TOP TEN Most-Asked OSTOMY Questions! Kids, Swimming, Working... | Let's Talk IBD
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- Опубліковано 14 чер 2024
- Let's talk about my top 10 questions dealing with ostomies!
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To be totally honest, I'm not sure what aspect of my UA-cam viewing habits brought me to your channel but I'm glad I found it. It is very refreshing to see someone speaking about difficult and often socially "taboo" subjects directly and with humor.
Maggie, the new intro is beautiful. Marriage life suits you -- you are glowing!
Yes! I love it!
Your viral video showed up after I watched a few of the "celebrity what's in my bag" videos. Can say that they did not have the same thing in theirs that you have in yours 😂
As someone who has celiac disease I relate to you and love that you also use humor to cope with challenging medical issues
So glad young people dealing with crohns can watch someone like you talking so openly, honestly and confidently about your own experience!
You're going to be helping so many people with all of your information.
I had an ostomy at 14 (I lost my entire large and half my small to colitis), and it was hell beyond comprehension for me. Everything that could go wrong did. Thankfully I was able to get a j-pouch. But at this point, especially after a rupture at the end of it (after getting hit by a car when in a crosswalk) that they couldn't get closed for four years (four years of "output" draining through my abdomen...it was bad), there's so much scar tissue that there'd be no going to a j-pouch again if something went wrong. We can't even get a clear path to biopsy some cysts. The risk is too great of going through what's left of my small intestine. I want to say that going back to an ostomy would be a nightmare, but the reality is I'd die since my abdominal cavity is too scarred to do anything. The extent wasn't known until this summer, which makes it a damned good thing I ignored my doctors (who were mandating a c-section after IVF) and had a homebirth. I wouldn't have survive a c-section.
That's awesome you had a home birth despite all your other health issues. Amazing.
damn thats soooo intense! congrats you were able to have a kid though!! why wouldnt you have survived a c section?
There needs to be a support group for people with an Ostomy. I had the surgery done back in October. I had emergency surgery after taking myself to the emergency room two weeks before. I haven’t been emotionally the same since then. Plus’s everything else I went through last year did not make this easy. I did not even know of the surgery until I had it done. Woke up in the ICU with my Colin gone after passing out in the bathroom in my room in the hospital. I had the best doctor in the area. Boston has the best hospitals in the country.
Your video ended up in my recommendations, which I’m not sure how since I usually watch beauty videos. But just wanted to say what a lovely person you seem to be. You have handled what seems like many health challenges with grace. And now you are educating others. Best to you!
My mom has Crohn's, and I have some smaller chronic issues, and this channel has really helped soothe some of my fear of the potential future. It's scary to think that I might someday need an ostomy, but seeing someone else who is so candid about it feels comforting that it's not the end of the world if it does eventually come to that.
When I had the temporary loop ostomy, skin problems were the worst !
My ostomy nurse gave me a product called multidex powder ( I think that's what it was called). Been 22 years.
That powder applied around the wound worked great to promote healing. She said multidex is a product used on burn patients.
You are helping so many people by sharing your experience! It is so inspiring :)
I love the new intro and must say how very much I admire your strength of spirit and the light you share with us. God bless and stay well.
Getting in the mindset.
You have been an insperation thx so much for what you do you are a hero in so many ways❤
I want to say that you are helping more people than you know with such necessary information! I watch you and others that have gone through all the troubling issues with a bag. Bless you for helping so many!
I found your channel on a fluk and love it. I have had bowel issues. Your honesty and information is so important and helpful. Thank you for being here for so many of us. Your a God send.
I love you. You are a valuable asset for educating about a subject that is difficult to talk about. You are a class act, a sweetheart and a magnificent educator.
I admire your honesty about your IBD and ostomy. You are an absolute icon and inspiration for young women. I wish more people knew about you.
I have no idea why UA-cam decided to recommend your channel, but I am SO grateful it did! What a joy you are to listen to and learn from! We could all stand to get a little more education on these subjects, and I have found your channel to be so informational and inviting. Thanks for making this video for new subscribers like me! ❤️
Thank you for sharing! I am a home health nurse and your videos help me to best educate my patients when they have a new ostomy or are having ostomy complications.
Maggie, you are amazing! I love the fact that you can easily talk about your situation. I wore a bag for three months due to cancer. After 14 yrs being cancer free, I am now facing the probability of another stoma due to radiation stenosis.
