Choosing Permanent Incontinence? | J-Pouch, BCIR, K-Pouch, & Stomas | Let's Talk IBD

[@randolphnitz4427]

Changing my wife's colostomy and performing wound management was a personal, intimate, act of caring every time to comfort her and reduce the anxiety and panic from her emergency cancer surgery until she entered hospice care. I learned how to care for and truly love somebody.

[@LetsTalkIBD]

Sending lots of love your way! What an incredible thing to do for her to comfort her during that time! ❤

[@Nozzlejockey2]

I too, care for my wife in changing out the entire Ostomy assembly. she can do it her self but feels more comfortable with me doing it. It is an intimate thing to do and I don't mind at all. Its is a way for us to get closer together. we have been married for over 50 years. she had to have her entire colon removed due to C-Diff contracted in the hospital after triple bypass surgery. She contracted every nasty bug a person can get from a hospital setting. Fact she is so lucky to be alive at all with all the infections she got from there. to be far to the Hospital, she was on Immune suppressing drugs from a Kidney transplant twenty years prior. She had three different infections in her blood as well, also pneumonia as well plus total kidney failure, so dialysis had to be started as well. She was in the Hospital for almost 6 months. She has been home now for 10 months and is still recovering. she lost 65#'s a lot of it was just mussel mass. so we need to get her into physical therapy. but struggling with getting that started. But I am so so thankful she is alive and back home with me.

[@wallyfronzaglio372]

I wore a ostamy bag during my cancer treatments and my wife cared for me the same way

[@randinatkowitz2487]

You sound like an incredible husband… Sending hugs your way

[@deborahleighton7639]

Awesome video Maggie. I applaud the husbands and wives who are so supportive. 👍

[@awwgin]

you have single handedly saved me. my 73 year old dad had his bladder removed because of bladder cancer. the dr made it sound like a urostomy was gonna be a walk in the park! we were not educated at all and just believed in him. my dad went to 3 hospitals and 2 nursing care centers in the span of 2 months, after his surgery in march. NO ONE could get a bag to stick. he laid in his own urine pretty much..i was in extreme panic mode. in a fit of desperation i came onto youtube and i found you. i changed his bag. me. all by myself. you made me feel comfortable about the process and you gave me hope. my dad is back home now! sending love and hugs. ❤

[@nancyelizabethbrown-smith9774]

Isn't Maggie the GREATEST! No Dr or Nurse Practictioner prepared me or could answer questions or help me with situations only another "stomate" could relate to!!

[@annedymock2850]

That's huge, and really shows just how much good is coming from Maggie's channel. It is amazing (and rather sad), her channel was able to help more than the medical profession to get your dad's problem under control to have a much better quality of life. I must also congratulate you! I gather you were able to translate aspects of Maggie's advice on intestinal stoma care to urinary stoma care... really amazing as medical professionals were not able to make the same leap. ❤

[@RedRoseSeptember22]

I'm so glad you were able to figure it out!!! Praise God and may He bless you and your father ♥

[@TURTLEORIGINAL]

Hello, I just read your comment. Trust me, you are not along! I’m a 54 year old paraplegic, and I had to have a colostomy permanently put in me do to complications from wounds on my buttocks area. I never got the proper education, as to what ostomy appliance would work best, or stick and not easily leak or pop right off! It really frustrating and humiliating to say the least. I was able to finally find a product that stayed on the best, without having a darn, disgusting mess! For me, I’ve found a brand and product, a two-piece, barrier/bag, that really stays on best. The barrier that sticks directly to the skin on my stomach, and the disposable, 500ml pouch, that had a double circular adhesive ring, that really sticks well to the silicon barrier attached to my stomach. I’ve found that if you are vigilant with cleaning your area first that the appliance stays on much better. If your dad’s skin can handle it, try to use an alcohol cloth or several of those small alcohol prep pads, to wipe lightly around the area you want to stick your product to. Make sure it’s very dry, then apply it and rub on it, back and forth several times. Hold the warmth of your hand on the product once applied. I never had one nurse clean me right after they changed my ostomy, in the early days, so I learned to do it myself, so I am very clean! Hopefully, your dad is able to physically do his own ostomy. Did you ever find a product that works well for your dad?

[@shirleywienand673]

I live in South Africa and when my husband had a stoma not even the stoma sister could make it stick. I met a guy who asked if we’d tried Friars Balsam. It was dirt cheap and was life changing. I could not believe how well it worked. Previously it wouldn’t even stick for 2 hours.

[@tommyron]

You DO NOT talk on too long. Your generosity with your time is immensely helpful to me (63 year old year old Colostomy patient). Do not doubt or question your own throughly winning communication style. It's your strength and I am grateful to you for it EVERY DAY. Thank you, PERIOD.

