I Used to Hate My Ostomy | Let's Talk IBD 

Hi everyone! I've had a few people ask about joining my channel - here is the link for those interested! Thank you for your support

Hi Maggie! You are my hero!!! Thank you for sharing your life with us! You have helped me tremendously!

Yeah, there is so much they don’t tell you. I had a month or so of leak problems when I went home after my permanent ostomy my stoma/wound nurse rocked and helped me figure out what worked for me. When I had a temp ostomy as a kid my mom had to do all my bag changes. Even after my permanent ostomy in 2019 it took me a while to even get the courage to even look at my stoma and to actually touch my stoma. I remember how weird I thought it was when I touched it. That it was part of my actual small intestine. There needs more education about stomas and ostomies.

Thanks for this video, Maggie. My proctocolectomy surgery was also in 2009 and I also had a rough recovery. But here I am 12 years later - happy and healthy, 6 years married (we met dancing) and very grateful for the medical miracles that made this possible. All the best to you, and to all the ostimates out there.

I completely agree with you, but your videos have been integral in my current success in living my best life. Thank you sooooo much.

Glad you are doing this. Thanks for sharing. You sharing, helps others.

You’re such a good nurse, someone you want to trust. I don’t have these issues, I had/have issues that wish I heard someone like you. Optimistic. Thank you. When you’re young (I’m 33) you wish you had someone like you to hear. ❤️

you inspired me to continue my dream education.. I am still in nursing school beacause of you.. even though I got my stoma after five months in school. And All I can say is thank you for saving me and helped me and my family heal with some laughters🥇❤ thank you for being there when I needed someone in my age who dares to be honest and joke about stomas.

Can you make a video about camp oasis? I am curious about it and would be really interested in hearing your experience!

Hi Maggie, my husband had bladder cancer he has a urostomy for12 yrs .we also struggle. Your stories are so close to home. Take care Jennifer chesney

I have been watching you for years now, but I never really comment. I am a speech therapist at a nursing home, so while I don't really deal with ostomies themselves, many of my patients have ostomies. Your videos have made me feel so much more comfortable around ostomies and able to know when my patient might need some help with their ostomy if they aren't able to tell. I watch your videos because I just love hearing your story and your personality, but you have helped me in my career too!

My surgery was supposed to be best-case scenario - I would be in the ICU on a ventilator, and worst-case scenario - I would be in the morgue. My stricture had caused my colon to be the size of a football. I surprised everyone and didn't even need oxygen after I woke up.

My story is pretty much Identical to yours, since 2009 Ive had 5 surgery's, spent 4 months in the hospital, and a infected rectum removal. And now I'm going as strong as ever and still have the stoma, I call it Vesuvius because of obvious reasons.. I'm also 72 years old, so you go girl.

Thanks for sharing your story Maggie. You are an inspiration to me as I have an ostomy since October 2013. I hated it also but now I’m ok especially as I hear your story. God bless Maggie ans and stay as sweet as you are.

The same reason I got mine. But haven’t had a chance to reverse because I have a rectal-vaginal fistula.

Hi Maggie, I just wanted to let you know what your story means to me, I'm a double ostomate, I have a Colostomy and Urostomy, but my story is very different from what you have, I was born with Spina Bifida and had my surgery done after struggling with irregular bowel and bladder issues for years. But you sharing your story with others makes me want to share mine as well.

I'm so glad I found your channel Maggie! I've found the ostomy community and am so thankful for the support everybody gives me! I'm still going through the restructure reattaching process, but my anemia is so bad that I'm getting iron infusions now. And looking at surgery again next spring. I'm hoping when all is done I can be where you are. ^^

It is hard to live with an ostomy for the rest of the life, but you are strong and confidence to deal with it and stay healthy, Miss Maggie.💕

Hey Maggie 👋! Not watched it yet obviously, I am commenting 24 hours before the release after all, but I wanted to write this anyway. In my experience I’ve not heard anyone else talk about not liking their stoma at first. It’s good to talk about it to let people know that it’s okay to feel conflicted, coz I sure did. So thank you in advance for touching on this topic. Mine was coz of ulcerative colitis that had only just been diagnosed less than a week previously (this was in 2013). I still hadn’t processed the UC diagnosis when my colon had to be removed, my life changing forever with the diagnosis, let alone the surgery! So it’s no wonder I ended up really resenting my stoma, I never named it, just thought of it as the volcano coz it was a very high output ostomy. And then I had the j pouch done in 2015, and it’s only with having chronic pouchitis since 2016 and eventually realising that I would need to go back to the stoma at some point that I really started processing everything and accepting it all. Currently on the waiting list for that surgery, and now just wanting to have that operation so that the pouchitis chapter of my life can be put behind me. I really hope I’ll be in a better place mentally this time around as far as the stoma is concerned, I’m already thinking of names! Maybe I’ll be cheeky and continue with the volcano theme and call her Etna after the one in Sicily! I’m actually very tempted to do that….. Edit: spelling mistake really bugged me

Sjo Maggie! You are such a massively inspiring woman. Thank you for getting on your bull horn and talking about these issues. God bless you and Zak. Blessings from South Africa.

