Ostomies Overnight (How We Can Prevent & Deal With Complications) | Let's Talk IBD
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- čas přidán 5. 09. 2024
- Ostomies are so much more difficult to manage overnight because... well, we're unconscious! In this video, I share about the tricks I've learned to either prevent issues or ease them when they happen.
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Hi, I'm Maggie and I have Crohn's disease. I am thrilled to be here sharing my personal experiences with Inflammatory Bowel Disease as well as living with an ostomy. I'm proud to share a little bit from a clinical experience as well, having worked as a GI pediatric nurse and ostomy telehealth nurse. I am so glad you are here. ♥ #ibd #crohnsdisease #ostomy
I am 70 year old healthy female with no digestive problems but I watch this channel because I am so impressed with you and your mature attitude about these issues
She is very good.
Same here 😊
Not a tip. I just want to say I'm so grateful for you, Maggie, and your channel. I recently had stoma surgery, and because I watched a bunch of your videos beforehand, and a great stoma nurse team at the hospital, I wasn't terrified. Your videos have helped tons while getting used to living with Bert. (My stoma.)
Thank you bunches. You're an awesome human being.
I named my stoma…Stomie😂
Mine is "Pinky Sh♡t Head", haha.
I love her, she saved my life.
Loved the video! I had lots of leaks in the beginning too. Thankfully, I learned a lot from your channel about dealing with leaks. I’m 69 and I wake up several times a night to pee so emptying my bag isn’t much of an issue. Once I found the right pouching system, I haven’t had a leak since! Thank you for your wonderful information. ❤
Thank you for all your tips, I had my Ostomy surgery in 1984. No ostomy nurse available to help navigate my new lifestyle. It was trail and error for many years.
It’s a crime to not be given access to an ostomy nurse. This happened to an 85 yr old friend. I told her to tell her nursing home to immediately connect her with an ostomy nurse. They did & she was able to troubleshoot her problems and get her questions answered.
I had personally never heard of, or seen anybody with a bag in my life before I got mine. I had a c-section and during the process my colon was damaged; I woke up with a bag and felt like my whole life was over. I cried everyday I was in the hospital, couldn’t even look at my stoma let alone empty my bag. The nurses helped me a ton while I just cried. Emotionally I was spent and this lovely nurse named Belinda truly made me feel human again. Taught me how to take care of myself, slow steps of being able to look down again, empty my bag, deal with leaks, taking care of my skin. I’ll never forget that amazing woman. You made a point of how it’s crazy how our bodies adjust, and you’re absolutely right. I went from not being able to look at my stoma to being able to change my bag in less than 10 mins. My body naturally starting sleeping on my right side. Resilience is the best way I can describe it. I got my reversal on July 23rd of this year, and although I’m bag free now my respect and understanding for the community has grown immensely.
I had a colostomy back in early February 2024. I’ve been following your videos before and after my surgery. They are so helpful and I’ve learned so much from the information you give us. Thank you so much!
Maggie will you do a food video. For instance what about lettuce? What to do about really thick output? Thank you
Thank you
You have made my Colostomy journey very easy. ❤
I love your explanations, your calm demeanor, oh, and sense of humor.
13 months post surgery for me.
I would like to add a tip for new ostomates. Be careful with the bag deodorizers and lubricants. The liquid can kind of break down your adhesive/seal more quickly. Be conservative with them. More deodorizer meant less odor in my mind and I was constantly leaking in the beginning. It really only takes a few drops, save some money! Also be careful rinsing the drainable bags, a lot of folks have no issues with rinsing but I did. I would end up having to change the whole setup after each rinse. Called supplier and some brands do not recommend adding water, I now use the two piece disposable. So much easier! Hang in there, it gets better! ❤
You are right! I had an illeostomy to save my life during cancer treatment. It leaked a lot and I had to be hydrated at my oncologist office. The next day I couldn’t even concentrate on what the nurse was telling me. It was reversed three months later. I was terribly over radiated and now have a permanent colostomy.
😢 I have a colostomy from radiation treatment also. How do you know you were over radiated? I've had tears and abscesses on my colon. Had to have the treatment but it has caused a lot of damage. The spasms are the worst!
Hello there.
I am an ileostomy mate.
I started following up with your talks. Amazing ❤
I am 64 years old and have had my colostomy since December 2022. I wear a Coloplast 2 piece, but the pouch has adhesive and sticks on the flange instead of a clip on. I don’t trust clip on pouches because I had just gotten home and was taking my things into my bedroom and the bag popped off because they neglected to lock the pouch ring. I’m in a power wheelchair and it was a horrible mess, and I live alone. Lousy homecoming!
