank you for mentioning motility disorders as they are not well known and are not often recognized/listed as a possible cause for ostomy surgery!.I got my ileostomy due to colonic inertia, a motility disorder.
Hi Maggie my wife had a colostomy from 2007 for about 1.5yr-i helped changing it/apart from the inconvenience the rest was normal living-thanks for openness ❤
I love watching your channel. I think your wonderful. I have a friend that is 99 years young and he has a stoma bag , you have helped me to understand so much . Thankyou for being you .
How I wish that I had known all this. 10 years ago I had an emergency operation and woke up with this thing on my belly. Lucky I found good ostomy bags and the Hollister rings fitted my stoma perfectly, no cutting to do.After 2 years they took that thing away.
Wow, what a beautiful precious woman you are, i deeply admire your determination and love of life. You truly deserve the best in life. You are amazing Maggie. I wish you all the best in your life, be safe. Thankyou so much for being you ! Mike 👍
Omg i love your videos you explain thing very clearly and about the function of the small intestins becoming more like a colon reminsme when you get your ACL replaced by a tendon and over time stars to behave like a ligamento. The mirarles of the body ❤❤ From 🇺🇾 Uruguay
I’m definitely subscribing and going to check out your channel An education is never a bad thing in my honest opinion even if it’s something you don’t need to know about Thanks so much for the professional manner you educate with
I wanted to say thankyou 😊 for all of your videos. I'm having my stoma surgery on Monday 31st July. I'm starting to get scared like you can't believe. I think this is going to a very long and hard weekend for me. But I can get though it, I will get though it. But your videos are helping me alot. I know where it going to placed as the stoma nurse put the black dot on me. Mine stoma is going to be a urostomy because my bladder doesn't work.
Hi, Maggie. I watch your videos even though I don't have intestinal issues. I think you're very nice, smart,open and pretty. Since diseases are initiated by the body, in response to causes or conditions, even if only slowly or bit by bit, have you ever thought or considered what causes, conditions or habits could have contributed? And I think that you are doing a great job. Keep up the good work
Thank you for the Maggie I had a loop ileostomy 10 months ago in the uk you've explained it to me better than on how it works I had mine for slow transit bowel and cronic constipation so that is another condition that needs a stoma
Hun, I’ve had my ileostomy since 2017..I’ve learned more listening to this vid then I have in all..Thank You! I have a question, my stoma is not as beefy red as yours though many times it is red but not rare like. Right now, my stoma is very pale pink on the top of my stoma. The other day it was like a cream color. Also, maybe a stupid question…my stoma is very small, like the size as around my thumb. Do I have anything to be concerned about?
Call your stoma nurse to ask this question. If you can, send a photo and your nurse will let you know if there is anything to be concerned about. It might just be some nutrient deficiency, which can be easily fixed. Or it can be impaired blood supply, This is dangerous and should be adressed.
Long time viewer, here. Thank you for this video. You touched on so many topics, and you always touch the right note, find the right balance and nuance. btw. On the why would you have that done to you question? I always anser: I can higly recommend it to anyone. My life has become so much easier since I have an ostomy.
I have few questions? - after it's bag is fixed what fluid liquid it's collect. Is it the waste of the intestine or the potty. - why ostomy pipe and bags are used and why this surgery done. - how many weeks or months it's fixed like this or is it for life time? - do it affect body and health in anyway.
I had severe colonic inertia ( extremely poor motility). I was only having passing stool 2x a month. It was excruciatingly painful and miserable. I couldn’t eat, lost a ton of weight,ended up on tube feeds, then TPN after the tube feeds stopped working, and I lost more weight, which for a 5’6 27y/o male isn’t exactly good ( actually it’s really not good) . Anyway after trying every motility medication available, having pretty much fail to work, having every test possible to see what was wrong with my colon, it was determined that my colon’s motility was extremely weak, and, in to add insult to injury, my pelvic floor muscles didn’t work properly, meaning, when I tried to push the stool out my rectal muscles would work in the opposite direction, making pushing very very painful. All this led my GI to tell me I needed a permanent ileostomy, which I got on April 16, 2021. I’m so glad I have it, as it has allowed me to get off the TPN and Tube Feeds. I also no longer have to spend long chunks of time sitting in the bathroom because I can’t go. I love that.
