Living a blessed life w/chronic illness & an ileostomy is intentional.
Hi! I'm Karah! And this channel is focused on my experiences, (NOT medical advice) as an ileostomate, IBDer (Inflammatory Bowel Disease aka Crohn's/ulcerative colitis) & w/autoimmune disease. I’m learning how to navigate life with no colon, dodging dehydration & other ai’s. I hope the info here will be helpful to anyone who can relate as a patient or caregiver.
The name: One definition of the name "Karah" means "blessed". Lets be real; Life is not always rosey. "The Karah (blessed) Life" is about being honest & real AND choosing to be grateful for our blessings in all circumstances; choosing to live blessed.
Manufacturers (ostomy & accessories products) I use in USA - to contact them for free samples! - Coloplast: www.coloplast.us - ConvaTec: www.convatec.com - Hollister: www.hollister.com
It's kind of like building layers. If the area around your skin, the "peristomal" skin area, is raw, cracked, red, "crusting" can help by doing layers. The layers together can make a "crust" of protection that also helps to heal the skin. The irritation can happen for a variety of reasons; allergic to the adhesive or even a leak (I love using the barrier spray for that reason). Apply the stoma powder, then spray adhesive, then repeat up to three times (per my original ostomy nurse - love her!). Let each spray layer dry in between. It doesn't take long - use a fan (I use the wafer's packaging as a fan) to speed up the drying. It really works to help heal most irritations in between changes. If it doesn't, contact your doctor's office or ostomy clinic to have them look. My GI told me to send pictures if I need to since I live over two hours from her office. Hope that helps! =)
I am thankful for finding your channel. I have had my ostomy 3 weeks today. We use the same exact brand. I have been having my husband do the changes because I have a hard time seeing what I am doing (belly still very swollen and a bit fat too lol ) and am still freaked out by the sight of my stoma. You made it look easy and i love the low heat tricks for better adhesion. Thank you!
Oh, I'm sooooo glad I could help in any way, Elizabeth!! I totally understand - I actually had known this was probably coming at least a year before it happened. The hospital I was in at the time of my "insight" tried to help me by giving me some samples of pouches. My friends who were visiting me in the hospital, and I, could NOT figure out how to even open or close it (yup). Then, I started researching what a stoma looked like...on RU-vid and also Google for pics. I was not thrilled...it looked like an alien - THE alien! (that's where I got "her" name from..."Ripley") but I forced myself to look at the surgery and pics to try and get used to it. I know I'm not the norm (in many ways LOL) since it didn't take me long to accept it (nor do I have a gag reflex for most things so another "gift" there bc hey - it IS poo...). And, I had no idea I'd do a channel down the road so it does mean a lot to me to know that my experience-sharing is helpful! Hang in there and if I can share another tip - things happen and it's OK! If a leak happens, it's OK! Carry supplies and a change of clothes in your vehicle. If you don't like the sight of your stoma, it's OK! We've survived whatever necessitated it and by this surgery and we are all different in how we approach and accept that "it is what it is, so what do I do with it now?" stuff. The swelling will decrease and maybe taking small steps to help your husband as he helps you can inch you closer to doing more each time - or not! I have heard from many who are quite happy with having someone help as their routine and hey - whatever works to keep your stoma and skin healthy =) After all, that is what got me started here - having a video just for my hubby to help me if/when I needed it. I'm just so grateful its actually turned out to help you & others. *HUGS*
Some bags have narrower openings than others: I use a long narrow funnel that I purchased at an auto parts store to pour the warm water into my bag and sometimes use the long stem to target the top area of the bag if the stuff is sticky there. It was YOUR video that got me started with rinsing, and it helps keep me 'on-top' of things in many different ways. Thanks.
I am new to having a stoma, it’s for a colostomy. I have tried rinsing, it seems to break down my wafer. I’m experimenting with closed bags, I just remove and replace with a clean one.
