I have had an ostomy for 12 years now. The single best thing I have done is keeping the site clean. When I change my wafer I use a Lysol or Clorox sanitizer wipe on the area, let it air dry. Try not to allow your bag to get more than half full. If you are prone to diarrhea or very loose stool, I recommend a drainable pouch. If you change your wafer too often OR wait too long, you can damage the skin so figure out how often you should change the wafer - for me it is three days. On the lighter side, I was at a meeting and had a lot of gas. I tried pressing my hand over my bagged stoma under my pants. I pressed real hard to hold back and the gas passed anyway, sounding like when you pinch the end of a balloon the air whistles out. I had thirty faces suddenly turn to me. All I could do was say "Well, at least I bagged it." The roar of laughter was such a relief to an otherwise embarrassing moment.
not an ostomate myself but a relatively new wound ostomy nurse. what you do is quite helpful, as it also helps neophytes like myself coach patients through this change in their lives. thank you very much
Thank you so much for all of your videos! This channel and LetstalkIBD have made the idea of getting an Ostomy much less scary! My surgery is in a few weeks and I am actually looking forward to it! I will feel so much better and I know that there are others out there who I can chat with and learn from! I have learned so much from your videos and thank you so much for them! xoxo
I feel so thankful that there are people like you who are willing to share your experiences! I now have a permanent colostomy. It’s certainly an adjustment! I had an illeostomy 17 yrs ago but had it reversed after three months. I’m now less than two weeks in recovery. I can’t thank you enough for the emotional support!!!
I like to shower without my appliance every 5 days or so. This gives me an opportunity to really clean around my stoma feels really good. Eric as a new ostomite your videos are really helpful. I just want to say thank you.
@@VeganOstomy I have a temporary one (HOPEFULLY TEMP I think the reversal success rate is in the 90%). had mine ileostomy for 2 months now. supposed to have removed late july/early august(probably aug). had a fever 3 different times in a week. thought I had covid, that came back negative. finally went to dr later in the week. did blood test he said white blood cell count was 20,000+ said appendix probably ruptured. well he was right. sent me for a ct scan immediately. came back positive for busted appendix(no pain). sent straight to hospital. had it taken out that night had so much infection surgeon said I walked around for a week without knowing it. had another CT scan the next day. detected appendix/colon cancer so I had to have it removed and part of colon don't know how much they take out I didn't even think to ask not that it matters.stayed in the hospital for 14days (because of all the infection otherwise I would have been out in about 4 days) 1 month later after a 3rd Ct scan w/contrast which caused me to throw up,that was fun. I finally find out it was low grade stage2 colon cancer something called a carcinoid "something" weird name, and that's what caused the appendix to burst. Blessing in disguise,because if it didn't I would never have known. so that TYPE is usually cured if caught early like mine with surgery and removed. no chemo or radiation any of that crap dr said he's had patients that had the same thing removed and cancer free for 20+ years usually in older people and i'm 36 with no history of anything family wise. don't drink or smoke,just overweight, no medication for anything not even over the counter and that happens..so yea been a fun ride. if 2020 was a video game it would be E.T for the atari 2600..
Thank you for creating this channel - seriously considering the horizontal bag method as recommended in a different video. I've been an ostomate for about 4 months now and wear a Hollister 18104 - I do an appliance change twice a week (Thursdays and Sundays) and have not had a leak in a couple of months. I use the Adept barrier rings from Hollister as well. What determines if I need to change the appliance sooner than scheduled is if I can see the ring starting to come up around my stoma inside the bag and starting to shred. Then I know that it should be changed the next morning. I use also use a hernia support belt which keeps good pressure on the wafer which has led to less leaking overall.
Thank you so much ...wish I had known about you a year ago....learned by trial and error. Better late than never though. Great service for the ostomy community.
I change mine twice a week - Tuesdays and Fridays - unless I get a leak. Works for me! Kermit (my stoma) tends to go to sleep during the middle part of the day so I can change his bag easily with no problems.
Eric, i do not have a stoma, however a very dear friend of mine has had one for years. I have found your information very informative. Maggie also has very good information. Hope i never need a stoma, however i like to be well informed....
