I've had my ostomy for over 30 years. You are a nice refresher! I still, after all this time, am devastated when I have a leak or blowout. It really undermines my self-reliance. Nice to know I'm not alone.

@dewarsbramangus

8 ай бұрын

I feel the defeat every time I leak or have a blowout which is 3 to 4 times night or day!

great video , you are a great example to young people who have to get an ostomy , im about 7 years post surgery and like you it was a game changer for me , wish I had gotten one 30 years ago , people like you take the stigma away from having "the bag" , hope you are in good health , good wishes and thanks from an old guy in Ireland

Good god, this woman is as amazingly strong as she is drop dead gorgeous and brilliant. A real inspiration.

@cockeyedoptimista

Жыл бұрын

Yes, she is really bright and beautiful. What a nice comment you left. So glad that you said that.

I’ve had my Ostomy for 25 years. You have a great video/channel. Tip for helping with leakage at the bottom of the pouch: tear off a small piece of toilet paper and fold it into the closure. Rip off any paper that sticks out and then Velcro it shut.

Say No to NPO! :-) Hope you are doing well. Thanks so much for sharing. I sincerely appreciate you showing how things are in real life. Many educational ostomy videos show the picture perfect scenario which is amazing when that happens but it’s important for people to know it can be a challenge at times…but there are always solutions. Thanks again and hope to touch base soon!

@cockeyedoptimista

Жыл бұрын

Yeah, that picture perfect, sterile scenario is not always that helpful. You expressed it so well in your comment! Great comments and I couldn't have said it better.

I am an older guy from England about to have a stoma. I have watched a couple of your videos now and have subscribed to your channel. You are a very brave and inspirational woman.. thankyou for what you do. George, South Yorkshire, England

Glad you’re back. Just got my ileostomy a couple months ago and your videos have helped a lot. Keep them coming

@CecilyLivingBeyondtheBag

2 жыл бұрын

Thanks so much, Rick! I have missed posting and connecting with you all a lot. I hope your ostomy is doing well and that you’re adjusting well-I know it can be hard but you’ve got this! 💜

@lillianortiz-davila2990

Жыл бұрын

@@CecilyLivingBeyondtheBag ppq

It's "from the frying pan into the fire." But you got the general idea. Your cats are adorbs and so are you.

I am really impressed with your instructional videos for those who need to figure out how to best manage an ostomy. I could have benefited greatly when I had my surgery. That was 40 years ago. I was 36 years of age. Since then the process of living life with an ileostomy has presented many challenges. As we get older our body changes and so the management of the Ostomy skin and general health also changes. I urge you to continue to take your audience with you on your journey. Peace and Blessings.

It may not be easy to have an ostomy, but it is much easier than not getting one. For me, the choice was having an ileostomy or being dead. I can LIVE with this!

You do give me hope as an ostimate. I have also had many complications and your positive attitude about it all is very uplifting.

@CecilyLivingBeyondtheBag

2 жыл бұрын

Thank you so much, Sharlotte! Never give up hope-I think that’s the most important thing we have. You all give me hope, too 💜

Thanks for your video. Being "all over the place" helped my wife and I since we are "newbies." I'm six months out. I'm not able to change my apparatus due to my stroke(23 years post with left side weakness). We did pick up on the sure seal which will help with my leaks as we continue to experiment with finding the "best fit" with products:. Wafer, bag, stoma paste, etc. Anyway I just wanted to thank you. Good luck in school! Your experience of life with a stoma is my experience too. UC to Chrone's Colitis to no colon has been a challenge for this 70 year old but life is better. Hang in there.

I very recently saw your you tube videos and I must tell you you are truly inspiring and have been so very helpful in the short time I have been following your channel. I’ve had my ileostomy now for almost 1 1/2 yrs… I had 4 bowel surgeries due to diverticular disease. My reversal did not go well.. more structures developed and long story short I have decided to keep my ostomy as it truly has given me much better quality of life 👍 Thank you so much for sharing your story and taking the time out of your busy life to make these You Tube videos. I have subscribed to your channel and look forward to seeing more of your videos. I’ve learned so much from you and a few other young adult ostomates.. happy to hear you are doing better and thank you again Cecily for sharing your story 💗😊

March 2022 I had a permanent colonostomy due to cancer. I had less than 2 weeks notice. I have resisted watching videos etc. Just a quick Thank You. Didn't know how much I needed to see someone else has the same issues.

