Do I Regret Ostomy Surgery & Colectomy? | Let's Talk IBD

I have been asked this quite a bit recently: do you regret having the proctocolectomy surgery and making your ostomy permanent? I answer these tough questions in this video.
During this unusual time in the world, more so than ever do some need help. BetterHelp, who sponsors me, can connect you with a licensed therapist! BetterHelp.com/LetsTalkIBD
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[@mariemarieb3250]

My daughter struggled 8 long years with severe UC. She decided to have her colon taken out. A j-pouch was done. She has had an illeostomy since January. Best thing EVER. She’s scheduled in 2 weeks for takedown surgery. Hopefully this will go just as smooth for her. She finally has her life back at 22yrs old

[@BethanyMarie]

Marie MarieB i had the jpouch created and a takedown a year ago today. i am so glad i did it.

[@mariemarieb3250]

Bethany Marie My daughter is really looking forward to this final surgery. She’s had the lieostomy since January. Thank God she went before COVID started!. Her second surgery was cancelled because of COVID but is now going to be on the 15th of this month. I’m hoping she will have a good recovery.

[@peachxtaehyung]

Good luck!!

[@sandrarowlands4566]

Thanks Maggie, you've made my choice so much easier. You're a huge inspiration for those of us who spend a lot of time in the bathroom and in pain. I love who you are

[@sheilareynolds3755]

you have such a good attitude for being so ill. I have chronic muscular skeletal/fibromyalgia for many y is years along with hypothyroid and nervous system disorders. It ca n be really hard to maintain a good attitude, God bless you!

[@loriurl3106]

I am so sorry for your loss. Just so you know......you have been a HUGE inspiration to me. You are an amazingly strong young lady !

[@jeffwombold9167]

I just wanted to thank you Maggie for your ability to make open discussions with your personal situation which has undoubtedly helped many people through such a taboo(ish) subject. I don't have chrones' disease, but I did have an emergency colostomy for a ruptured diverticulitis about two and a half years ago. I found your site around that time and have been following you off and on ever since. You gave pointers all about dealing with colostomy issues which is not necessarily a dinner table subject, but you also helped inspire me (and many others I'd imagine), not to be as apprehensive about it as it is commonly portrayed. I was lucky enough to be able to have things put back together, but it isn't quite exactly the same as it used to be, and some of your insight gave me confidence to do what needed to be done. I still have some weird issues that do sometimes get in the way of my social life, such as a severe case of alopecia areata, which seems minor until you try to look good out in public, (my hair slowly migrates in large patches, strange) but I don't try too hard to hide it. People either like me or not. BTW tell Zach I'm jealous. You guys keep it up, I'll pray your health keeps improving, and thanks again...😊

[@lillinsey100]

i love your earrings! also,; your positivity and encouragement is so refreshing. continue to keep your head up girl,; you’re inspiring more than you know.

[@vikingrhr]

You are an inspiration!! You have had such a hard time in your young life and you still come out of it as an extremely bubbly and likable young woman. I know there must be low times but you seem to face them gallantly and always seem to come out of them smiling. I have no doubt that Zak is a great support to you in those times and he is to be commended for that, he's a keeper to be sure, and Zak, she's a keeper too. You'd have to look far and wide to find a better partner. In some of your videos you are putting on a brave face (including this one) but I can see that you are having to push yourself, you seem to have lost weight and you are not looking as well as you look in some of the other videos. I REALLY hope that things will soon get better for you, you really deserve it. I wish there was something I could do to make things better for you.

[@randycabeen1180]

I am much older than you are and I have had an ileostomy and I have a deformed ureter since birth. My UC started as part of a diagnosis with Primary sclerosing cholangitis (PSC) and it went cancerous last year. I am also having trouble with the kidney associated with my ureter and it has had a cist for over 10 years now and to top it off I have been diabetic for over 20 years. Now that I have done my share of whining, I must say that you and your videos have been an inspiration for me. To see someone face all your issues with such bravery and using your experiences to help others is astounding to me. I am now 61 and you have definitively taught this old dog some new tricks and have helped me keep fighting. Keep up the good work and never underestimate the amount of good you have done for so many people, including me.

