I am a nurse studying ostomy care, and I am loving your videos!! Especially the one about things you wish your nurse told you! I will be recommending your channel to my patients!
Useful tip from ostomy nurse - As soon as your new supplies arrive, sit and close all the velcro closures of your bags. It prevents forgetting and having a mess. Yes, I speak from experience. 😊
What a great tip! I do exactly that whenever I open a new Coloplast box. It only takes a few minutes and saves so much hassle. Thank you for sharing that suggestion.
For those that may come upon my comment, a suggestion for disposable trash bags to use in a stoma bag change, is dollar store dog poop bags. They come in a roll of maybe 10; compact and pretty much perfectly sized for a small zip-loc screw top container. Instant portable trash can.
I really wish i had found ur page when i first came out of surgery i had a emergency ileostomy they took my entire colon(large intestines) the coloplast rings are so much better than any other product i personally use the holister 2 piece bags i have found that the shape of my stomach after my surgery is all screwed up bec i had a full midline incision and of course had a major complication and my entire stomach dehissed ( busted open after the staples were removed) it was supper scary i was stuck in the hospital and rehab center for 3 months absolutely crazy a very big pain in the front ass! Btw my new fav saying
My husband just had surgery...your vids are so informative, and oh so helpful at making this new situation not so scary....having cancer is bad enuff. TY Cecily SO much!
Hi Luna! Thank you so much for your kind words. I know that you and your husband will adjust to the ostomy lifestyle over time. It's hard, but the day is always darkest before the dawn. Your support for your partner through something as devastating as cancer is beyond inspiring; he's blessed to have you by his side. Know that I'm praying for you both and am here if you have pressing questions. 💜
I’m facing APR surgery & a permanent colostomy in about a month. It’s REALLY SCARY. But your tips and confidence helps me to see I can be ‘normal’ again.
Hi again Fonda! You will absolutely feel normal again, albeit a new type of normal. I've never looked back and I know you'll get through this. Be sure to rest and take it slow while you're recovering. Wishing you the very best 💜
Read & learn as much as you can, pre-surgery, this helped me immensely, look at diagrams, learn about how you might look, or expect you may look post surgery, this can be a big hurdle to get over, then you can concentrate on learning how to manage your new way of life. An important point is to always prepare all the items you’ll need when changing your appliance, no room for messy errors 🤔👌
Where were you when I first came home with this ostomy? Omg I am so glad I found you. I am having a horrible time keeping my bag sealed and this video helped a lot. Great job and thank you for sharing your tips.
I wish I came across this video shortly after my ileostomy surgery. .. I totally 100% agree with every one of your points of advice, as I have discovered slowly and very stressfuly at times not getting any support of help that I need. I only used to get generic textbook responses which were useless my my specific needs especially the watery output and inflammation on my peristomal skin.. I also struggle to use my hands too much and when you have an emergency leak you have to navigate your way around getting yours stoma station set up. Like you I also use the heat mat for the pain but to warm the bag while I get by products ready.. thank you so much I found watching this quite emotional as I still haven't accepted my stoma and find it quite challenging to learn to live with. I love your positive attitude in helping others, people like me. With much love from the UK 🇬🇧 ❤️ 💕
You are awesome! Thank for this video. pro-tip for post-op cough pillows: the squashmallow pillows from FiveBelow are amazing. I use three to sleep- one one my illeostomy, one between my knees to lift my hips/less ab pressure, and one by my chest to prop my arm a bit (same concept to prop body for less pressure in ab area. Great tips! They also have handled indoor/outdoor pillows that travel better. $5 each and they wash well. Much ❤
you are so beautiful explaining this so clearly & u are so right I don't have an ostomy but have had 3 operations and you just try to get smarter at what u have to do after surgery to make your life better keep up with the great vids ....
Great video! A family member is getting an ostomy soon so I'm trying to absorb all the info I can to be the best support system for her. Your videos are going to help both of us get ready for this huge life change. Thank you for your videos!
My son came home with hollister clear bags, which really help when he came home , but since then we have change to coloplast 2 piece system. I was thankful he had an ostomy nurse. He also try the pre cut wafers. He is also using a closed ended pouch.
I also came home with the Hollister bags! They can be great for post-op recovery so he can keep an eye on his stoma's color and shape--which are critical measures of stoma health in the first few weeks post-op. Coloplast, in my opinion, is the best brand for newbies like your son because their adhesives are well-suited for sensitive skin, which is usually a problem for people who are new to having an ostomy. I love their two piece systems, and I'm sure his ostomy nurse is doing a great job of helping him manage the process of buying supplies. If he ever wants more bag suggestions, let me know! I've tried quite a few of them.
Hi Sue! I'm so glad my video was helpful to you. You and your husband are in my thoughts...I know that the first few weeks are the hardest. As someone who's recovered from a lot of abdominal surgeries, I can say that having loved ones who want to help and support post-op is absolutely essential. Please let me know if you or your husband have any burning questions as he recovers. Wishing you both the best! ❤
Great tips! My ostomy is now 6 weeks old. Really prefer two piece but the one piece by convatec doesn’t have the stiff end opening on them so seems messier in the whole process. In the last two weeks I’ve added a new twist to the whole process. Evidently I have a bit of a prolapse going on. My stoma all goes down during the night to a normal but grows when I am on my feet. Surgeon wasn’t any help. As long as color was what it should be and working ok, guess I’m suppose to put up with it. Sure would love to hear from more who are dealing with this too. Makes it very challenging changing appliance. Really wanting to use coloplast but the two samples I got, the one piece leaked and other two piece I couldn’t get into place as stoma kept growing. 😩. Thank goodness for all you who share your knowledge with others as you sure don’t get info like this from doctors or hospitals.
