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My Ostomy Bag Leaked on Our Bed! | Let's Talk IBD
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- เผยแพร่เมื่อ 2 ก.ค. 2020
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Same thing happened to me with my now husband. (I had several high-output fistulae then) I made a huge mess and locked myself into the bathroom, crying like a baby. I was so embarrassed. I wanted him to think that my shit doesn’t stink. When you’re so in love, you hope the other person thinks of you as the most amazing, beautiful creature ever. He knocked at the door asking what was wrong and I could hardly speak I was sobbing so much. He was completely surprised and just said: “But I don’t understand! We can wash that.” And that’s when I knew he was the best man I’ve ever met.
Fistulas are the worst! I finally got rid of my fourth and worst one in December 2018. It was the 2nd major surgery to take down the fistula and thankfully it hasn't come back yet. That particular fistula was on my tummy right next to my belly button and it was just a nightmare. It was really active, constantly spewing stool. My skin was so burned I was applying prescription burn cream. I dealt with it for 3 years. I lost my belly button during my last surgery, but it was worth it. I also had a recto-vaginal fistula,that was my first one. After that,I had one form on the very inner part of my butt cheek. After that one,I had one on the very inner part of my other butt cheek! And after those were fixed and gone,then I had the one on my tummy. I take Stelara now,and it has really helped to keep my crohns in a state of remission. I'm so sorry you're going through that hellish nightmare of dealing with a fistula. I hope you're able to have surgery soon to fix it. Sending you well wishes. Stay strong and hang in there. ❤
Hi Maggie ! Due to rectal cancer I had my rectum and anus removed , a colostomy and Barbie butt in March. You have helped me more than you will ever know. Started watching your videos before my surgery. Had my first leak yesterday yuk ! FYI now cancer free
I'm so happy for you!
@@danithefiend6167 thank you ! Still getting used to all this
I wish you all the best!!!
Hi Maggie. You intrigue me greatly. I have a brother & 2 nephews who also had the surgery. If U wouldn’t mind, would U B nice enough to message me on FB? My name is the same there. Not many know of my colostomy, because it’s none of their business. I think we have a lot we can discuss.
The same thing happened to me. I was so discouraged until I found Maggie’s videos. Appreciate her so very much. I’m also cancer free. Blessings to you Mary.
My little girl (age13) is expecting full colectomy in September. I'm so frightened for her. Watching your videos is really helping both her and me. Thankyou beautiful lady xoxo
How did it go? Hope you and your daughter are OK!
My daughter got hers when she was 14. I hope, given that your daughter is having a colectomy, it means she'll be getting a J pouch at some point and reversing the ostomy.
My mum had colon cancer at the age of 69. She could not cope with her stoma and no longer dared to public - she became depressed. She died of bone cancer 4 years later. Until her illness she was a happy woman. That was 20 years ago, I wish she could have seen you and your Videos, it would have given her so much braveness. You ' re a great young woman. All the best for you both - greetings from germany - and sorry for my english.
I got a batch of horrible bags that leaked, I told my husband "these crap bags are crap" 😂
Laughter is THE best medicine 💜
Maggie, I love your confidence! Many young women in your situation would never be able to let others see their ostomy bags or the significant scars that you have at, and below you belly button. You are a beautiful and strong person on the inside!
And outside too. You are a cute girl.
I give U a lot of credit. I have had a colostomy since 1978 & was told I’d never live to B 40. I’m happily 66 & visit seniors getting colostomies. I go 2 homes, hospitals, & even nursing homes to tell people that they can live a normal life with their colostomy. Happy emptying!
Ron Moidel Have you ever had any problem with a parastomal hernia? I am almost 71 and have had my colostomy for 30 years. I might add that it has been the best thing that has ever happened to me. Don’t care for the hernia but at my age, not to fond of the idea another surgery.
Hi Joyce. I had a growth under my stoma about 5 years ago. It was causing a problem of applying my appliance, because the growth was intestine & no appliance would adhere to it & it caused too much leakage. After having it surgically removed, I’ve been fine ever since. One note, I was 24 at the time of my surgery, & have out lived both my doctor & original surgeon.