[@patriciaruth2894]

You don't talk too long! Your community appreciates you Maggie❤❤❤

[@TURTLEORIGINAL]

Darn right!!!❤

[@deborahsimpson2732]

I've said this before but I'm gonna say it again. You encourage and comfort so many people who are going ANY sort of chronic illness. I keep all those who suffer, including y'all, in my prayers.

[@RedRoseSeptember22]

♥

[@missyme2673]

First of all, you are not just a nobody. You don't realise how much you mean to people like me who are in very similar situations as you have been in. You talking so frankly and candidly takes guts (no pun intended! ) it takes a very special kind of person to do what you do. I couldn't talk to anyone for three years after my ileostomy, I found the whole thing so traumatic. You are truly amazing and inspirational, and that's why you'll be celebrating soon when you hit that 100k mark! I've had more useful information from you than any of my Dr's put together. Thank you for being you and doing what you do. You are a true inspiration ❤️

[@thunderrage1]

I understand completely about not having control over your output. I have severe Crohn's and have spent most on 2023 in hospital. I have a fistula that has tunneled into my stomach. So far I have had 7 blood tranfusions, my iron, potassium, vitamin D and magnesium are all low. Sometimes very low. I just started Remicade and it is slowly helping. First stay at hospital, was because of vomiting and as soon as I moved, I would have accidents. Second was because of not being able to control my bowels at all. That ended up being almost a 2 month stay. Third was because the vomiting and diarrhea came back. My GI said that I have the worst case she has ever seen. Good thing is that each time, the symptoms are not as bad. The Remicade is working. YAY! Just had another flare up that lasted a month but no hospital. Things are getting better. Thank heavens!

[@evetteparveen2959]

You've been through so much. Something as basic and normal as going for a poo is second nature to majority of us. Knowing there are people like yourself that can't and it could happen to anyone is very humbling. You're amazing. Wishing you nothings but health and happiness ❤

[@cyndimontanaro2902]

Wife of a Crohn's patient (dx in 1984-ileostomy done in 1999) and mother of two more Crohn's patients. I think what you are doing is very important. What I wouldn't have given to have had this channel as we went through my husband's surgery! Thanks for being willing to come out and talk publicly about CD and an ostomy!

[@ploppy193]

I had a J pouch done over 30 years ago and it's been good so far. Just putting something positive out there. 💕

[@user-cl5cd8po7h]

Thanks. Only negativity around the j pouch

[@CattyT1]

You have been the most helpful “random person” I’ve found on KZbin, I wouldn’t have got through this last year without your wise words, thank you.

[@garsu1229]

Please ignore those comments I love to listen and learn please keep talking you are the brightest light ❤❤❤❤

[@Artemisreid01]

It’s staggering how much you have suffered and still are! Love how you are so strong, sweet and kind through it all. Keep being you. ❤

[@themessycookbydale414]

I am in awe with your positive attitude Maggie. Your honesty and fearless discussions on your journey is inspiring. My son was recently diagnosed with Crohn's. He's managing it pretty well so far. Thanks for all the info.

[@kimmiramone]

I have had some serious stomach issues including diverticulitis. The thought of a possible ostomy terrified me. It is good that you showed me that it's not the end of the world and you can live after.

[@patriciaconstantino4669]

I also had a stricture Maggie which led me to an ostomy. I do not have Crohn’s, I had several bouts of diverticulitis which led to an abscess and severe inflammation causing a very stubborn stricture which resulted in a blockage in colon. I had a temp colostomy during that surgery.. long story short, reversal was tried months later and within a year stricture came back, balloon dilation a few times .. not successful so in March 2020 I was given a temporary ileostomy .. I decided I just felt so much better and 3 yrs later I am totally happy with my ileostomy and for me it’s working fine, I’ve adjusted well and as the saying goes, “if it’s not broken don’t fix it”!!! For me it’s been a blessing, but everyone has to do what works for them. I love your videos, you’ve helped me so much, talk as long as you want!!!! Sending love to you and Zak and your pups ❤️🐾❤️

[@jeanlewis7379]

Dear maggie you are such a nice person helping people with colon problems and putting their minds at rest.❤❤❤❤❤❤

[@ibdandme]

You can never talk to long Maggie, it is absolutely lovely to hear you talk about these, every video you make is so informative. Thank you so much, i do realize it takes a lot of work putting this together. Very interesting topic. I have a ileostomy for two years now and I am so grateful for the opportunity to have a normal life again. Thank you so much. Lots of hugs to you and Zak 💐 💐 💐 💐

[@blairsimpson9790]

Thank you again for bringing awareness and education on options that aren’t talked about nearly enough. The BCIR surgeons in St. Pete, Florida and California have both retired, but the Florida surgeon trained a surgeon in the UK who is now performing the procedure. There are several k-pouch surgeons in the US who are able to work on BCIRs since the two pouches are so similar. There are quite a few patients who have had their BCIR pouches fixed or revised into a k-pouch by the current surgeons available. Thank you again, Maggie! I’m glad that you’re feeling better! ❤

[@kisses4thekitty262]

I found you when I had my ostomy and desperately needed advice and an ostomy pal, and you were it! You made me feel so much better, more confident and normal. Now I'm post ostomy and I still love your channel. Thank you so much for what you do. You're the best!