Mine was because of repeated bouts of diverticulitis in 6 months. Then, it all of a sudden stopped. My diverticulum scarred over and extra scar tissue caused a stricture. I have a loop colostomy. When I first got it, it was huge ... and looked black, but it was actually basically a scab. I had issues with dehydration for a while, so now I drink 192 oz of water a day.
When You said something along the lines about being able to do anything ( activities) with a Stoma it got me thinking. Are there any Athletes who have Stomas. So I Googled. And yes there are. One that fans of NFL may know of is Rolf Benirschke who played with the San Diego Chargers. He was “the first professional athlete to have an Ostomy while playing “ And there are other Athletes who have had Stomas and played while having one…… Just an idea for a future TH-cam post here. Maybe Maggie You might want to do a post on Athletes or even famous people who have Stomas. And who continue to do their normal ( or not so normal if it’s some celebrities if ya know what I mean) jobs each and every day. It might help to, further, destigmatize the whole thoughts and feelings about Stomas and having one……. ⚛️☮️🌏
Random question from a non-ostomy medical nerd: Do you eventually stop feeling that the bag is stuck to you? As someone with sensory issues, I feel like having something stuck to me 24/7 would drive me nuts; but I also know that we stop paying attention to how our clothes feel throughout the day, so maybe it's like that?
I'm female and I've had an ileostomy over 30yrs. and as for me, I am aware of it every second. I'm super sensitive to things being "equal". I suppose from OCD, so it does drive me crazy at times. I sometimes wonder if I should glue a bag to my left side, just to have a balanced feeling. I'm sure not everyone feels that way. But at least you got one response. :)
Thanks so much for using the proper names. I really resent being talked to as if I'm a 3 year old with words like "tummy."I'm an adult and am not going to be horrified if someone says anus or rectum.Oh,and I corrected na gi nurse when she said "tummy" once. BTW,the pony tail becomes you.Yeah,do the rest of them. One of my aunts had kidney cancer and got a stoma to replace her bladder.
I think some really are uncomfortable using certain terms (there are some I avoid myself) but it makes it so much harder for patients to learn and advocate for themselves if we don't use proper terminology!
People ask that? What, did they think this was a lifestyle CHOICE? "Oh yeah, tired of toilets, thought I'd try this . . . " 🙄 Everyday I am stunned by the idiocy of humans . . .
God bless everyone in here that's dealing with health issues and just anything interior or exterior... Iv never heard of this condition... Im just absolutely dumbfounded by this. Just the fact iv never heard of this alone. Were people born with them.... Or no?... Huh. Well i gotta pay attention instead of typing. Lol That's a start first off. I hope everything will b good for the people dealing with this. Like wtf man. I wont b crying about dry skin anymore.
Great video. My wife now has an ostomy. its located in her upper left quadrant of her belly. so I don't know what its called. We live in a remote are of Northern California where we have no doctors that can follow her with her Ostomy. and due to the surgery leading up to her removal of the colon, her transplanted kidney failed completely and she was also put back on dialysis. So one thing that dialysis does is pull fluid off of her and they don't understand about the fluid issues with her ostomy, so they end up pulling off to much fluid during dialysis and she comes home and crashed for the rest of the day. same with diet. she has a Kidney diet and an ostomy diet. they clash at times, but the dietitions for the kidney cannot help with ostomy. BUT I have to say we have learned a lot for your and other videos on ostomy care and procedures. We thank you for your honesty and getting down to the nitty gritty of this issue.
Oh my gosh, she is a champ balancing ostomy and kidney fluid-related issues! I would love to explore this a bit more as I have to remember there are many who are dealing with different kinds of fluid-balancing issues! Thank you for sharing! I wish you and your wife well!!
@@LetsTalkIBD I thank you for your response. Some how we have to convince the dialysis doctors of this issue. He is the kind of doctor that knows it all.
Also not to complicate things any further, her kidney is now producing urine again and they may take her down to only two dialysis days. We have our fingers crossed for that.
Many doctors are available that can do telemedicine and they may also be able to consult with her nephrologist, to hopefully fix the dehydration issues. An ostomy in the upper left quadrant can be a transverse colostomy, ascendant colostomy or an ileostomy. In all three cases, dehydration can be an issue. For diet, there should be enough foods that can fit both diets, even though it will still be restrictive. Your nephrologist should refer you to a specialized dietician who can help combine the two types of diet she needs. You might want to look into dr. Brooke Goldner and her Goodbye Lupus protocol. She is helping many, many people even with other diseases. But you should book a teleconsultation with her, to see if this is the right protocol for your wife, or if it can be tweaked to suit her needs. Sending good vibes to you and your wife. Hopefully you both will get the help she needs.