I have noticed that after I took a shower I would get that itchy feeling and think I needed to change my appliance.. They are suppose to be able to get wet but there was something about it once the flange got wet my skin did not like it.. So I have started to cover my bag when I take showers so that I could wear my appliances longer.. I have been using Press and Seal with tape and it has works well enough that instead of two days I can get 4 days which I like
thanks excellent tips....my personal tip is please change appliance for me atleast 4/5days., and i say ofcourse depends ALL on your food intakes., more you eat the more you have to empty., with plastic spray bottle to keep bags really clean hygenically...never a dull moment with ostomy bags.
Sylvia Dias, I have mine for 6 months now and every time I empty, I like it clean. What do you mean with the plastic spray bottle? I use a one peice bag. Can you please explain further? Thank you!
Your Tips are great and Im always learning many new things about my 2 stoma pounches (Urologystoma 5 years and Colostoma 2 years). Keep up Your fantastic coments. Friðrik living in Iceland.
Good information I'm about 7 months post surgery and I have never really ran on how many days I have had my appliance. Being a little lazy about the whole thing I just keep inspecting it and evaluating if it all of the adhesive parts are still sticking to my skin. The other reason I change my bag and usually my appliance is smell, no one else seems to notice but if I start detecting oder I will do a complete change.
This has been really helpful. I'm 2 weeks out of surgery and still trying to figure everything out. Mine isn't shrinking yet! I actually have to cut the precut bags a little more a week on. Hopefully it all calms down and settles in soon.
Thanks for watching! Recovery can feel slow, and you may even continue to adjust a year or two down the road, but it does get easier and "normal" sort of just happens :) Be well.
Does your mom have an ileostomy or colostomy? Diet for the first 4-6 weeks following surgery should be kept pretty basic like low-fiber, no food that would be difficult to digest (I.e. mushrooms, raw cabbage, etc.). Does your mom have a stoma nurse who can offer personalized dietary advice? Best of luck.
@@22romashka I kept it really simple for I think the first month and then I just HAD to start having fruit because I was losing my mind. Found out at around my 6 week stoma dietician follow up that I was supposed to stick to the list that I had been given in the hospital and by the stoma nurses, but nobody told me that so I didn't realise! Luckily I've had no blockages and a couple of months down the track I eat fruit every day, have had a curry!! I eat well cooked veges, sushi, and dumplings regularly, even have a cheeky slow cooked beef and mushroom pie every now and then. In the beginning though it was definitely a lot of mashed potato, pumpkin, well cooked peeled courgette, chicken, yoghurt, pasta etc. I also had fortisip regularly because I don't have much of an appetite due to chron's. Thankfully I can have cheese so that helped a lot. I have cheese on crumpets for breakfast/lunch just about every day - yum! I hope your mum recovers well. Don't be afraid to ask the stoma nurses about anything, and ask about the possibility of things like nutritional supplements if you need to.
@@VeganOstomy hi dear thank you for getting back to me. Mum has a colostomy. And we just found out it’s fallopian tubes cancer stage 3 which spread to colon. We will do chemotherapy in 2 weeks. But for now we just recovering from hospital and struggling with limited food choices. Mum needs to gain weight but with ostomy it seems very difficult. I wish you all the best! And thank you for all your help and support for all of us! 🙏🏻
Vegan Ostomy Yes, its gotten easier. I had 3 visits to the wound clinic. I am having mine reversed in another month. Your channel has helped so much thank you!
I'm 5 weeks out of surgery, and hopefully am going to have this reversed in early February. The best solution for me I've found now is to mold an Eakin ring round my stoma to keep skin irritation way down and keep the thing actually secured to my skin. In fact when I take the bag off the seal is on there so good I needed to cut the hair around my stoma to remove the adhesive. I change every 4-5 days, when I shower, so I can clean the stoma. I can't wait to get this thing off. I have no idea how you guys with permanent ones live with them. It's so messy and annoying and stress-inducing when bags leak and it's at a time of day when it keeps outputting and I have to reapply a new bag. I hate it so much.
I do wish you well with your reversal. I often feel that having a permanent ostomy is easier than having one that's temporary. With a permanent ostomy, all the time and energy that we put into looking for products that work, and building on experience are things that will benefit us for life, but doing these things when you have a temporary ostomy must just feel like a chore. Good luck!