[@vancekershaw6876]

Maggie i hope you feel better soon and my heart goes to you and all those who are going through this painful time and thank for the educational videos best wishes to you

[@maryloyer4835]

I'm glad you are finally feeling better. I'm also very sorry for your loss Maggie, I must say I'm interested in the fact you said he had an intestinal transplant? I didn't even know that was possible, I'm going to definitely pass that along to my cousin who has crohns and has had several surgeries and a couple of resections. This covid19 is rough on her as she takes humaira and it decreases her immune system. She also works in health care, mostly with the elderly. Thanks for being you and sharing your story with all of us and letting us get educated from you.

[@tammiesheesley2045]

Maggie, your amazing! Your so honest and informative and so uplifting at the same time! Thank you for your videos!🤗

[@eevee8861]

I really appreciate your videos and I really hope that I can get to this point too. I was diagnosed Aug 2019 and was always told surgery was a way off possibility and if I was to get it they'd take my large bowel out and hook up the small bowel. Got admitted to hospital on the Monday for an uncontrolled flare, Friday suddenly it was you're getting an ileostomy and it's probably permanent. I was told could say no, but really it wasn't a choice because I'd just deteriorate to the point where they'd do it anyway, and everyone knew that. The bag is fine, that's whatever, but the way it all happened and the recovery have me feeling really crap about it all. Mind you, it's only been 3 weeks. We'll see. Thankyou for what you do, sometimes I come and watch just to help me feel better.

[@kimnixon4969]

Your such a beautiful woman inside and out! I really enjoy watching videos as your always so positive. Keep shining! Hope you feel better soon.

[@Lailalar]

This is the third video I watch 😃 U inspire me to do better 😚 I was diagnosed with Crohn’s disease December 2019 🙂 it took them years to find out which sucked 🤦🏼‍♀️ and it feels like a big struggle for me but at end of the day seeing ur videos changed so much of my negative 👎🏻 thinking Thank you & your amazing 😘🌹🙏

[@kathyking2515]

Hope you're feeling better after a few months of recovery. I know it's a lot to deal with, but you can do it!!

[@ItsKhur]

Damn Ive seen couple of ur vids and me myself having Crohn’s and an ileostomy I can honestly relate to you. I think the one thing that sucks about having either of them is that no one else truly understands the pain and challenges we have to go through in our daily lives in order for our body to function and remain healthy. Keep up the quality vids :)

[@allexx123]

I know a man who had a poop bag back in the 1960's and 1970's, and he would smell like poop all the time as his bag would need to be opened to get the gas out all the time. And during the night if he did not get up it would explode. I would rather die or wear a diaper than have that surgery. You're only 27 years old, you have a very long time to deal with this . Glad i do not have crones.

[@SQUEAKS818]

Hiiiiiiii Maggie.....Thank You for your honesty in your videos....each time I start to get nervous about my upcoming Ileostomy Surgery...one of your videos surface and I cannot tell you how at ease you make me feel with your Honesty and Information on your experiences...😀😀😀😀😀😀....the 16th is approaching a lot quicker than I want..😫😫😫😫😱😱😱😱😱🙈🙈🙈🙈...deep down inside I know I’m doing the RIGHT THING by having my surgery but I’m still AFRAID 😢😢😢😢😢😢😢.......Best Wishes on your health and the barn......

[@meganyates6701]

I had my permanent ileostomy surgery almost a year ago and I would never go back. I, like you have crohns disease, never reached remission, and spent most of my days in the bathroom. Flashforward to this year, I'm more active than I've ever been. I do still have bad days but much less! You've been a big inspiration to me and it's always nice seeing another fellow crohnie talk about how this disease has ups and downs. Again thank you for making these videos!

[@keithv3767]

I have never talked to anyone who regrets getting a proctelectomy and illeostemy after years of crohn’s disease. My only regret with my own surgery is that I did not get it 5 or 6 years ago when my doctor first mentioned it as a possibility. Crohn’s is difficult and a lot of the pain and embarrassment goes away after the surgery. I had mine two years ago and I had them both together, which took some extra recovery but turned out fine. Anyone who is considering this surgery should know it does make life easier.