I actually had my colon removed in 2019 after 10 years of it being disconnected. When I still had it, I would have to go to the bathroom regularly to expel the mucus!
@@LetsTalkIBD Just watched your video on its removal. Thank you for making such informative videos. :) I am blessed to physically not need the knowledge but I think it is so important to still be informed. I really hope that your pregnancy journey has a light at the end of the tunnel. God bless.
If you're talking to a patient and start saying "why would you ever ..." or "why would you let them", its probably a good idea to just stop talking at that point - it comes off as judgemental and rude.
Agree, and really its more about tone and the way that these questions are phrased than the question itself. It's even more challenging in text than in real life because there's no context, but these kind of statements can imply that the person asking believes that you made a crazy or wrong choice rather than asking about how you came to a decision from a point of curiosity or sincerity.
Yes! I’ve had a few people ask me, “you really want to keep that bag”??? Yes I do!! You do not have my colon so I’m sure you cannot understand!! That bag has allowed me to have a much better life and it’s here to stay!! 😊👍
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Hello Maggie, I have a stoma nearly 26 and I'm looking for some information about Ibd as I have diarrhoea a lot of days, doesn't matter what I eat, don't know much about it. Lot of times still can't handle having it, as it just destroyed my and was told that I should, but the surgeon never told me the truth.
Right enough back in 90s in Ireland, I didn't know what to ask, when I did, got told nothing but lies. Don't know if I have irritable bowel disease or the symptoms, I get constipated a lot, every few weeks and the pain is awful x each time, the pain is getting worse, last time I thought I was going to have to go hospital. Need some information, I hope you can help me.
I went through that surgery in November the 3rd 1997 when I was 26
Can you get health insurance with having the bag as I can't
Is illeostomy the right name for it. Sorry for all the questions and any spelling mistakes. Love your videos
Thank you
Sarah Louise Stafford
My father had colorectal cancer in1965 and got a sigmoid ostomy. Back then it was a long stay in the hospital and little kids weren’t allowed as visitors. He showed us the stoma when he came home and it kind of became part of the family! He was very involved in “the ostomy club” and did outreach to new patients. He lived thirty more years and died of an unrelated cancer. Your channel is so amazing and you are a great educator.
You’re so precious Maggie. I have no health issues like you but somehow TH-cam recommended your channel to me. God Maggie, your personality is so vivacious. You’re a keeper. You have my continued 🙏. I also give my admiration to Zak. Above all Maggie, you’re beautiful. Much 🤗.
Aww thank you for watching!!
My Nana had an ileostomy in the 1960s, she lived with one for over 40 years. It saved her life and for that I am grateful because I would have never met my Nana if she had not had it! She became an occupational therapist and helped people who had stomas, and ran a supply store from her home for the rest of her life. She was a true angel for so many people who were going through these surgeries. Thank you for doing these videos and helping people learn and understand.
10-year BCIR patient here. So awesome to hear it spoken about on a major platform like this! ❤ Thank you for bringing awareness!
Biologist here, hence my interest in all things biomedical. You’re doing a great job demystifying and destigmatizing ostomies. I know a lady who has one due to Crohn’s, and she celebrates the date of her surgery as her second birthday because she feels it gave her her life back and improved her quality of life immensely.
I do the same🥳 A bag is better than a box. 11/11/11 saved my life💜
That's precious ♥
@@wondertwin13 dang, you ever play skyrim? i'm sure you've been asked a 100 times xD
A great video, Maggie - very informative and helpful especially for newbies. I got Kermit (my ileostomy) 8 years ago as a result of colon cancer following ulcerative colitis misdiagnosed throughout my adult life as IBS and therefore untreated, until my first bowel cancer screening test at 60 revealed bleeding and I had a colonoscopy. Getting Kermit completely changed my life and I've done really well once I got through the initial learning curve, and it has definitely improved my general health. I am sure my body has adapted, and believe that my lower ilium has taken on part of the role of my absent colon - gut microbiome, thicker output etc. I am very fortunate in that I am able to eat anything I want, and have no problems with a very high fibre diet (whole-food plant-based). I do have ongoing problems with a parastomal hernia which has been repaired twice but live with it mostly OK.