[@rawr333r]

You popped up in my recommended a few years aho and ive been interested in your story ever since. I never knew your condition was a thing before then but im so glad to be educated and understanding of other peoples experience.

[@birgitraya4909]

My mom had cancer of the uterus in the 70s.the radiation was so strong it killed the cancer but damaged her colon and bladder.she ended up with a stoma and a permanent catheter for her urine. She was a strong woman.She lived to the age of 77,passed away from a brain aneurysm.

[@lauraj4764]

Thank you for all the information, Maggie. I had a temporary ileostomy in 2019, after surgery to remove a cancerous mass that also included removal of part of my rectum. It was reattached and the ostomy was to give the rectum time to heal. Now I am facing my seventh surgery because the cancer keeps recurring. This time I was told I am going to need a permanent colostomy due to the location of the mass and the removal of more rectum. I am not sure how a colostomy differs from the ileostomy in terms of output, etc. but I have accepted this is what is necessary. I enjoy your channel so much because you always reassure me that I can handle this.

[@Jenny-jd4yd]

I am a crohnie with a jpouch! We exist! It’s been rough, but I’m not quite ready for the final step of a permanent ostomy.

[@brandonshaw7619]

Whoa good luck iv never heard of your type it can be rough. I have jpouch due to ulcerative colitis that has led to cancer.

[@kathiecollins1042]

I have had my Jpouch for 22 years and love it. I have help other understand theirs. If you ever need to talk I am here.

[@ryancrooks9047]

Me too!!! I’m a chrons patient with a jpouch. Unfortunately I battle chronic pouchitis. Seriously considering going to permanent ileo. I did great with my first ostomy. I’ve had my jpouch for about 11 years and have had pouchitis throughout and a twisting at the top of the jpouch/ stricture since 1 year in. Thankfully my surgeon figured it out and untwisted it and dilated it, but it looks like the stricture is back. What would you guys do? I feel at peace with an ostomy, but my wife is having a hard time with it. Any suggestions/ thoughts?

[@anikabaddeleyrollingbackwa7341]

Thanks for everything over the years. I am happier and healthier because of you.

[@justjeanne1458]

You DO NOT talk too long! You are providing such great and practical help for those of us with IBD and caregivers as well. Thank you so much!

[@michaelj2276]

After struggling for 8 years with a J Pouch, I'm going in Monday to get my stoma back. I really appreciate you Maggie, so thank you for everything!

[@LetsTalkIBD]

Good luck!!! I hope everything goes amazingly for you Monday!!

[@michaelj2276]

@@LetsTalkIBD Thanks, Maggie! ❤

[@carolynnewcomb2153]

I just switched back from a J pouch to an ileostomy and I feel so much better! Going on 6 weeks. Good luck on your surgery!

[@michaelj2276]

@@carolynnewcomb2153 That's *awesome* to hear. Thank you so much!

[@Yuss.95]

Hi Michael, how did it go?

[@cherylhurst7093]

Thannks Maggie for all your encouragement and the loads of info and experience with us. I just shared your channel with a friend who has a pretty serious cass of UC with fairly frequent flare ups. Congrats on 95k subscribers.

[@act110mort048]

Actually, I subscribe to a lot of vloggers like you. Those people with medical conditions. I'm going through the same with sleep apnea. Just watching your videos makes me feel that I'm not alone in this. Thanks for the video! :)

[@karenl2795]

I have no idea how I found your channel in 2021, i think, but your positive attitude and straightforwardness is refreshing. You don't talk too much or too long. You really do get to the point. I subscribe to several crafty groups. I am bored to tears by the time they actually get to the point of their video.

[@kristiericson1365]

I like that you talk enough to make it feel personal. Thank you!

[@juliehake2635]

God bless you for the help, comfort, and compassion you give to those who need your help. You are fulfilling your life’s purpose. Blessings.

[@kristys7172]

I have IBS and celiac, I have been watching your channel for a few years now, thank you for all the information.

[@JoshuaFinancialPL]

This is so helpful. And the stories in the comments. Wow. You are certainly making a positive impact. May you continue long and happily.