Thank God for you Maggie! I told my doctor how incredibly grateful I am for you and how much you have helped me and this community. You are an Angel, a god send and I am so blessed to have found you on here! Keep up the absolutely wonderful work that you do! 🙏🏻❤️🙏🏻
I want to tell you that you are so brave. People need to hear these things because as you've said there isn't much out there about the care of an ostomy condition. I have a friend who went through colon cancer and he was so scared of having an ostomy bag. I told him I worked with a guy for 5 to 8 years who did heavy work and you couldn't tell he had one. Turns out he had an ostomy bag since he was 20 and he was now in his fifties. I applaud you for your strength and honesty. I had a friend with crohns that passed a few years ago, he struggled for information to treat his condition. Often doctors were done w/him after surgery. Thank you for your compassion on others who suffer in silence because no one speaks to their need. GOD bless Ya !!!!
You are so informative.
I love your honesty.
I learnt so much about this particular topic as of last week when UA-cam recommended one of your videos. Your personality drew me in 😊.
Simply put ,,your a priceless gem. Sharing your story with others is so helpful to others. You've helped me to understand that we share some of same issues. My ileostomy,,gave back my life,, I'm free to do things now. God bless you
I have a different health condition from you, but I am grateful for your videos. It’s nice to have someone else with chronic illness and disabilities to watch on UA-cam and share so vulnerably and informatively. It helps us all feel like we are not alone. Thank you for creating a community here. ❤️
In a previous video, you mentioned you’re planning on trying physical therapy to help with the vaginal and period symptoms. I would encourage you to try it. Again, I have different issues, but I find I learned so much from my pelvic floor physical therapists. They make me feel so comfortable in their office and are just amazing people. I hope you try it and have a good experience too.
I love the new intro. I wish you both a long happy life together.
Thanks for your honesty. It helps me to deal better with my cancer patients 👍
Thanks again Maggie, for a clear, and we'll explained video, educating people who otherwise may not have understood ostomies, and helping ostomy patients feel more comfortable about their personal situations. Having an iliostemy myself, I knew all your answers ,just kept shaking my head yes and thinking Maggie you hit the nail on the head. Also I too have learned some new info by watching your videos. Keep them coming !! Life IS good after an ostomy !!
I’m quite glad I found your channel! This year I’ve had two hospital visits, one where I was hospitalized and one where I was just in the ER for a while and both were related to colitis. It has settled and the colitis is gone but I’m in near constant pain and they didn’t find chrons but things are still quite hard and seeing your channel has helped me understand more about the various things that go on with colitis and chrons and all that stuff.
Awesome sharing of needed information for those facing same health issues. Thank you.
THANK YOU SO MUCH! I had surgery recently and because of covid I'm not having as much support from the hospital that you would normally.. so your content is invaluable and appreciated 💜💜💜🥰
First Class Video & Audio! Thanks Maggie...
Hey !!!! Thanks for this video ...... your a brave brave girl ‼
My sister has Chron's disease but not so severe. She is managing her simptoms with medicaments. I like your channel, you seem like very sweet and kind person. Greetings from Croatia.
I cannot get over your new intro. It's too cute!!
I had no idea what ostomy was. I knew only a little about Crohn disease but I had no idea how difficult and demanding it could be. I am really happy that you made this video because it opened my eyes a little more. Your work is very admirable! I wish you all the best.
Love your introduction! Beautiful pictures
Thank you for sharing It is so brave of you to share your story. Your helping so many people. I'm not dealing with this but I have IBS and I worry things will get worse. I don't know if it will be that bad but I worry it could.
Maggie you are helping me so much with your advice get my ilostomy next year and your such an inspiration thank you
I’m not a nurse, but I have a good idea of how hard, exhausting, and dangerous it is (even before Covid). You are one strong chick. Hope u tell yourself this often. You are the woman. Oh, and very much appreciate u sharing 2 help others get through some tough times.