Fantastic video, I love the Coloplast free box they sent me. The scissors fit my man fingers. Grin. I absolutely agree that the one piece system I received has made it easier to adapt. Thank you so much for doing these videos.
Yay! I’m quite partial to Coloplast so I’m glad to hear that they sent you some free goodies. 😊 One-piece bags definitely make life easier in my opinion. How have you been feeling since your operation? Have they removed your staples yet?
Cecily Living_Beyond the Bag no, had to go back into hospital for abscess and UTI, have another drain put in, not able to walk yet. Ostomy working great and I am able to take care or it, just need to get the pain to subside from the Barbie Butt now. Hanging in there. The 47 staples look great, nice clean line. I will keep smiling, you do the same.
Oh no! I’m so sorry that you’re back in the hospital but at least the stoma is working well. A positive attitude is the best medicine and you’ve got that in spades. Please rest up and keep me posted! ❤️
Thanks so much for this very helpful information. I am a month out from emergency surgery and still struggling to adapt to my new lifestyle. I appreciate that you share your experience.
I am so glad it was helpful! I know that preparing for a surgery is intimidating, but I know you can get through it. It really helps to go in to the hospital with a solid plan for recovery at home. Do you know if you're getting an open or laparoscopic operation? Usually laparoscopy means a shorter recovery time. Sending love and prayers for a safe operation ❤️
@@CecilyLivingBeyondtheBag thx for the reply. The surgeon indicated that he will try to perform it via keyholes, but admitted that since I have had so many other abdominal surgeries (all open), that he will likely have to resort to open this time, as well. Curious whether you brought clothes to change into after you felt up to it, or did you just stay in hospital gown the whole time.
@@lisamilliren Hi again Lisa, I am so sorry for my delayed response. RUclips is not great with comment notifications for replies. I am glad to hear that your operation might be a little less invasive than a fully open surgery, but I had the same issue with my surgeon after my first two operations. They rarely want to take a chance on laparoscopy when one's internal anatomy may have changed from previous operations--a frustrating but understandable standard. I brought clothes to change into only for the car ride from the hospital. I used their gowns and just doubled up on them, meaning that I wore one gown in the front and another to cover up the back. I also always brought lots of clean underwear so I could feel more comfortable in my gowns when nurses and doctors came by to check my wounds. I hope that helps. Please keep me updated on your progress...I'm sure everything will be just fine. 🥰
@@denisezecca-george3496 thanks for checking in! The procedure itself went beautifully and he was able to accomplish it robotically vs. open. He even used my c-section scar to make the larger opening to remove the intestine through; thus, just left with essentially 5 new little 'puncture' scars. Recuperation from the surgery was a breeze with just the expected abdominal/muscle pain and such. My intestines on the other hand decided to revolt post surgery. I developed a delayed ileus 3 days after being discharged and had to be readmitted for a few days with an NG tube (satan's work) and bowel rest. Intestines then decided to go the opposite direction and had extremely high liquid output. Had to be readmitted again a week later for severe dehydration and liver/kidney function impact. I've now been out of the hospital after that admission for 4 days and all has settled down with the help of Imodium. I can't remember the last time I felt this good. No pain. No fatigue. Going on daily walks. No fear of public accidents. I am so grateful for the surgery and kick myself for waiting so long to reclaim a life!
It looks like I'm going into surgery to remove my colon in April due to cancer. Overall, my chief concern is how to manage the wafer and pouch. I'm scared at what I am facing, but your video is a great service announcement. Thank you for the helpful advice.
I’m sorry you have to go in to get your colon removed...I am sure it’s a very intimidating surgery. I know you can do it, though. Practice definitely makes perfect when it comes to managing pouches and wafers. Please don’t hesitate to reach out on my Instagram if you have questions or ever need help. Do you have any idea of what you’ll name your stoma? 😊
Cecily, what a wonderful personal experience that you have chosen to educate and share with others that can actually relate to. I'm actually happy to say I can leave all that behind me presently. Next week will be one year I know that I had my ostomy reversal.
Thank you so much for this information it has been the best I have found I am just getting an ostomy in a couple of weeks and have had a hard time finding info for living with this thing Love the energy and very helpful info Thanks Sherry
The hospital sent me home with Hollister products but I switched to Coloplast SenSura Mio, which I highly recommend. I still use Hollister Adapt paste. The Coloplast Brava elastic barrier strips are a must for me.
Totally agreed, Brett! I love Coloplast bags/wafers and feel that their products are ideal for new ostomates with sensitive peristomal areas. I also think that they are less prone to leakage than Hollister and Convatec products. I think that Hollister does make some incredible products. Like you said, their Adapt paste is great and I really like their barrier rings.
I wish I could express to you how much I appreciate what you've done with your experience-using it to help other people, I mean. I've watched 10+ of your videos today after discharge from the hospital, and that you've spared me so much of the learning curve after the trauma of the last month... You get my vote for a set of wings. Thank you.
After my surgery I went and purchased so many products after information overload….fast forward 3 months later and I don’t use many of the products I purchased. My advice is to wait and see what you might need later(2-3months after surgery).
Hi Cecily, thank you so much for your great advice, i am due to have the opp soon im very nervous. You are fun beautiful and happy, your clips have made me feel i can be me again after surgery life can be happy again.Thank you!
