Why I Haven't Gotten Rid of My Colon | Let's Talk IBD
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- čas přidán 8. 10. 2018
- A super long vlog of my day in which I answer questions about my pesky colon!
Open for more information...
And as always, find me on...
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Filming Equipment:
Canon EOS M5
Canon Power Shot SX60 HS
Samsung Galaxy S8 Plus
Wondershare Filmora
Thank you so much for your videos. I loved following you around for the day! You are in my prayers for your next Colo and Dilation.
Good luck with the WOCN program. I went through Emory last year. So glad I did it. You will be a wonderful CWOCN! I have referred lots of my patients to your Vlog. So thanks so much for being so open and honest.
Oh btw I have watched your vids for quit some time...thank you for making them and still making them!
Great to see you close up, you give me and I'm sure others hope.
Nice vlog 😊 congrats and good luck on your continuing education. Good nurses make bad days so much better!
You have such a great attitude - very uplifting!
Hope your tummy settled and they get a good look at your next appointment! Food looked awesome but not as awesome as the pupsters 💙❤️xx
I love the Freys and your pups a lot!
I'm working on my WOCN too through Emory University! Congrats! I hope the program is going well. I'm working on Ostomy now.
Yessssss Frey Life merch 🙌🏼💜
I love The Frey Life! Wore that same sweatshirt today.
I am most likely going to have to get a bag before long. My fistulas won't heal...I have lost the first 1/3 of my large intestine already and a few feet of my small....I don't want the bag but I have had active fistulas for about 10 years now..they are a pain in my butt...
your fur babies are beautiful!!!!
i just chanced upon your channel when i was reading about perinitos . i wanted to find out if you have tried natual remedies good for the bowels like garlic, ginger , tumeric and cayenne
Thanks for sharing everything! How do you dry the Basil? Dehydrator or your Air Fryer?
Love Mary and Peter! I believe their shirts come from a company and the other items they ship themselves.
One thing I’ve noticed about IBD videos, we all have adorable pets and talk baby talk to them. :-)
Does ginger help settle your stomach at all? I'm looking into more natural ways to ease my nausea/cramping/spasms... i've been unofficially dx'd with superior mesenteric artery Syndrome, and I know my stomach biopsy came back "red and inflamed". As for my large intestine, well, I don't know what's up with that yet. I also deal with dysphagia. Any tips on settling the digestive system that doesn't involve carbonation, beef, pork, or dairy would be nice😊
I have an ileostomy and haven’t passed any mucus through my colon since I got the stoma, which was 4 years ago. Should I be worried?
I have the Choose Joy shirt from the Frey Life! :)
I recently (5 weeks ago) had some of my colon removed because of diverticulitis that could not be managed. They also ended up doing an emergency hysterectomy in the middle of my colon surgery because my uterus was fused to something. So I have an ostomy bag and I will hopefully be reconnected soon. You were talking about producing mucus. Almost every day my rectum feels like it wants to have a bowel movement (wish I could. Lol). And is seems like a little bit of stuff comes out. Is this the mucus you are talking about? ♥️♥️
I've had my ostomy for 8 years, worried about closure surgery because no one has really told me about the complications, but also worried about not having closure. My worry is the muscus, I still have it (not everyday) and I'd like to not deal with that anymore because sometimes my body wants to push the muscus and I end up with a bit of blood
Hi! Just an ex ostomate who had the WORST ostomy that lived to leak. I was told too skinny and ate away at the flange all the time! This was my second ostomy but playing around with products found Eaken cohesive seals and yaaaay! No more eroded skin so sore!
My ileostomy was an emergency surgery (post IBD resection), so colon removal was not really an option at the time. I waited almost 11 years before getting the colon and rectum removed. I had a lot of ongoing inflamation in the colon along with fistulas for precisely the reasons you noted -- the colon still produces fluid. I actually made the call when my wife and I decided to try for a child. I knew I would be laid up for some time afterward and being out of commission for several weeks with a young child was just not an option. You are right though, it's not a cakewalk. I was surgically opened at both ends and afterward I did not want to be laying on my back or my tummy. The inflamation around the rectum cleared up very quickly afterward.
When one gets a temp colostomy how does the surgeon/doctor determin when it's okay for a reversal? How does that work?
It depends on why you got it in the first place. The two most common reasons for an ostomy are cancer and IBD. With IBD it is based off how bad your active disease is which the time frame can be anywhere from 3 months to a year before they will reverse it and do usually a J pouch surgery. With cancer they have to respect the bowel and wait for it to heal and usually the patient will complete the chemo and other treatments they need before reversal.
I love your shirt
im sorry did you say hawk and fox problem?
mmmmm veggie burgers and brussels sprouts.....I'd love some!
Omg i love Mary and
peter!
Hello from Virginia!! I don’t blame you for not removing your colon. Technology & medicine are changing everyday. No need to remove something unless it’s hurting you to the point of not being able to function. Colon removal should be the last resort in my opinion. You’re just too young!!❤️🙏🏻🙏🏻🙏🏻
I have a quick question. Maggie what do you do with your supplies after you get the reversal surgery? As a nurse I thought you might know
You can donate your extra supplies. My GI doctors office collects extra supplies.