Hello Maggie it’s so nice to meet you! I am a new subscriber to your channel. I’m so glad I found you!I have Crohn’s disease as well.I have had it for over a 26 years of my life now. I am a mother of two and a grandmother. This was such a great question and answer video! I do not have an ostomy. I just dealt with being really, really sick all of my life! It’s nice when you come across other people that know what you’re going through! By the way, the beginning of your video is absolutely beautifull!!!Congratulations on your wedding!! I’m pretty sure I had Crohn’s disease when I was in high school and the doctors didn’t know what was wrong with me, because back in the early 90s it really wasn’t heard much about. It took me a few years to even figure out what exactly it was that I had, what were the causes, so on and so on. Anyway, I’m so glad I found your channel! Thank you for sharing your story with us all! From, Illinois ♥️
I too was diagnosed back in mis to late 80's with Crohns and it was mostly unheard of then. I had had pain since age 7 but diagnosed at 17. Many resections later and after 2 kids and a hysterectomy it has largely settled down but it is the devil!
FANTASTIC VIDEO MAGGIE!!!
you are great wonderful & I appreciate you...until I ran into your videos...I felt I was alone lonely & lost...you're an inspiration...I have had horrible crohns & ilestomy pain leaking 😢 😫 😞...until I was diagnosed correctly than just perdisone!!!
I can go on & on...but now I want to grow w you & learn & do things I want to do...instead of just hiding!!!
You're the best💖from southern California you're always welcome here!!!
I actually have fecal impaction very often and my doctors have considered a temporary surgery to let my colon heal up from all the trauma and your videos really help me make a more educated choice on wether or not to have this surgery.
I’m a new subscriber well a few weeks old! LOVE 💕 UR NEW INTRO!!! Beautiful!!
Hi Maggie I am new to your channel and I must admit I didn't know too much about ostemy surgery and the info around it all but I always want to learn and would hate to be ignorant to any 'invisible' medical issues people may have thank you so much for educating me. I am loving your videos ❤❤ sending love from the UK xxx
you seem like a smart and funny person. you just got a subscriber!
I thank you so much for sharing ur story! I stumbled upon ur channel and have been binging ur vids!! I’m so excited to watch this one!! Probably the same questions I’ve been asking in my mind lol!!! Bless you for being beautiful you!! I live your personality! 🙏🏼❤️💕☮️💋👍🏽👍🏽
Can’t wait! I’m looking forward to it! 🥰
Hi Maggie. I am new here. I am thinking the fact that I am a nursing student is why UA-cam suggested you to me. But who knows with youtube LOL Having been a CNA and an ER medic in the past, I have come across many ostomies. I am glad I found you. I like your channel. And you have chickens! I do too. I Love my ladies.
I’d love to see an @mamadoctorjones collab 🤌🏽🥰
You are a beautiful special person. I’m certain your videos are helping so many people who identify with your disease. But even for people who do not have the same you inspire us in our own situations. ❤️🤗
Great work blazing on
I'm loving your videos so much! I've learned so many things, I can't believe this isn't common knowledge.
Are there reusable bags or do you have to dispose of them?
Thank you for your candor. I had a loop ileostomy on and off for 3 years and HATED it - was so grateful when my J pouch was ready to take over. I’ve been lucky to have a pretty smooth go if it for 17 years but am haunted by the prospect of having to go back to having a stoma if anything goes wrong with the J pouch (cancer, etc). Hearing somebody talk about these things makes me feel a little less scared of that possibility. Sounds like the equipment hasn’t changed at all in 17 years though - yikes! We can talk to a pod in our house and have groceries delivered but there’s no solution to gas yet?!?
Well spoken once again
Very interesting video!
How do you stay positive? I have bad anxiety and I just think that if I were in your shoes, I'd freak out and give up. So kudos to your graciousness and strength. But seriously, how do you do it?
I’m waitingggg
Thank you for the video, super informative! I was wondering if having an ostomy has dealt with your symptoms? Have they gone since you have had it? Thank you x
I love ur strength omg
Hello Maggie! I'm a new subscriber too and I'm so glad I found your channel. I have a bag too and a question I get a lot is, does it make a lot of noise?
Well, yes and no. Haha mine likes to toot it's horn every once in a while but most of the time it's quiet. How about you?
Much love ❤
watching your videos is trully helping me a lot to get ready for the surgery im going to be getting (i have crohns as well but also genetic colon cancer joooyy not really...) but thank you for inadvertently helping me haha.. im just stupid scared for it loosing almost all of the colon and who knows how much of my small intetestine from the ileum and up. but thank you so much truly
I too have Crohns and worked in the medical field for many years. My health declined when I was pregnant with my second child and I was able to have him after being fed thru an infusaport for most of pregnancy. I later had a hysterectomy and the Crohns settled down a bit. I have also has 3 resections. It's a tough disease!
Maggie I don’t use an ostomy but I love your channel.