Great video Cecily! I had a permanent colostomy April 17, 2024. I’m still pretty sore and very swollen. I am doing well though. The hospital uses Hollister 2 pc bags. I am interesting in trying the Coloplast Sensura Mia. Your videos are so helpful!
Hi Barbara. I'm facing the same thing. My operation is on the 15th July. Watching these videos by Cecily are helping so much. Gosh she is so brave. Thank you Cecily. I just wanted to check on your progress. Gosh I'm so scared. I'm not brave at all! 😅I hope this finds you well and on your way to a full recovery. - Anita
@@anitahickson4905 Anita, don’t worry you have this!!! There is sooo much information on RUclips and so many people ready to help! Your stoma will be large right after surgery but it won’t stay that large. One of the MOST important things to do is to measure your stoma every time you change your appliance. A good fit is important to prevent leaks. You now have a choice of one or two piece systems. Also you can now add a belt for added security. You will see. You will be an expert in no time!
@@anitahickson4905 I will be thinking of you in July! I was overly radiated during cancer treatment 18 yrs ago. I feel blessed to at least have a way to deal with the problems it created and to realize I have so many others to communicate with!
@@anitahickson4905 hi Anita! By now you have had your surgery. Hope you’re feeling well and doing well with learning how to change your supplies! Remember to always measure your stoma. So important to prevent skin issues and leaks! Thinking of you today as always!
Another great video Cecily. I also use the washable pads. I have 4 of them that I sleep on. They are really good to have and security for me knowing that there under me. Very helpful videos. Love them. Can't wait to see the next one and glad your filming again. Till next time.
Thank you so much, Robert! Your comments always make my day 🥰 I love having the security of a washable pad...I’ve had plenty of blow-outs in my time so they’re pretty much the only reason my mattress has survived. How’s your hernia doing?
@@CecilyLivingBeyondtheBag It's not doing to bad. The pain comes and goes. I see my stoma nurse on the 9th. So let's see what she says. Thank you for asking. I've been having a lot of leaks lately. I'm not sure if it's the hernia or the weight i've put on or both. I'm trying to get better about what I eat and how much. Thank you for commenting back and asking about my hernia. It means a lot to me. I do love your videos. They help out a lot for me. It feels like I'm not the only one going through it. It seems like everyone goes through it but just don't know untill someone posts it or makes a video about. They help me out a lot and thank you very much for putting them out there.
@@rsshorty2828 I'm so glad you're going to see your nurse! I hope she has some helpful suggestions to manage the pain. I don't know if you've ever tried a hernia belt but that might be a good place to start. Medications like Ibuprofen used to help with my pain when I was struggling with a hernia. You could even ask your doctor for a stronger NSAID such as Ketorolac (aka Toradol) if you're experiencing break-through pain. A script is required so a doctor or NP will need to prescribe it. I really appreciate you sharing your struggles with me--it's why I stared my channel in the first place. You're definitely not alone in this, I promise. Please keep me updated and let me know how your appointment goes! ❤️
@@CecilyLivingBeyondtheBag I do wear a hernia belt but it was too late by the time I found a good one. I will ask her about the medication. I also hope she has some suggestions for me too. I definitely will let you know how my appointment goes. Thank you for doing what you do. I really appreciate them and thank you for caring and messaging me back. It means a lot to me.
@@CecilyLivingBeyondtheBag I went and seen my nurse Tuesday. She didn't like the way my hernia looked. She wants me to try a hernia bag which I already tried before and do not like it. She gave my a spray adhesive to spray on my bag before I put it on. She is also putting me on restriction at work for heavy lifting. She also told me it was up too me if I want to get a hernia surgery or not. She said the hernia is stretching my stoma. So a lot to think about. Hope everything is going good for you. Can't wait till next video and thank you so much for listening.
I’m so sorry for my delay in reading this. I hope your surgery went smoothly and that you’re on the road to recovery. Please let me know how you’re doing and if you have any pressing questions. Wishing you many healthy years ahead with your new stoma! 🥰
Hi Sandy! Congratulations on living with an ostomy for two weeks, I know it's a really challenging adjustment to make. While I can't give you a definitive answer to your question, I would suggest that if the odor is especially noticeable you should look into getting a lubricating deodorant. It lines the bag with a soap-like lubricant that smells quite pleasant and has the added benefit of making the bag emptying process much easier. Lubricating deodorants are usually covered by insurance, so you'll be able to order it with your other ostomy supplies. My lubricating deodorant of choice is Coloplast's Brava Lubricating Deodorant (REF# 12061). Hope this helps; sending you best wishes for your recovery 💜
I know that was a year ago, but maybe it was still not sealed perfectly even if it didn't leak. It could be a little opening near the top and and gravity keeps it from leaking most of the time, but gas can still get out. Eventually it would probably leak if that were the case unless it was changed before that happened. That's happened to me around my bellybutton. I'm relatively new to this stuff. Well, just thought I'd say that. Hope you worked it out; no need to reply.
@@Michelle-qd9gm yes, I do keep my bag on usually. Sometimes I clean the peristomal area in the shower with my bag off. My biggest shower tip is to use barrier strips or the SureSeal Rings by Active Lifestyle to ensure that the seal is not weakened by exposure to the water. Don't worry, worst case scenario some stool gets into your shower drain. The water won't bother your stoma at all. Wishing you the best--let me know if you have other questions!
Thank you so much, Roger. 😊 You guys give me inspiration, support, and the feeling that I'm not alone. It truly means the world to me that you're a part of the #GutSquad!