I’m so sorry that you have Crohn’s disease at such a young age. I’m just amazed how brave you are sharing all this information with the world. ❤
God bless you. I have digestive issues that are controlled with medication and diet and I thought my problem meant I could never lead a normal life, and here you are saying you are married, can do everything you want to do…you are so positive and brave. I realize now I’m lucky I got better and just having to stay on my diet and meds isn’t so bad at all. Thank you for having the courage to come on you tube. Just listening to your story has helped me have a better attitude and outlook. Thanks so much.
Thank you so much for the informative video, Maggie. My maternal grandma needed a colostomy after getting diagnosed with Ucerlative Collitis back in 1994. It did help manage her symptoms for a time, but she succumbed due to other complications from the surgery. I can only imagine how her life would have been today. Medicine has come so far in those years, and I'm grateful that people, like yourself, can lead an everyday life.
Wonderful and informative Maggie. I woke up w illeostomy and it did save my life. You are so informative more so than my doctors. I have complications but am alive to fight the cancer. Thank you so much forr the great information !
Most people don't understand that you will do what you have to when you have chron's. As if you don't have it, you need not too be watching unless you want to be educated on in .Thank you for sharing this with us. Take care.
I don't have digestive issues but I've watched your videos. It's like listening to a doctor. You're so knowledgeable. I imagine you've helped a lot of people. Keep up the good work!
I am not an ostomy patient, but have been subscribed here for almost two years. I was too embarrassed to ask a fairly obvious question. I had assumed (not Googled anything) that the bright red stoma was painful and inflamed. However I have now learned it is healthy and I feel happy for you. I realize there are other ongoing health issues, but having had (different) surgery I associated the deep red area with pain. While I probably should have known, I am so glad that I was wrong. It would seem to be a good idea to discuss all the other ostomy situations.
I wish I could show this to family and friends. Then I wouldn’t have to explain what it’s like living with 20+ years with Crohn’s disease and the effects of having over five feet of my intestines removed. Thank you for posting this.
If I ever need an ostomy, I feel fully prepared from watching you through the years. (I don’t have intestinal issues. My only GI issue is that I struggle with acid reflux.)
You continue to amaze me. Your ability to be both very factual and matter-of-fact about this topic and still be so caring and empathetic is truly inspiring. I don't have any kind of G.I. illness but my father died of cancer of the small intestine which had to be completely removed. I was only 11 in 1964 and 12 when he died. He was a pathologist. Bodily stuff doesn't bother me. Thank you forbeing so special, Maggie.😊
Hi Maggie! I’ve been lurking on your channel awhile and always feel supported in my experiences with Crohn’s disease.
Someone mentioned that it is rude to ask “why would you get that?” To me, I wanted the answer to that question in hopes that it would help me make a decision. I’ve been considered for an ostomy because I have multiple fistulas near the anus. Because of their location, surgery to fix them is very risky. Having one would be a quality of life change but I’m also indecisive because I’ve been known have complications after surgery. This video provided me with some very useful information that I can use to help me decide. Thank you!
I had a spinal cord injury back in 2008 and I’ve been struggling with bowel & bladder issues since then, Watching your videos and understanding more has made me finally get a colostomy! My doctor referred me to a surgeon and we have talked about it and I have a date August 28Th to have it done! I always thought it was going to be something that was going to be hard to deal with but you have made me understand that this is not a death sentence I can finally get better quality of life! Thank you for sharing your life experiences!!
Thank you Maggie! Not sure how I stumbled across your channel but I’m so glad I did. Both of my grandpas ended up with colostomy due to colon cancer but I never knew much about any of it. For being so young you are so vivacious with such a beautiful attitude. I loved the video where you were trying in your bikinis! So very informative for those of us who are truly ignorant to all of this. Much love to you’ thank you!
I just randomly came across your videos. I don't have the health issues you do but I wanted to applaud you for sharing this information in such an understandable way. Thank you so much. And uber respect to you. Keep up this important work.
You are such a neat person! Somehow I stumbled on your channel and I love it. I don’t suffer with Crohns, but your videos taught me a lot about the disease. Lol I have fibromyalgia and it sucks, but like you…I get through it. I just wanted to say that you are a great influence for a lot of people. Even people with fibromyalgia. Thank you 🫶
You are truly an amazing woman. I’m inspired by you.