[@sarahmorley1031]

You're looking so well Maggie, your skin looks so good and glowing. Keep getting better girl. I'm looking forward to hearing the podcast xx

[@jocelynvandyke4209]

this has made feel better about tomorrow i find when i go for my colectomy surgery thank you

[@vancekershaw6876]

Maggie thank you for the information you provid and I hope you feel better soon and all goes well with you and you are a inspiration to me and everyone else even though I don't have chrones disease i just want to say thank you best wishes to you 😊

[@life60plus]

Music soothes the soul! So sorry for your loss. The barn is looking good.. love the four legged kiddos..great videos Maggie and Zak..stay blessed.

[@patriciaconstantino4669]

So sorry to hear of your loss Maggie. My deepest sympathy to you 💜😥 You have inspired me so very much! I may be facing surgery # 5... if I decide to try reversal surgery one more time. I get stubborn strictures and a lot of scar tissue which requires my colon to heal by surgeon doing temp ileostomy.. I’m really wearing down both mentally and physically from these surgeries .. my reversal had caused a lot of severe cramping until my bowel decided to wake up about 8 days after surgery .. within 14 months of reversal I developed another stricture .. dilation became too risky so GI doctor recommended I have stricture surgically removed...surgeon never anticipated so much scar tissue as well as stricture.... now I’m back to ileostomy and not sure if I want to go through another surgery.. although I developed a bulging near ostomy site which may be hernia ... I’m so truly confused at this point... A part of me would love to try for successful reversal one more time... the other part of me is just so tired out and very anxious about another surgery.. so sorry this is so long.. You look great Maggie and if I had 1/4 of your attitude I’d be much better off👍👍💗💗 Love all your videos!!

[@danidthesupersupporter]

So sorry for the loss of your friend . It is so hard lose someone close to you. My cousin unexpectedly died from a seizure last June at the age of 26 going to be 27 In August.

[@marcosmagic1983]

Anyhoooooo ! 🤣 keep up the great vids watched for years & as always clear with sound advice , I’m still walking tall after 11 years with severe Crohns like your self always have kidney issues, but anyhooo keep those vidz rolling bcoz there will always be sufferers needing help that are listening. Condolences for your friend 🙏🏻 May he rest in peace and never need to rush to a toilet heaven .

[@LetsTalkIBD]

Hahahaha I may say that a little too much 🤣 anywhoooo thanks for watching for so long! ♡

[@patriciaconstantino4669]

Yes!! I saw you on Mary and Peter’s Q & A.. I love Peter and Mary.. as you are too .. they have great, positive attitudes and so inspirational. I so appreciate all of you sharing your stories as it is so very helpful... and helps your viewers feel not so alone. 💜💜💜💜💜👍👍👍👍😊😊😊

[@debraarnold3703]

We can't regret doing what saves us. Brave girl

[@cindy5995]

Your house and land is amazing! Sending love from Florida 🌴

[@carlalehman5139]

I am sorry for the loss of your friend.🙏🏻❤️

[@melissa-Ann]

👋Hi Maggie! Loved the video. Missed the live video. 😐 Barn is looking great!! 👍 Aww, your pups are super cuties!!! lol, when your one pup brought back a different toy had me laughing. Guess theirs a secret stash of toys waiting to be found! 😂 Just be careful when mowing the lawn!! Yikes! 😳

[@sarahbelmonte8888]

Maggie I wish I could be live when you post but sadly I in Australia. I really enjoy your channel, something I’d like to do but I have head symptoms from a very complicated medical life that just stops it from being possible right now. But you show so much of me in how you tackle everything I feel comforted your helping those on the osteomyelitis part of our shared journey 💜☺️

[@brandonshaw7619]

Thank you for what you do you don't have to but your sweet self does THANKYOU THANKYOU THANKYOU Hero is too small a word

[@nancystewart2063]

I love the Frey Life!! Mary and Peter are awesome. I lost a a friend many years ago to CF. Mary reminds me a lot of her. Mary is always so up beat even when she's not feeling well. I'm so happy Trikafta has helped her so much.