Hi there, I just wanted to say that I thoroughly enjoy watching your videos, it has become part of daily routine now 😅 Your videos helped me get through a dark time in my life a few years ago when I had to take a semester off from uni due to stomach problems. I hope all is well and you post some vlog videos in December 😅 I'm from a tropical island and I love watching your snow day vlog videos since we don't get snow 😊 Much love from Trinidad 🇹🇹 ❤

You rock sweetheart 😘 💕 ❤. You have helped me so much..xoxoxoxo

Hey, Maggie. I'm so grateful for all these videos. I'm likely facing an ileostomy in the next year or so and I feel like because of your videos, I feel so well prepared for it. I'm not saying I'll find it easy on day one, but I know it'll be a much better than it would have been, thanks to you :-)

I have had my ileostomy for three years now. About two and a half years ago a reversal was attempted but it failed. Now I am scheduled for Gallbladder surgery on Dec,7 and will also have the ostomy reversed again. I went back and forth about the reversal but the supplies are expensive even with insurance and I have issues with leaks a lot due to the sight Herniating. For me I still hate the ostomy and I really dont have a choice about the Gallbladder so .... I will roll the dice and attempt the reversal again. Peace be with you and all who face the challenge of the ostomy life.

Having to go to the nurse back in the day to see to an Ostomy ? Did young ladies in that school have to go to the nurse when they were menstruating as well? That rule was ridiculous. If You knew what to do and how to do it back then, the school administration should’ve reviewed their rules and changed them regarding the issue. I have a suspicion as to why that rule was in place. And that suspicion is they wanted to avoid any lawsuits in regards to carrying out their care of the students who they had charge over. They should’ve had a discussion with Your father and You about such rules, the why’s and wherefore’s, before You started going back to school ( their school) . And come to an agreement with You both regarding the issue............... ⚛️☮️🌏

Hi Maggie! Sorry I missed the premiere. We're getting closer to closing on mom's house, which means, closer to moving to better medical care (hopefully). I'm noticing that my intestines aren't working... as well as they were, which wasn't that great anyway, but now it's even worse. You've taught me so much! I'm hopeful that a new GI, combined with what my current GI has discovered, will lead to treatment. And should that treatment be, the removal of my colon, I feel I'm in better shape mentally thanks to your videos. It should be very interesting how my treatment will even go to begin with, as I do have a disfigured stomach, which I believe is caused by my Ehlers-Danlos Syndrome. When food gets to a certain point in my stomach, my stomach drops, forming the "J" shape, which then it hits my colon in my lower abdomen causing severe pain. My current GI said he couldn't do anything with my stomach, and didn't even refer me to anyone who could. I pray there has to be a surgeon who can perform some type of procedure, like a lap band or something. Then of course we can work on the rest of my insides.

I don't know what to say. What you've been through. Your compassion and energy and straight talk. Thank you for educating the public and making a difference to people who struggle with health issues. I can't find words that properly reflect my reaction to this video. I'll try later.

Maggie, you are amazing. Just amazing. As a one-time kid diagnosed with Crohn’s now married to an ostamate, thank you thank you thank you! Please know you have definitely paid it forward with your videos and education and just being you :) My husband and I have watched your videos pre, during and post ostomy surgery and you are one of the ones who have carried us through. Thank you again

I think we understand more by and by.. I am 55 and just busted out of the hospital… I have a very compromised immune system.. but the friends I have collected through my weird life I would never trade. God in His wisdom makes me hang out in hospitals to meet pretty wonderful people! Just like seeing you for the first time and knowing I needed to change my life. You helped me make the leap and I am eternally grateful!

I Maggie..Thanks for sharing your knowledge. Could you let us know how you shower with your ostomy. After over 2 yrs with my ostomy, I am still having problems figuring out to keep adhesives dry.

I have had my Stoma for a very, Very Long time now and I still hate it. I still can not find clothes and feelings comfortable in my own skin.

Hi Maggie, you are adorable!