Thank you so much! I think this is an important topic that’s often overlooked. Recovery can be so overwhelming and I’ve learned a lot over the course of my recoveries in multiple hospital systems. I hope my tips help with the initial shock of being discharged after ostomy surgery. I appreciate your feedback. Please feel free to add any of your own suggestions for new ostomates in the comments! 😊
Hi Erik! I'm wishing you and your wife the very best ahead of her operation and hope for a swift recovery. I have no doubt that she'll be just fine...most ostomy operations are safe and successful, but please do remind her to take her time and rest and avoid lifting anything heavy as much as she can for the first few days. I know it can feel so overwhelming at fist but it sounds like you two have got this! Just let me know if you have any questions or need advice. Sending love 💜
Fun facts: the coloplast barrier rings are the only ones that don’t melt with Urostomy (Urine) output. Also Urostomy bags DO NOT come with garbage bags.
@@CecilyLivingBeyondtheBag I don’t have a Urostomy anymore I only had it for two years. I now have what called a MITROFANOFF which is a continent catheterisable stoma. Which is better for me because I had daily issues of the bag falling off, sometimes multiple times a day.
Thank you SO MUCH for your explicit videos and recommendations. I can't wait to employ your marshmallow and powder technique suggestions! I'm about 6 weeks out. I named my ostemy Mr. Gurgle😄 And I refer to the cancer cells as the Amalekites, a Biblical enemy of Israel. It's great to have help Thanks again. You've a great attitude.
You are more than welcome, and congratulations on making it through the first six weeks. I know they’re incredibly challenging-you and Mr. Gurgles should be immensely proud. I absolutely love your creativity. Trust me, having a good sense of humor about chronic illness is sometimes the best medication. You’re brightened my morning with your story…please keep me updated! Sending you much love. 💜
Question about binders. Has anybody used one post op? I didn’t use one after my initial colechtomy, but will be having a reversal in a couple of months. I had a lot of problems with coughing and separation of the incision. Doctor said you could just cut the binder to accommodate your ostomy bag.
Have you heard of ConvaTec products? Their durahesive products cause what i have heard called a "turtleneck" so that you don't need an accessory, AND it is great for skin. I was wondering what your opinion was....
Hi Sandra! I’m so sorry I didn’t see your comment sooner-I hope I can still help. My advice would be to switch to a two-piece system. That way the wafer is distinct from the bag and you can see through the hole you cut in it. As much as I love one-piece systems, they’re not great for stoma visibility. Best of luck! 💜
To install a one-piece, you fold the wafer in half, then you line up the bottom half with your stoma. Then you can unfold the wafer over the rest of your stoma. Hope this makes sense, although you've probably already figured out a solution for yourself.
Hi there, Pat! Well, I think it varies from person to person but my preferred position is sitting upright facing the toilet (i.e., backwards on the seat). That way, any output will fall into the toilet bowl. Some people like to lay down on a waterproof pad and put the bag on that way. Let me know which ends up working for you! 💜
Hi, I'm in my mid 70s and have a urostomy (bladder removed due to cancer) and I can only change when standing in front of a mirror. I can't see the stoma well enough when laid down and my stomach is too scrunched up if I try to do it in a sitting position. I hope this helps!
Wish I’d found you 11 months ago when my husband had his ostomy surgery! Thanks for tips and specifics
I am a nurse studying ostomy care, and I am loving your videos!! Especially the one about things you wish your nurse told you! I will be recommending your channel to my patients!
Useful tip from ostomy nurse - As soon as your new supplies arrive, sit and close all the velcro closures of your bags. It prevents forgetting and having a mess. Yes, I speak from experience. 😊
What a great tip! I do exactly that whenever I open a new Coloplast box. It only takes a few minutes and saves so much hassle. Thank you for sharing that suggestion.
Yes I’ve learned the hard way as well
Great tip. I forgot and what a mess.
Omfg yesss I wish someone had told me that Bec I learned it the hard way and thankfully I wasn't in public
You are brilliant! 👏🏻
Dog poop bag works great, good size and everyone knows to avoid whats inside.
Thank you so much! My ileostomy is in 5 weeks. It's overwhelming, but your videos have helped so much ❤
For those that may come upon my comment, a suggestion for disposable trash bags to use in a stoma bag change, is dollar store dog poop bags. They come in a roll of maybe 10; compact and pretty much perfectly sized for a small zip-loc screw top container. Instant portable trash can.
thank you ..learned a lot. Still overwhelmed....
Thank you, very informative I’m 2wks post op. Still learning. Thank you from Australia 🇦🇺
I just goty bag due to cancer and watching your videos are making it so much easier to understand and how to use them
I use a Diaper Genie to dispose of used ostomy bags. 😊 It's wonderful and hide all smells.
very helpful-thank u soooo much!
I really wish i had found ur page when i first came out of surgery i had a emergency ileostomy they took my entire colon(large intestines) the coloplast rings are so much better than any other product i personally use the holister 2 piece bags i have found that the shape of my stomach after my surgery is all screwed up bec i had a full midline incision and of course had a major complication and my entire stomach dehissed ( busted open after the staples were removed) it was supper scary i was stuck in the hospital and rehab center for 3 months absolutely crazy a very big pain in the front ass! Btw my new fav saying
My husband just had surgery...your vids are so informative, and oh so helpful at making this new situation not so scary....having cancer is bad enuff. TY Cecily SO much!