[@9141129]

You're adorable and I love hearing you talk ! I'm retired from the medical field (Medical Technologist) and for some reason autoimmune diseases have always interested me. You are a great advocate for Crohn's disease and it's so awesome of you to share your story and knowledge. Great job!

[@lenac7655]

Yippee 95,000!!! 🥳🥂🎉 Congratulations Maggie & Zak. Maggie you've been so informative and transparent, and a trailblazer like no other. So happy for you. I've been a long-time subscriber and still love videos. Keep up the great work!❤

[@ji1072]

HiMaggie! I subbed today. I’m a RN since 1996. I lived where your house is. It’s beautiful there but I moved to Cape May, NJ. It surely is a beautiful place to live too! I don’t have Crohns but I do have IBD. I’ve went from 155lbs to 128 in almost 2 yearsI love your attitude , your garden, your house. Zach is so awesome. You’re both lucky to found each other. Take care and bless you both!

[@annenormand-wy3wi]

I am about to go through the APR surgery tomorrow and i have been watching all you videos to help me understand what im gonna go through….. you have been a true inspiration for me….. i see how strong and brave you are…. I can not thank you enough for all your help! Xo ❤

[@LetsTalkIBD]

Good luck!! I hope you have a smooth recovery!! 🩷

[@Beafree]

Honestly I enjoy your videos and think they're too short. I wouldn't mind a 30 minute video because I like hearing about medical stuff. That's just me. This was all fascinating though. Thank you!

[@gwendolynsmith8003]

Keep talking Maggie. We are listening, what you're saying is very important to those of us who are experiencing similar problems 👍

[@TURTLEORIGINAL]

Please keep talking, and being YOU!!! You have helped so many others and myself!!!❤️

[@kathleenmiller852]

Maggie, you are the sweetest!

[@bkrybabe]

Thank you Maggie, I went thru some of what you went through, esp the not being able to control my bowls. I was always on pain and eventually my colon died and my stoma has saved my life and the last 5 years with my Ostomy has very much been a blessing for me. Thank you for understanding, a lot of people don't. Bless you.

[@melodysmithey3172]

Keep talking sister!!❤😂🎉

[@Michael-MYR]

Great video, I totally agree that I am living with my Illeostomy without problems and life is so much better than before. Keep smiling

[@southerlandacres4543]

Thank you Maggie for being so open with your life! I wish I would have found you in 2015 when I first had a perforated small intestine and a temporary illeostomy. In 2016 I was reversed, my ileocecal valve was cut out too with the resection so I still have crazy bowel movements. I’m currently on Stelara and I’m due for a colonoscopy and possibly another dilation, I’ve already had 2. Sometimes I feel defeated. But it’s nice to see another human going through it as well. Keep it up Maggie! Your a light to us all.

[@MaryPasteka]

Keep talking… love your channel and so informative. You are so encouraging and always make me feel like I’m not alone with this ostomy journey

[@kukita2003]

Maggie, I think you’re terrific. I really enjoy your channel and the information you share. You’re so open and forthcoming about your situation. You’re absolutely fearless. I too have Crohn’s disease and was diagnosed 30 years ago. I’m fortunate to have only had one surgical procedure in all these years and have managed my symptoms without any complications. I know that may not always be the case. For that reason I greatly appreciate your journey, the advice you provide and the wisdom you share with us all. Keep up the good work and congratulations on your channel success!

[@lisabullock7461]

Hello dear at 7 years old I had ulcerative colitis, this was in1960. I had it for three years they tried all kinds of things. Eventually in 1963 when I was 10 I had a illeostomy. Trust me in those days it was really different. Hard to get supplies, it was a black bag with a belt, it took a hour to change my bag. I also wore a panty girdle to smooth things out. I had it for 20 years. I had three revisions on my bag due to pregnancy mostly. So after my three children when I was 30 the Koch pouch had just come out. My surgeon had learned from Dr. Koch so this was 1983. It was scare because all I knew was a bag since I was little. I'm 70 now so I've had it almost 40 years. I only had one problem 15 years ago, but nothing since. I empty it with a catheter about three times a day. More if you have the flu. Sometimes when I worked in the hospital I couldn't empty it for 12 hours till I got home . that could be painful if you have gas or ate alot. One time we took a trip and I couldn't empty it for almost 24 hours which was painful. I can't complain I've been blessed to be here for 60 more years and I would have bled to death. So like you said " find the right thing for you" take care🌹❤🤗

[@Heavyisthecrown]