I have problems with dry skin around my Stoma what is the best products to use regular products and can you use the stoma powder then the skin prep or vice-versa

I have had a temporary loop ileostomy for 3 and a half months and am still in the hate stage. I have lost 25 pounds, no food is appealing and I cannot keep an appliance on longer than 2 days, but more often I have a leak within 24 hours. My skin is very sensitive and EVERY seal, ring, paste, sheet, etc I have tried has dissolved and I have output on my skin very rapidly. I am so tired of having burning, itching, discomfort around my stoma. Tonight we put a brava protective seal on my skin and a trio siltac seal on top of that and then sat my wafer on top and I am praying with all my being that the silicone seal keeps the output from seeping in between my stoma and the wafer. Any advice appreciated!

Eat marshmallows 10 min before change always works for me.

How do we join your page? I have Gastroparesis, Diverticulosis and IBS. I've been through a lot over the years and gone through a LOT of surgeries for Endometriosis, PCOS and IC but I can't imagine going through everything you've been through. Thank you for sharing your journey with us. My Dad has Ulcerative Colitis. It was really bad a few years ago but thankfully he's in remission right now. I've inherited all my health problems (more than I've listed here) from his side of the family and I'm praying I don't inherit that too. Guess only time will tell.

My colon was removed (total colectomy with ileorectal anastomosis) on Sept 14th. When I broke the news to my PCP and Neurologist, you'd have thought the worst thing in the world happened to me. I should have around 18 years before the disease process takes it's course and I'll require an ileostomy-- even then I'll just be thankful I'm pooping. No need for apologies here! The benefits far outweigh the alternative!

I just had colectomy 2 weeks ago. Still dealing w pain. How long before that subsides? Also, I am doing a 3 stage J-pouch. Also I developed Parosmia so all food makes me nauseous. Taking olanzapine for nausea. Have you or do you know anyone that has dealt w Parosmia? Lastly, do you have a patreon page, meaning how best can we support you?

I appreciate and I can related to your stories. I had a very ilsecomy for a year. I got sepsis to. I went from 280 pounds to 170 pounds. I Spencer 6 weeks in hospital. Also had 2 major surgeries within a couple of weeks. I was so weak from my first surgery. I had to be incubated and placed in ICU unit. Many months down the road I had another surgery to reveral .my journey was wound care .I hope you are feeling better. I'm in law enforcement so you know can understand all new differences issues dealing with an ilsecomy bag. I had diverticulitis .thank you and have a great holiday season.

You are so so great Maggie!!I always tell everyone how I have gotten the most help on managing my ostomy from you and a few other ostomates I follow.. I was so much like you when I was waiting to reverse my first ostomy… which didn’t happen due to a long surgery as I was so loaded with scar tissue.. but fast forward to my 4th surgery which I had option of reversing .. I kept saying to my husband.. we better do whatever we want to do now before I reverse my ostomy as I have no idea if I’ll be able to do everything I can do now with my ostomy…I was given a bee life with this ostomy.. I asked myself .. why am I even reversing if I can do so much now with the ostomy .. so my ostomy is not being reversed.. my life is too good with it and as you feel Maggie, I don’t know how my life will be without my ostomy.. I reversed once.. I had to wear a diaper and within months of reversal I got another stricture .. so my ostomy and I are buddies now and that’s how it’s going to stay!! Thank you so so much for all your help and great videos!! 💗🥰😘💗

When the WOCN came in to mark me, I hadn't even been told I would be having a surgery ... The last I had heard, I was going to be having a (another) colonoscopy AFTER a CT scan to "untwist" my bowel ... that wasn't twisted ... and the colonoscopy could have killed me. I freaked when the WOCN wanted to mark me because I never got marked before any of the other 4 colonoscopies. I sent him away and called my sister. The WOCN got the message while he was in the ward and just got to me BEFORE the surgical team did.

Hi Maggie For me, I think the most touching part of your early ostomy years is when you talk about your Dad doing all of your early bag changes, that’s awesome, that’s an awesome Dad! (not to say that my Dad wasn’t awesome, he was), but its really great hearing how he bravely took on the role of your first ostomy nurse, learning everything he could as quickly as he could, it Could Not have been easy. Whether its a Mom or a Dad, there’s just nothing like the care of a loving parent. Many Kudos to your Dad. ❤️❤️

Hello Maggie I want to start by saying thank you for sharing your life. I just got my ostomy yesterday and I am terrified! I do get comfort from watching your videos. I have never had so much pain in my life. Not even my open heart surgery was this bad. I have UC. I was born without a rectum so I have dealt with the stomach problems and diarrhea all my life. It was still such a hard decision to have the ostomy done. Now I have it and I am so afraid I won’t be able to manage it.