Anyway, I recently saw your video on stoma cloak and so I wear that and find that it catches leaks from the pouch. Fortunately, I have never had a leak from under my appliance while sleeping. I am like you, and that if I feel anything itchy, I change my appliance. I watched you before I ever had my ostomy and in the hospital they told me I would probably have to have home health to help me, once I went home and I told them that I wouldn’t because I had watched so many of your videos I already knew how to handle it. They were shocked that I was able to change my appliance the first time in the hospital and they didn’t need to teach me how to do it. They still insisted on doing it, though.
I can’t tell you how much your videos have helped me. You are so inspiring! Your voice is reassuring and you are so knowledgeable. Recently, my filter clogged with liquid output and my pouch was super full of gas, and I woke up in time to handle it safely. Fingers crossed this warning system will continue!
Siobhan (my stoma)
The timing of this is perfect. I just wrote you on IG asking for tips for this hahaha thanks!
You're the reason I did this!! Thank you for the topic - I hope this was helpful!
I agree with you Maggie, one learn to pick up on the signs, have a ostomy for 3.5 years, and yes it do get easier.
I guess I was lucky enough in the hospital to have a nurse who used 3M Tegaderm transparent film dressing to seal around the edge of the adhesive for extra protection after I developed a sever rash from said adhesive. I am going to try "tattoo tape" because it looks the same and is far cheaper but, if it doesn't work, I'm going to stick with the Tegaderm just because it works.\
Love your channel. It helped answer many questions when I was a 'Noob"! It still does because it's always wise to listen to 'veterans'. And, I also like to hear about your adventures. Peace.
I have my colostomy from radiation treatment damage. The loperimide or immodium capsules have helped with rectal spasms along with slowing output. My regular primary Dr suggested trying them since i was having the spasms for the longest time. Hopefully that can help someone else. Thank you for being so open and honest about your experiences. Having an ostomy placed can be so scary and overwhelming. Your channel has helped me so much.
I don’t have and don’t know anyone with an osteomy. I just came across your channel a few months back and watched it out of curiosity, to learn what an ostomy is and how to take care of it. Needless to say I now have a lot of knowledge. I find you and your channel to give such a positive outlook about it all and now am subscribed to your channel. Thanks for the info and the positive, upbeat information
Awesome video as always, Maggie. Very good subject, especially for new comers. I always sleep on a towel or two when I travel. Those white sheets scare me. I can't say that I haven't made a small mess once or twice. I don't feel the extra housekeeping tip is ever enough. With nearly 50 years of experience with my ileostomy, I probably have a few more tips to share. More to come. I've been a fan for about 6 years now. Keep helping people. You are great at it.
I have a friend who has crohens disease I really enjoy your videos a lot I really appreciate it
Love your videos Maggie. I've had stoma for over 30 years because of cancer but still have problems to deal with. Just got to get on with it. 😮😮
Ostomate since 2015. Thanks for your channel.
You are looking really good Maggie. Very happy and light, and glowing. Hope you are enjoying your summer. :)
Great video! My tip is that I set an alarm for the middle of the night "just in case" 😅 I don't always need it but it gives me peace of mind!
Everything you say is 💯. This is my second Iliostomy, and everything you say happens and nights can be rough. It's nice to know im not alone.when im sick i sleep prepared. Its a feeling. I hate Crohns 😢
All this makes perfect sense. You have been so helpful to me over the last few months, just, thank you so much xx🥰
Thank you. I agree with you about knowing when you need to get up. I would say I have less issues with an ostomy than when I was dealing with the awful symptoms of ulcerative colitis. Although my ostomy surgery was done as an emergency my life has definitely changed for the better
I have a suggestion. Wear disposable underwear so that if you have a leak it’s more contained in the underwear. Works well for me.
Great idea.
I have UC but no ostomy. I love watching your videos.
I had my ileostomy in November of 2022 and have changed my bags a lot also suffer with pain under my stomach and not sure if it’s scar tissue or my hernia so uncomfortable every night and days live onn Tylenol . Does anyone else have this . Thanks for being here Maggie learned a lot from youn.🙏⭐️Star
I have pains in that same area and sometimes toward the right of my stomach/belly button area. I had a perforated colon and still deal with these pains daily since October 2023.
Thank you so much for sharing.
Really good info Maggie ~ thankyou for being so sensitive about it!