I have a parastomal hernia .. not causing internal pain just feels like muscle pull externally .. going to my Dr on Tuesday to see if this hernia can wait until possible reversal surgery. Is parastomal hernia a major surgery? In March I had my 4th colon surgery and not in any rush for another surgery!!!!!
Patricia Constantino I was told since my stoma has been in the same site for 30 years that I would need to have it relocated to the right side along with repairing the hernia. So it would be quite an ordeal. I have been through enough surgery’s in my life time and not to enthused about another. If it weren’t for the hernia, I would not have any complaints. I can honestly say that I Love an appreciate my colostomy and have since day one.
I sleep 99% of time with a beach towel on my side of the bed. The thick, beach blanket towel from Costco. I don’t get many night time leaks though. I just do it to be cautious. I don’t like to disturb my husband, especially if he has to work the next day. He would gladly help me and even after five years, he’s better at bag changing than me. But changing the sheets at 2:00am is not something I want to keep him awake with.✌️
You're absolutely adorable and beautiful, sis. I'm so sorry you (and others) have to suffer with this cruel illness. I wish you love laughter and happiness.
Great comment.
You are a teacher, an educator , and very wise beautiful young woman. Thankyou for bringing this disease into the light so people can learn and be aware of every aspect of it. Oprah said “ everybody’s got something”....
I pray that my 17 year old daughter finds a man like Zach when she's ready who will understand these special circumstances.
This is so hard to do.. find a man who is understanding
He apparently just took to it from the beginning. You can see it doesn't faze him at all.
I got a beautiful screen shot of a lily from your video, thanks!
You’re daughter will definitely find a nice and decent person in her life and hope in future science gets more advanced and there will be a permanent solution.
I would HIGHLY suggest contacting an ostomy society in your area. If YOU don't know of one Im sure your surgeon's nurse can find one for you. Even if its a roomful if old people like me she'll become more comfortable talking about it and will learn all the "tricks" from the others. She WILL hate it so just get prepared. It's a major body image change and u just have to let her work it out in her own way. I pray for YOU MOM because things are going to be really rough for awhile. Find me id u need to.
I'm sure she will. There are so many people out there. What matters is who she is on the inside. And she is still beautiful on the outside anyway. When she finds the right person they won't give a crap about these special circumstances. They will love and cherish her no matter what
Thank you for sharing 💜 I was diagnosed after 5 yrs of being sick when they didn’t know much about IBD. This was back in 1978 which took Exploratory Surgery. It had spread inside me by then. Wish you the best and every other IBD victim💙💙
Wow, your house has a beautiful view!
Hey Maggie when I had my first resection and full rectum removal I’ve followed you thats 5 years now and you are still a warrior to me as a fellow crohnie xx
You and Zak bring such joy to so many -- ostomy or no ostomy. Thank you.
So I had 28 kidney stones a few years ago and was quite painful. I’ve had 5 back surgeries that haven’t helped, so I’m thinking between the actual location of my back pain, along with the pain pills, I didn’t realize I was passing stones or retaining them until the one stone went to my bladder. In total, I had the one stone in my bladder blasted, and then two surgeries to remove them on both left (which had more stones) and right kidney. Boy that was a lot 😉 I actually went to my urologist a couple weeks ago for my yearly check up, and have been kidney stone free for 3 years 🥳
Obviously we don’t know the results of your scans, I pray it’s nothing serious. You could use a little break from all that not so fun stuff!
Thanks for always being so positive, even when things get rough and painful. I know that if I couldn’t make fun of myself, I’d be beyond miserable!
I absolutely love your property and house and barn. Zak is just so easy going that’s great.