Thanks so much for spreading awareness and giving so much information on stomas. I have severe motility issues proceding a fall where I landed on my back. Ever since then I'm unable to have a bowel movement on my own. I get lactulose enemas every other day as it's the only one that works. However my dysenergic defecation is getting worse and even the lactulose enemas don't completely empty me. It's a whole long story that's confusing and i won't even get into right now. After a month of dealing with this it has come time to start thinking about surgical options. I'm leaning towards the stoma path, but everyone in my life thinks I'm better off doing enemas the rest of my life and is trying to scare me out of the stoma option. I still have no idea what im going to do, but your channel gives me a lot of useful information that's helping me decide.
THIS VIDEO IS SO INFORMATIVE! Thanks for the work that you do!
So well explained! More power to you Maggie! ❤
As so often happens on TH-cam, I get random recommendations. You were one of those.
Hello Random.
I now watch your uploads because you're positivity and sparkliness is so cheering. You make me realise that even though I have moderate COPD, my situation is as nothing compared to what you've gone through. The way you talk so openly, honestly and even amusingly about your experiences is a real testament to your love of life.
All best wishes to you and Zak - and all best hopes for your wish to start a family.
You are truly and aspirations to so many thank you 😊
Thank you for sharing. I learned a lot about this topic, I appreciate the use of scientific terminology (you are correct, it does make it easier to research further) So happy that this operation exists and was able to improve your quality of life ❤
Thank you for these videos they are very helpful. I have bladder cancer and having my bladder and prostate removed in 2 weeks and getting a stoma. I know its not like yours but I still find your videos helpful got to say I'm a little scared but I know it will be ok in the long run. Seeing you cheerful and doing good gives me hope.
Your hair style in this is the cutest! I’m like 13 minutes in and I couldn’t stop thinking that, so I had to go ahead and comment.
Hi Maggie hope you and yours are keeping well, its a long time since i last saw one of your videos but the one you have just done is very good and informative, as you know ive had mine 44 years and it is now a different world for ostomists. I am glad you did not push convatec's appI , I am a convatec user but the thought of an APP really worries me as an ostomast your already living your life so enjoy it, soon they will have an APP telling us how to breathe one thing i say to anyone who needs an ostomy is you have a choice " push up daisy's or feel the sunshine"
Love watching you and your hubby . What a beautiful couple yall are . Maggie you have helped so many people dealing with having a stoma. 🥰💜💙💙
I was 27 when I had my collectomy. I’ve had it 42 years with minor hickups now and then. You can live a long life if you want to!
I admit stomas are something that made me nervous to think about but the more I watch these videos the more normal it becomes to me. Thank you for making these videos both to educate and give visibility to our differences ❤
You explain everything so clearly, even though you use the correct names you explain it so a non medical person can understand. Than’ you I wish you continued good health . Well done for putting such a positive view across . If I was unlucky enough to need an ostomy I would not be scared because of your story .
Thank you again Maggie. I LOVE YOU SO MUCH. I have lost a lot of my intestine through prolapse. my stoma is not as nice as yours but I am grateful for it. i have had 12 surgeries, you are beautiful and brave. xxx
I’m in tears. I’m in the process of diagnosis. My symptoms are so painful and you just gave me hope. I’m having pyelopasty surgery in a few weeks on my right kidney, yet I know there’s way more going on than my GI doctor will dive into and it’s frustrating and scary not knowing. But I have hope now, thank you!! 🙏🏼
Pyeloplasty surgery helped me so much! Kidney pain is no joke - I really hope you aren't in too much pain!! Wishing you good luck! I hope they can figure everything out 🤞
@@LetsTalkIBDthank you for posting your videos they are so helpful. Especially for an old lady, but a newbie to this experience ❤
Wow you are really good at explaining things.
Thank you for mentioning continent reservoirs. I’ve had one (Kock Pouch, aka K pouch) for 41 years. Only a few complications along the way, but 100% would recommend. The BCIR surgeons have retired, but there are several K Pouch surgeons in the U.S. (Ohio, New York, North Carolina and Minnesota).
I always appreciate explanations. I find today, a lot of people dont like to be explained too. They will say a video or comment is too long. I have googled the stoma out of interest. I dont have chrohns but my friend does who I grew up with and it allowed her to become a flight attendant! I also think its important to not dismiss when people have questions. A lot of people today will refuse answering questions about their conditions and just think people need to accept it and they dont need to explain; they dont want to address the question. I had a drama teacher in high school many moons ago say "if someone doesn't know something, they dont know. Just answer the question". People will treat questions today as someone is just ignorant or they have no obligation to answer questions. I appreciate videos like this, for even those of us who dont have you condition. In a society who likes to say they want to educate, they dont really educate. I think you answer the question well and didn't just answer it. You really explained it and thats so important. There is a way to educate people without putting people down for asking and I think you did that and had no intention of putting people down.