@paulalutz6645

Жыл бұрын

Love your helpful information. I got a Diaper Genie to keep everything together for trash day.

@sindinhlabathi5739

Жыл бұрын

We are in a same boat did mine in February had Virginia Fistula due to cancer it was hard it still even hard because some days it does come back

@sindinhlabathi5739

Жыл бұрын

February 2023

Thank you!! We have a friend and this helps so much, self care is so important 🙏🙏 I’m glad more education now ❤

Yet again another super informative honest video from you, thank you! Why does that always happen - you've got your manky nag off given eventing a nice clean, crusted the stoma the skin is nice and dry and so ready for the bag and all of a sudden your output decides to make an appearance! Not Just once but continuously until you somehow manage to quickly slap that pouch on after yet 100 more wipes and cleans and crusting! 🤬 Watching you go through the same issues that I do is making me feel so emotional in a cathartic way.. I really needed that because not even my stoma nurse understands! You're a gem, I totally understand the fatigue as I'm knocked out half the time uncontrollably.. lots of love from me in the UK 🇬🇧 ❤️

You are wonderful and so informative! Thank you for taking the time to do this for those of us who live this nightmare!

Thank you so much for your videos. I’m getting a loop ileostomy soon and you have helped me navigate all my fears and have given me confidence when it comes time to change my bag.

Hi! I just met you, I love how chatty you are and how you just keep rolling on while doing what you need to do - this was very interesting and I can't imagine being so chill - really want to hear more from you.

Your video wasn't all over the place at all. It was great. Thank you so much!

I’m 3 weeks in, but I’ve had 4 picc lines in the past. Thank you so much! Y’all are amazing! Thank you!

I am so grateful you, young lady. I feel grateful today that I discovered you. Thank you.

Thank you for being so real. I just had emergency surgery for diverticulitis with perforation. Got this ostomy and it is a real inny, the flat bags were not working after 2 weeks. Had 3 blowouts in 1 days, my belly skin under is in horrible shape. Watching your videos has truly given me some peace of mind.

That Active Lifestyle seal ring looks like a great extra item to use when traveling etc. You have a lot more products available in the US than we have in Europe. I’ll have to find a store that could ship me some of these. Thanks for the video update 😊 Greetings from Norway 🇳🇴

@CecilyLivingBeyondtheBag

2 жыл бұрын

Hi Trond! Thanks for your comment...I'm so frustrated that you can't get Sure Seal rings in Norway. While I hope that a nearby medical supplies store might be able to ship you some of these, you've inspired me to film a video about how to dupe the rings with normal tegaderm. I want you to have something like Sure Seal rings for traveling because they really help with leak prevention when you're changing diet, getting on and off airplanes, sleeping in hotel rooms, swimming, showering, and just about everything! Stay tuned for that 💜

@TrondOleJensen

2 жыл бұрын

@@CecilyLivingBeyondtheBag I’m looking forward seeing your videos. I just want to thank you for making videos like this one 😊 I remember watching another youtuber just before my surgery, she was probably 16/17 when she made a video just like this one showing all the steps with cleaning and changing the bag. Because of this when the stoma nurse came to my room and said it’s time to change the bag i had on since the surgery, I told her that I wanted to do everything myself and she could watch and help if needed. She was surprised and told me she never had experienced anyone taking charge of stoma so fast after the surgery. So i have to thank you and other youtubers for making such awesome videos that helps people getting ready for their stoma surgery and hint and tips along the way. Thanks 😊 🌹

@CecilyLivingBeyondtheBag

2 жыл бұрын

@@TrondOleJensen that’s so awesome! I’m really impressed that you changed it on your own for the first time…something I wish I’d done in retrospect. Very cool 😎 I’m so happy that someone was there to help guide you through the process. I didn’t find that on KZread for a while…and it really does help. Thanks for this comment-it made me smile.

Love your informational vids!

Don't have a stoma but you gave me so many ideas for dealing with my continuous glucose monitor, which really irritates my skin and falls off all the time. I'm gonna try out the powder for sure. Thank you for making this, it was super educational!