Thinking of a teenage girl having to go through all that (without her mom, you’re dads a superstar btw) and the home dialation 😢 omg no wonder this is much better. Sounds like getting a osteomy is worse to a “regular” pooper lol but damn.. that’s horrific once you explain it 😢 you are a gift from God, Maggie. I read all these comments of people you help with these issues. So so many. So happy your are so much better now , you deserve to feel awesome❤❤❤❤

[@margievanhandel259]

Maggie, I've commented on your channel before, and had it not been for your sharing your story in such a personable manner, I'm not sure where I'd be today. Although I didn't deal with inflammation or strictures, I did experience the same embarrassing daily mishaps and I wasn't sure that I could deal any longer. Fecal incontinence controlled my Life, (or lack there of). There was one more option offered me before electing permanent Colectomy surgery and that was an InterStim implant. One more thing to put my body through without a guarantee for success. In fact, my Gastroenterologist asked if that surgery offered 10% improvement, wouldn't that be better than having a Colostomy for the rest of my Life? Ah... NO, it wasn't! Didn't seem like any real trade off, having the same issues plus anxiety 90% of the time! My Colostomy has been a "One and Done". I'm living a full Life, and just want for others to know that even though some times decisions can be difficult, we need to do what works for us. You erased that fear, and you can blabber on as long as you wish on Your Channel. You were and still are My God Send. Thank You So, So Much.

[@Πανδώρα-π8υ]

I just love you so much ! U spread so much positivity and awareness. I hope everything works out for you especially having babies . Be patient, God’s timing is best. I on the other hand suffered from recto-vaginal endometriosis, had a hysterectomy and a rectal resection surgery same time, surgeon did not form an ileostomy initially but did 2 weeks later after some of the stitches ruptured leading to leaking of fecal matter into my abdomen … long story short , got a temporary loop ileostomy and I’ve had it for 6 months. Surgeon is waiting for the rectal hole to close before I can have the reversal. I must say this pass months have been the most depressing, devastating, loneliest and saddest, I have cried more tears than I have ever cried… I have a GGE appointment on the 29th and I pray the hole has closed completely or at least enough to have my reversal. I really don’t enjoy walking around with this bag but you have also inspired me so much. So THANK YOU. ❤

[@rcelestefelix9299]

No surprise more people are subscribing because you are providing a much needed service. Not everyone is as candid, eloquent, and willing to talk about your experiences, holding back nothing. Also, you share your personal life to an extent, and even share Zak with us. He is such a sweetheart. May I make a suggestion? How about telling us what mL is in ounces and give an example. I looked it up, and the 800 mL you said you accumulated in mucous is about 28.5 oz., so almost 4 cups (32 oz.). If you would have said, ". . . nearly 4 cups" that would have been clearer (for me, anyway.) As a nurse you automatically speak in medical terms, I suppose. Can you dumb it down a little bit for this dummy? Thanks.

[@jodij6280]

I've had a Kock Pouch for my bladder since 2000 and I LOVE it. I'm in a wheelchair and had the surgery so I wouldn't have to get on the toilet just to pee. I got my Colostomy in 2020 to keep a pressure sore sterile and wasn't sure if I wanted it to be permanent. But, the bag made my life SO much better. I told the Dr. I wanted to keep it 6 months in. I had 3 bowel blockages prior to the Colostomy and didn't know, until after the fact, that I could still get them. But I know what it feels like, so when I started to get one I drank something hot. For me, hot water (coffee, tea, hot chocolate, etc.) works.

[@Chordata-flyer]

I've been referred to a surgeon to get a permanent ostomy bag and stoma. It's a scary step, but i know it will ease the pain and discomfort i'm currently in. I'm absolutely terrified. I know i need it, but i'm concerned about how much this is going to effect how i live and the way i function. Watching your videos has helped. Thank you for sharing your journey.

[@vertfemme6215]

You don’t talk too much. People gonna be people. You seem to do a good job ignoring the critics. I think your frankness is refreshing, and your vlogs re very interesting and informative.

[@lceec7012]

New subscribers here! I’m so sorry, I watch u all the time and just realized that I wasn’t subscribed. So glad u mentioned your subscription count. It made me look down and notice. You are so informative and real. You have an amazing ability to help make hard issues a little less scary. You should have a million subscribers. Congratulations!

[@fikanera838]

I'm so surprised at the number of people who bother to write in to complain about a presenters style. Why not just find another channel, & leave the rest of us to enjoy you the way you are?! I'm subscribed to channels on so many different topics, & I definitely prefer longer videos so that I get a comprehensive look at whatever the subject. I don't have any of the health problems you discuss, but I do have autoimmune diseases, fibromyalgia & rheumatoid arthritis, as well as severe depression, & I'm interested in the ways people with all kinds of health irregularities live their lives in a world that doesn't necessarily take into account anything too close to the ends of the bell-curve. Thankyou for having the courage & dedication to speak out about your condition. Best wishes from Czechia.