I love how you admit you’re a messy person 😀 and Zak embraces you anyway! I’m a sorta messy person but my husband doesn’t completely embrace it 😩
I too am a messy person and a bit of a hoarder. However much I try, I can't change. I used to be a whirlwind cleaning before anyone visited. The good news though is that tails off as you get older. Most of the people that come to our house are good old friends and I figure they know me and too bad if the place is a mess. It's not dirty, just messy. My husband is a fussy pants and doesn't like the mess but he puts up with it. I tell him to clean it if it's bothering him - he never does lol. The only place he's not allowed to touch is my study/craft room. That's full of books, fabrics, yarn all in boxes and that's just how I like it. Not for him to reorganise my space.
By the way, I just love your property - so beautiful even (or especially?) in the rain. I've watched loads of your videos but never really seen the outside like on this video. It must be such a pleasure living in that environment.
Just got my colon removed May 7th and I've been really struggling getting used to my bag. I've had so many leaks and thankfully I'm starting to get things under control in the last couple days since finding your videos.
Thank you.
Be kind to yourself, your body is adjusting to your new way of life. 💜
You’re so beautiful inside and out. Aside from medical issues, “messy” is me and I have three dogs (60lb, 120lb (slightly underweight due to medical issues) and 130lbs). Love watching your videos!
I’m a messy person too! I’m the same way with when people come over like crap gotta clean up! Pretty rainbows!
I want to thank you for being brace wnto put up your channel, and share with the world about your experiences with your ostomy. I had ulcerative Colitis at 17, and it hit me very hard, both physically and mentally. To this day, I struggle with the echos of being shamed about my ostomy. After my surgery, I was sent home with no help, or given any information about how to deal with my ostomy. Been 30 years now, and watching your videos helps with tips and tricks i never knew before. Thank you. I will keep watching your channel.
Last summer I was diagnosed with a chronic kidney disease. I’ve been bingeing your videos bc at first I found learning about IBD absolutely fascinating. It quickly turned into the fact that I admire your infectious positivity. You’ve been through more than anyone I know and you’re still positive and literally living your best life and I’m here with my diagnosis that pales in comparison, having a pity party. Thank you for your videos!
You to hang on tight to each other. Build you empire together. God speed.
Maggie, Maggie, Maggie, it's so important, the thing that you do! yuk things happen, you just clean and go on. I still can't take it easy, but you help, because you can, so it is obviously possible:)
Living in the desert... it was a real treat enjoying the storm, clouds and trees, beautiful, thanks
I have had ostomy for 2,5 weeks now and my bag leaked for the first time last night. I hope this doesn’t become a regular thing. Thank you for sharing your story and life ❤️
What a beautiful place you live, Maggy! I love your videos! God bless you two!
Both your earrings and the lilies absolutely fabulous
I’m going to be getting a colostomy done pretty soon so I have been watching you a lot so I know what to do
Zack is so sweet! 😊
I was in awe at the courage you and Zak have for each other. You both give marriage what it should be about LOVE for each other amongst life’s curveballs!
You handle your condition with humor and grace.
Not towels, chux. I've been an ostomate since 11-20-2013, and have had some EPIC leaks. I put a big (23x36?) chux under me to sop up leaks. I use half a chux (18x23?) and fold and tape it into a kangaroo pouch, I tuck the ends into my underwear. Those have been a major help.
My stoma's name is Alex, after Alexander The Great. I named him that because Alexander The Great was a king, a warrior and a hero, and getting the Ostomy saved my life.
Alex prefers to be called Little Mr Pinkness. Except for the duration of the pandemic, until we get a vaccine, he wants to be called Peanut. Except for Fridays and Saturdays, when he wants to be called Pickle. He has a very complicated personality.
He only lets me eat a salad if all the pieces of lettuce are shaped like the State Of Illinois. That includes lettuce on sandwiches and burgers.
LMP says "Hi!" to Leroy. 🙋♀️💖🍩
The multiple personalities of a stoma. Mine is buddy, buddy thinks he loves talking to people... his timing is really off 😂😂😂
You're adorable. You go through so much but you have a wonderful positive attitude. Hi Zak you're a sweetheart!
It is so beautiful up there, even with the rain.