Hi I am Lynda from newzealand great to meet you both and thanks for sharing its great I am an illiostomeyj I will go and listen some more and then I will be intouch agein soon by for now from Lynda and my husband Ron said hi to from Lynda
Wow...mine needs to be extracted every 5 days. It cannot excrete on its own, and I’m too sick to have my colon removed.
Yep are basement looks like that too.
why did u have a stoma? is it permanent ?
My colon finally died 2001 (I was 25) & they said it was Ulceras colitis, but after the third operation, removing the reservoir (if that is what it is called in english), because that part of the ilio also had got sick...they now called it Crohns. No medicine actually worked on me, but around 5 years ago, they offered me Remicade....but at this time I have found out what made my intestinal sick in the first place & changed so much in my life, to stop being sick in there...I told the doctor, I dont want the medicine, I will keep healing my self...I WISH I would have known, what I know today, before they took my whole colon, cause then I could have healed it & not have to live with ostomy for the rest of my life + all the complications that have come from the operations. I say this, just as an option, you may be able to heal your self, before you lose any more
Hi Tina, soo you are getting better without remicade or medicine, what are you doing to achieve this?, if you dont mind i ask, i have crohns any alternative would be greatly appreciated. thanks!
@@johncarson1242 I wish I could give you a link with everything I learned since 2001, it is so much, but if I try to make it short...I have changed the way I live, from what I put in my mouth, let through my ears, through my eyes, what I think, what people I let near me, everything...everything to become more & more healthy, it did not happen over a night. I started to listen to my body, feelings & mind, to check how I was FEELING at all moments of the day & I began to see the connection, when my body got sick, so I stopped those things. With time I got more & more sensitive to my signals, when it was still small signals & changed my life after it, so there was no more bleeding & so on...it´s a life time of change to the better....I hope you get some ide´s & that it helps
@@TinaLindholm Hey Tina i appreciate that you took the time to answer, i see, its great that your method is working congrats, so i guess you did kind of an elimination lifestyle, me i ask, is it your diet plant based or mostly meat or you can balance it?, because i feel better not eating greens specially raw greens make my stomach sooo sick, hope you health, thnks!
@@johncarson1242 It will make me so happy to see more people healing them self. The biggest change is actually, that I started to FEEL my self, getting to understanding the signals from my body, so I could give "them" (the cells) what I "they" need, in any moment. Not really the elimination lifestyle, I was more "asking" my body what it wanted & why it felt bad...The way I eat is shifting, depending on what my body is telling me it needs, but it is never asking for toxic, "dirty food", as I call it. It may want meat sometimes & then I eat it, even though I mostly eat raw fruits, vegetables, nuts & "clean food", cause there you have high vitamins & antioxidants, that heals the cells, you find them in colorful fruits & vegetables. I make drinks, in my super mixer & it makes it so easy for my body get is fast into the blood, that could be a great thing for you, to start with. As times go by, the mind is connection this clean food, with feeling good & you want it more. The other things, that hardly no one talks about, is the MIND, the "software", that is making the intestinal cells aggressive. Last time I met my doctor, some years ago, I asked him, what Remicade is doing. He said: "It´s making your immune system weak, slow, tired, kind of, so it will not attack the intestinal". I said: "I dont think that sounds very smart, since I already lost my whole colon & my immune system is already weak now". I asked him: "Who is telling the cells to be aggressive?" He, said the brain, I said I know, so I will keep changing that & heal my self". Cause I already been doing that for a long time & seen how things where getting better. As I see it, we have bad "software" in our brain, that cause this to happen & it also cause us to "want" bad food, bad things for our self (it´s impossible to talk about this in a short & still fair way) but this is why FEELING your self, in any moment, will lead you into better & better. Cause for some people, it may be the food that is the biggest reason & for others it may be the "software", me I was eating pretty good since before, but my mind was full of self destroying "programs", stressing the cells to death. I know this is a lot, I hope some of it make sense & helps...haha...one day at the time.
@@TinaLindholm wow thats a good answer, yeah its true i guess emotions guide our actions then we get sick, then its an uphill battle, i dont know if the same way of healing is applicable in every case i guess we can generalize some solutions, but i think may be all human bodies are different, because i really cant handle raw vegetable i just can cope with steamed, but this thing you said is soo true we need to feel ourselves thats the answer you nail it, so we know what our souls and bodies tell us, so glad i got your reply and advice, as maggy and you i too want people to be healthy, have a good one Tina, thanks!
Hey, I live in Lansdale! 😊
Laura Elise that's awesome! We are like 40 mins north from it now! :)
LetsTalkIBD That’s so cool! I grew up in Bucks county so I probably know the area 🤗 too funny!
That is my favourite soup 🍜
She froze the soup in clear colostomy bags! How cute.
Alternative video title: When you're trying to tell people about your unusable colon but you see a hawk about massacre your chickens. 🤣
Dry basil in microwave between two pieces of paper towel.
4:31 dont go in there!!
Are you going to have kids in the future? And if you were to get pregnant, would it be a strain on your colon?
Zak's a cutie ;)
Don’t shut him in the basement!!
I want a toilet like that!!!!
I thought you need your colon to absorb nutrients ???
It does a little, but its main job is water absorption. Your small intestine is the one that absorbs most nutrients!
DON'T NEED ZAK!