So glad to see you back, I have had my Ileostomy since January and I really liked your videos as I prepared for surgery. I really liked those sure seals, will definitely will be ordering them. Keep smiling and thanks for the update.

@CecilyLivingBeyondtheBag

2 жыл бұрын

Hi Mike! The SureSeal rings are absolutely great, so I’m glad you’re going to try them. The surgery is always really intimidating-there’s a lot to accept in a very short amount of time. I hope it went well and that your recovery was swift. It makes my heart sing to know that my videos were there in your pre-surgical life. Thanks so much for sharing a part of your story with me. It means a lot 💜

Just found your channel. I am a 58 year old woman who was diagnosed with Crohn’s at the end of 2020 and have had an ileostomy since 10/21. I love the SureSeal rings and they have been a godsend when I got peristomal pyoderma Gangrenosum. Sending you positive thoughts and a big virtual hug!

I just have to say ur kitty is adorable. Love black cats 🐈‍⬛. Me and husband are both disabled and retired and have alot of health issues as well. We share are home with 2 beautiful black cats, 1 male, 1 female and they are definitely are fur babies. Animals bring so much companionship and comfort to so many people. Thank you for being so open about ur challenges and problems. Iam sure ur helping more people then u even relieze. God bless you

Thank you so much for your valuable and visual insights.

Thank you for sharing the helpful information 🙏

You are an amazing young woman you will give a lot of comfort to many people,god bless you,

"blowouts are an inevitability, they will happen"....this was the first video I saw after I started to change the bag on my own and I was experiencing blowouts and I was so frustrated, hearing you say that was a turning point for me, everything was downhill after that, great leak stopping advice

I've never had any kind of stoma, just trying to get some education! However, I did want to say, I'm always amazed at how great nurses are. I'd walk into work hating my life (and it's customer service based!) Yet these people have such patience and never make me feel like I'm just a number. There must be nurses who hate it, but if so, they're damn good actors!😄

Hi Cecily…Great To See You Again 😊….Great Informative Video….Thank You

I had a regular ostomy for several years but since I'm physically active at work and home, I had a lot of blowouts. Finally, after a couple years of off and on research, I had my ostomy converted to a BCIR. It's not without problems but much less trouble and worry than wearing a bag.

@mrswvcobra

Жыл бұрын

Where was your BCIR performed?

Hey, Rhode Island is a great place!

Your wafer is much more complicated than mine. I’ve had a colostomy for 21 years. I gently pull off old wafer , wash area, apply skin barrier , add new wafer ,pouch and all done

@CecilyLivingBeyondtheBag

2 жыл бұрын

Hi Judith! That's so cool. If you don't mind me asking, what brand of bag/wafer do you use? I feel that Coloplast's two-piece systems are definitely a bit more complicated than Hollister's, so that might be the difference in our routines. It's great to hear from veteran ostomates like you...it gives me and all the new ostomates who read your comment hope that this lifestyle is sustainable. Thanks for sharing! 👏

Cecily, you rock, girl. I so appreciate you! I've had a colostomy and urostomy since September 28th, 2015, due to recurrent gynecological cancer. I'm going to try the sure seal rings. I know this video is a year old, but I hope you are doing well! I struggle with depression and anxiety since my cancer surgery. Two ostomies has been such a challenge. But we have to persevere! I hope you're close to finishing school as well. Go, YOU!

@bollytollymovieextra8987

6 ай бұрын

Mam I ve had a colostomy and urostomy

Thank you for your video,I don’t have this illness but like to know how others cope with these illnesses.I’m watching a year since your illness Hope Celia you are in much better health and able to cope day to day.Stay safe.❤️

I do the TP trick, too. To curb the odor, I put a few drops of essential oil on it. Some activated charcoal works, too. The velcro doesn't always hold up, so I use little clips to secure, and it works great. Just for info.

I use teraderm skin tape and alcohol-free baby wipes. They're so affordable and the teraderm can be easily custom-cut. Teraderm skin tape keeps my skin dry and no sweat because it's a breathable skin tape. Not more skin rash and so light on the skin that you don't feel it. Most of all, it is waterproof and the ileostomy bag sticks to it permanently. I can shower without any worries. I use a bidet to wash off the inner bag and my stoma while wearing the bag. Kneel down beside the toilet seat and use the bidet to spray the inside of the bag and stoma. Just make sure the water pressure is not too high.