I've had a Illestomy since 1991.....If you Smell anything change it....If it Itches Change it....I only go 3 Days and change it. Any Longer and the Hair grows and it HURTS to get it Off...If you think something is wrong change it before you're going down the road and you have a leak....🤔🤔🤔🤔
Hair was a problem for me until I started using an epilator and/or tweezing the area around my stoma. I have a video on this process : ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-c1F08ZO7JRk.html
My mom had chrons and has had her ileostomy since 1991 too. Ironically her youngest daughter (me) has to wear a template ileostomy due to rectal cancer.
We have been changing mine every other day for a couple of weeks due to hyper granulation. Oddly, we changed it last night and I had decide to try a thin belt due to haw convex my stoma is. Within an hour, I had a leak 😕 it was upsetting because I am having trouble finding a belt that works for me. I see it in my mind and I am going to try to make one for myself. Before the hyper granulation, we were changing it about every third day. The wound care nurse told my husband he was doing an excellent job and should become an wound care nurse. I also get burning and we know it's time to change. Itching usually occurs around the outside of the wafer, the edges. I enjoy your videos and I'm glad that I started watching before I had the bag put on. It took away some of my anxiety, watching you and Meghan eased a lot of my fears. Keep up the good work, I appreciate you🎶✌️❤️✌🎶
Thanks for watching! Sorry to hear about your issues with hyper granulation. Thin belts can be frustrating and may cause leaks due to how they pull on a small part of the appliance. An alternative is the Nu-Hope belt I reviewed, which puts pressure around the entire flange, not just on the sides. ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-UFWMMK2tKVM.html
I just tonight watched The Front Butt RU-vidr (Megan) and am going to order one of those NuHope belts. The Hollister belts are just 1" wide elastic and it twists and sometimes feels more like a tourniquet than anything resembling a belt. Your videos are very good, Eric! TONS of great valuable information! Thank you for the time and effort you put into them. I'm 68 (soon to be 69), female, married, Stage 3 Rectal Cancer survivor, colostomy is going to be 3 on April 1, 2017, so I'm not so new - but I sure do enjoy your videos. Very nice job! Five gold stars!!!!!!
You have to take great care regarding the "smell" issue as to when to change your bag, because YOU can get "used to" the smell (most unfortunately). I ALWAYS use an inner bag Deodorant at every empty. COLOPLAST BRAVA do a great Lubricating one, that helps stop pancaking at the top of the bag. SALTS UK do a No Roma Deodorant, which has NO SMELL whatsoever. It neutralises the odour. Hope this helps. Teddy UK
I always change it every 2 days. The idea of leaving it on any longer just seems unacceptable and gross to me. Frank has been with me for 4 months now.
Yeah, I left my last appliance on *WAY* longer than I should have *(Probably a little over a week.)* purely because the flange was really holding on, and the skin surrounding my stoma.... Was close to the same color as the stoma, but thankfully and also surprisingly, cleaning it didn't hurt as bad as I thought it would.
Wow. Does your appliance rub against your close or is the bag just tearing when you open it to release gas? I imagine that this can become quite problematic for you.
Some people have luck with those products, but they are not recommended for the skin under your wafer or close your stoma. On a side note, I wonder how effective those products are with course hairs on a man's stomach.
Thanks for the video :). When i had my surgery back in January one of the wound nurses told me to change every three days. It was a nightmare haha first i don't like to see blood, and seeing my stoma redish color made me wanted to faint or pass out. It is getting better even though i have had leakings and bad days. It has been times when i had it for 7 days without a problem on my skin!!! :) :)
7 days is wonderful! I've had some long stretches before, but I find that my skin really doesn't like me going over the 4 or 5 day mark. I hope you're doing well!
+Olga Herrera I don't find it comfortable to sleep on my stomach anymore (I used to do it all the time before my surgery). I suspect it would be uncomfortable as the bag fills (and could result in a leak).