I have a g-tube to drain my stomach and a j-tube for nutrition meds fluids. I drain my stomach 24/7 into a urine bag I can’t even count how many times it’s opened up all over my bed at time. My feeding tube as well will disconnect I’ll feed my bed and acid will flow out of my j-tube. It’s is a nasty mess. I have 2 water proof mattress covers and I always have one of them and a set of sheets ready if I need to change them in the night if it’s woken me up. The bag I use for my stomach output is a urine bag that is drainable and I have to say I’ve forgotten to make sure it’s closed. When I get my supplies monthly I sit down and pre-cut all my bags as you cut the tubing to the size you want and I also close the bottom during that time because when I get a new bag is often when I forgot to close the bottom and it gets all over me and wherever I am like the car!
I’ve been fortunate in that my filter works well with the Coloplast Sen Sura mio.
Thanks for sharing Maggie, l wake up now when my stoma meeds attention, and as long as I don't drink fizzy I'm not having a problem with gas, my main problem is a big hernia, ❤
Thank you Maggie! Hope it was fun at the beach.
Also, I make sure I empty my bag before going to sleep.
Your blog is just wonderfully helpful. I was wondering if you have any advise as to how to handle the bag filling with gas or air? Thx
I have a colostomy on the illiostomy side so for the most part it behaves like an illiostomy. I was going insane with my night time output & I suddenly started gaining weight like no other. My surgeon prescribed Ozempic for gastric dumping. Best thing that has ever happened since getting an ostomy. It slowed everything down & I’m sleeping the whole night & the icing on the cake is weight loss!
Good for you!🙂
Wait... what... I have an ostomy and I've been dumping for 7 straight years. (The speed and amount of my output is insane).. did you say you had "dumping issues" and gained weight simultaneously? And then did you say ozempic helped you?
@@christopheriacovo8472 yes I was dumping every 30 min to an hour. Multiple explosions it was an absolute nightmare! My insurance only cover ozempic for diabetes & gastric dumping. We turned it in it was ok’d & my life is 100% better! I only empty a couple of times a day now it is wonderful!! As to the weight gain my dr had originally had me on amodium 3 times a day it was killing me. If I ate I was sick if I didn’t eat I was sick so I was constantly eating to try & get rid of the stomach pain. Once he took me off the amodium things got much better. No more stomach pain . My hydration level is much better although I’m still going weekly for fluids I’m getting ready to cut that back & gradually wean off. Ozempic is a game changer for sure!!!
Even those of us females who don't have ostomies will know the problems of a heavy period.
Three weeks ago I had an emergency Iliostomy surgery so of course I now have the bag. Hopefully it's just for three months. I found that buying mens underwear (that go down the leg a bit because mine is quite low on the belly) works pretty well with keeping the bag close to my body. Hope this is helpful.
I use a pillow for when I turn on to my left hand side (ostomy is on the right) and rest the bag on and against the pillow.
I have a urostomy so there's a different process etc., but a lot is the same. I connect the 2000 ml night drainage bag and can sleep through the night as long as bag is okay. I do wear bag belt and prefer a camisole top that will hold the bag flat and not twist. Same on itchiness, change. I had a bad box of bags and that was the worst night. If it wasn't for your channel, I wouldn't have felt like I could do any of this, there just isn't the same type of thing for urostomy patients.
Thank you for the helpful information, my husband is going in for sergery Tuesday to get an ostomy, It's good to know what to expect when he gets home from hospital.
Thank you for the advice and take care 😊😊
I had a Colostomy that was eventually closed now I'm stuck with an ileostomy an its harder to deal with by far.
Yes I want to give BIG credit to ileostomy peeps, with a colostomy I never have leaks (thick output & miralax to avoid blockage)… you have much more stress about Ostomy problems, I do recognize how lucky I am.
❤❤ Love your channel. Your videos are very informative
I've had my ostomy for 5 years. Most of the time I don't leak however the last few days has been leak city. I'm 65. I wear pull-ups and chux to bed. The shower is my friend
😊😊
I have been an ostomate for 20+ yrs. Take lomotil twice a day, i am still not sure what agrees and disagrees wirh me sometimes even though i work with a dietician. And still once in a while, get leaks. Thank yoi for this video maggie. Lots of good information. 😊😊😊😊
Could also use a night drain
Hey Maggie, I have been struggling with ostomy since 8 months
I have had this so often i wake up and my bag is about to Explode! its full of air even thought I went to the toilet to entry the darn thing 5 hours ago. X_X
same with me. Haven't a clue as to why it fills up with air like a balloon..?