I believe I've been following you since I was diagnosed with Crohn's back in 2019. I just want to thank you for sharing as much as you do. I've learned so much from your videos and you're very inspiring.
Maggie you are so kind giving people helpful advice.i don't have problem but look forward to your videos .❤
I love my stoma and I think it looks beautiful to me! I celebrate this part of my body because that little red thing sticking out of my belly saved my life and made it so much better!
Great job educating about the GI system and helping people understand you can have “quality” living with stomas and are not freaks and alone. 💕💕💕💕💕🤣
You are great. When I went through my diverticulitis I couldn’t find anything. Thank you x
You're so smart and beautiful, wishing you a happy and healthy life Maggie 💜
Maggie - You are so brave! Thank You!!
Thank you for mentioning motility disorders as they are not well known and are not often recognized/listed as a possible cause for ostomy surgery!.I got my ileostomy due to colonic inertia, a motility disorder.
Thank you for all the info
Hi Maggie my wife had a colostomy from 2007 for about 1.5yr-i helped changing it/apart from the inconvenience the rest was normal living-thanks for openness ❤
You are amazing , thank you for this information ❤❤❤❤
I love watching your channel. I think your wonderful. I have a friend that is 99 years young and he has a stoma bag , you have helped me to understand so much . Thankyou for being you .
How I wish that I had known all this. 10 years ago I had an emergency operation and woke up with this thing on my belly. Lucky I found good ostomy bags and the Hollister rings fitted my stoma perfectly, no cutting to do.After 2 years they took that thing away.
Wow, what a beautiful precious woman you are, i deeply admire your
determination and love of life. You truly deserve the best in life.
You are amazing Maggie. I wish you all the best in your life, be safe.
Thankyou so much for being you !
Mike 👍
Omg i love your videos you explain thing very clearly and about the function of the small intestins becoming more like a colon reminsme when you get your ACL replaced by a tendon and over time stars to behave like a ligamento. The mirarles of the body ❤❤
From 🇺🇾 Uruguay
Just think the world 🌎 of you! (Crit care RN here & I admire you so much!). 🙏🏻♥️😘
I say duodenum same as you. Lol 😆
I’m definitely subscribing and going to check out your channel
An education is never a bad thing in my honest opinion even if it’s something you don’t need to know about
Thanks so much for the professional manner you educate with
Thank you for sharing. You are truly an amazing IBD warrior.
Thanks for fast response I'm watching now 😊
I wanted to say thankyou 😊 for all of your videos.
I'm having my stoma surgery on Monday 31st July. I'm starting to get scared like you can't believe. I think this is going to a very long and hard weekend for me. But I can get though it, I will get though it. But your videos are helping me alot. I know where it going to placed as the stoma nurse put the black dot on me.
Mine stoma is going to be a urostomy because my bladder doesn't work.
Thank you for this video.
Hi, Maggie. I watch your videos even though I don't have intestinal issues. I think you're very nice, smart,open and pretty. Since diseases are initiated by the body, in response to causes or conditions, even if only slowly or bit by bit, have you ever thought or considered what causes, conditions or habits could have contributed?
And I think that you are doing a great job. Keep up the good work
Thank you for the Maggie I had a loop ileostomy 10 months ago in the uk you've explained it to me better than on how it works I had mine for slow transit bowel and cronic constipation so that is another condition that needs a stoma
Hun, I’ve had my ileostomy since 2017..I’ve learned more listening to this vid then I have in all..Thank You!
I have a question, my stoma is not as beefy red as yours though many times it is red but not rare like. Right now, my stoma is very pale pink on the top of my stoma. The other day it was like a cream color. Also, maybe a stupid question…my stoma is very small, like the size as around my thumb. Do I have anything to
be concerned about?
Call your stoma nurse to ask this question. If you can, send a photo and your nurse will let you know if there is anything to be concerned about. It might just be some nutrient deficiency, which can be easily fixed. Or it can be impaired blood supply, This is dangerous and should be adressed.
Long time viewer, here. Thank you for this video. You touched on so many topics, and you always touch the right note, find the right balance and nuance.
btw. On the why would you have that done to you question? I always anser: I can higly recommend it to anyone. My life has become so much easier since I have an ostomy.