Hey there! I’ve seen some folks also say that. I honestly think there’s such a wide variety of pouches & wafers out there that maybe some probably do breakdown sooner than others but there’s other factors too like watery content maybe? I know for me, being an ileostomate, I fight not having too much water bc that’s definitely my Kryptonite! A colostomy, generally, by nature of the placement, has that benefit of being a bit more consistent. But - when you have enough supplies to change as much as you need - wooo hoo! That’s great! 👏🏻 Bottom line is really what works for you 😎. Thanks for sharing your experience!! 💜
@@TheKarahLife No - I have rather solid output. I was using Coloplast Sensura Mio Flex two-piece and I was really frustrated with pancaking and accumulation around the stoma - due to the circular pre-filter. I recently discovered I could cut that out, and I’m hoping it will solve a lot of my problems.
@@TheKarahLife Yes! Cutting it out does help, but I also put the sticker over the filter. I think I will leave the sticker off at night, so it will vent, but use it during the day to keep some air in the bag.
Life changing ostemy video! First off, I have never tried facing backwards on the toilet - and wow - doesn't make anywhere near the mess in the toilet bowl. And rinsing is genuis - it will take a couple of times to get all of the stuff from the top of the bag out but way better! I only get about 3 days our of a bag, especially if I am sweating. The ring is usually fine, but the adhesive on the flange itself breaks down and comes off. Thank you so much, new subscriber here!!
Hey Tony - thanks so much for sharing here and subscribing!! And I’m so glad this video has been helpful!! It can take a few times for me too - depending on what is in there…that’s where some gentle “swishing” helps me. If you have one, often, an Ileostomy is generally watery so many folks may not need to rinse but my goal has been to increase my water retention to avoid dehydration so adding more veggies (that’s been slow for me because I don’t want a blockage) and whole grains is helping there. But for anyone else reading this, it is very possible to increase the bulk of the stool, depending on diet. And my ring / wafer 😅can last 2+ weeks (I know - crazy!) but the papery outside edge adhesive is wearing off & peeling usually by a week-ish so that’s where the Hy-Tape (or Pink tape) or Brava type strips work to keep the wafer on. Love that stuff!! It usually buys me more time between full appliance changes too. 🙂
I use a 2 piece bag and flange. I don't see a need for a stoma cover. I take my bag off in the shower and wash it, then hang to dry. Then when I'm done, I use a dry bag. So, I swap back and forth between bags. If I intend to take replace my flange, then I remove it in the shower too. I had a shower water flosser then the head broke off, and now I just use the tube to wash the stoma and area.
@@janicesteele1248 I have heard of folks using mints! Good to know the Altoids have more than one purpose! Inexpensive too 😎 Thanks for sharing, Janice!
Oh please tell! A portable? Can you share the make/model you use? I love the idea of our bidet but it is one that only has the sprayer built in, under the seat area. I’d love to have one in our camper bathroom too (I lug jugs of water bc I don’t trust campground water that much to drink or rinse with it…) 🫣
I immediately ran the stairs down to my mother, opened her pouch to let air in it and closed the filter with the sticker. I hope it works. I'm taking care for my parents 24/7. My mom has a colostoma since April. All went fine untill the last days. I didn't know why this pancaking is happening. By now. If the sticker on the filter works I will be the happiest daughter ever 😅. Fingers crossed. Thanks for your video
I’m so sorry I’m just seeing your comment! For some reason YT put it in pending 🤦🏻♀️. I have to know - did the sticker work? I hope so! I know my “air” increases for many reasons - from types of food & beverages I ingest to how fast I eat. My pancaking can be related to the food and even not having taken in enough fluid. It can be a real challenge when trying to balance nutrition and this challenge. God bless you!! Taking care of both parents is nothing short of selflessness! 🥰
@@TheKarahLifeyes, it worked great. No pancaking anymore. I'm so happy. It's so easy to change the pouch every day. All is clean. No damaged skin. No leaking. I sent an email to the nursing service and told them what they can do to prevent this problem. Unfortunately I've never got an answer. It's so sad that nobody cares. Well. I found the solution here. Thanks for your help ❤😊
Oh my gosh I'm so glad to hear this for your mom - and you!! I'm so glad you reached out to the nursing service but it is too bad you didn't get a response though =( Hopefully it's just an oversight and maybe they will use the info - we can hope =) Sharing here by all of us is helping each other and those who have yet to find us but if they search, they'll find a bunch of us sharing what works for us =)
@PaulMcinnis salads can be tricky! I started eating salad slowly, adding one ingredient each time I had a salad. Is there one particular ingredient that is worse than others? For me that’s raw or undercooked carrots - I have to be very careful of how many of those I eat.