I was just in the hospital this past Sunday coz I coughed up a blood clot. All my labs, chest X-ray and CT Scan came back negative. I have a follow up appointment tomorrow with my GP. I’m like you, still have more questions than answers. I know this video came out awhile ago, but just seeing it now. Hope you are doing well.

Oh gosh I'm sorry: I cracked up when you said it kept outputting the whole time you were talking. (And the Spiderman character?!) - Sorry, cracking up again at the continued output comment and blurred stoma. You gotta admit, it's funny. Your outlook is very inspiring, though. In fact, your whole life is inspiring.

Wow so I have had my ostomy for about 3 weeks/ nearly a month and I just stumbled across this video and within the first 45sec I exhaled. It feels very good to come across a community that I can ask any question I may have about my ostomy, it feels like it has already been so much change in my life, since my cancer diagnosis. I just want to say thank you so much, for making these videos. I'm still just learning what all of the products are and how they are used, so I'm guessing you can imagine how incredible t is for me to see your content.

I use same pouch system for the same reason. Have trouble with the same type of leakage from the spout, too. But, like you, sticking with Coloplast. 👍

Good for you, Cecily!!

@joannemcintyre7413

5 ай бұрын

Hi there. Hope u can help. I was given a colonoscopy bag after flesh eating disease. They gave me two holes and mucus come out of the other. Have u heard of this?

Thanks for this video, Im about to get a surgery and its not reversible, but I’m still trying other ways maybe I won’t have to get a surgery, I still watch ur videos so I’ll be ready just incase, be strong & continue to inspire us

You are truly kind to show us how you change your pouch. Me, if I left my stoma unprotected for 15 minutes before reapplying the wafer and pouch I would have an output mess. I have to prepare everything I need in advance before removing my appliance quickly remove it, clean, dry and slap on the new one. You have a cute little stoma, mine is much larger. And the only pouches that work for me are coloplast two piece. If I were younger I’d ask you out but I’m not so please just accept the compliment.

Goodness, blow outs seem to happen with the 2 piece products. I have had an ileostomy since 1985 and have never had a blow out. I use the one piece Convatec product. Less expensive, simpler to apply and easy to flush. Change out about every 3-4 days. Easy peasy.

@J.G.817

4 ай бұрын

Same,have the one piece also,work great,no blowouts, better having the urostomy then being in the ground.✌️👍

Im very upset about getting a colostomy bag.I have a very weak stomache and not sure i can handle it but im tired of not going anywhere because of accidents.Its affecting my marriage.Thank you for your knowledge

My name is tom I got my stoma last year I the middle of January through February I was in a care home since March I love with my sister and her husband and kids she helps me to change my bag thank you for helping me in to get use to mine ❤

MAY GOD BLESS YOU. THANK YOU FOR THIS INFO

Thank you for the video. Please define retraction for those of us who aren’t in the know yet. Please DO mention the good brands and products bc need all the help we can get from veterans😊

I'm learning about the ostomy bag and now it works

Fold the end opposite of 2 dot hook n loop ie an envelope When emptying fold it to to hook n loop dots. So it will not get get soiled. I use an elastic belt. I use skin tak too. Let it dry

Very helpful video, I'm just going to try Coloplast so that helped a lot. I feel confident I will get it on successfully 💕

Thank you great video.

You are awesome Thankyou so much❤

Beautiful ✨

I love your kitty!

Hello Cecily. I just found you. I’m new to this 1st emergency operation day before thanksgiving 2022 2 nd one was March 28 an 29th. That one tried to kill me. The nurses I had for the most part sucked. I found that a my 20 oz gateraid bottle will help to cover stoma when leaking when you’re trying to change everything. Also I use the 2 piece click on If you wet a paper towel an wipe the rings it helps hook up bag. I am trying to get a Stoma Genie for the big change so I can use soap an water to help skin I have a high output bag so I prep everything so I can do it fast I also have small sticky plastic that I put around like your big ones A lot of things I learned on my own. Thank You for your videos. I have a ilostomy so I have to change a bandage on left side also. Small hole but the belt goes right through so i build it up a little. When I use gator aid bottle had to balance it on corner of sink top so I could go faster. Thanks again ✌️✌️🇺🇸🇺🇸

I had to laugh when you got surprised. I named mine "Sneaky Pete" and now you know why. It will catch you not paying attention and bingo, gotcha !!