It actually looks beautiful when it rains 😀😀 love the rainbows! I watch you from Connecticut
Zack is a lucky man. You are beautiful and so sweet... and you love dogs. Your ear rings are amazing. Thanks for your videos and honesty. Take care.
Oh Maggie the view from your front door is amazing 😉 I would sit on the step for hours with that view and I love a good storm ⛈ take care hun an keep smiling 👍😘💋
It happens and Infeel your pain! Been married to hubby almost 13 years who has an ileostomy. I clean up the bed and he cleans himself up.
Maggie I totally get it. I'm kind of a messy person myself no matter how hard I try lol The struggle is real so it's always nice to have that person to help you tidy up.
you mentioned clips falling off.... When I first got my bag I had a couple of accidents concerning the clip... It kept getting snagged on the blanket or clothing so I went to Walmart and bought some waterproof tape and taped the end of the clip and no more clip coming undone. If I have to empty my bag I just take the tape off, empty my bag and put the tape back on ..If I have a leak from the bag itself I use Mattress pads that are cloth on one side and leak proof on the other side...... I don't ruin my sheets or mattresses .... I sewed 2 pads together and it is 3x6 ft. and I have 3 sets of them
Works like a CHARM !!!!!
Thank you so much for making videos. Thank you also for keeping us updated on you Ibd journey! I have ulcerative colitis I have had it for 10 years. I am doing well. I am excited for y'all getting married in October. My fiance and I are getting married October 10, 2020. We are excited but also stressed.
Your barn seems to be coming along well so far.
My prayers to you and Zak with everything!!!
Thank you! We are getting married and day:D congrats!!!
@@LetsTalkIBD Thank you! Congrats to you as well!
What a fabulous couple, love love love Zach what a wonderful man. God bless them
When I go swimming or about to get my freek on with my man, I put my mini bag on but if I forget to put my regular size back on, it leaks for sure.
I wish I had a mini bag, I'm going to do some research 🤗
Mini bags are great for those two occasions 👍
I tell my hubby I'm wearing my sexy bag 😉
@@sarahmorley1031 I have an ostomy nurse through my doctor,who helped me find all the correct ostomy products for my ileostemy ,and for any new situations that have occurred.
I would just like to say you are a lovely person and I think Zak is a very very nice person too. I think if you two can handle these things there is not much in life that will really break your spirit. The best of luck to you both. I am very old and have been struggling with handling leaks etc since I had the operation 7 months ago. You have inspired me so much. Thank you.
Your skin is beautiful!
What a beautiful kayak trip,especially the lilies...WOW! Not been kayaking since before 2018 in NC,but it sure is fun.
Great video as always. Sorry about the leak but ty for making us feel like we’re not the only ones going through it! Happy 4th!
I love kayaking, thanks for reminding me how nice it can be :-)
When people walk by they will just think you are video chatting...that’s what I always think if I see someone talking to a piece of technology
I really enjoy seeing you two so much. And you are so right about just laughing about those kind of moments. It is a part of life.And But what a wonderful way to see if you and who you are interested in is worth your time. And he sure is. You two are great ❤
I totally understand the whole bag leaking situation. My bag leaks a lot. A few times it leaked in the Middle of the night and I didn't know because I was passed out. The next morning I woke up to poop everywhere Talk about an eventful morning those says. Great video as always
Yeah that’s not a fun thing to wake up to!
You are absolutely amazing I had to have stoma because I’ve had colon cancer, my team of doctor were amazing because the type of cancer is really odd because rare in women and usually found in men over 70!, anyway i writing to you I live in the uk and I need a stoma I was terrified but your advice and the tips you showed really help because nothing fazed your wonderful husband loves you so much you two are going have amazing life together. Has for me I am in full remission and have my stoma reversed. Thank you for everything
Hi Sweetie. I know your pain. Mine has leaked a few times too during the night. Not fun. Specially if you are really tired and then trying to put a fresh bag on. Plus washing the sheets and blankets AND remaking the bed. I get my reversal surgery done July 20th. It's coming up. Hopefully my kidney Dr says yes to it because my kidneys were off. I am positive he will allow the surgery because he told me once I have the reversal, my kidneys will get better. I hope you are well, you look so beautiful and healthy and postitive. Luv you. God Bless
Hate it when my bag breaks or leaks! It happens.