I was so happy to see your video posting. My husband is retiring so we will be on medicare and it costs more. I recently started using 2piece colostomy bag after 6yrs. I always thought the hard plastic ring would hurt. Since I began using this system i feel it helps to support my stoma prolapse . Anyway it looks as if 2piece pouch is more expensive and I now am encouraged to try rinsing the bag to help stretch my budget. Thank you so much. Mary
You are so welcome, Mary! Thanks for sharing here! Whether you have straight Medicare or an advantage plan or a supplement, definitely find out what the allowance is per month - if you haven’t already. My supplier has yet to figure out that they don’t need to call me every month to remind me to order but they still do. I’ve saved a lot of money on my coinsurance, not sacrificing my routine or skin, and I hope you all can as well! 🥰
Hello - I’m not familiar with this product but a Quick Look on Amazon and it appears this is actually used in crafting. I would personally only use products that are specifically for ostomy use & peristomal skin. Anything else can be detrimental to the delicate skin around the stoma. Even just scratching the peristomal skin can irritate it, not to mention a product not specifically designed for it.
Thank you for this. I am about to have a hysterectomy soon for severe adenomyosis and a bowel reconstruction due to severe endometriosis that is invading my bowel. They told me that I will likely wake up with a stoma. I am preparing myself and arming myself with knowledge. Thanks to your video I can go into this with more confidence. I do have a question, how bad does it smell and do you have tips for either reducing the smell or how to learn to cope with it? I have a pretty bad gag reflex and I recently almost threw up trying to get a poo sample for my doctor. 😂
Oh Sheree - that endo is brutal!! I suffered for years and they saw endometriomas were on my colon on CT but thankfully it was just seeing the backside and they were attached to my uterus. My second ever (until 4 years later) colonoscopy was done just to make sure there was no intestinal puncture. I sooooo feel for you!!! My supracervical hysterectomy (2011) was actually six years before my total colectomy (2017) but the good part about all that was, no more endo (ever) & no more pain for the next few years (IBD symptoms started up again in 2014). Good for you in researching before your surgery!! I do have an “odor control” ideas video. I’m not as squeamish as I thought I’d be - I consider that a gift for sure - but I do have some stinky stuff when I rinse - especially a few hours after tuna…cheeses can be pretty bold too for me. If you find yourself really challenged with the odor, I would definitely recommend staying in stock with odor control tabs or liquid, using 24/7. But, you may find you only need it for certain foods. Everyone really is different on the “poop process”. You can also add the odor control to your pouch after you eat. It can take 4-6 hours (on average) for the food to make its way to my pouch. A room deodorizer is a good idea too. I cover all of that in that video 🙂. I also have a video on what to expect when you get home / what to bring to the hospital etc too. I tried to think of sharing about the things I’ve experienced on this journey too. Thanks for the question & kind comments! I hope you’ll keep us posted too. Feel free to reach out anytime! We have so many great folks in this community who have lots of experiences to share here! 💜🙏🏻 Hospital & post op tips: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-ZFDNa6CVucs.htmlsi=5czRcUSKsyPpHt0m ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-Wi9XJzh_zi8.htmlsi=_jPrLJv5jN7ZZYJD Odor control: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-6D2RjYHxZ7c.htmlsi=sq2VXvDfMbPLxrkE
@@TheKarahLife I am sorry that you suffered from endo for years. :( I am so glad you had relief for a few years at least. Is there a relationship at all with endo and IBD? I have unrelated cancer and during the PET scan they found that my ileocaecal valve lit up and enlarged lymph nodes surrounding it. This happens to be exactly where my aunt has Crohns. I also have appendicitis like pain like my aunt did before they opened her up to remove her appendix and found Crohns. They’re telling me I don’t have Crohns and that its the endometriosis causing all my pain, blood in stool, bowel obstructions etc. I will check out your videos! I am not usually a squeamish person around pretty much anything else, just poo. Poo is my thing that I cannot deal with. Not even my animals poop, and definitely not my own haha. Thank you so much for these tips! I am sad that cheese makes it worse, cheese is life!! I really appreciate your kind words, advice and reassurance. Thank you. ❤