Hi Luna! Thank you so much for your kind words. I know that you and your husband will adjust to the ostomy lifestyle over time. It's hard, but the day is always darkest before the dawn. Your support for your partner through something as devastating as cancer is beyond inspiring; he's blessed to have you by his side. Know that I'm praying for you both and am here if you have pressing questions. 💜
I’m facing APR surgery & a permanent colostomy in about a month. It’s REALLY SCARY. But your tips and confidence helps me to see I can be ‘normal’ again.
Hi again Fonda! You will absolutely feel normal again, albeit a new type of normal. I've never looked back and I know you'll get through this. Be sure to rest and take it slow while you're recovering. Wishing you the very best 💜
Read & learn as much as you can, pre-surgery, this helped me immensely, look at diagrams, learn about how you might look, or expect you may look post surgery, this can be a big hurdle to get over, then you can concentrate on learning how to manage your new way of life. An important point is to always prepare all the items you’ll need when changing your appliance, no room for messy errors 🤔👌
Where were you when I first came home with this ostomy? Omg I am so glad I found you. I am having a horrible time keeping my bag sealed and this video helped a lot. Great job and thank you for sharing your tips.
I am in the hospital right now. I had my ileostomy yesterday. Thank you so much for posting this video for new ostimates! Such great information.
Wishing u a speedy recovery 🙏🏽
Great information, I just found out I’m about to get an ostomy. I’m so glad to find your channel, thank you so much.
I wish I came across this video shortly after my ileostomy surgery. .. I totally 100% agree with every one of your points of advice, as I have discovered slowly and very stressfuly at times not getting any support of help that I need. I only used to get generic textbook responses which were useless my my specific needs especially the watery output and inflammation on my peristomal skin.. I also struggle to use my hands too much and when you have an emergency leak you have to navigate your way around getting yours stoma station set up. Like you I also use the heat mat for the pain but to warm the bag while I get by products ready.. thank you so much I found watching this quite emotional as I still haven't accepted my stoma and find it quite challenging to learn to live with. I love your positive attitude in helping others, people like me. With much love from the UK 🇬🇧 ❤️ 💕
You are awesome! Thank for this video. pro-tip for post-op cough pillows: the squashmallow pillows from FiveBelow are amazing. I use three to sleep- one one my illeostomy, one between my knees to lift my hips/less ab pressure, and one by my chest to prop my arm a bit (same concept to prop body for less pressure in ab area. Great tips! They also have handled indoor/outdoor pillows that travel better. $5 each and they wash well. Much ❤
you are so beautiful explaining this so clearly & u are so right I don't have an ostomy but have had 3 operations and you just try to get smarter at what u have to do after surgery to make your life better keep up with the great vids ....
You are so right - cough pillows help a lot 😊
Great video! A family member is getting an ostomy soon so I'm trying to absorb all the info I can to be the best support system for her. Your videos are going to help both of us get ready for this huge life change. Thank you for your videos!
My son came home with hollister clear bags, which really help when he came home , but since then we have change to coloplast 2 piece system. I was thankful he had an ostomy nurse. He also try the pre cut wafers. He is also using a closed ended pouch.
I also came home with the Hollister bags! They can be great for post-op recovery so he can keep an eye on his stoma's color and shape--which are critical measures of stoma health in the first few weeks post-op. Coloplast, in my opinion, is the best brand for newbies like your son because their adhesives are well-suited for sensitive skin, which is usually a problem for people who are new to having an ostomy. I love their two piece systems, and I'm sure his ostomy nurse is doing a great job of helping him manage the process of buying supplies. If he ever wants more bag suggestions, let me know! I've tried quite a few of them.
I LOVE my heating pad! ♥️
Omg me too! I’m under one right now actually. It helps me so much with belly pain. 😊
Thankyou, very good info. I've been diagnosed with rectal cancer so I'm studying everything about what I will be having to live with 💙
Was informative and an easy to listen to video.
My husband just had surgery.. Great info.
Thank you..
Hi Sue! I'm so glad my video was helpful to you. You and your husband are in my thoughts...I know that the first few weeks are the hardest. As someone who's recovered from a lot of abdominal surgeries, I can say that having loved ones who want to help and support post-op is absolutely essential. Please let me know if you or your husband have any burning questions as he recovers. Wishing you both the best! ❤
Great tips! My ostomy is now 6 weeks old. Really prefer two piece but the one piece by convatec doesn’t have the stiff end opening on them so seems messier in the whole process. In the last two weeks I’ve added a new twist to the whole process. Evidently I have a bit of a prolapse going on. My stoma all goes down during the night to a normal but grows when I am on my feet. Surgeon wasn’t any help. As long as color was what it should be and working ok, guess I’m suppose to put up with it. Sure would love to hear from more who are dealing with this too. Makes it very challenging changing appliance. Really wanting to use coloplast but the two samples I got, the one piece leaked and other two piece I couldn’t get into place as stoma kept growing. 😩. Thank goodness for all you who share your knowledge with others as you sure don’t get info like this from doctors or hospitals.
Fantastic video, I love the Coloplast free box they sent me. The scissors fit my man fingers. Grin. I absolutely agree that the one piece system I received has made it easier to adapt. Thank you so much for doing these videos.
Yay! I’m quite partial to Coloplast so I’m glad to hear that they sent you some free goodies. 😊 One-piece bags definitely make life easier in my opinion. How have you been feeling since your operation? Have they removed your staples yet?
