What It Feels Like to Have an Ostomy
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- เผยแพร่เมื่อ 4 ต.ค. 2024
- Every wonder what it feels like to have a stoma? If an ostomy may be in your future or you know someone with an ostomy, take a look at this video! I give you the details about what is physically feels like to have intestine hanging out of you all day! (I'm just a little too blunt, huh?) :D
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Getting an ileostomy tomorrow. Very nervous but your videos are helping a lot.
We have nerves that sense the intestine expanding, but not with stretching. So, gas, inflammation, infection that expands the intestine hurts. A gastroenterologist explained it to me that way. Why appendicitis is painful, too.
Thank you for clarifying that! That is why there is so much pain with obstructions then!
I've had an ileostomy for 45 years. When my stoma is making noise and there are people around...I just say, oh, my tummy ' s growling! And leave it at that.
what kind of noise does it make? its all very interesting to me, but i dont have one so some of the things she describes I have a hard time understanding. It doesnt sound like a fart does it?
No sounds like a belly growl or like a rumble really
Hopefully in response to your unanswered question "Why pain with Crohn's even though intenstines has no nerves?"
I have found that it is the ulcerations that cause the pain to expand out of the intestines and into the nerve endings in other parts of the body. If you have been unfortunate to get a fistula, then that spreads out into the healthy tissues and is similar in pain.
I really like this video have shared it!
I've just started a series of episodes for the 5 best videos and hope it can help to promote this video even more!
I want to thank you for your time and logic about something that will be a part of my life tomorrow morning. Your videos have helped ease my mind in a way I consider you God sent. Thank you 😊
I have had my bag for 27 years and I'm 27 so yeah my whole life and I like to say I'm an expert at hiding that I have my bag with covering so you can't here it and everything like that
That is awesome!!
When my bag begins to leak in the night I have dreams about leaky boats, the ocean or even just dreams that I'm having a leak. I used to feel confused when the dreams woke me up but now I know exactly what to do 😂
Hi Maggie! It was so informative and you make ostomy less scary :)
Thank you :D
You are easily my favourite IBD youtuber
Maggie, your videos are so helpful! I'm having surgery in June. I'll have a ton of questions but knowing there are ostomates out there will be a huge help!
it is crazy that there aren’t nerve endings in the intestines... because i have ulcers in my stomach and throughout my intestines and i can sure feel them... it makes you wonder...
Hi. I too are aware of waking instantly when and if I get a leak. Recently I've been getting a lot of gas which was due to eating veggies,
Which had me up 4 or 5 times in the night ,and waking to a large balloon size bag And so holding my bag so carefully for it not to go
With a bang lol and come off .
Like you I don't feel my stoma but I do feel befor it's about to work . I usually lay on my right side where my stoma is ,but I wake up on my back , unconsciously I think I tend to know my bag must be getting full it's like being on auto pilot .😊 xx
Great video. I can identify with most of what you say. I fully get it when you say you are really aware, and really unaware, of your stoma - it is rather weird, isn’t it! I have a parastomal hernia (been repaired twice, awaiting possible further surgery) and wear support garments which also really help to support a full bag, and I’m only aware that it’s full because of the bulge on my abdomen! I feel it a lot in the morning first thing and support the bag on the way to the bathroom. I can feel the output coming out especially if I haven’t chewed my food as well as I should, and sometimes it hurts a bit, and I also get mild pain (like an ache mostly) from the hernia. My stoma is mostly very quiet, although it was much noisier when I first had it. I’ve had it 4 1/2 years (ulcerative colitis for many years, followed by colon cancer in 2015). I have had one obstruction, caused by the hernia when it first appeared, and this put me in hospital, very poorly, and emergency surgery to repair the hernia. I know the early signs of a leak (itching, burning) and always manage to deal with any skin irritation early, so no problems there. You do get used to dealing with a stoma as time goes on, and it just becomes a way of life and no big deal. I am much better since my surgery so I am glad of it on balance, and wouldn’t have a reversal, even if it was possible. Thanks for your great videos - very informative, and upbeat too - must be very encouraging for new ostomates or people approaching surgery.
Maggie, you are soooo inspirational. I have had my Ileyostomy for 6 years. I have severe digestion disease and Ulcerative Colitis. I have seen nearly all of your videos in 2 days. To me, however, I can sense my stoma especially when it is moving. I too, have had huge intestinal spasms, so I know how you feel! I think it is GREAT you are a nurse and can relate to others who face getting a stoma, or just started. I have had 2 blockages in my 6 years as a stoma patient and I know how awful it is! Like you tho, I have been able to stay out of the hospital for them. I think you are incredibly inspirational. I hold my stomach too throughout the day when the stoma wants to make noise. I also have a habit of holding my bag at times. Anyways.. I wanted to add you on instagram but do not know your name for it. Mine is @kellycountry2002 if you ever want to chat. God bless.
i have ibs for years and as weird as it is i wish i could meet a girl like u. It would be so comforting to know that ur gf knows how you feel.
I’ve had mine 2 months and it fells like a vacuum cleaner stuck to my gut,... even worse as it fills up. Not sure what I am doing wrong or if it’s normal. My bag nurses were a joke and they did nothing to help. They couldn’t get bags to seal and had leaks from the first bag they put on me after surgery. It took me one time to figure out how to do it correctly. They were pros!?? Still learning but have issues while being active and mostly bending over the bottom come loose every time. Also I can’t seem to shave the area good enough and always have hairs pulling under the seal that gets annoying fast. The nurses told me to not use the supplied powder due to it making the bag not adhere well so I haven’t but think it’ll help the skin closest to the stoma. It’s a tough adjustment but getting better with time.