My nurse suggested using Pam cooking spray on the inside of my bag to prevent some of the pancaking .

Hi Cecily, I use the Coloplast rig just like yours, including the deep convex baseplate; however, I haven't been using the ring. I went a long time with no issues or blowouts but recently have been having a LOT of blowouts and I wonder if the ring would make a difference? What do you think? Thanks and bravo to you for being so brave and for your very helpful videos. I see you still have a picc line; I hope all is well, love. Cheers.

Love your video! I’m very new at iliostomy world! Would you list the pouch you used?? I’m using Coloplast.

What are your foot restrictions hun? My husband has had a bag for a year now. Good for you, for doing all of these videos. Bless

I started out with a bag ,it leaked all the time ,so I had the Dr.to put a jay pouch in my body so much better for me.

I have a leak at the end of the bag, also. My solution is to fold two squares of toilet paper and fold that into the Velcro as I roll it up, and leave it there, after every emptying. Works great!

I watched it again. Thank u

I cut my wafer off center to help it not be on the scar so much I use mineral oil which is cheap compared to baby oil and use deodorizer to help prevent smelly things. Now there is a thing called stomacloak which has charcoal imbedded to help with odor. Washable works pretty well

Reversed here, but found the spray easiest to remove bag, spray wiat 30 to 60 seconds and come off easy peasy, my stoma was good only in the morning when I first woke up.

@CecilyLivingBeyondtheBag

2 жыл бұрын

I totally agree, Cann! The spray is simply the best. For some reason mine were delayed in my most recent Edgepark order so I didn't have them on hand for the video but I wish I had. It's great for protecting the peristomal skin from denuding. Thanks for the tip and congratulations on your reversal! I hope you're doing well 💜

Fantastic information. My surgery is in two days. What does the marshmallow mean? What kind of bag do you use? It looked as if it carried all your needs? I want to be prepared and you are my source of information. Thank you

Is it okay for the lubricant to touch the stoma? That would help but thought maybe it shouldn't go against the stoma. I'm new to this. Thank you for information. Still having a lot of leaks. Keep getting new things to try. Thanks again

hello thanks for updates //I had to live with this for so long, its nice to see you doing great //its not been easy, for me at 14 years old , and doing the best I can in life , Jobs, money ,and my trade hydraulic , and work 7 days a week ,and marriage , its not easy on dates //lol

Very helpful video ty for sharing! Come back to wow lol !

I have one too… i wish i could give u a hug we have come along way

You can get the spray to takeoff the bag

I have had leakage on the far end of my bag. I use two part.

I can drink beer and its been ok for me 1 or 2 beer a in a day is all I drink , no blow out ,//I use the Hollister 8770 clips with CONVATEC SUR FIT Natura 1 1/2 drainables //I find it easy for me as I still rebuild car engines at my age and I have a 1960 Willys Jeep C J 5 i am rebuilding //so try Convatec 1 1/4 .

My stoma output leaks out of the stoma loads when I change My bag.. I use stoma power to cover over any sore skin touching my stoma & it's frustrating when Iv put the powder on & output leaks as I have to keep wiping & cleaning the skin again & again each time which makes the skin very sore x

12 mins with your stoma behaving... I was like what devilry.... How you get it to behave so well. Don't know if this helps anyone but i find that on mornings when i wake up my gut is like still asleep... So i can get a 20 mins of peace to try to execute a change... The worst luck i have had was 1hr 45mins... Trying to change... Because after every wipe... Boop... Out it came and i had to wipe again....

Can u make more videos of changing the bags please.

I have been using them for at least7 years can't live without them. I also use a magnum bag and love the plug to empty to protect my skin due to itching. my wound nurse told me to use floventHFA MY GU doc gives me the Rx. USO's o useCavilon then skin tac in my abdomen liquid adhesive to help prevent leaks. I also get wafers cut or I use new Hope hole😊 cutter I use protective seal convex (New) and use a brava ring in the outside ring to help with leaks. I also infuse 2 liters a day. I'm looking into pic covers. Any suggestions I do more and use other products would love to chat so glad your on

@megschloss554

Жыл бұрын

What do you use for a pick cover

Were you not a candidate for the "J loop" or whatever the surgery is called where a way to reconnect the rectum ?