[@elainehardy3502]

Yes, I seen you on the Frey Life. I'm so sorry for your friend loss. You will be the most beautiful bride in your gorgeous barn.

[@bonniecorsalini6793]

Doeeeprdfogp

[@rebeccahetrick6576]

Those earrings are cute! They remind me of the ones that Alex made for Nikki in Orange is the New Black.

[@flowerbombh4326]

Good luck with the podcast 🥰

[@flowerbombh4326]

Do you have a link to your podcast?

[@jonkicker1278]

I do follow the Fry Life. They are awesome. I like theirs almost as much as you channel. I am so sorry to hear about you friend and bossm

[@annegreenwood3624]

lv your earrings you look so pretty yes it’s hard having bowel disease some days great some not lv the frey life today i turned on my music,i write your amazing and inspire so many brightens my day another great video sorry for the loss of your friend he was great in ted talks

What you have told us has been very helpful to many I'm sure and very private. A question to you or an opinion from you, should the medical professions be more up front in the beginning in your case. Is there more that the patient should now up front. By the way I don't think Zak has been given the credit he is due from the public. He is a true mate that you can be very proud of.

[@nancyhafler694]

You must tell us we’re your place is because I live close and that would be a lovely place to get married I can’t wait to it’s done keep doing what your doing I keep trying to tell young people live goes on even tho you have a disease you don’t let it rule your life and thats why I like watching you don’t let it rule your world and that’s awesome!!!!

[@LetsTalkIBD]

Aww thank you! ♡ here's our website: trettonfarmstead.com

[@stephisturn]

Hey Maggie, I know that this video is a bit older but maybe you could still answer. How often a day did you have to go to the bathroom although you had an ostomy? I would really appreciate an answer. Thank you so much for your videos. They help a lot.

[@sgough83]

I love that you call your dog potato lol

[@alisoncaronflyingfree]

I am so sorry about your loss Maggie. Please accept my sincere condolences.

[@elceelcevet6998]

Physical defect does not deface the soul. But beauty of the soul decorates body. L.A. Seneca🙂

[@christinadoherty3212]

Hang in there love! Be patient with yourself, a loss like that comes in waves. I'm sorry to have never known him he sounds like an amazing man and advocate!

[@LetsTalkIBD]

Thanks so much!! ♡

[@kellybiedekapp5500]

So I’m having a colectomy June 26 And it’s due to diverticulitis and constricted colon etc. the doctor said that in my situation it’s more than likely I will need an ostomy so I am trying to learn as much as possible about everything… needless to say I’ve watched most of your videos and I’m so sorry to hear about your friend/boss who passed away😢 My question is, what would you recommend for my “first“ bag/flange etc Im meeting with ostomy team this Friday and I want to go in super prepared...Also I’ll have it for the start of school in September… And I am a kindergarten teacher so any recommendations on anything that would help me Would be super…And do you have any good questions that I should ask them and for my color recital doctor… My ostomy is only supposed to be temporary for two or three months thank you…you’re such an inspiration and actually close to my oldest sons age who’s in nursing school...

[@LetsTalkIBD]

Thank you ♡ I would recommend the Hollister New Image line or the Coloplast Sensura Mio line. It totally depends on your body type as well! A stoma nurse will most likely mark where your stoma should be placed, and where it is will help you decide what type of bag to use. Both lines brands mentioned above have many options. If the area where your stoma is is flat, a 2 piece will usually work fine. If it is not even, sometimes a once piece is a little more flexible. Also, because you are a kindergarten teacher, a protective belt like Stomaplex's belt may be good! I was a peds nurse and could have used it on a couple occasions with some feisty kiddos 😂

[@karbear26]

I’ve watched the Frey life for years! My husbands bro has crohnes and so does their cousin!

[@rebeccaclavette2329]

That’s funny I thought you knew what they’re answer was to your question before your last video! lol

[@maryalice8507]

Maggie did you look into cage elevators ? They usually only hold one peron in a wheel chair or 2 seniors. I haven’t seen them inside but i’ve seen them in outdoor parks that have stairs. I think they are described as more of a lift then elevator and can start as low as 1,500 dollars. I don’t know what installation would cost.