Cecily Living_Beyond the Bag no, had to go back into hospital for abscess and UTI, have another drain put in, not able to walk yet. Ostomy working great and I am able to take care or it, just need to get the pain to subside from the Barbie Butt now. Hanging in there. The 47 staples look great, nice clean line. I will keep smiling, you do the same.
Oh no! I’m so sorry that you’re back in the hospital but at least the stoma is working well. A positive attitude is the best medicine and you’ve got that in spades. Please rest up and keep me posted! ❤️
Thanks so much for this very helpful information. I am a month out from emergency surgery and still struggling to adapt to my new lifestyle. I appreciate that you share your experience.
Very helpful and timely video. Scheduled for ileostomy in early March. Thx!
I am so glad it was helpful! I know that preparing for a surgery is intimidating, but I know you can get through it. It really helps to go in to the hospital with a solid plan for recovery at home. Do you know if you're getting an open or laparoscopic operation? Usually laparoscopy means a shorter recovery time. Sending love and prayers for a safe operation ❤️
@@CecilyLivingBeyondtheBag thx for the reply. The surgeon indicated that he will try to perform it via keyholes, but admitted that since I have had so many other abdominal surgeries (all open), that he will likely have to resort to open this time, as well. Curious whether you brought clothes to change into after you felt up to it, or did you just stay in hospital gown the whole time.
@@lisamilliren Hi again Lisa, I am so sorry for my delayed response. RUclips is not great with comment notifications for replies. I am glad to hear that your operation might be a little less invasive than a fully open surgery, but I had the same issue with my surgeon after my first two operations. They rarely want to take a chance on laparoscopy when one's internal anatomy may have changed from previous operations--a frustrating but understandable standard. I brought clothes to change into only for the car ride from the hospital. I used their gowns and just doubled up on them, meaning that I wore one gown in the front and another to cover up the back. I also always brought lots of clean underwear so I could feel more comfortable in my gowns when nurses and doctors came by to check my wounds. I hope that helps. Please keep me updated on your progress...I'm sure everything will be just fine. 🥰
@@lisamilliren how did your procedure go? 💜💪💜
@@denisezecca-george3496 thanks for checking in! The procedure itself went beautifully and he was able to accomplish it robotically vs. open. He even used my c-section scar to make the larger opening to remove the intestine through; thus, just left with essentially 5 new little 'puncture' scars. Recuperation from the surgery was a breeze with just the expected abdominal/muscle pain and such.
My intestines on the other hand decided to revolt post surgery. I developed a delayed ileus 3 days after being discharged and had to be readmitted for a few days with an NG tube (satan's work) and bowel rest. Intestines then decided to go the opposite direction and had extremely high liquid output. Had to be readmitted again a week later for severe dehydration and liver/kidney function impact. I've now been out of the hospital after that admission for 4 days and all has settled down with the help of Imodium.
I can't remember the last time I felt this good. No pain. No fatigue. Going on daily walks. No fear of public accidents. I am so grateful for the surgery and kick myself for waiting so long to reclaim a life!
It looks like I'm going into surgery to remove my colon in April due to cancer. Overall, my chief concern is how to manage the wafer and pouch. I'm scared at what I am facing, but your video is a great service announcement. Thank you for the helpful advice.
I’m sorry you have to go in to get your colon removed...I am sure it’s a very intimidating surgery. I know you can do it, though. Practice definitely makes perfect when it comes to managing pouches and wafers. Please don’t hesitate to reach out on my Instagram if you have questions or ever need help. Do you have any idea of what you’ll name your stoma? 😊
@@CecilyLivingBeyondtheBag ī
Cecily, what a wonderful personal experience that you have chosen to educate and share with others that can actually relate to. I'm actually happy to say I can leave all that behind me presently. Next week will be one year I know that I had my ostomy reversal.
My ostomy surgery is tomorrow. I'm pretty scared and videos like these really help to put me at ease.
Thanks
Johan, how did the operation go? How are you feeling?
Thank you so much for this information it has been the best I have found
I am just getting an ostomy in a couple of weeks and have had a hard time finding info for living with this thing
Love the energy and very helpful info
Thanks Sherry
The hospital sent me home with Hollister products but I switched to Coloplast SenSura Mio, which I highly recommend. I still use Hollister Adapt paste. The Coloplast Brava elastic barrier strips are a must for me.
Totally agreed, Brett! I love Coloplast bags/wafers and feel that their products are ideal for new ostomates with sensitive peristomal areas. I also think that they are less prone to leakage than Hollister and Convatec products. I think that Hollister does make some incredible products. Like you said, their Adapt paste is great and I really like their barrier rings.
I wish I could express to you how much I appreciate what you've done with your experience-using it to help other people, I mean.
I've watched 10+ of your videos today after discharge from the hospital, and that you've spared me so much of the learning curve after the trauma of the last month... You get my vote for a set of wings.
Thank you.
Brand new 2nd day out or hospital, thanks for all good tips!
Thank you for your videos! Just got out of surgery a few days ago and all of this is so helpful!!! ❤
After my surgery I went and purchased so many products after information overload….fast forward 3 months later and I don’t use many of the products I purchased. My advice is to wait and see what you might need later(2-3months after surgery).
Useful, ✌
Hi Cecily, thank you so much for your great advice, i am due to have the opp soon im very nervous. You are fun beautiful and happy, your clips have made me feel i can be me again after surgery life can be happy again.Thank you!
Great video Cecily! I had a permanent colostomy April 17, 2024. I’m still pretty sore and very swollen. I am doing well though. The hospital uses Hollister 2 pc bags. I am interesting in trying the Coloplast Sensura Mia. Your videos are so helpful!