Glad to hear I am not the only messy one. Can’t seem to change my ways. I have 4 cats and there are toys and other cat accessories everywhere. I think my hubby gets frustrated but he doesn’t say anything. I cut him slack too. It’s what marriage is all about. I hope your kidney Issue is easily treatable.
Looks like you had a lovely day in the sunshine Maggie xxx
I feel like whenever I leak and blow out is is multiple times within a week. Then I go months without one. I also purposely have switched to dark sheets so if I do leak it will not stain. I also have a G and J feeding tube and they also leak sometimes. So I have a double whammy of potentially messy things.
It has been 3 months since I had (knock on all the fucking wood) one. I had my first bag leak right after I got my ostomy and was few days inpatient. We are using Hollister products with a clip and the clip didn’t shut properly causing a disaster. I never used a clip again. My other leaks I had at the time were caused by not having the right bag system (I was changing my bag every 1-2 days due to not the right supplies; now I change my bag every 4-7 days scheduled to prevent the bag from failing randomly) for me and my stoma shrinking as swelling subsided causing a poor fit.
My leaks also now only happen when i don’t get up in time to empty bag. When that happens the gas pressure breaches the seal and therefore a leak occur
Now all of my leaks results from I do have the clean up routine down to a science. When it happens in the middle of the night/early money I quickly strip all sheets and clothes, baby wipe my body down, change my bag and I lay down just a flat sheet to get me through the night. It takes me about 10 minutes in the middle of the night Then first thing in the morning I spray my sheets and wash them.
We also have a compact portable carpet cleaner which gets it all out very well. It is invaluable as a person with an ostomy and feeding tubes
Great idea for the cleaner!!
I showed my husband the part where you say you are a messy person and we were both laughing. It was like you were speaking for me. I am messy as part of my personality, my husband has learned to accept it, and when company comes over, everything has to be spotless. We are the same person in the messiness department.
Beautiful video and thank you for the message you gave us at the end of the video 🙏❤😇
Kayaking is the best! Also excited to see your Dagger boats!
You empower so many women by being your true self. It was nice to finally meet Leroy while in his kayak. It is who you are so you keep shining bright. You do so much good for people to see and hear your stories both good and bad. You and Zak are such a cute couple. I can't wait for your wedding. You will be a stunning bride.
Good video and nice to see you’re doing well, minus the bag leak of course! Did you see my latest Helger post on the day you had your scan? Just askin’.
Not sure, sorry I've been quite busy!
Thank for getting back to me! If you get the chance check it out. It was made expressly for you and Zak!
Suggest you buy some mattress covers, so if gets really bad you can through it away. Better than buying a new mattress.
Just nominated you. I have watched all your video's and have learned so much.
Beautiful view from your house 🏠
That lake looks wonderful. 😀😀
You are so adorable .love youre place so beautiful.even in the rain.thanks for sharing with us those horrible leaks.hate them at nite is the worse.but i guess we are used to it by now .take care .❤❤🏡
I have inflammation at the end of my small bowel ( which makes sense with the stabbing pain where my stoma used to be) I have I/EUA Wednesday x
I'm sorry that your bag leaked Maggie! I know how messy, and upsetting that can be. I haven't had any leaks in bed since I started using the Sensura Mio ostomy bag and wafer. That was until last weekend. I've been having a lot of problems with gas overnight. I'll wake up at like 3am to pressure and discomfort and pain in my belly and a balloon about to pop for an ostomy bag. I've been taking GasX before bed and it helps somewhat. But,that night before bed,I had ice cream and it caused me to be so gassy,the pressure popped the wafer seal! And so make matters worse, I had just put fresh bedding on 2 days prior to this terrible incident. It's very frustrating and gross when this happens and it creates a time consuming mes to clean up. I'm sorry you have to go through this as well. At least we know we're not alone! Love ya girl! 💜
Has is always the worst for me after any sweets, but si.e times it is like thank god for has x
Gorgeous earrings 😍💚💛💚
beautiful landscape
You can change baby, you can do it, you have a beautiful house. I like that weather, go girl! 🤠
STRONG 💪 BEAUTIFUL 💙❤️ YOUNG LADY ❣️💙.