Sounds like you are doing well. So happy for you.
I had one from Aug 2014 until Feb 2015. At first it felt weird and and I got used to it. The thing that I always thought was gross was being able to see yourself expel feces from your body. I had a hard time changing my bag because of the smell, but I got used to it. I was so happy when it got taken down.
I go through these sensations and understand what you are trying to explain.
If you were to get pregnant, would that affect your stoma or ostomy at all? I know pregnancy causes a lot of organs to shift around
BeautyWearsBoots I wondered that too. Turns out you generally can have a baby without any trouble. One lady said it was so much easier than her pre ostomy pregnancy as she felt better and was in better health. Good to know when so many young people are needing this.
I had my second child after my ileostomy. It didn't seem any different than the first one other than my bag stuck out a little further!!!
I literally understood every thing you said because I have an ileostomy. And I always push my stool down from the wafer part to the bottom of the bag because if I leave it to long I tend to get leaks under my wafer
Does anyone else with Crohn's have almost constant, debilitating nausea? If so, have you found anything that helps? Thanks for this video. It was super informative!
Ashley Jeanette The only thing that helps me is Ondansetron (Zofran) 8mg dissolvable tablet under the tongue! I take 3 per day.
Marijuana oil and I am not talking cbd without the thc either is the utmost but not legal only acceptable in some states . It works but politics dont let this become available to people in need and its such a shame .
Interesting video Maggie in response to your questions the only time i notice my ostomy is when it's working or if my bag needs emptying and when it's making noises other times I don't think of her to much as I like to try to go about my day to day duties as normal. thanks for the video loved it.
I just got diagnosed with Crohns at the start of the year, had colonoscopy and they noticed that i had inflammation, had ct scan also which showed thickening in my terminal Ileum, been in agony most days there for 20months...they put me on budesonide 9mg.. It did next to nothing but i have been put on Prednisolone 40mg reducing by 5mg a week to 0mg. Really hope it works as the pain has been unbelievable having to use hairdryer on my tummy until it went mottled or be in the bath for most of the day. Hope everyone is coping with their Crohns i realise just how terrible it is. Sending love and hope ❤️
About not having nerves in your intestine, I've wondered. I'm confused about why my diverticulitis hurts so much.
I totally understand, at day and night . I'm the same way. 😊👍👊 I have had the same questions. 👍 🤗
Once while I was cleaning around my stoma in the shower, I nicked my stoma with my fingernail and caused a small abrasion. It hurt like crazy. I have been told there are no nerves also so I was confused as to why that nick hurt so bad.
I remember smashing the marsh mellows when I had my ileostomy! Apparently it was good for slowing the bowel motion. I recall it working well!
Can you change your bag before you go to bed like a tampon to avoid leaks? Or is it just better to wait until it’s full and need to be changed or emptied?
Your so pretty😍😍And I always get asked what that rumbling sound is from my iliostomy bag😁😩And I do the lying my weight on the bed aswell😂😝❤
I like to make jokes like "Man I must be REALLY hungry!" If the person doesn't know about my bag :) Glad I'm not the only one! The funny things we do to adapt
Isn't the greatest feeling when you can get in the shower and clean your stoma and then get a new wafer and bag on? Weird how your life changes and something like a new wafer makes you feel good
Micki omg yes!!! I’ve had my ostomy a year and a half and that’s literally the best feeling EVER! Lol
I needed to see this video
Amazing maggie God bless you AMIN ♥️
Pelvic scarring causes pain
I had surgery for a bad bladder. I had to get a bag for my urinating. I’m not sure what it is called. My small intestine is what I have to pee with now
Do you have to empty your bag at night?
This is a very random question but having a ostomy you can still have children right
Will I ever be able to sleep on my stomach because that's how I prefer to sleep. I can't because I just had surgery and got an ostomy bag but eventually I would like to sleep on my stomach again.
Should u investigate your output while it's in the bag?
Do you work?
Im due for surgery in 1 and a half weeks
Do you lose a lot weight I lose weight all time I weight 81 pounds can’t gained weight it go right though me
Is your stoma permanent or temporary?
How long do your're bags last ?
I'm having surgery soon for an Ostomy, trying to stay strong. What if I want to work out with an Ostomy? A year after surgery how do you know what may cause you harm?
Regret Solo good luck with your ostomy surgery hope all goes well for you.
I had my surgery August 9th and am just getting back into weight lifting. It's vital to go low and slow to not risk prolapsing, hernias, etc. My boyfriend has had an ileo for 10 years and not much holds him back (he had UC). It also depends on why you had the surgery.... For me, I have a connective tissue disorder (eds), so I have to be extra careful to not prolapse (I've prolapsed 3 times in the last 1.5 weeks).
Be careful with abdominal work, but also don't shy away from it, for a strong core will also help prevent injuries. Maybe see if you can get an order for physical therapy post-op... That might be a great way to help ease u back into exercise.
Good luck with surgery! 🤗
You are so cute!!
What happens with your stoma if you happen to get a stomach virus...if you know what I mean. 😬
thebigfatwhitecat just the same as any other person who get stomach bugs only instead of running to the toilet it goes straight into the bag which is cool as it's not going to go all over the floor or toilet seat. That's how it is for me. I can't say if it's the same for everyone with a bag it maybe different. Hope this helps you. 💩😀😀☺
Thank you for your reply! :-)
It's a nice girl, I like you, well done
Hi
Thx
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what's ur sc Maggie
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what's ur sc