[@LetsTalkIBD]

We did - the cost was $100,000 which unfortunately we cannot afford

[@maryalice8507]

Wow, sorry to hear that i thought they were a lot cheaper than regular elevators and it would have been nice because they take up less space.

[@Naomi-wm3ft]

Your amazing

[@sidessherri]

So beautiful where you live❣️

[@andyfield6854]

I have uc,i have tremendous sympathy for crohns sufferers.

[@ohrabbits]

What delicious looking earrings!

[@nabywanieks]

Great question. Everyday for me right now. So sorry to hear about your friend.

[@brodieroomojo]

i have kidney stones....a lot, i feel your pain its hoorid, i also have ibs....makes me wonder if their is a connection?

[@jbender1024]

what was the type of pillow you got ? Would like to get one for my wife.

[@rachelldelarosa9684]

Hi maam my father also have the same colostomy can i ask you where can i buy all the things you are using in you colostomy including the bags please

[@melissamartin3284]

New here....Greetings from Ont,Canada :) Sorry too hear about your friend ..

[@ohrabbits]

So sorry about your boss.

[@chrisbysize]

3:05 masking the e-mail address in the browser bookmark would be advisable.

[@LetsTalkIBD]

Email is actually no longer working, don't worry

[@annebayliss9886]

Watched some of your videos lately , very entertaining and educational, I read a news story today about a 30 yr old man whose only choice to live longer was to have a stoma, he has declined the offer and said he does not want to live like that. Having to wake up every dam morning to this terrible disease and fight it to get through the day, I don’t know how you manage, pray that one day things will be easier for you

[@LetsTalkIBD]

Thanks! I did see that article - it is devastating. While there are moments of hell, I've tried to find any positive light in having this and the biggest source of happiness is the people I have met because of it! I am hoping he finds peace

[@annebayliss9886]

Yeah , I really hope he does, what ever that may be

[@juilacaldwell7308]

What kind of a pouch cover do you wear when you are wearing jeans, is it a pouch bag cover, a girdle or underwear

[@LetsTalkIBD]

I don't actually wear any with jeans as my stoma is high up so jeans don't reach it! I like wearing wraps sometimes though, especially when leaving the house!

[@tamarak9393]

Your dogs are just beautiful. What kind of dogs are they? If I’m having a really bad day my fur babies are so very helpful. They know when I’m having a bad day. Right now I’m having more bad days than good. Waiting for surgery because it was canceled because of Covid. I’ve developed a large hernia around my stoma that is very painful. Watching your videos really help me so thank you for that. 💕

[@LetsTalkIBD]

We have a lab/pit mix, a Sheppard/lab mix, a stafforshire terrier, and a hound/beagle mix!

[@anikabaddeleyrollingbackwa7341]

Thanks for considering adaptions

[@nabywanieks]

Amazing as usual. Thanks Maggie. And Zak!!

[@jackiebull2866]

You and zac are great I'm an older crohns sufferer I'm down in a flare but are your plans still moving forward to get married in October

[@marymiletta7656]

Me encanta el lugar y ni hablar de las mascotas

[@marymiletta7656]

Me encanta tu caracter y optimismo vas a tener mucha suerte en la vida

[@clairevero]

I do not know how anyone can live with a life long stoma. I had mine for seven months and was suicidal most of the time, the only thing that kept me going was knowing the plan was to remove it.

[@LetsTalkIBD]

I'm sorry you had that experience. Here we share the positives to encourage people who may have to have this forever.

[@clairevero]

@@LetsTalkIBD I have the utmost respect for people like you who live the rest of their life with a stoma, your a much better person than I am.

[@randommess6667]

@@clairevero Its sucky but theres worse things in life

[@tammypatten5138]

My son went septic in 2011 and passed away. 😟

[@nomorenarcz]

I can hardly imagine how devastating that must be. Wishing you strength and peace xox

[@nabywanieks]

I'm late dangit. Love the hoops! You look great. You make feeling like crap look great!!