Hi Barbara. I'm facing the same thing. My operation is on the 15th July. Watching these videos by Cecily are helping so much. Gosh she is so brave. Thank you Cecily. I just wanted to check on your progress. Gosh I'm so scared. I'm not brave at all! 😅I hope this finds you well and on your way to a full recovery. - Anita
@@anitahickson4905 Anita, don’t worry you have this!!! There is sooo much information on RUclips and so many people ready to help! Your stoma will be large right after surgery but it won’t stay that large. One of the MOST important things to do is to measure your stoma every time you change your appliance. A good fit is important to prevent leaks. You now have a choice of one or two piece systems. Also you can now add a belt for added security. You will see. You will be an expert in no time!
@@anitahickson4905 I will be thinking of you in July! I was overly radiated during cancer treatment 18 yrs ago. I feel blessed to at least have a way to deal with the problems it created and to realize I have so many others to communicate with!
@@anitahickson4905 hi Anita! By now you have had your surgery. Hope you’re feeling well and doing well with learning how to change your supplies! Remember to always measure your stoma. So important to prevent skin issues and leaks! Thinking of you today as always!
Very helpful! Thank you!!!
Diaper genies work great for my ostomy bags
Great info ... my mom had a stoma put in 3 weeks ago. Learning more for her... thank you.😊
Another great video Cecily. I also use the washable pads. I have 4 of them that I sleep on. They are really good to have and security for me knowing that there under me. Very helpful videos. Love them. Can't wait to see the next one and glad your filming again. Till next time.
Thank you so much, Robert! Your comments always make my day 🥰 I love having the security of a washable pad...I’ve had plenty of blow-outs in my time so they’re pretty much the only reason my mattress has survived. How’s your hernia doing?
@@CecilyLivingBeyondtheBag It's not doing to bad. The pain comes and goes. I see my stoma nurse on the 9th. So let's see what she says. Thank you for asking. I've been having a lot of leaks lately. I'm not sure if it's the hernia or the weight i've put on or both. I'm trying to get better about what I eat and how much. Thank you for commenting back and asking about my hernia. It means a lot to me. I do love your videos. They help out a lot for me. It feels like I'm not the only one going through it. It seems like everyone goes through it but just don't know untill someone posts it or makes a video about. They help me out a lot and thank you very much for putting them out there.
@@rsshorty2828 I'm so glad you're going to see your nurse! I hope she has some helpful suggestions to manage the pain. I don't know if you've ever tried a hernia belt but that might be a good place to start. Medications like Ibuprofen used to help with my pain when I was struggling with a hernia. You could even ask your doctor for a stronger NSAID such as Ketorolac (aka Toradol) if you're experiencing break-through pain. A script is required so a doctor or NP will need to prescribe it. I really appreciate you sharing your struggles with me--it's why I stared my channel in the first place. You're definitely not alone in this, I promise. Please keep me updated and let me know how your appointment goes! ❤️
@@CecilyLivingBeyondtheBag I do wear a hernia belt but it was too late by the time I found a good one. I will ask her about the medication. I also hope she has some suggestions for me too. I definitely will let you know how my appointment goes. Thank you for doing what you do. I really appreciate them and thank you for caring and messaging me back. It means a lot to me.
@@CecilyLivingBeyondtheBag I went and seen my nurse Tuesday. She didn't like the way my hernia looked. She wants me to try a hernia bag which I already tried before and do not like it. She gave my a spray adhesive to spray on my bag before I put it on. She is also putting me on restriction at work for heavy lifting. She also told me it was up too me if I want to get a hernia surgery or not. She said the hernia is stretching my stoma. So a lot to think about. Hope everything is going good for you. Can't wait till next video and thank you so much for listening.
Thank you so much.
You're so welcome, Pat! 💖 Very glad that it was helpful to you.
Absolutely terrific. Thanks so much for your video.
High output bags at night have been a game changer!!! ( two piece)
I'll get my colostomy 2 days from now, this helps a LOT, thank you!
I’m so sorry for my delay in reading this. I hope your surgery went smoothly and that you’re on the road to recovery. Please let me know how you’re doing and if you have any pressing questions. Wishing you many healthy years ahead with your new stoma! 🥰
How are you doing a year later???
@@randimayes560 I'm doing great with my ostomy! Traveling a lot after being stuck in my house for 5 years. Living my best life!
Two weeks in. I am checking all RUclips videos to learn more. my question is why I can smell it when it's not full or leaking?
Hi Sandy! Congratulations on living with an ostomy for two weeks, I know it's a really challenging adjustment to make. While I can't give you a definitive answer to your question, I would suggest that if the odor is especially noticeable you should look into getting a lubricating deodorant. It lines the bag with a soap-like lubricant that smells quite pleasant and has the added benefit of making the bag emptying process much easier. Lubricating deodorants are usually covered by insurance, so you'll be able to order it with your other ostomy supplies. My lubricating deodorant of choice is Coloplast's Brava Lubricating Deodorant (REF# 12061). Hope this helps; sending you best wishes for your recovery 💜
I know that was a year ago, but maybe it was still not sealed perfectly even if it didn't leak. It could be a little opening near the top and and gravity keeps it from leaking most of the time, but gas can still get out. Eventually it would probably leak if that were the case unless it was changed before that happened. That's happened to me around my bellybutton. I'm relatively new to this stuff. Well, just thought I'd say that. Hope you worked it out; no need to reply.