I found your videos ironically right after we finished colon and colon disease in my Med Lab 2.
This channel is great. Thankyou! I had a panproctocolectomy with the rectum left and had an ileostomy 7 or 8 years ago. There’s definitely the possibility of having the rest of the rectum removed, especially as I just started having some symptoms after a perfect year post-op (well, what’s perfect, I almost died from sepsis after the op and had to have emergency surgery for 7 hours). What do you know/what we’re you told about the risks of the surgery, especially nerve damage affecting vowel function? Thanks again!
Do you have dietary restrictions or supplements because of your ostomy?
I have Celiac ×2 years now, and, I am surprised at the energy loss one gets from gut diseases as well as other issues like extreme weight loss, as a former Body Builder I went from 240 lbs to 138 lbs in one year, so, to a point, I feel you...
Hi Maggie ❤you look so beautiful in the Premier picture
It was very informative. I enjoy.
Re living some of the things that I go through.
I’ve had my Ostomy for 12 years. It can never be reversed not sure how long you had yours.
I’ve had issues that I’m not sure anyone has addressed
Do you think you will actively go back to hospital nursing? I can see you being patients favorite nurse, you have the knowledge but also the physical understanding of what these patients are going through, so I'm guessing that makes you more sympathetic and empathetic towards them. I don't have crohns but I do have GI issues and I can say I'd feel better with you as my nurse! 🤗😁
Maggie and Zac. Just wanted to stop by and tell you both to keep up the good work. I do love your theme song. Tell me, what is the name of it, and who plays it, or if you juct came up with it yourself ? Its cold here in Virginia.. Just had our first accumulative snow fall, and a white Christmas.
I always shower before a change; I just have to use gentle spray.
I have a question...Do you feel while you are having an output..?...Like do u get belly aches when you have to go #2 or while you are going #2/output?
I want to give a shout out to Maggie's merch... her sweatshirts are phenomenally comfy!! If anyone is shopping for a new hoodie, please check out Maggie's! I got a pink hoodie from her last launch and I lived in it last winter💞.. looks like I'll be getting another one soon🤗💜
We might get one, thanks! 💕
wow, emptying it a few times a day!
What do you do for skin irritation around the stoma? I have a GJ feeding tube (I know not the same) and skin ulcerations are bad right now.
Wow your video popped up and I just had to watch because I've had an ostomy bag and it was terrible for me. I was out of work for 6 months, in and out of the hospital for infections and was allergic to all of the stuff to keep the bag on. I was raw from the outputs so I was eating because I thought that would stop it. Boy was I wrong! I lost 60 pounds before it was reversed.
Maggie ur so cool I wish I could be like u!
Hi Maggie!!!
I’m don’t know how but you popped up INE night and my life is soooo insignificant but in a good way. Because you have such a positive outlook on life it made my “problems” disappear literally You are so brave & inspiring Thank you so much for being you 😊 I do have 1 quick question- why Barbie butt & not just close up just your rectum?? All kid that seems so painful😒
Have you ever used the very long illiectomy/ostomy pouch? (Big/long as a leg). I asked my ostomy nurse about those, she said they were more for high liquid output. Thanks Maggie!
I haven't needed them fortunately! My output is liquid, but not watery unless I'm sick! Those are fabulous for those with watery output or Short Bowel Syndrome :)
On your earlier post, if you buy CURVED scissors, it is so much easier to cut your stoma circles
I wasn't even thinking about gas with an ostomy. But now I am wondering if it actually makes a sound. Idk. Every other question has been answered and that's literally all I'm left wondering about.
Yes it does sometimes , and yes it sounds like a fart from your behind lol
Great answers! I have had a stoma from ulcerative colitis for 48 years. I have had some blockages over the years, have you ever experienced those? If you do the best treatment for me was getting a lots of if
IV fluids
I'm truly sorry this has happened to you and you had to stop your nurse's job. I'm glad you did get to experience it though.
What's the difference between (symptoms wise) Crohn's and Celiac? Does being lactose intolerance have anything to do with either one? I have had 1 week of steady diarrhea and now I'm between regular to constipation. I have 23 or more chronically ill things wrong with me. I am not sure what my gastro doctor is thinking other than these.
New subscriber from Oklahoma(i kinda have the opposite(a catheter)
Can you get constipated? Or like blocked?