Thanks so much for posting this. I felt like I was listening to my own story! I hated my ostomy at the beginning too and it's so interesting how time has a way of completely changing your perspective. Your videos have helped me more than you know! ❤️

Hi Maggie! I joined the world of Crohn’s and Ostomy back in Feb of this yr when i too got so sick that i had no choice but to have the Ostomy . I have had several issues since (i still have 2 big open wounds next to my stoma where the stint was through that grew after my stitches were removed), and figuring out my meds as they wear off at the 5 week mark in a 8 week cycle. All that and i can honestly say I do not hate my ostomy. It has been a real life changer and I really am considering keeping it. I was sick pretty much since i was in my 20’s (i am 43 now). It has been a rough rd a lot of that time. That is something i never want to go back to. I can leave the house for long periods of time now and not need to know where every bathroom is on the way. I too did not learn too much in the hospital, though had/have a absolutely fantastic Ostomy nurse,she truly is wonderful. Here is a tip for anyone worried about output during a change that has really worked for me. Eat 2 big marshmallows about 10-15 mins before a change, it slows down output (almost to a stop) for a short time so you can get the change done. I found this helped a lot in the days i had watery output, and even if i need to do a middle of the day after a meal change it does slow it down so there is less mess to worry about. Thanks for doing these videos. For someone who knew very little about what my days would be like with an Ostomy, i have learned so much from watching. I truly am grateful for you doing these and will continue to watch, with an Ostomy knowledge is the best tool to have. Thanks again!

Omg same! I currently have an ostomy 3 years now I'm 17 and if it looks at school I just put tissue paper around it and go about my day.

The most interesting is the "what would i be like otherwise" part, because sure no one wishes someone or oneself such illnesses but on the other hand having experienced the way we walked... we can see all the things we would be missing otherwise. And so is every path, there is no shadow without light, you would have experienced other friendships other loves maybe and other good and bad memories, but having your own now...i know you wouldnt want to miss them. I feel the same about my way with a difficult family growing up and stuff and honestly so many people say "i am sorry" and i am not anymore. i was. but this way i learned other things and met other people :)

Hi. I'd just like to thank you for this video. My long time girlfriend got her ileOstomy over a year ago and she has experienced almost all of the stuff that you said. This video also reminded her that she is NOT alone when it comes to those experiences. Thank you again!

Hey, I'm purely here for curiosity reasons and I just wanted to say this video was very interesting!! I love hearing your stories.

شكرا

❤

Encouraging to watch this. Currently sitting in the hospital with the exact same thing. The pain, the discomfort, I have a really bad stricture even dilation I need to be put to sleep. They won't give me a stoma until theyv tried everything but they don't understand the pain and what it's doing to the rest of my body. I have an infection and my concern is iv split something and am leaking aswell but they don't see anything in a CT scan so they just want to put me on humira and send me home. I know there's a chance it's reversible but at this point I don't care I just can't live like this anymore

Can't wait, always great info

Thanks for sharing your story Maggie! You're an inspiration for so many people ❤

I had my ostomy since 1995 I’ve had obstruction, rectum and anus removed ,a revision do to accidentally stabbing a whole in my stoma and in sept 14 2020 had my ileostomy relocated away from my belt line all by the same surgeon. The most surprising thing i switched ostomy companies to HOLLISTER AND SINCE September 2020 I’ve have not had a leak oh i was 30 back in 1995

Where have you been Maggie, I haven’t heard from you for ages. Next time you think of disappearing, give us a note explaining your exit okay. 😀 🦘 🐨

Always trust a woman's intuition!

I had back surgery and I told my husband that I didn’t think it was going to help. I went in and they took me to the OR put me to sleep cut me open and they lost power . So they sewed me up and did nothing. I endured all the pain but no relief it’s been 2 & a half months and everyday it seems I’m getting worse. I still can’t stand for more than a few minutes without terrible pain. But the dr asks how I’m doing like I should be better because he cut me open and sewed me up without checking to see if whatever is floating around is bone or tumor. I’m 71 and I can’t see life getting any better than sever pain. Sorry I guess I needed to get this out today.

It's nice to see your vlogs more often ! 🙂

You are terrific

Jearlean is awesome.😎 A great model too.

Awesome video

I don't know if you believe in God or not but may the Heavenly Father grant you blessings and peace. I can only say that when I see your strength it can only be heaven sent. My Dad got a urostomy and I have been helping him change his bag until he becomes comfortable enough to change on his own. I can say you are an impressive woman and have helped to uplift me during this journey. Thank you.

Pro17:3 "the refining pot is for silver and the furnace for gold, But the LORD tests the heart." God had a plan for you. Because he knew you had the guts enough to get on here and help people with something most people would not talk about. Gold go's throw the furnace but in the end it is pure.