[@nathan65071]

First off, this is might be a long comment but I'll try and make it shirt. But thank you so much for the guidance on having an ostomy and how to take care of if. I found your videos and some other KZbinr videos about living with an ostomy back in May when I was diagnosed with colon cancer. I did a month worth of research and finding out what to expect, my surgeon gave me an open loop ileostomy and did a ultralow anterior resection to remove the mass I had in my colon. He said it would all be temporary until I have finished with chemotherapy. I rocked the ostomy from day one I've never had a leak or blow out and I've had it for 2 months so far. I take care of the skin around it and make sure everything looks good. I was alittle embarrassed about having it before the surgery, but I honestly think it gave me a boost of confidence after I had it done knowing I've done real good research on it before having the procedure. I've had amazing support at home with it and my wife is so surprised how well I have done with it. But when people ask me about having it reversed, I tell them sure I'd love to be somewhat normal again, but if there is going to be a problem with holding or constantly having to worry about finding a bathroom in time I'd rather keep the ostomy! I think I've grown quite attached to it so far even tho it will occasionally make noise when I'm in a quiet room around people lol. I'm also pretty young to be diagnosed with stage 3 colon cancer at 39 and I didn't know I had it for about a year, just letting it go thinking it was work related. But thank you again for the amazing tips and look into your life with dealing with an ostomy! Keep up the good work and advocating you do.

[@miabrown1000]

You're amazing Maggie.. You have a natural gift for education and your loss to nursing must be keenly felt! I'm mum to 2 nurses, and they would literally adore you with your ability to speak and impart knowledge.. Well done, and super glad to be rapt in listening to your message and to how you deliver your information! Bravo !!

[@sandraruperti387]

Hello, my favorite vlogger🥰

[@itsacarolbthing5221]

I'm watching your channel to try to come to terms with my sister's sudden surgery to have an ostomy fitted. Honestly, I'm heartbroken that this has happened to her and i couldn't prevent it or keep her safe. It came out of the blue, with no warning. I admire you so much for bringing this information and awareness. Your positivity. I hope that my sister gets to this place. She has been told it's temporary, or can be. I pray for the strength to support her. (Sorry, I'm not dealing with this all today. I'm normally better than this.)

[@catfaerie]

Big hugs from across the internet, if you want them. Hope you're doing better today.

[@micahford7670]

Thanks so much for posting! I also had a stricture. It is an anastomotic structure and it’s a complete blockage. The surgeon said that because I have so little rectum left, they have no choice but to remove it now and that I will be an ostomate for life!

[@Cat-un2gm]

I don't think you talk too much. I love listening to you, you're the cutest thing. Anyhoo, I don't have Crohns or any ibd, but I like learning about things. I mean you never know., I love your videos, and congrats on 95,000 subs.

[@LawnMowersThingsThatMakeNoise]

Thankyou for highlighting the facts on ilieostomy. its incredibly painful. i find your vlogs refreshing. thankyou

[@debralittle1341]

Just subscribed and have listened to several of your videos. I can't relate to anyone with this problem but I like to learn. Plus I really needed something new to listen to. Things were getting boring. Hugs and Luv ❤

[@staceyjohnson2929]

How rude for someone to tell you to stop talking so much. I enjoy your videos! Keep doing you!

[@lauriegermain5041]

I find your videos to be enlightening and helpful. I deal with IBS C and diverticulitis. The majority of the time it's 2 maybe 3 weeks before I have a bowel movement. When it does finally kicks in, it lasts for hours and I don't always know which end to put over the toilet. I get very pale from it, and I'm normally pale, it wears me out. I get the urgency to have to go but can't, or might just pass mucous. I've been dealing with this since my early 30s.

[@itguy46176]

Thanks for sharing your experience and your decision. I ve had a colostomy bag since March 1st after my emergency surgery thanks to Diverticulitis I have a follow up with my surgeon soon to determine if I qualify for a reversal. However, I have to decide if I want it. A colostomy bag is a lifestyle change for sure but its nice not to have stomach pain etc. I knew I had diverticulitis, and at first it seemed to be a flare up and I wish my Dr had ordered a scan and it may have been treated with antibiotics to avoid this whole thing. Ive sat in on a few doctor's meetings about it. 1 out of 3 fail or have major complications like having to wear adult diapers for life, no thanks I would rather have the bag. Anyways it all depends if I qualify and how confident my surgeon is about the reversal in my case. My quality of life is great right now I dont want it to get worse. Its better then what I had before the surgery. I completely understand what you are saying. My family thought I was over thinking it and being so young that its no biggie. Once I shared the Dr meetings I attended and facts around it my family is more understanding, even though its ultimately my decision.