The very first time I saw my stoma was in the hospital when my ostomy nurse and I changed the barrier and pouch. She and I were all alone because I wasn't sure how I'd react when I saw my stoma. I looked at it and said, "Why, she looks like a little rosebud!" and from that time on, my stoma was named Rosebud. She is not an ugly colostomy. I think she's rather cute. So little and she looks just like a rosebud. I don't mind looking at her at all. Become acquainted with your stoma, misscrisstie. She will soon become your best friend. The better care you take of your stoma, the fewer problems you're going to have. Learn her quirks. All her edges, her color, her shape. Inspect her every time you change barriers. Take care of her like you would your best friend -- because she is!!!!! Best wishes! We've all been where you are. You are not alone.
Well I am doing is when changing my appliance is spraying this cleaner they sent me and the stoma powder is amazing my skin around the stoma looks really good
Can you give me the name of the cleaner you use? I'm very interested in knowing! Also, are you putting anything on top of the powder (like a barrier wipe) or do you dust it off?
This can be a good strategy if the cost of supplies isn't too much. It can also be better for skin health, provided that the wafer you are using isn't too aggressive. Thanks for commenting!
Geez, this sounds so scary to me...sorry, you do a great job explaining everything, but I'm still scared...I don't have as ostomy as yet, but I know I'm facing one...should have already been done, but I've dragged my feet too much. I've had disgestive problems all my life...really intestional problems, to be more precise...I hate the thought of all of this...I don't have enough small bowel left, after numerous surgeries & they've already told me to expect a colostomy. I'm older now too, soon to be 74...I'm just worried about the surgery, last big surgery, I died in ICU...thank goodness they were able to catch it in time & saved me, but I'm still terrifed of all of it...I'm just so sick of doctors & I'm alone now too. My late hubby & I lost our only child, when she was almost 8 mos old & then 20 years later, he died from cancer, caused when he was stationed in Vietnam during the war there, in the mid 60's...he had cancer 3 times from that & the 3rd time, it took his life, so I've seen so much medical, besides my own & I don't like what I've seen & personally, what I've had to go through. I'll most likely come back here, to watch more of your videos, when I finally get my nerves together enough to get through all of this. I've watched 2 of your videos so far & they've been helpful, but the overall of it all is still scary. Thank you & Blessings to you & your family too.🙏💖
Janet, thank you for sharing that. I'm sorry that you've had to go through so much, and I understand how you'd rather avoid doctors. But you seem like an incredibly strong person, and I think that after the initial learning curve of having an ostomy, you'll continue life as normal. I was devastated when my GI doc suggested having surgery, but the more I learned, the more comfortable I became with the idea. When I finally had my surgery, I was able to enjoy life again. Have an open conversation with your doctor or surgeon, and explain how you feel. I think that will give you more confidence in moving forward. Best of luck with everything!
Yor Tips on looking under the vefer helps alot to find 2-3 days to change. Thank you Very much for all prógram to stoma topics. Stomathegi with two stopapouch.
Hello Eric. Had to get new computer and cell phone. You were God end in my new relationship with my ileostomy. Ihave found a way to stop night in bed leeks.I have always wear extra pads and pull ups. I am always have a leeky bladder, Incontenent. So I thought of babies i8n my childhood "rubberpants" I get one or more my size is 3X .I send away from a well known on line pass and get in a few days.
I wish there was an plastic closable entry point at the top of the stoma bag to flood the bag with water or oil to relieve the pancaking. Pancaking will eventually cause the bag to be forced off the skin and leak. The other day I made a delicious curry. Chick peas, potato tofu and brocolli. I ate far too much and the chickpeas weren't cooked long enough despite being from a tin. The stoma had a hard time, but managed and the effect was to pancake. It forced the wafer off and it leaked. It took three changes in two days to get the stoma under control and clear the output to a reasonable consistency. Melon which I thought would be ok is full of tiny hair like fibers resembling cotton wool in the output. Blackberries and raspberries have nasty seeds. Blueberries and grapes have indigestible skins. Strawberries are ok. Kiwi fruits have many seeds, but if they are small and young can be OK. Nice and sour.
Should the bag be changed more than the wafer/barrier? I actually take my bag off, thoroughly rinse it out, and quickly wash and dry my stoma and flange around it. I realize this decreases the life of the product, but I do heavy cardio workouts daily, sweat a ton, and generally like to keep my stoma and pouching system as clean as possible. The only issue I've noticed is the breakdown of the wax barrier ring. What is the best strongest wax barrier ring on the market? I've been using Hollisters Cera Plus barrier rings but Coloplast's seem to be a lot steonger and resistant to weter, sweat, heat and the harsh elements of ostomy life.