Where can I go to obtain a sample of the C-19 for further study?

Where did you get the wall shelves?

What a Godsent! Thanks so much! I remember those college days; I recommend not putting your career (studies) first, if that makes any sense. ☺

Hi Cecily, I have been watching your videos and you are so strong and positive. My name is Neil, I have had a colostomy, it prolapsed i then had further surgery and have had my colon removed and now have a iliostomy. I have a question for you my output is just liquid and I are going to the bathroom 10 to 12 times a day, do you have any advice? You are truly an INSPIRATION.. Keep up with the videos and I hope that you are staying well.

@user-uu7tb7oj9i

Жыл бұрын

Hello Neil , I have a temporary loop ileostomy, I’ve had for 5 months now due to endometriosis in my rectum that was removed (bowel resection) surgeon is waiting for it to heal before I am clear for a reversal… but since you have an ileostomy , your stool will always be watery, soft etc because it doesn’t make it to the large intestines which normally hardens poo, but I realized that every time I eat rice, bread, cake etc my output is more of a pasty consistency.. and I try to reduce how much I eat thus fewer trips to the bathroom .. it used to be 10+ times for me per day , but now I’m down to about 5-7 times emptying daily ..

@carmenfernandez830

5 ай бұрын

White rice. Marshmallows.green plantain.potatoe.kitkat candy. Espagueti with Alfredo sauce. Don't drink any soda o juice after eat wait half hour.and used desitin in around you estoma.after all powder and skin barrier just around no to much.

What do you do about gas? I have a lot of gas my bag swells up embarrasses me, when I make all these noises.

Hey cecily what are your little shelves in your bathroom called and. Where can I get them

@CecilyLivingBeyondtheBag

2 жыл бұрын

Hi Amanda! Great question....I linked the shelves in the description but I'll leave it here as well. They are "Command Wall and Cabinet Organizer, Satin Nickel" shelves and can be found on Amazon at www.amazon.com/Command-Cabinet-Organizer-1-Organizer-BATH37-SN-ES/dp/B01C60CAYU/ref=sr_1_1_sspa?dchild=1&keywords=3m+command+shelf&qid=1628027809&sr=8-1-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEyMEJDWExMOVZBOU9FJmVuY3J5cHRlZElkPUEwNjgwMzA5MTNUR1pOUTJKN0ZLUyZlbmNyeXB0ZWRBZElkPUEwODk5MjM0MTZEREpDMTVVTVpETyZ3aWRnZXROYW1lPXNwX2F0ZiZhY3Rpb249Y2xpY2tSZWRpcmVjdCZkb05vdExvZ0NsaWNrPXRydWU%3D I cannot recommend them enough! They've really streamlined my bag-changing process.

My husband has an ileostomy and is not able to change his bag. He has sooo many blowouts. He has deep skin creases a hernia and a horribly prolapsed stoma. I have talked with wound clinic, Coloplast, Convatec nurses and nothing seems to help. We are both in ours seventies and it seems more than we can stand. I dont know where else to turn.

Very informative. Love your cat. Please wash your hands after touching your cat before you change your bag though. Cats carry a lot of germs. Do you wear a pouch/belt when you leave your home?

Hi 😊😊great video.....👍👍

@CecilyLivingBeyondtheBag

2 жыл бұрын

Thank you so much ☺️

I’m a Caregiver for my wife and leakage has been a problem

Hi Cecile, thank you so much for this video. My home nurse brought me the Coloplast Brava Elastic Barrier Strips. They are such a security for bedtime. Remember I had a colonoscopy. I am trying the coloplast 2 piece click. I realized I needed to be able to see my retracted stoma and it might give me a heads up on if I am getting a wafer infiltrate. Thanks for your love ❤️ for us. God bless you…

@CecilyLivingBeyondtheBag

2 жыл бұрын

Hi Linda! I always love reading your sweet comments. I think that the elastic strips are a great option for extra security over night. I hope that you can sleep better knowing that you have an extra layer of leak protection. I totally agree that a 2-piece system is preferable for someone like you with a retracted stoma. Having the ability to see the stoma as you are placing the bag is a huge advantage over 1-piece systems. Please keep me updated and let me know if you are still having trouble with leaks. You can get through this...I promise. Sending love your way, as always 💜

@Gimo76

2 жыл бұрын

@@CecilyLivingBeyondtheBag what I get from visiting you is a dose of strength to just chill. And I hope that we can strengthen each other thru all these challenges. I get down so much that I surprise myself because I have always been the upbeat one. Just like you it is hard to always be upbeat in this situation BUT we can do it. Keep up the great work.