[@markmiller2439]

CfK You do NOT talk too much! If anything, you don’t talk enough. God bless you.

[@lorikean3405]

Not that I have any experience with any of this but I do enjoy your videos.

[@fliegmar]

Thank you for sharing your story! I have Crohn's too and a long history of awful symptoms similar to yours. The leaking and the pains and hours spent in the bathroom around with sleepless nights that was my life for years. So when I got my ileostomy I felt finally I'm able to live. I still have my rectum but will possibly making decisions to remove it too because if ongoing inflammation there. I would never ask for reconnection. I feel so great with permanent ileostomy and I can go through my days without even thinking about my digestion! The bag change takes literally five minutes of my daily life and that's it. I can run and swim and I feel beautiful and sexy. I had none of this before ostomy surgery. I am so grateful ostomies exist and thank you Maggie for educating and sharing the realities of Crohn's struggle because it's still an invisible illness in so many ways, even in the medical world.

[@MrsJulieannG]

Your personality is so magnetic. You are absolutely adorable. Your channel came up in my algorithm and I am so glad it did. While I don’t have an ostomy, I am thoroughly interested in what you are teaching. You are so well spoken and I appreciate you bringing such a positive awareness to something people don’t always want to talk about. Thank you. I am a new subscriber ❤ Julieann 🤍

[@dianejverderiver]

I chuckled at the comments of others about you talking too long. I almost always look at how long a KZbin video is before I decide to watch it. My time is valuable. Haha. But with you Maggie, I enjoy you and your videos, even if they're long. Keep up the good work. 🩷

[@amyhull754]

This was SUPER interesting. Thank you for sharin!!!

[@Mark-zm9yg]

i had bowel cancer i was given the choice to have a j-pouch or a ileostomy .i choose the ileostomy but when they did the surgery they found more tumours within 2cms of my anus so if i had choose j-pouch they could not have done it anyway . since my surgery my life has improved so much since that day . Btw your videos helped me so much to help me through my my early days and plus helped so many others as well .great videos and great content thank you.

[@gordiemeow]

There are a couple hundred people in Europe who've gotten implanted with one of those blockers. The group doing it is in Norway, and they're called "Ostomy Cure".. that said, I talked to a woman who had it done + I've read up on it more in depth, and it's not something I would ever want done (for a number of reasons). I like my bags plenty, and I don't want to mess with success...

[@LetsTalkIBD]

Hmm the name is interesting! I'm not I feel like an ostomy needs a "cure", but rather maybe some alternatives! 🤣 thank you for letting me know! I'll have to look into this more!

[@MrMax-om8mq]

Hey im 23 and From Germany. I have a Kock pouch since 3 Months and im Happy with it :)

[@sksheffield79]

I just subscribed! Can’t wait til you make it to 100K!!!!

[@claudiaschunior8070]

I was told doctors don’t do jpouch surgery with crohns patients. I was first diagnosed with ulcerative colitis so I had a jpouch for almost 20 years . Later I was told it was crohns . Just recently I have so much scar tissue that I now have to live with a stoma unless I try the Cleveland clinic where they do a k pouch for extreme cases. Only reason I didn’t go was that there was still no guarantee it would work. I have had pouchitis several time with 3 fistulas a different times. If I could I would keep my jpouch but no choice for now. Accepting this stoma as permanent has been to difficult for me.

[@sharonzona4346]

I had a j-pouch for 7 years. I started developing pouchitis around the 6 year mark. I was in and out of the hospital, and my life revolved around when it's get sick again. I was in contact with my original surgeons (I had my colectomy in NY but was living in GA at the time of all of the pouchitis), and they strongly suggested that I get a permanent ileostomy. A few months later I met with a colorectal surgeon to get it scheduled. I've had my ileostomy for 23 years now. It's not the be-all end-all, but it's better than going into the hospital, on average, once a month. If I'd known how much an ileostomy would change my life for the better, I would have done it a year before I did.

[@barbarawolcott6999]

Hi Maggie! I am about to have a permanent colostomy April 17, 2024. I have been watching your videos for at least 4 years. I had anal cancer 17 yrs ago. I’ve been dealing with radiation disease on an ongoing basis and it’s getting worse. My illeostomy was temporary. However, it has gotten worse as the years have gone by. Your videos have been a great help for me. I can’t thank you enough!

[@TURTLEORIGINAL]

I’m praying for you to heal! I hope your pain is being controlled!❤

[@claudiatighe514]

I enjoy your talking ! Good info thank you!