On a 2pc appliance, many people simply change the wafer and bag together out of convenience. I do know people who will rinse and reuse bags, and that's perfectly fine, provided they are still in good shape. It's a good way to save money and reduce the garbage created. Many people do rinse their bag, as a matter of routine, when emptying the bag. There's no real harm in this, but I do tend to keep water off the opening that my stoma comes out of, just because I know it may create a leak. Barrier rings, and their durability, can vary from person to person. I find that the most durable is the Coloplast Protective Ring (not their standard barrier ring), and many will swear by silicone seals by Trio. Basic barrier rings, like Eakin seals, tend to "melt" after a few days of wear.
There's only one more thing bothering me about my ostomy before I feel ready to gain independence from my mom in terms of caring for my appliance.... How can I reduce anxiety about it hurting when I apply the flange because I find that every time I change it when the flange makes contact with eroded skin.... It always causes a lot more pain for me than it should because I've always been extremely sensitive to touch, and it's always kind of scared me..... Sorry if you're bothered btw that I only ever ask *you* for advice rather than.... My stoma nurse or a doctor but not only have I not seen her, probably since I got my ostomy 4 years ago, but she doesn't even have an ostomy so I find it kind of strange to ask her advice since she can't even relate.
Sorry for the late reply. I broke my shoulder the other day and it's been hard to rely to my messages. There shouldn't be pain when applying your wafer, but that eroded skin is causing it for you now. I wonder if your skin will heal as you care for your own appliance, since it's far more difficult to get a good fit when you're putting it on someone else vs putting it on yourself. That might be something to consider. Good luck 😉
@@VeganOstomy thank you, also I hope you feel better as soon as possible... I can only imagine it'd be pretty hard to care for an ostomy with a broken arm/shoulder.
@@LucysLifeInTheBabyAliveWorld you're welcome. Yes, it certainly has been a bit of a challenge but being adaptable and learning from the experience certainly helped me to figure out new solutions to new problems.
The Reborn Baby Doll Family, ask your doctor for a cream or powder for the eroded skin problem. It helps. I understand because I've had it and it does hurt and burn to the touch.
I have only just got a stoma and love your channel. I just wish you had more visuals, not just be a talking head. Your information is awesome but some of us newbies need to SEE what you talk about, not just hear 🙏🏼 This is an old video, perhaps your newer ones are more visual. Thank you
Thank you for the feedback, Margaret. Yes, I wish I had more visuals on the videos. My written article for each video is linked in each description and tends to have more info than the video. In fact, some of the topics are considerably more detailed in my written articles, since they would create a very long video if I went over everything. Check out some other videos, visit the website, and even consider joining my online forum at veganostomy.ca/community if you have any other questions. Best to you!
If it happens all the time then you could be sensitive to your wafer. I'd suggest having your stoma nurse evaluate your appliance to see if there's one that agrees with your skin more. They will also be able to rule out irritation caused by dry skin or some other product like barrier wipes.
gamaryk hi there did you ever learn why your Stoma is so itchy even after directly changing it ? Mine gets incredibly itchy and no idea why I spend so much more time to clean it all and top tip here. If you have a one piece closed bag pour some water onwards then lay flat !! This will allow the cold water to go upto the Stoma and cool and soothe it also it gives it a mini clean too. I find cooling it helps so so so much!
Yes, you guys have it very lucky over there! In North America we have a lot of emphases put onto trying to keep your appliance on for as long as possible - it's mostly because of costs.
My stoma nurse told me the VERY EXPENSIVE cost of bags in the UK for the NHS. A box of 10 Convex bags costs around £80 and approx £75 for a box of non-convex!! Changing bags daily is an unnecessary luxury that is crippling the NHS. I know we've got to be comfortable and lean, but a daily change is SO wasteful.
Oh no. If you think he might have an infection, please have him see a wound or ostomy nurse. Leaving it untreated can cause ongoing issues. Best of luck!
I'm lucky if I can get every other day to change my bag. Because it starts to leak. I'm in the process of trying samples again because it's starting to leak to often. I'm so frustrated with these leaks. I'm so surprised that people can get 5 days out of a bag.