Hello Maggie. Maggie, I am very happy for my operation , but a bit shocked. The anaesthetist told me, at my pre-assessment, that I would be in hospital 5 or 7 days. My admission letter states that I am in the day surgery ward to only stay one day.
Hi. Thank you for making the videos. They've helped a lot.
For the flies, the zevo plug ins, Work really well.
I was just looking into them! Thank you!!
Zero works great. I’ve been using these over 2+ years, way before I received my ileostomy (which I just got on 071724)
I know about waking up like that! filter doesnt work for ileostomy
So disappointed with the filters. Sounds like a great idea, but it just seems to continue to fail and leak. And, why do the manufacturers refuse to address the issue; I just don't get it? Luckily, my non-filter related leaks have always been my getting a bit of a fold in the flange when applying. Clearly different when you have a colostomy rather than a ileostomy to deal with though!
I only eat twice a day that’s it at 10am is my first meal then at 12pm I exercise on my stationary bike for an 1hr 30 minutes then once I’m done wait 30 minutes then eat my next meal and that’s it I also drink 1 gallon of water daily my output is super super thick the only time it gets watery is when I consume sugary drinks like a soda or sweet tea I’m able to sleep threw the night without waking up and I sleep any position never had a leak
I WATCH THIS WONDERFUL CHANNEL AS A FRIEND HAS CROHENS...MAGGIE IS SO COMFORTING❤❤❤❤ SHE IS AN ANGEL🎉🎉🎉 I GREW UP BY WHERE SHE LIVES...I AM LIVING IN CALIFORNIA WITH MY HUSBAND ❤ I LOVE HER HOME AND GARDEN..SO BEAUTIFUL AND EAST COAST❤
I just got my ileostomy two days ago and I woke up this morning full blown blow out. Soaked the pillow I had overtop of it, soaked my pj's but was not on the bed. I woke feeling wet thinking it was more of a night sweat but I guess not. I hope tonight is better. I meet with the Education team tomorrow morning and should be going home after that.
Do you do any driving yourself?
I am so sorry! Those early leaks are rough! And yes - I drive!
Thank you ❤
My Coloplast Seusura mio flip flange has the belt hooks. I cut them off.
Agree about the covers¡ When I first got my ostomy I put a dog's pee pad under me at night. It was just the right size in case of leak. Also I put a menstrual pad on top of the ostomy in high rise underwear
I had an ileostomy in Sept 2022. Wake up 3-5 times every nite to pee and check on the bag. Usually need to drain at 3am. When I eat lunch & dinner, ileostomy will almost immediately output water 250 ml to 300 ml and have to drain bag instantly, so unable to eat out. Doctor told me to take 2Loperamide and 1 lomotil 30 minutes before food, but it didnt help. Very frustrating. Does anyone has this same issue? Please advise if you have solution. Thank you.
10 Q I Am happy by your videos
Need to find a way not to roll on my stomach at night
I hear ya!
I eat dinner at 6 and can sleep through the night. I ate dinner at 7 once and was emptying my bag at 3:30 am. So 6 it is.
Bonjour
❤❤
Hi my sister I have storage of English language plise helpe me by comment my soma is stel blooding
☀️🌼
If I have a leak at night, I’ll have a leak in my dreams.
❤️🙏😎☀️👍🙂🌺
I am 64 years old and have had my colostomy since December 2022. I wear a Coloplast 2 piece, but the pouch has adhesive and sticks on the flange instead of a clip on. I don’t trust clip on pouches because I had just gotten home and was taking my things into my bedroom and the bag popped off because they neglected to lock the pouch ring. I’m in a power wheelchair and it was a horrible mess, and I live alone. Lousy homecoming!
Anyway, I recently saw your video on stoma cloak and so I wear that and find that it catches leaks from the pouch. Fortunately, I have never had a leak from under my appliance while sleeping. I am like you, and that if I feel anything itchy, I change my appliance. I watched you before I ever had my ostomy and in the hospital they told me I would probably have to have home health to help me, once I went home and I told them that I wouldn’t because I had watched so many of your videos I already knew how to handle it. They were shocked that I was able to change my appliance the first time in the hospital and they didn’t need to teach me how to do it. They still insisted on doing it, though.
I can’t tell you how much your videos have helped me. You are so inspiring! Your voice is reassuring and you are so knowledgeable. Recently, my filter clogged with liquid output and my pouch was super full of gas, and I woke up in time to handle it safely. Fingers crossed this warning system will continue!
Siobhan (my stoma)
I live alone I dont communicat to ather for my colostomy still my chldren not know my illness becose I hadn't tolled so at thise time relax by thise video excuse my language is error😊