[@mesmythamp84]

Every once in a while, that Jersey accent comes out, and you sound like Marisa Tomey from My Cousin Vinny. You do the hand moves and the eye roll to. That's one of my favorite 🎬

[@jeanlewis7379]

Maggie u are so nice and helpful.i dont have those problems but had a catheter for a while .so sort of understand.u are so helpful to people as well.❤

[@justinlloyd3]

Some are patients. Some are just curious. While others think you guys are the cutest couple.

[@janellerhodes]

We love you Maggie ❤

[@NoItGrl]

I have a jpouch [as you know, HEY FRIEND 👋 ] and I will say I am considering going back to an Ostomy... strongly. And I had my surgeries over 10 years ago.

[@suzanneharvey4885]

Hello Shawn, my husband had an ostomy for 3 years due to UC, he had a J-pouch done 3 months ago... He is 62... Have you had problems for all these 10 years? It's a bit rough right now.. hoping things get better..

[@NoItGrl]

@@suzanneharvey4885 off and on , short answer: yes. I started with UC and after my jpouch was diagnosed with Crohn’s. Then I had to start diff meds (very expensive Stelara) to combat issues I’ve had with pain, fatigue, frequency and inflammation. It’s way better than the life I had but it’s kinda like trading one list of problems for a new list. I’m still grateful for it and realize it’s a blessing but idk sometimes I wonder what life would be like without the surgeries and on stronger meds or something

[@littlemissunshine7846]

I totally get it ...after finding all issues are Cause by not having a gallbladder... Constant diarrhea, acid reflux

[@littlemissunshine7846]

Omg...I've got somewhat under contral..there are day thought that I got deal with but they are far and few

[@angelairvine3091]

Congratulations on getting 95k , was wondering if you might be going to sell any awareness wrist bands 🎉🥂

[@fancydeer]

You and your channel make the world less scary.

[@oldvinezen9857]

Hi Maggie. I'm a random subscriber. I have always been interested in medical issues therefore, here I am. I work for a non profit cancer organization where I teach meditation and visualization and have began my own channel titled Old Vine Zen. I have about 50 subscriber's which I feel very grateful. I wanted to congratulate you one your milestone of subscribers and tell you how wonderful your channel is and how much I appreciate your down to earth approach in delivering your information on this very private subject! Thank you.

[@LetsTalkIBD]

Thank you for sharing this with me!! Just subbed!

[@jenniferdignan8507]

I love your earrings today!

[@gregcranham]

Another great video thank you Maggie!! I've been on the crossroads of keeping my stoma or reversal via j-pouch ... think maybe I'll keep my stoma ....although I have a hernia and also 2 fistulas so that will need to be fixed ... it's all so unknown! Anyway, great video and hope you are doing well :) xx

[@LyndaHart-vp3uu]

Hi Maggie you keep talking you share from your heart and experience I am an illiostomit as well I am staying this way I have not a lot of option either except I had a prolaps quite a big one so last year so the had to do emergency surgery and really mucked up so now I am waiting for another surgery so I can function properly and also be able to change myself agein thank GOD for a new surgeon who is willing to fix it I love watching and listening to you you have been down the road I have you live a long way from me I live in Newzealand thanks for technology have a good rest of your week by for now say hi to zack from lynda hart

[@janejones9004]

After watching your videos I understand that a person can still live a good life with an ostomy. I felt miserable having uc and just really uncomfortable talking about some of my symptoms like passing gas with blood or blood clots. I often had to sit on a toilet just to pass gas. I have started vedolizumab, hope it helps.

[@JM-vh7oc]

That was interesting - thanks for sharing.

[@karenshepler7128]

I have to say thank you for sharing this as it's very important to learn all you can .As I am not there at this time .as the medication and me watching everything I eat is working so far but .never know what's going to happen as when you get an infection, you tend to go into far mode. Take care

[@janielleryan4760]

Hi Maggie. I have UC and had a temp ileostomy when I was 15 to allow my JPouch to heal. I almost died by the time they believed there was something more wrong with me than hemorrhoids! I am now 48 and have severe anal strictures. I have to have dilations in the hospital about every 4 months. The surgeons keep telling me that I can’t go on like this-meaning they want me to convert to a permanent ostomy. My main problem with the ostomy is that I have super sensitive skin and then skin around my stoma was always raw and bleeding. I’m terrified that would happen again and then what? There are only so many options for us. So I feel your pain. You spoke about incontinence. I wanted to tell you that even with a JPouch you are not completely continent. My problem is leakage when I sleep. It’s terrible. My spouse sleeps in another room. He never said why he decided to do so, but has for about 10 years or more. Its a sad existence at this point. Thank you for speaking out on the matter.

[@bessyloutunes]

Girl; you are a trooper. Thanks for normalising the not so sexy. It’s helps more people than you can imagine.