@CecilyLivingBeyondtheBag

2 жыл бұрын

You really do help me too, Linda. Very few ostomates that I’ve met on KZread also struggle with retractions, so talking to you makes me feel much less alone. I lost my optimism for a long time after I first became an ostomate-but time really does help. I hope that you can get some surgical intervention so it’s easier to keep a bag on. I know how hard it is to live with sleepless nights and leaky days…but you’re adapting and I’m so proud of you. Keep your head up 💜💜💜

@Gimo76

2 жыл бұрын

@@CecilyLivingBeyondtheBag well now I get a new challenge. This week I have been having terrible cramping it has gotten worse each day. My stoma opening in my skin is shrinking still. So I get up have my coffee and the stool starts but it is so skinny less than half licorice rope and I think the stool is backing up or maybe not able to get out as fast as it wants. It made me really feel sick this morning. I have no idea if this is normal. I did however get a recommendation from Dr on call that she would get me an appt next week with my surgeon. He told me that if he has to do a stoma revision he might as well just hook me back up so not sure what will happen. Later today I tried my third irrigation and about 250 of water never came out. Maybe my colon needed a drink of water. I have not felt well today and wonder how much is physical or mental. I do have high anxiety but never felt like this. Darn I am whining but am also unsure of what is really happening. it has been almost 12 weeks post op. I am not totally healed from the Hartmans procedure yet. 💕

@Gimo76

2 жыл бұрын

@@CecilyLivingBeyondtheBag hello you. Ok so I emptied my bag which is still on after 2 days YAH, but it stinks. Normally the only time I have odor is when I empty and it is not this bad. Does the bags get permeated or something? My home nurse is ordering me some bag deodorizer. When you talk about getting down after 1 yr of 2 bouts diverticulitis 9 UTI’s then diverticulitis again, then the rupture it started in June 2020 and I had my surgery June 2021. 1 yr of antibiotics I just didn’t think it could get worse. I actually asked the good Lord where was the line to surrender as I just can’t do this. BUT as usual I slapped myself, metaphorical of course and am trying to be the positive person I am. For one week though I had the biggest pity party. So now I tell myself I get to have a pity party once a month. I can get in the shower and cry my eyes out. It actually feels good. 💗

Anyone got any suggestions on things that really work for odour tried everything for 7 years now and nothing works

Hi cecily I've had and I only asked me for about a year and two months because my pelvic floor stopped working and my colon basically just quit on me so they removed all but 5% of my: colon and they did s pelvic floor muscle release andstill couldn't go to the bathroom so I finally decided on the ileostomy and I'm so glad it did because it saved my life I was contemplating suicide before that because this had been going on for at least three and a half years and it was awful so thank you for your videos they're very helpful I just wanted to let you know that they're switching me to the two-piece cool plath's ensure Mio bags right now I'm in a one-piece I'm a little bit nervous about the two-piece cuz I'm in a wheelchair I also have cerebral palsy so you know I've had to adapt to all this stuff going on so I'm a little bit nervous my question to you is do you like the two-piece better than the one piece and also does your insurance pay for your lubricating ostomy deodorant because mine doesn't and I was just wondering if you had any idea of where I can get it at a cheaper price Amazon charges $20 just for one bottle and I just wanted to know if you knew of any place that sells ostomy things a little bit cheaper that your insurance won't pay for

@amandapilla2363

2 жыл бұрын

An ilieostomy

@amandapilla2363

2 жыл бұрын

Also. I was wondering why do you have a picc line is it just for hydration purposes

You said you had multiple ostomies? I'm on my second. I'm a reostomste after j pouch failure

Use a blow dryer to help it dry quicker