+Laura Diem It's really important to find an appliance that works consistently for you. Keep sampling to see if you find something better than what you use now.
Vegan Ostomy. Thank you for your replys. Your videos are so helpful. I just started watching you a couple of days ago. Your videos are the most helpful than any other videos I've found. Thank you so much. Please keep up the good work!!! ❤
Laura Diem hello pumpkin I feel for you I really do it’s so so embarrassing isn’t it. When your is leaking is it particularly liquid output or thicker ? Mine does it when I sleep. My fills with gas then off it comes. Have you tried the barrier rings ? Or wagers as some call them. I use one from Hollister and it has ceramics build it so it helps my skin too. Theese guys helps me so so much I used to have a leak daily and now it’s maybe once a fortnight. I tried wearing a bag without a wafer and it came off almost immediately so I went back to the wafers and so much better. If your output is watery add a thickening gel this will thicken it stopping it from leaking. And pancaking well trust me we know immediately if we have pancaking if we do massage it downwards . I get about 4 days out of mine now. And best trick I can tell you is change it when it looks a bit dirty ! I was only changing mine when I had too what I didn’t realise is the wafers disappear into the bag so there effectiveness wares of. Also pay some time to ensuring a really good fit ensure your cutting your bags exactly to your Stoma size . Good luck hunny
Kirt Andrews Thank you for your tips. It is so difficult living with my stoma. Most of my out put is pure liquid. I have many prescription for diarrhea. They don't help a lot. Then when it does turn a little thicker. I get pancackig. I'm so frustrated trying to find the right bag. Those one I'm using now is made Coloplast.. It was working so well And than it just started leaking. So now I'm looking for a new bag again. Thanks again for your help.
Lots depending on where you live. I'd suggest contacting a local ostomy supply shop (brick and mortar), who would likely be able to fit you for the correct size. A stoma nurse can also do this, but going to the shop is often easier, since they can measure you for products they already carry.
Itching and burning are signs of leakage and time to change. It will create skin issues, which are sin breaking down and be very irrited. In order to change my pouch, I would starve myself all day in order to change my ostomy pouch so there is very little or no output. Is there a easier way to do this, I have tried the marshmallows, they help sometimes, but mostly, it's a guessing game, hoping there I are no surprises while changing.
+Frances Lobato Do you have an ileostomy, Frances? I'd hate for you to fast just to get an appliance change done. Are there any "quite times" for your stoma during the day?
The VERY BEST time to change is when you first get up. Don't even have a sip of water, and don't have ANY drink. It's not only food that gets the stoma outputting.....drink does too. I'm dying for a drink when I wake, but force myself to do a change. I get NO output to hinder the change process this way. Hope this helps.....Teddy UK
We have a two piece appliance. Can you remove the bag and shower just with the wafer and give the stomer a good clean then dry off and replace a new bag, is this a good idea or is it a bad practice?? Thanks 🙏
You can, but keep an eye on the area around your stoma to make sure that the wafer doesn't "melt" when you are getting it wet like that. I'd avoid a strong stream of water, but there shouldn't be any dangers or real risks. Many people will shower without the wafer.
OK my wife the person who is shown as the party asking a question is now after 25 days in the hospital after surgery forn a perforated bowl is finally in a nursing home for rehab. what happened today galls me to no end. the "nurse" came in to change her colonostomy bag and cut out the wafer as if she was cutting paper dolls. no measurements nothing she said as long as it is BIG enough thats all that matters. not to measure the stoma is wrong from what i was taught at the hospital. am i wrong or is she full of ????
Regarding measuring, as long as there's only a small gap (a few mm at most) around the stoma then it doesn't matter if you measure or eyeball it. Since the surgery was so recent, I would measure every time since the stoma will likely change size (shrink) for a little while. Best to you both.
@@VeganOstomy THANK YOU this was in the nursing home/rehab center. the way she rough cut the hole almost twice as big as her stoma. I questioned this and got a look of death response.
I am using a two piece Hollister. When I wake up I can smell it. I am changing my bag three times a day. I think it’s the area around the flange that smells. I am cleaning it as much as possible during a bag change. Also using both drops and lubricating deodorant. I tried Coloplast and ConvaTec. They were worse then Hollister for smell. ConvaTec was the worse. Does anyone have tips. Please help.