@iSheree oh my goodness that’s quite a journey too! I’m so sorry you’re having to deal with multiple concerns!! Hopefully this surgery will answer questions and get you on the healing path!! ♥️ They do look at family with gynecology & GI conditions…have you had gene testing done? I’ve only had blood tests for MTHFR (it came back two copies) but no Lynch tests yet. I need to get that done. It’s more specific to family hx, GYN & GI. They originally thought mine was Crohn’s first - no family hx tho (outside of colorectal cancer - I unfortunately lost my dad to it and his sister - my aunt had it too 🧐). They said they thought that because of how malnourished & underweight I was - and how depleted (and wacky) my electrolytes were but the biopsy came back as ulcerative colitis after the total colectomy. I still have esophagus and stomach / duodenum issues but it’s still not been diagnosed as CD 🤷🏻♀️. My GI doc does check w/the endoscopy every few years tho and checks me for increased inflammation / cellular changes in my rectal sigmoidoscopies which are every 2 years since UC carries that CRC risk. I’ve seen other gals in FB groups ask the same question tho, the “any relationship between endo & IBD?”. I wouldn’t be surprised if the NIH has studies out there. I’ve not looked but it is asked by others so… I wish I had any suggestions for the 💩😭!! Outside of a mask or not breathing through your nose (?) have you asked the doctor for some advice? Maybe spray the area first with something like Odoban? Instead of emptying first, spray first? Hang in there!! Maybe some of the other folks here can chime in!! I’ll go ahead and post for some suggestions in the community tab and see if people will respond with some helpful tips!! 🙂🥰
@@TheKarahLife Thank you, I really hope so too! ❤ I actually saw a genetic oncologist about my family history of cancer and they felt no need to run any tests on my DNA. I had my referral to normal genetics rejected. :( In Australia we can't just ask for certain tests and it is so frustrating! I am sorry you lost your dad and aunt to cancer, it is a cruel disease. I hope you don't get cancer. I am obese due to psych meds, lack of thyroid gland and hormonal/endocrine problems (including insanely high cortisol and inflammatory markers). I can't lose the weight either, I am bleeding all the time so no swimming (which is one of the reasons why I need this hysterectomy so bad) and thats the only exercise I can do due to spina bifida and other health problems... So maybe thats why they wont take me seriously. 😢
@@iSheree oh my goodness yes it can be soooooo frustrating!!!🤦🏻♀️!! I’m so sorry to hear that happens there too 😭!! I haven’t spoken much about this here yet but I’m in testing for adrenal issues again (first time as a teen) as well. Initial I went for memory issues & weight - I was always slender but after my total colectomy and somehow NOT my hysterectomy (earlier) I started putting on weight 🤷🏻♀️ and it’s a beast to lose. I’m completely stuck and they found a RCC or Rathke’s Clef Cyst. Seems it can mess with the pituitary gland function (it’s wedged & it can mess with weight) in but most of my bloodwork is normal (including cortisol) and the cyst isn’t large enough for them to do anything. It is so frustrating when you have multiple concerns - I hear you!! Have they scanned your pituitary gland? It regulates so much in the body…and the inflammatory markers - RF? ANA? But no IBD - but IBD is autoimmune…have they suggested another? Man o man! So let’s get that surgery done soon so you can get to swimming eh?!?!? That’s a wonderful exercise!! Good for the body & soul too!! Oh - and I did a very quick video about swimming at the beach but essentially, these ostomy appliances are designed to get wet from showers & swimming too so if the subject comes up, definitely don’t let that stop you!! I took way too long to go in the water after my surgery but it doesn’t phase me now 😎. You can just towel dry off the wafer and pouch and be sure to bring spares in case you need to change it. There’s Brava strips for extra protection too (yep - I have more videos on those LOL) 🙂🥰.
