Ostomy Must-Haves (& Things You Can Skip!) | Let's Talk IBD

Hi Maggie you are such a joy to listen to. I have had my ileostomy for 2 years and before I had my surgery I watched all of your videos. I binged on all of them learning so much that when it came time for surgery I wasn't scared. You gave me peace knowing that if you could do it at 16 years old I could do it at my age. The surgery was the best thing I ever did for my health. "Winnie" and I are getting along great. I still am having issues with veggies and fruits but trying little by little to add something new into my diet. I ordered my supplies this week and was told that I could get the bags but the flanges were back ordered. I have extra's so I should be alright. Just wanted to thank you for everything you have done for me. You are a breath of fresh air on the days I am down. Big hugs and blessings to you

I know you get so many wonderful comments ♡ but I just wanted to say that I have had crohn's disease since I was 15 (28 now) and you have been the most helpful and compassionate YouTuber on this subject. Idk if it's because you were a lovely nurse for this field or because you go through it yourself, or both... but you are just wonderful and have seriously helped me realize so many things about my conditionin/experience with Crohn's Thank you Maggie and I pray you have such a good life with Zach. He's also made a big impact on me, his love for you I mean. You can see in each video how much he cares for you and your experience in life and that's really inspiring to see someone not only accept you but be there for you completely. He is a blessing as well as your positive attitude :)

I have had an ileostomy for 7 weeks now. The first few bag changes were challenging. I did not have Home Health Care come and help because the one change I did in the hospital was so easy. I do my changes every 4 days and the 2nd & 3rd changes were so difficult because I had so much stickiness left on my skin from the barrier rings. And with my stomach area still healing it did not feel good to press on my skin to clean it up. I used 8 adhesive removal wipes each time and still had residue left. Now I am on my 10th change and there's finally not so much stickiness to remove. I found your channel just over a month ago and have learned a lot from you. One of the best things for me was that even after having your stoma for over 10 years you still needed the stoma powder. I hadn't had any of that so I called and had some shipped out right away having a feeling I might need it during my next bag change. I did. I also had some skin sensitivity happen and remembered you had used a barrier wipe to help with that. So I did that, too and it helped. So I am very grateful to you for having this channel and sharing your information!! 💞

Hi Maggie, really appreciate your comments and suggestions and commend you on ease of speaking about this issue. I am 3 months after the half a year hospital stay and dealing with the ostemy on my own. I got some instruction during the hospital stay but doing it on your own terms at home without nurses assistance it is a completely different game. The supply company had me order products that I was not quite sure if they fit me. The nurses provided me with the products available at the hospital but at that time I was not aware what questions to ask and what products I will need. I received some initial training from the ostemy nurse how to replace the product however nothing matches the situation that you face once alone at home. Everyone's conditions are unique and mine is such that I have lost 40% of my body weight due to surgeries and cancer and my area around stoma is not flat with deep valies and folds from scars and nobody took care to explain what to do with those conditions. I used to have leaks more than 4 times a day every time I changed positioin from siting to standing or laying down, nothing could keep the glue in place and multiple calls to ostomy nurse and visits helped somewhat as well as calling companies and requesting different samples to test and try. I also keep talking to nurses at each company trying to understand how to remedy the condition that I had and also trying to figure out how to keep the products more than a day without leaking and getting frustrated with the whole situation. I watches all of the product videos from Coloplast, Convatec, Hollister and many others online trying to find the best solution. I think I am getting closer to my optimal one but I also talked to some engineers trying to understand how these products could improve and become better. I am still fighting as I may have a permanent colostomy bag to deal with. The provided list is fine and I use all of those items with the exception of couple but for me the most important part are remaining the cleanliness of the body and skin and avoiding any kind of infection. The other issue in front is feeling confident going out to meet people and traveling to destination as well as planning the trips ahead of time. i just took my first trip an hour away from home which took some mental planing and forcing myself to deal with fears of leakage and embarrassment of the situation for the first time. I am slowly learning to deal with this.

Definitely agree that simpler is better. I use a ring, flange, bag, and paper-thin layer of paste. That's it. Took me the better part of a year to figure it out, but I think I'm getting there.

Thank you for all that you do to help new ostomy patients. I am a 63 yo man with a new urostomy bag living in a small place with no stoma nurse nearby (though I can do telehealth with one in LA.) My wife found you for me and your videos have been very helpful.

This is a very informative video especially for those who are new to having an ostomy! You’re the best Maggie!💜

I think strips that wrap around the baseplate (flange) on the outside are also helpful. They keep the flange in place and add more coverage to prevent leaks.

One thing I found really important for me personally is a stoma guard if I’m going to do anything really active. I’m a wheelchair user, so when I go visit my daughter’s horse, I always use a stoma guard. She’s a great girl, but horses like another other living creature, are unpredictable. I’ve been head butted in the stomach when she was saying a boisterous hello, so a guard probably saved my stoma from trauma a few times. I’ve also used it when using a hand cycle, just in case I crashed. Another product that I’ve relied on at times is an ostomy belt. Depending on your body shape and posture, your pouch may need a little help staying snugly attached to your body. Especially if it’s the end of the day and your pouch is getting full. Most pouches have clips for belts to be attached. The other products I consider necessary are skin prep, adhesive remover, and a nicely scented baby oil to spray inside my pouch for preventing pancaking and for odor control. That’s it besides gentle soap and water. Nothing else. The stoma cloak didn’t work for me, I think I’m just too short waisted and being seated 100% of the time made it worse. But everyone is different, and everyone will need to experiment to find what works for them over time.