I have few questions?
- after it's bag is fixed what fluid liquid it's collect. Is it the waste of the intestine or the potty.
- why ostomy pipe and bags are used and why this surgery done.
- how many weeks or months it's fixed like this or is it for life time?
- do it affect body and health in anyway.
Bless you, dear Maggie.
You’re so brave. Thank you for sharing
First! always wanted to do this! :)
Superb, educational video!
Great overview
Thank you so much for sharing this. It's super interesting and you're helping people learn and feel better \o/
I had severe colonic inertia ( extremely poor motility). I was only having passing stool 2x a month. It was excruciatingly painful and miserable. I couldn’t eat, lost a ton of weight,ended up on tube feeds, then TPN after the tube feeds stopped working, and I lost more weight, which for a 5’6 27y/o male isn’t exactly good ( actually it’s really not good) . Anyway after trying every motility medication available, having pretty much fail to work, having every test possible to see what was wrong with my colon, it was determined that my colon’s motility was extremely weak, and, in to add insult to injury, my pelvic floor muscles didn’t work properly, meaning, when I tried to push the stool out my rectal muscles would work in the opposite direction, making pushing very very painful. All this led my GI to tell me I needed a permanent ileostomy, which I got on April 16, 2021. I’m so glad I have it, as it has allowed me to get off the TPN and Tube Feeds. I also no longer have to spend long chunks of time sitting in the bathroom because I can’t go. I love that.
Mine was because of repeated bouts of diverticulitis in 6 months. Then, it all of a sudden stopped. My diverticulum scarred over and extra scar tissue caused a stricture. I have a loop colostomy. When I first got it, it was huge ... and looked black, but it was actually basically a scab. I had issues with dehydration for a while, so now I drink 192 oz of water a day.
Thank you for this Maggie. You're such a darling
❤You are so brave and kind.
When You said something along the lines about being able to do anything ( activities) with a Stoma it got me thinking. Are there any Athletes who have Stomas. So I Googled. And yes there are. One that fans of NFL may know of is Rolf Benirschke who played with the San Diego Chargers. He was “the first professional athlete to have an Ostomy while playing “ And there are other Athletes who have had Stomas and played while having one…… Just an idea for a future TH-cam post here. Maybe Maggie You might want to do a post on Athletes or even famous people who have Stomas. And who continue to do their normal ( or not so normal if it’s some celebrities if ya know what I mean) jobs each and every day. It might help to, further, destigmatize the whole thoughts and feelings about Stomas and having one……. ⚛️☮️🌏
I have been so fortunate to have met him! I actually got to get a photo with him at a UOAA conference- he is awesome!!
i got my ostomy at 19, in 1971. I have lived with it now for 53 years. - and going STRONG. Can anyone beat my 53 years with ostomy?
Random question from a non-ostomy medical nerd: Do you eventually stop feeling that the bag is stuck to you? As someone with sensory issues, I feel like having something stuck to me 24/7 would drive me nuts; but I also know that we stop paying attention to how our clothes feel throughout the day, so maybe it's like that?
I'm female and I've had an ileostomy over 30yrs. and as for me, I am aware of it every second. I'm super sensitive to things being "equal". I suppose from OCD, so it does drive me crazy at times. I sometimes wonder if I should glue a bag to my left side, just to have a balanced feeling. I'm sure not everyone feels that way. But at least you got one response. :)
I also have sensory issues, but I got used to the feeling after a few weeks. I sometimes even forget I have two ostomies!
Thanks so much for using the proper names. I really resent being talked to as if I'm a 3 year old with words like "tummy."I'm an adult and am not going to be horrified if someone says anus or rectum.Oh,and I corrected na gi nurse when she said "tummy" once.
BTW,the pony tail becomes you.Yeah,do the rest of them. One of my aunts had kidney cancer and got a stoma to replace her bladder.
I think some really are uncomfortable using certain terms (there are some I avoid myself) but it makes it so much harder for patients to learn and advocate for themselves if we don't use proper terminology!
Fascinating 🧐
My colostomy stoma was 'born' on 6 March this year because of colorectal cancer. I also don't have a rectum or anus. I have named my stoma Scarlett.
god bless you, you are a strong woman
I’m thinking of getting a colostomy bag and was wondering if you could change it one handed
People ask that? What, did they think this was a lifestyle CHOICE? "Oh yeah, tired of toilets, thought I'd try this . . . " 🙄 Everyday I am stunned by the idiocy of humans . . .