Thanks for sharing that, Patsy! A bottle of water is all it takes when traveling! Let me & the community know if you decide to try this way too! P.s. my guest bath has a bidet we installed for my husband and there’s a video on my channel for that. He LOVES it but it’s only cold water so I don’t use it AND it sprays from the underside of the seat but if it had a hook up to warm water and a hose, then I would 🙂.
Thank you so much for this video. I just got a stoma three days ago and I'm lying here in my hospital bed learning ostomy care. I found that pouring water in the bag made it so much easier to empty it but I wasn't sure if that was allowed. I asked a couple of my nurses but they said they didn't think that was a good idea. Now I feel so much better. The part about keeping the bag on for up to 15 days as long as the deal is still intact put a huge smile on my face. I was not looking forward to changing this thing every few days. I am a 69 year old with limited feelings in my fingers so changing the bag is going to be a nightmare.
You are so welcome, Jack!! First of all - good for you for doing the research! I found that my journey with this ostomy life has been so much more manageable by getting all the knowledge I can! You’re just beginning and the good part (yep…good) is not only is an ostomy a life-saver - but we learn mainly by “doing”, so, in the beginning, you will likely be getting a lot of practice changing when you either 1) schedule a day or several days to just get the practice OR when a leak starts (always carry extra supply bag when leaving the house). And lots of practice - that’s OK because it’s the “doing” thing, right? 🙂 I’m in my 7th year post total colectomy and tho I do still get that kind of time, it took several months before that 💡 moment happened and I forgot it was actually on. When a leak begins, you’ll start to feel that itch, tickle or “wet” feeling on your skin. In the beginning, incision nerves can be numb so it’ll take a bit, but when you do notice, that’s the time to change. “If it itch, make the switch!” The more you recognize - the easier it will become getting it early. Rinsing - there really are soooooo many opinions are out there. Of course, I can’t comment from a medical standpoint & medical staff are certainly a blessing but I personally know (as many here), that after almost seven years, I’ve never had any negative reactions on my stoma or peristomal skin. If I can get tap water on my stoma by showering (OK’d very early by my surgeon) why can’t I rinse it? 🤷🏻♀️So, that’s been what’s worked for me 🙂. Do you have anyone to help you maybe find an alternative way to change your appliance? There are some “helps” out there like Stoma Genie and a stand/appliance they have that holds the Stoma Genie tube in place to catch output as you prep. All the best of healing to you and feel free to ask questions here - we have a very wonderful RU-vid community 🙏🏻🤗!
Thank you so much! Ostomy wearers are so helpful! I found out that the appliances I was wearing was causing a breakdown of my skin by another ostomate saying she was allergic to the adhesive. Well so am I! It would have been disastrous had I continued to wear that product another month!
Thank you SOOO MUCH for sharing this🙏🏼 I am 1 month and 4 days in with my ostomy and the lubricant only helps so much! I’m developing an obsession problem with my bag almost always being dirty but I keep getting leaks needing to push my stool down it constantly pancakes and gets stuck so im changing my bag every 2 days!
Thanks for sharing but I don’t find any part of my body “ugly”. Was this a correct translation?: “I’m glad the little flower covered that ugly thing... tbm to so.” By the way; I used Google translate. Are you an ostomate or is someone you care for an ostomate? Oh - and the flower is only there because RU-vid has censored a video of mine in the past, but not on all of my videos. I think it’s important to show what a stoma looks like - for those that need to see maybe before surgery or even after. I know I wanted to know but I had to find photos instead.