Great video ,have fun together ,wish you the best.shalom from Eilat Israel ( 109.4° no rain for next 6 months😭🔥)
Happened to me too, three times. I think I was unconsciously during the sleep checkin up a safety click lock. Now, I tape it (click lock) with small duct tape, and its never happen again. :-)
I hear you about the messiness. I’m a messy person have always been. I’ve been married for 30 years now and my husband accepts that about me. As I’m writing this I’m in the hospital recovering from surgery. Had my stoma reversed. My surgeon wants me on full fluids for a month to give everything a good rest. Right now I’m craving cheese and crackers. I guess I’ll settle with pudding. Your hair looks great in those braids. Btw when my bag leaked the air would turn blue. I have never swore so much. And the big ones too. I never say the f word but I did then.🌼🌸💕
Pretty earrings in this video.
I have had a colostomy for 9 months now and I sleep with a Chux pad under me because I am in a wheelchair and a leak would be hard for me to deal with by myself.
My bag leaks in bed too. I have purchased washable pads and sleep on one of those on top of the bottom sheet to minimize damage
What a lovely young couple you are, really enjoy your videos
I was charging my daughter's bag last night near midnight because it leaked. Dark green bile as she's not eating food right now which is fun.
Aww I'm sorry!a
I love this typing mistake:charging a bed... Awesome... xD
I watched this yesterday thinking how lucky I was that I have never had this happen. I woke up this morning at 2:30-my bag had opened at the top and bottom and my bed was covered. I didn't know what to do first-strip my bed and soak everything or clean myself up and change my bag. Do you have any recommendations for products that can remove stains? I soaked everything and pretreated it but there are still stains on my bed sheets...Oh my
so i haven't had a leak while i was asleep in years (knock on all the wood) but when i did i was also the person who made sure the leak wasn't bad, changed my bag and threw a towel over the sheets. i like sleep way to much to do laundry at midnight :')
Exactly how I felt :D
Your home mess is so relatable 😭 I try so damn much and it ends up the same. Maybe one day.
I don’t have a stoma but I do have a Foley catheter because I can’t pee and have had it disconnect from the night bag and from leg bag and it soaked the sheets and my clothes.
Have you considered using absorbent bed pads so you don’t have to change the sheets? My partner uses brolly sheets brand.
The rain is great.
I noticed something strange...all the time the bag and the surgical opening was on the right side of her tummy....but to my amazement at 12: 20 everything shifts to her left side of her tummy!!!!!! Or is it she just shifted her bag
I use a selfie camera and sometimes I forget to flip it in editing 🙃
Great video 😇🤗 love y'all.
No life jackets!!😱🙆🏼♀️🤦🏼♀️
Despite everything, you are blessed. Luv you Zak! And those rainbows - they're only another way of Jesus telling you both He loves you and is giving you both grace to deal with life.
I am the same way when company comes over , it’s gotta be super clean but when I don’t have guests my house is a disaster , I say lived in lol ,,, plus a very furry drooly Saint Bernard with incontinence issues doesn’t help
yes, I can see the double rainbow!
Just wait till you get old...everything leaks .....y’all need a double kayak.....so much fun....
You are awesome!💙💙
Shit happens.
I have an ileostomy due to Crohn's. I've had accidents to. No big deal.
I have been having so many leaks at night lately 😩
Oh well you have to smile or you'd cry 😃 ❤
I leak at least once a week. Know ur pain GIRL!
@@g.salazar5173 do u still leak once a week after 2 years?