You are brilliant and thank you ❤
God bless everyone in here that's dealing with health issues and just anything interior or exterior... Iv never heard of this condition... Im just absolutely dumbfounded by this. Just the fact iv never heard of this alone. Were people born with them.... Or no?... Huh. Well i gotta pay attention instead of typing. Lol That's a start first off. I hope everything will b good for the people dealing with this. Like wtf man. I wont b crying about dry skin anymore.
Great video. My wife now has an ostomy. its located in her upper left quadrant of her belly. so I don't know what its called. We live in a remote are of Northern California where we have no doctors that can follow her with her Ostomy. and due to the surgery leading up to her removal of the colon, her transplanted kidney failed completely and she was also put back on dialysis. So one thing that dialysis does is pull fluid off of her and they don't understand about the fluid issues with her ostomy, so they end up pulling off to much fluid during dialysis and she comes home and crashed for the rest of the day. same with diet. she has a Kidney diet and an ostomy diet. they clash at times, but the dietitions for the kidney cannot help with ostomy.
BUT I have to say we have learned a lot for your and other videos on ostomy care and procedures. We thank you for your honesty and getting down to the nitty gritty of this issue.
Oh my gosh, she is a champ balancing ostomy and kidney fluid-related issues! I would love to explore this a bit more as I have to remember there are many who are dealing with different kinds of fluid-balancing issues! Thank you for sharing! I wish you and your wife well!!
@@LetsTalkIBD I thank you for your response. Some how we have to convince the dialysis doctors of this issue. He is the kind of doctor that knows it all.
Also not to complicate things any further, her kidney is now producing urine again and they may take her down to only two dialysis days. We have our fingers crossed for that.
Many doctors are available that can do telemedicine and they may also be able to consult with her nephrologist, to hopefully fix the dehydration issues. An ostomy in the upper left quadrant can be a transverse colostomy, ascendant colostomy or an ileostomy. In all three cases, dehydration can be an issue.
For diet, there should be enough foods that can fit both diets, even though it will still be restrictive. Your nephrologist should refer you to a specialized dietician who can help combine the two types of diet she needs.
You might want to look into dr. Brooke Goldner and her Goodbye Lupus protocol. She is helping many, many people even with other diseases. But you should book a teleconsultation with her, to see if this is the right protocol for your wife, or if it can be tweaked to suit her needs.
Sending good vibes to you and your wife. Hopefully you both will get the help she needs.
Thank you so much ❤️
I was diagnosed with Crohns last year, but mild. I'm not sure if it will progress.
Crohn's has a mind of its own, but wishing you the mildness maintains!
Thank you
I use convatec
I know this is gonna sound stupid but, do you pass gas through your stoma? I'm curious since I'm wondering where the gas goes?
Anything you do from your rectum, I do from my stoma! That includes gas!
Hi Maggie i was going to ask you what I need to do to be a sterilization technician? Do you know if they do a good money?
I have IBS. No cure just a roller coaster ride 🎢 and fibromyalgia
So you still have a colon but it is not being used? What happens to the mucus you talked about? Great descriptions, thanks :)
I actually had my colon removed in 2019 after 10 years of it being disconnected. When I still had it, I would have to go to the bathroom regularly to expel the mucus!
@@LetsTalkIBD Just watched your video on its removal. Thank you for making such informative videos. :) I am blessed to physically not need the knowledge but I think it is so important to still be informed. I really hope that your pregnancy journey has a light at the end of the tunnel. God bless.
If you're talking to a patient and start saying "why would you ever ..." or "why would you let them", its probably a good idea to just stop talking at that point - it comes off as judgemental and rude.
Yes because 99% of us had our lives saved due to those miserable things.
Agree, and really its more about tone and the way that these questions are phrased than the question itself. It's even more challenging in text than in real life because there's no context, but these kind of statements can imply that the person asking believes that you made a crazy or wrong choice rather than asking about how you came to a decision from a point of curiosity or sincerity.
Completely agree! I love when people ask questions, just be mindful of the tone as it may come across as judgmental!
Yes! I’ve had a few people ask me, “you really want to keep that bag”??? Yes I do!! You do not have my colon so I’m sure you cannot understand!! That bag has allowed me to have a much better life and it’s here to stay!! 😊👍
Do you have to do your thing in the morning or does it just release without you giving er a push?
Oh my thank u descriptive helpful