That’s so sweet of you to share! Thank you! If what I go through can help someone else, the experience is not only not wasted, but to me, can take on a positive aspect 🥰.
Oh hi Bob!! I never thought about olive oil in the pouch. 👍🏻 Glad to hear that that’s working for you - Thank you for sharing all the way from Australia 😎!!
Thank you for your video. This is very new to me and I get so nervous, I still have staples in my stomach for one more week. You made it look so easy, I feel like I can do this. Thank you.
You’re so welcome, Angela!! Yes you can!! I sooooo get it!! It really stressed me the first time I knew (during a hospitalization) that this was probably going to be something I would have to deal with down the road if my symptoms couldn’t get under control otherwise. I couldn’t even figure out how to open or close the sample pouch. They let me put my hands on one to try and make it easier but it was daunting. Then, after changing my appliance by myself (after my ostomy nurse showed me with her doing it), I knew it was just going to take practice. And that’s something we all get plenty of. But that’s also where I got more confidence because of doing it several times a week until I started to get the hang of it and eventually better wear time, less leaks. So having the practice, was actually the blessing in disguise. And then something that occurred to me even though I’ve never had children or changed diapers; it was only poop 💩. It could be cleaned up. My clothes could be washed. I have had a couple of instances where I had a leak outside of home; one was actually at a doctors office and I changed there (my first surgeon follow up appointment ironically), and another time with a group of gals from my church. I wasn’t that far out from the surgery - nervous too and just didn’t want to deal with it so I went home. That stuff happens. And it’s OK. You’re gonna get the hang of it like the hundreds of thousands who’ve gone before us too 🥰.
Just found your channel. I;ve had may ostomy since 88 and 89 and did not rinse because it seemed too messy and bothersome but with your suggestions I think I will try now. Thanks I have a convex stoma. Also I would imagine you also get more wear time because your stoma extends furthur out, or at least it helps. Mine is a lot smaller and if I eat raw vegetables sometimes it can pull in almost flush to my skin so I try and drink a lot of water when I do this.
Thanks for sharing! I have heard that convex can be more challenging for getting and keeping a good seal. Even with a protruding stoma, tho, I know that the thinner my output is, the more likely I am to leak so I do try and eat more fiber now than ever. It’s such a delicate balance. If you decide to try, I hope you let us know how rinsing goes for you! 🥰
My husband has a colostomy for one year. He says no leakage but a smell comes. We can’t decide where it is coming from. Very clean and he rinsing out. Can you help us in some way.
Hi Valerie, thanks for the great question! Is this something that happens every day or is it with certain foods? For myself, I definitely need to make sure that I have an odor neutralizer in my pouch when I expect that tuna sandwich to come through… But that usually only is something that is noticeable when I open the pouch for draining / rinsing. If I can smell odor through my pouch otherwise, it’s time for me to discard the pouch. This is one of the reasons that I do wear a two-piece because if my wafer is in good shape, I only need to pop off that pouch, secure it in a Ziploc bag - or doggie bag, and pop on a new pouch. If there is no obvious leak, then I would question whether or not his pouch itself needs to have an odor neutralizer as well. I made a video on the way that I try to control odor: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-6D2RjYHxZ7c.htmlsi=jyn-7mMP0to_MB-S Hope that helps!!
@@valerielihou5494 I understand! I always tell my husband I want to know because if I don’t know, I can’t do anything about it 😎. I honestly think that if he’s not using some kind of odor neutralizer already that that would be a place to start. We are all so different so it’s hard to pinpoint without knowing what he ate but even before my ileostomy, my poop didn’t smell like flowers! 🤷🏻♀️🙂
I'm all for getting a longer time out of the pouches HVe mine forvthe lastv8 yrs .. If I can get longer wear out of the pouches in in I getb20 pouches a month n sometimes not enough
Yes, I agree if you can safely get more time that will be more than enough wafers. Are you using a one piece? How are you doing with your seal? Are you changing because you have a leak or is it itching? Is your skin doing OK?