Do you have problems with vitamin absorption due to ilistomy
Hi I have a question ive been suffering with c.diff colitis for 24 months now I'm scheduled for a resection surgery on December 18th their removing my sigmoid colon due to a stricture because of all the inflammation my question is is the surgery a hard one and due I have a chance of getting the c.diff back while I'm healing from surgery? I'm just kinda scared 😨
I hope this isn’t a rude question. Does an ostomy make sounds? Passing gas or your output?
Not always but occasional yes
How do things work nutrition- and hydration-wise? Are there certain nutrients absorbed in the colon that you have to have more of?
I believe that absorption of nutrients mainly occurs in the small intestine, and the large intestine/colon absorbs water.
@@barbaragremaud3499 I've been told the large intestine also aborbs minerals, mainly salts. So extra salt and extra water are required. I drink lots of water and since I've always preferred my food on the salty side, and am an aging male, with so far (knock on wood) low cholesteral, I'm glad to have a medical excuse for using an extra shake of sale
Every single doctor I've ever seen about my Ulcerative Colitis and now my illeostomy has asked me "so, who else in your family has it?". As far as I know I'm the only person in my family that has any form of IBD. However, the fact that doctors keep asking me this makes me think that it's genetic in some way. I want kids so badly but I am genuinely terrified that I will pass this disease onto them and I don't think I could live with myself if I did.
My granddaughter FaceTimed me during the live chat so I missed most of it...so sorry 😞
I'm curious if there's any research being done to reverse cases of ostomy like yours, so patients can live a normal life with a more standard body arrangement? In short, is there any prospect that in the (near, distant) future you and people like you will be able to get rid of ostomy bags for good?
She doesn't have a colon or rectum anymore, so reversal will not be possible. Or do you have like an experimental kind of way in mind? Ostomies are reversed pretty often, they don't necessarily are forever depending on the condition.
@@CocoLicious I'm talking experimental treatments, being researched, not necessarily even in the testing phase. The distant, on the horizon, kind of treatment.
QUESTION ( might be strange) but...instead of a bag is there any way to like "plug" the opening of the intestine or stoma? ....and just like every few hours take the plug type thing out and release the contents in the intestine into like the toilet? or something? might be a weird question....but i cant imagine an ostomy bag is the ONLY option for a stoma? does the bag keep it from drying out?...oh and in the shower does soap and stuff irritate it ? im sure it probably COULD if ur not being careful right?.... thanks in advance
No questions are dumb! I know there are things like ‘ostomy tampon’ type things that have something like a tampon attached to a adhesive circle (like what attaches a regular stoma bag to the skin), I saw a girl comment on one of Hannah Wittons vids about it saying she uses it at the beach but they only seemed available in Europe? Not too sure! I think the reason a bag is so ‘ideal’ for a stoma is because the stoma is then free to do what it wants, perhaps using things like those tampon contraptions can cause blockages (I haven’t done much research into them so not positive!). I think a stoma bag is regarded as the safest and most ‘convenient’ option for ostomies, but obviously whether you feel it’s convenient varies person to person. In regards to your stoma drying out, the small intestine (which is what my stoma is, an ileostomy), is muscle and membrane and feels much like the inside of your cheek, and it doesn’t dry out, it kind of creates its own lubricant to help waste pass along - at least that’s what it seems like!
One option that is not available to everyone is a jpouch where instead of an ostomy they make a pouch with the small intestine and attach that to anus you go to bathroom normaly not all patients can even have this so an ostomy is the only option.
I was diagnosed with colon cancer in Oct and have a total colectomy on Monday the 23rd I'll have an ilieostomy then I'll get jpouch. 3 surgury total
@@brandonshaw7619 yes! Very true, sorry I was only thinking about options for containing or dealing with output from a stoma! I don’t have the option for the j pouch due to severe UC but it is a widely available and opted for surgery.
@@ffionde9007 thanks! and yeah after i typed it right around the time u commented i was like "i shouldnt put the word dumb in there..." so i edited it. thanks. and ur right. there isnt any dumb questions. ur only dumb if u dont ask questions cuz how else do we learn shit, right?
@@mrs_pinkmist exactly! It’s always great to ask & learn new stuff!
This is probably a stupid question, but if the intestines have no nerves or feeling, then how do people feel cramps when they have intestinal problems?
can you hear when liquid comes out of the stoma?
It can! Mine makes a bit of noise which i easily muffle by covering the stoma with my hand
I have a question. Are you restricted on your diet at all