I've had my ileostomy since 2014 and I am forever grateful that I live in the UK. I've never had to worry about the cost of supplies because they are free on the NHS, including some underwear. The one thing I've found invaluable however, is not free but quite inexpensive. It's liquid gel plaster. I get it from Amazon and a little goes a long way. When the skin around my stoma is raw and weepy the liquid skin covers it and gives it a chance to heal while still allowing the flange to stick, preventing leaks and further sore skin. It works well with the powder too and comes off easily with the spray adhesive remover. I've found very few stoma nurses who know about it.

I use straight °91 isopropyl alcohol soaked bounty paper towels instead of guise to clean any residue between bag changes. Also, I apply my Hollister ring straight onto my bag and form from memory a perfect gasket with the barrier seal. Lastly, I always change my bag standing up over a trash can 1st thing in the morning before eating or drinking. If you have any questions, please feel free to ask!??

Been watching you for years… you do such an amazing job of “ok she’s doing it , so can I” mixed with “I don’t feel great and I’ll honor that” no small task, thank you

You do a fantastic job with your videos. I've been through the wringer. I was diagnosed with UC at the age of 25. My father actually passed away from UC when he was only 26. I had my first surgery the 26th of December, 1986. My doctors didn't think that I would be able to cope with a permanent ileostomy so in May 1987 I was sent to the Mayo clinic to have a J-pouch created. I'm sure that you already know what that is. They had taken part of my small intestine and made a loop with it to slow down my output since my colon was already gone. I'd lost a great deal of weight. I was told by my colon surgeon at the time that since I'd lost so much weight that I had to gain a minimum of 10 pounds before they would schedule my last surgery. It took me from May until the end of September to gain the weight. I then went in for my last surgery, the reconnection in October. So during that time I dealt with 2 temporary ostomies. Flash forward to 2014 I started having issues again and we'd discovered that my original J-pouch was starting to deteriorate. I'd had it for going on 30 years. Well I was sent to the Cleveland clinic to have another J-pouch created. I have basically had nothing but problems with my 2nd J-pouch. It had gotten to the point that I was spending more time in my bathroom than anywhere else. About 3 years ago I started talking to my colon surgeon about going back to an ileostomy. He told me that if that was the way I wanted to go that'd he'd do it but he told me that I needed to think long and hard about it first. I asked why and was informed that I didn't have enough of my small intestine to do another reconnection. Well 2 years ago this April I was in the hospital, had spent the weekend there. First thing Monday morning he walked into my room and asked if I was ready for surgery? I said yes so I've had a permanent ileostomy for almost 2 years now. My surgery was over 5 hours long, he thought it would be no longer than a hour. He had to remove tons of scar tissue because of all my previous surgeries. Unfortunately it's not in the best of places so it's a struggle to get my flanges to stay on my skin. I can get 2 days out of a change if I'm really lucky. Most of the time I am doing good to only change once a day. Then there are the days that I can go through 10 changes of supplies in less than 36 hours. If I would have known back in the 80's what I know now I would have just kept my first ostomy. Or at the very least stopped when I received the ostomy I'd gotten less than 6 years ago. I love how you are always so upbeat on your videos. I know that you probably have your own bad days as well. Watching your videos reminds me that I'm not the only one going through what I'm going through. I also wanted to thank you for reminding newbies that they definitely need to stay hydrated. I fight that on a daily basis. I constantly have something to drink nearby and I have to get 2 fluid infusions a week now. I've also developed CKD. My kidney specialist is a great doctor as well as my colon surgeon. But Dr. G. keeps telling me that I need to worry more about other parts of my body because I can always do dialysis. It's like every time he says that word my kidney levels improve. Needless to say I don't like his other option 😂. Seriously you are a great inspiration to not only myself but to many others. Your videos and your honesty about this subject helps more people than you can imagine.

Hi Maggie! Love watching your videos! You are so down to earth, that when listening to you, I feel as if I am talking to my best friend! Have my stoma for a little over one year, and thanks to videos such as yours, I got so much information on them, that it made it easier for me to adjust to my “new Normal”! Thank you so much, and keep up the good work!!

I use doggie bags for containing and throwing g away old bag etc. My visiting nurse uses them and their cheap and perfect size to know and toss!

Maggie, you are an inspiration to so many of us! Thank you for all the information /educational wisdom! It is a huge help!!!

I've had mine for about 10 years too and you really opened my eyes up on the so I'm more than delighted to follow you

Mind blown seeing the way you change your bag while holding it inside the disposal bag. I've had Vesuvius since 9/29/22 after surgery for rectal cancer. This tip is the best. Thanks so much!

I have only had my stoma about a year and a half. Found your channel somehow along the way. I use Ivory soap which the wound nurse suggested because it is mild and doesn't leave any film/residue. I recommend adhesive wipes and barrier wipes (to new people watching this) I also use the rings because that is what I had in the hospital and what my insurance sent and paid for and I have had very few issues with leaks/detatchments although it has happened a few times. I have a pad to help save the mattress which HAS saved it a couple times. I use a blow dryer after sticking my flange on to help it warm up faster. Question does the deodorant stop the smell you mentioned that sometimes happens after a few days. I notice about day 4 I will sometimes have a little odor so I will try that if it will stop that from happening. I would recommend a SPARE pair of scissors for your travel package that people should carry on day trips/vacations so you don't need to remember them. The other thing people should remember is to NOT leave your travel pack in the car if it is hot because your rings can melt. You know these things so this is mostly for newbies except my question about the drops to kill smells. Thanks for helping us navigate our new reality.

Wonderful info for us newbies. The home health has not mentioned a lot of this. Thank you for information. Hugs