[@melaniemckown]

I follow The Frey Life to!

[@kathynewey6513]

I love my music ..

[@ILOVEMEW10]

You are so inspirational sweetheart. Beautiful girlxx❤️

[@nabywanieks]

Music heals the soul, the mind, the heart and the body.

[@karendeakin9628]

I saw you I was saying to Mary it was lovely to see you 😊

[@shalemarie]

Look up valley cushion it’s amazing. Thank you I’m having a nightmare. 💖

[@larryborses8670]

Perhaps a less expensive solution for access to the upper floor is to move some dirt (lots of it ) to create a very long, wide, not very steep earthen walkway (temporarily) then when you have the money you could have it paved, install scrap-yard old fashioned street lights and railings or fence (to keep people from falling off) and even create wrought-iron arches to fit the occasion) The concept would be somewhat like what the Romans built at the siege of Masada (except they used torches for illumination and cheap labor (unwilling workers)... not a good idea today. it might just suit your needs. I also have developed occasional pain in my right kidney area starting at the right side of my ribs... which comes and goes.. test etc never find anything. Anyway from and old Ken butt (14 years) to a Barbie.. hope you feel less pain and are able to enjoy life even more.

[@LetsTalkIBD]

Thats very close to what we are doing! We are planning a winding pathway that is graded to ADA-required levels with railings! Thanks!!

[@alisoncaronflyingfree]

You are in their video. I saw it. I've been following them for some time now.

[@LINKINservicedog]

I’m working on a channel for those who struggle with chronic illness if u r interested. I have gastroperesis and my GJ button became infected so I’ve had a NG tube for 7 weeks until I’m clear for them to put a new one in. I thought a group would help others as well as myself. What are u doing with your barn? Cuz I’m brand new to your channel.

[@DavidMcgee957]

I understand sometimes it’s hard but I have had my ilostomy for 4 years now. It’s always hard in the being after surgery

[@theexoticalaspielady]

❤️🙏🏽

[@sarahohara4022]

And now I know how much an at home elevator costs

[@lcarliner]

When the question concerning an elevator for the wedding venue came up. It reminded me of a wedding venue near Spring Hill, Florida in which the much vilified then Catherine Harris, Secretary of State and elections, made her grand entrance by descending on the brides elevator, dressed in her characteristic blue outfit for attendance at a Republican fundraising party. Depending on your future clientele, it could also be a chargeable ceremonial item! The name of the business is The Palace Grand.

[@montheramier1556]

Emma strone 😅

[@remahreid8431]

I take sodium bicarbonate tablets would that not help ? It would be a lot nicer to take. Just a thought. Blessings

[@LetsTalkIBD]

I'll have to look into! Thanks for recommending!

[@remahreid8431]

It was my gastroenterologist suggested that I take them as I am always low on sodium and magnesium. I am on subcutaneous fluids of sodium and magnesium, but I needed extra sodium. They are a great help for Crohn's disease and intestinal failure which I have . I pray that your kidney picks up as I know kidney pain is absolutely horrendous when it starts. Maggie I wish you all the best in life and Zak too you are a great blessing to us all

[@lilred9483]

I know Mary listens to praise music to lift her up and I do too :)

[@jaysalazar1207]

I would ask your doctor whose taking care of your kidney issues if a diuretic could be helpful. Sometimes when your body isn’t regulating how much water it’s holding onto a diuretic can actually be helpful.

[@LetsTalkIBD]

That'll unfortunately push me further into dehydration. Having an ostomy I have to take in electrolytes to help me absorb fluid since I don't have a colon to do that for me :/ wish there was an easy answer!

[@jaysalazar1207]

LetsTalkIBD oh right, I’d honestly forgotten that part of not having a colon, I’m sorry. Thanks for replying back and explaining though. 😊

[@LetsTalkIBD]

Only disadvantage on not having a colon 🤣 no problem! Thanks for helping troubleshoot for me!!

[@coxievictor]

I had a surgery in1988 and I had my ass stacked up. I had all the operation in one go. I still do not like it but I live with it.

[@naiman3619]

🇩🇿😍🌹