When you take your wafer off and look at the underside, is there any output on it? Also, does your bag have a filter? If so, is possible that you're smelling something from the filter?
@@VeganOstomy it does have a filter. When I change the flange it is clean underneath. I have tried no filter but I balloon. Maybe I will try no filter. I would rather deal with ballooning. This is my second month of having an ostomy. It is permanent. It was due to radiation damage I needed to have it done. I am adjusting well but feel very very very discouraged by the smell. Everyone says theirs does not smell. I wonder if the output of a person with a colostomy has a stronger odour then someone with an ileostomy? Thank you so very very much for replying. I have found your videos very helpful.
@@michelebreen1705 if the bottom of the wafer is clean, we can assume that any smell is either coming from the filter, outlet, or the coupling (where the bag and wafer connect). If you have a chance to try a 1pc from Hollister, that could rule out the coupling, and if you try a bag without a filter, that would rule out the filter. The outlet can allow smells to escape if you don't clean a few inches from the opening (i.e. just wiping the outlet isn't enough). If you've tried those and still experience smells, it could be coming from the plastic of the bag. If that's the case, try a different brand to see if you still notice anything. Colostomy and ileostomy odours are different, but can be just as strong. We are likely far more sensitive for a while after surgery because we are more focused on the stoma and appliance. It's entirely possible that you don't smell to anyone else, and only you notice it. Let's take things one step at a time and see if we can eliminate any possible sources. :)
Still smell a month later. It’s really bad when I wake up at night. I am doing something wrong. I have tried coloplast Convetec and Hollister. Hollister is the best. I think my main problem is pancaking. My poo will not drop. I change my bag three times a day and my flange every night. I am hoping I can irrigate when I hit the six month mark. Thanks for your videos and all your help.
@@michelebreen1705 Irrigation can help a lot, but you should still be having a better experience in the meantime. If the problem is worse at night, are you able to temporarily sleep on an incline (back raised) to see if helps your output drop to the bottom of the bag while you sleep? A pouch lubricant can also help, but it needs to coat the walls of the inside of the bag.
@@VeganOstomy My friend today I am going home, but I wanted to scream at the doctor when I saw that he didn’t do what I asked about the stoma, my stoma is totally flush with my skin, it does not have a rosette, he says that my stool is normal no fluids, and that is why he did it like that. I have another surgery coming up, and APR I will see if the other doctor moves to create a stoma that won’t be that flush. I believe that will create problems. What do you think?
See how it goes over the next few weeks as the stoma may change size and shape. If it remains flush then you'll likely want to use a convex wafer to help push it out a bit. 👍
I notice that my stoma grows and shrinks at times and the problem is that I cut the hole when its in its normal size. Then when it shrinks some food goes underneath the hole. How can I remedy this, what would you recommend?
How often does it happen? If it's frequent, cut the hole as small as possible (without squeezing your stoma too tight) and see if that helps. Any gap between the stoma and wafer should fill as the wafer swells up when it absorbs fluids. Good luck!
@@VeganOstomy I use a one piece. Its what I was taught with in the hospital and it never gave me problems like this before. I don't use wafers, but as I see do you think I should start using them? I do cut the hole as small as possible but its like the liquid its unsticking around the stoma. No leaking into my clothes but just the fact that food its going underneath its just not healthy for my skin. I thank you so much for taking your time to respond to me. Is this a typical thing probably people go through as well and would a wafer help? Or should I change my appliances all together? Sorry about so many questions. I don't have anyone to talk about this with until I found you! Advise please?😒🤔🥴
If you're using a 1pc, then the wafer (also called a baseplate) is already part of the bag. That's the part that sticks to your skin. A 1pc can be more difficult to apply compared to a 2pc, but you should be able to have a good seal with no leaks. Pay particular attention to the space under the stoma as it can be more challenging to get the hole that your stoma goes through to get close enough to leave no gaps.
@@VeganOstomy thank you so much for the advice. I'm going to try and cut it as small as possible to make sure that there are no leaks. Plus, since I lost almost 20 pounds im busy trying to find out my new size. What do you recommend to gain weight?