Am 3 and a half weeks in after surgery thanks for your info
So happy it was helpful, Michelle! Sorry for my late reply to your comment. How have things been since the operation?
@@CecilyLivingBeyondtheBag hi ups and lots of downs it’s been 8 weeks now and learning about stoma bags every day 😊
@@CecilyLivingBeyondtheBag can I ask you when you shower do you leave your bag on it’s this bit that still scares me 😟
@@CecilyLivingBeyondtheBag hi it’s been 9 weeks next week and learning everyday about my bag it’s a lot to take in xx
@@Michelle-qd9gm yes, I do keep my bag on usually. Sometimes I clean the peristomal area in the shower with my bag off. My biggest shower tip is to use barrier strips or the SureSeal Rings by Active Lifestyle to ensure that the seal is not weakened by exposure to the water. Don't worry, worst case scenario some stool gets into your shower drain. The water won't bother your stoma at all. Wishing you the best--let me know if you have other questions!
thank you so much for what you are doing
Thank you so much, Roger. 😊 You guys give me inspiration, support, and the feeling that I'm not alone. It truly means the world to me that you're a part of the #GutSquad!
Wonderful video!
Thank you so much! I think this is an important topic that’s often overlooked. Recovery can be so overwhelming and I’ve learned a lot over the course of my recoveries in multiple hospital systems. I hope my tips help with the initial shock of being discharged after ostomy surgery. I appreciate your feedback. Please feel free to add any of your own suggestions for new ostomates in the comments! 😊
I bought the toddler pillow on Amazon.
My wife is having surgery in early December. Great video. Amazon cart is getting full 😂 this is great though, she’ll be joining the #Gutsquad
Hi Erik! I'm wishing you and your wife the very best ahead of her operation and hope for a swift recovery. I have no doubt that she'll be just fine...most ostomy operations are safe and successful, but please do remind her to take her time and rest and avoid lifting anything heavy as much as she can for the first few days. I know it can feel so overwhelming at fist but it sounds like you two have got this! Just let me know if you have any questions or need advice. Sending love 💜
Gutsquad????
VERY HELPFUL!!!
Great tips!
Glad it was helpful! 😊
Fun facts: the coloplast barrier rings are the only ones that don’t melt with Urostomy (Urine) output. Also Urostomy bags DO NOT come with garbage bags.
I didn’t know that, Britty! I’m glad to have a urostomate’s perspective 😊
@@CecilyLivingBeyondtheBag I don’t have a Urostomy anymore I only had it for two years. I now have what called a MITROFANOFF which is a continent catheterisable stoma. Which is better for me because I had daily issues of the bag falling off, sometimes multiple times a day.
Oh ty for clarifying…sorry. I’m glad you’re no longer struggling with your bag. I’m sure that was really challenging!
Thank you for all they new info! Its scary😮
Thank you SO MUCH for your explicit videos and recommendations. I can't wait to employ your marshmallow and powder technique suggestions! I'm
about 6 weeks out.
I named my ostemy Mr. Gurgle😄
And I refer to the cancer cells as the Amalekites, a Biblical enemy of Israel.
It's great to have help
Thanks again. You've a great attitude.
You are more than welcome, and congratulations on making it through the first six weeks. I know they’re incredibly challenging-you and Mr. Gurgles should be immensely proud. I absolutely love your creativity. Trust me, having a good sense of humor about chronic illness is sometimes the best medication. You’re brightened my morning with your story…please keep me updated! Sending you much love. 💜
Question about binders. Has anybody used one post op? I didn’t use one after my initial colechtomy, but will be having a reversal in a couple of months. I had a lot of problems with coughing and separation of the incision. Doctor said you could just cut the binder to accommodate your ostomy bag.
Have you heard of ConvaTec products? Their durahesive products cause what i have heard called a "turtleneck" so that you don't need an accessory, AND it is great for skin. I was wondering what your opinion was....
I’m a newbie, I just had my surgery a month ago.I’m learning so much from you, can you sleep on your side.
Informative ❤
What wonderful information you blessings to u
I dont see how to place the waiver with bag attached, over the stoma. I cant see thru the bag where to place it. Thank you.
Hi Sandra! I’m so sorry I didn’t see your comment sooner-I hope I can still help. My advice would be to switch to a two-piece system. That way the wafer is distinct from the bag and you can see through the hole you cut in it. As much as I love one-piece systems, they’re not great for stoma visibility. Best of luck! 💜
To install a one-piece, you fold the wafer in half, then you line up the bottom half with your stoma. Then you can unfold the wafer over the rest of your stoma. Hope this makes sense, although you've probably already figured out a solution for yourself.
Thanx learned a lot
I just found you. Why did you quit making videos? Aldo why did you have several surgeries?
My surgery is in two days.
What is the best position to be in when changing your ag?
Hi there, Pat! Well, I think it varies from person to person but my preferred position is sitting upright facing the toilet (i.e., backwards on the seat). That way, any output will fall into the toilet bowl. Some people like to lay down on a waterproof pad and put the bag on that way. Let me know which ends up working for you! 💜
Hi, I'm in my mid 70s and have a urostomy (bladder removed due to cancer) and I can only change when standing in front of a mirror. I can't see the stoma well enough when laid down and my stomach is too scrunched up if I try to do it in a sitting position. I hope this helps!
Have you had to deal with sibo?
I have actually! I've been treated for SIBO quite a few times with various antibiotics, but the one I found most helpful was Xifaxin.
fortunately I'm not a girl so I didn't qualify for an ostomy.
😩🤢🤮
Why the sick faces ?