For weight gain, I suggest tracking your calories to see how much you're consuming vs how much you should consume for weight gain. Look for higher calorie foods that you're OK with eating, and try to eat more frequent, but smaller meals to be on the safe side. I'd also suggest working with a registered dietician to come up with a safe and sustainable meal plan for weight gain and maintenance after you've reached your target weight. Good luck!
+Cindy Sancinito As long as your skin is in good health, there is no "too long" 😀 9 days is pretty amazing - that's double what most people get. Are you doing anything special when changing your appliance?
After a trial and error period of 18 months I am now able to last for two weeks between wafer changes. I sculpt my wafer to fit my body contours and get good adhesion and I use a hand bidet to empty and clean my bag at least twice per day
Hi Eric Ive have double loop ileostomy as of August 14, 2017. I have viewed all of your videos and I have never heard of this hard mucus ,hard wax balls that’s the best I can put it . So horribly painful I was in the hospital for two days could you please do a video explaining to us because my doctor said it was natural. After viewing as many of the ostomy videos on here that I could I seen many on mucus but never any on the hard painful passing of these so-called wax balls that feels like you’re just dying. After looking on Google I did see very many people inquiring about this but with no one giving them answers if you have experience this I would appreciate your input very very much thank you.
Hi Dawn, I could do a video about the mucus, but it shouldn't be painful to pass! It's possible that you're experiencing pain because of your surgery, but your doctor should the one to diagnose that. Has it gotten better since your surgery?
Vegan Ostomy Eric I have passed the mucus twice before. Then last week my side started to cramp. Then all of a sudden I was doubled over with severe pain. Called my doctor and of course she sent me to the ER and they ran a CAT scan like normal thinking it might have been an obstruction which it was not and then when they saw the stuff I begin to pass which was like big white waxy looking things as big as half the size of a golf ball and some the size of large peas with lots of blood and puss and mucus. They reported back to my surgeon and she replied this was normal. ALL patients not using their colon will get a build up of this material and the only way to rid the body of it was for it to work it’s way out. They did keep me overnight and I did leave next evening. Still having the cramping three days later. Just if you can just advise me if you have ever had these super hard white waxy things. Thanks.
I'm sorry you've had to go through that : ( I've had mucus pass from my rectum after surgery, but it wasn't hard - imagine having a really bad cold and blowing your nose... it was like that. I would trust your surgeon as they would know what's normal for your condition (i.e. why you had the surgery), but I do hope you're feeling better soon.
dawn clements I am experiencing the same symptoms. I've had a CT scan to see if it might be an absess, issues from radiation or surgery, etc. None of those seemed to be the cause. I am learning that proper digestion helps alleviate pain. Drink a lot of liquids, be aware of how much you're eating at a time.
I know this is an older vid..just a few questions. How do I know if I have a clogged filter? I'm using a cohesive ring, my exit hole so to speak sits on the bottom part of my stoma..so when I poo, it will almost always touch my skin. I'm using the cohesive ring, but I have to press it down kind of thin for that area or it goes above the opening. Anyway, any other suggestions as to what I can use? Also because the sticky stuff doesn't always come off with the wafer and is left on my skin. What's the easiest way to remove the leftover sticky stuff left on my skin? Thank you!
Hi, Mary. For the filter, you can usually tell the filter is clogged because it no longer prevents your pouch from filling with gas. Having a stoma that points down can be difficult to manage. Have you consulted with a stoma nurse who can look at it and come up with a plan? I usually use an adhesive remover wipe to remove the sticky residue left over by the cohesive ring. I hope that helps 😀
Vegan Ostomy Thank you, I wondered if I could use the adhesive remover for that. I just had my 5th surgery..one of the things the surgeon did for me was revise my stoma. Mine is small and doesn't stick out alot..I like it that way. I think because I told him I didn't want it up too high, it's still a bit near my skin. I talked to you in October before I went thru all this. Having an Iliostomy is still so new to me!! I should feel better at this point, but I've had one complication after another. Honestly, I'm still a bit in denial about it all. Still trying to except this. I wish I had someone who I could go to, or they come to me for tips. In till then, I search your video's for answers. I do appreciate you!!
Gas is normal and a good sign. I was told to chew gum every once in a while and to walk in order to get things going. I don't recall being given antibiotics after surgery. I hope you have a speedy recovery!