I know this video is a couple of years old but it just showed up on my feed and I love seeing how other people manage their ostomies. I had initially tried rinsing my bag after emptying but the seal would fall apart and my bag would always end up leaking. How do you manage to keep the seal intact? Thank you!
Well, yay for RU-vid because “they” feel it’s relevant still to so many people - which is awesome!! I haven’t even considered updating it because it has seemed to help people as is - which is my hope! 🙂 I am inclined to wonder two things when it comes to the wafer breaking down: 1) the manufacturer simply doesn’t have the composition that favors water rinsing. 2) it’s also possible if this happens soon after changing to a fresh appliance/wafer, possibly there was a section of the wafer that may not have adhered as well as the rest. For number one, I have only rinsed since using the ConvaTec moldable wafer/barrier. But I don’t think it’s reasonable to assume everyone that has mentioned rinsing works for them uses what I use. I would say if you were open to trying other products, that would be one I would certainly give a try. But you bring up a great point, because I have heard people mention (some on YT, but mostly in a Facebook group) that it breaks down their wafer, so maybe we can do a poll here and see if we can shed some light on this question! What do people use if they rinse, type of question. So, to number two, I would say, are you able to get a really good seal? What do you notice about timing? Meaning, if you don’t rinse, when do you notice a leak starting or need to change? Or do you have a change routine where you change your appliance on a specific day no matter what? Of course, I rinse all the way up to the wafer by swishing it around in the pouch but even if you wanted to just rinse what’s below the wafer and let the output on the stoma (kinda pancaking…) make its way down naturally. I wonder if that would be a benefit? I would say “yes” for me because it would at least not be as heavy. Thanks for sharing and your question! Maybe we’ll be able to collect some data that will be helpful for everybody!
I rinse mine every time I need to empty I last 7 days . But I never thought about setting backwards on the toilet . That saves splashing and having to clean up
Seven days is great! I can usually sit backwards on the toilet if it’s an oblong toilet, but not some of the older ones - which I have had in an older house that are round. I used a plastic bowl in the sink and then discarded contents down the toilet. I had to do that when I was limited to even sitting the “normal” way (was wearing a full leg cast). I was doing good to empty my bladder!! 🤷🏻♀️ I do still have some splash back, but sometimes what mitigates that is placing toilet paper in the toilet before I empty. it can soften the impact, so to speak 😉. Thanks so much for sharing!!
I was told not to do this by the ostomy nurse saying it'll break down the protective barriers made into the bag....BS...my output would cake so much even using the lubrication. I went back to rinsing every time i empty my bag and like you i get longer wear time. Warm water helps break down the output making for easier emptying. My main problem is my stoma is in my natural waistline crease so i wasn't getting a good seal with using the rings and paste. Last week i experimented with using nothing and found my bag seals so much better. Due to have takedown surgery in May. Can't wait to be able to poop out my own butt again. Prayers all goes well. Blessings to you for validation on rinsing.
🎉 I’m so glad it’s working for you too, Cherie!! 🙌🏻 Thanks so much for sharing!! That’s AWESOME you will be able to move forward with the takedown too!! Absolutely in my prayers - please keep us updated too!! (I know you’re not the only person with a temporary stoma on this channel 🥰).
Hi everyone. I'm sorry I haven't updated prior to this. I've been dealing with my recovery from my takedown surgery. EVERYTHING WENT WELL WITH THE SURGERY and I'm two appointments post op already. Go back on the 1st of July to see the surgeon, but so far so good. Scars have healed and closed. Bowels are getting better and every day without a diaper is a good day. Diet is anything I want to eat except corn, nuts and popcorn. I'm ok with that. I've lost a bunch of weight, which is concerning for the PA's, but I'm ok with it. Went from 150 back in October to 119 this past Monday. I feel good and I'm eating more healthy these days. I've been blessed with a great surgical team and happy that I'm almost myself again. Thank you for your prayers and well wishes. 👍❤😘
YAY!! Thanks for the update Cherie!! Sounds like you’re well on your way to recovering!! When I lost a lot of weight before my colectomy, a friend turned my attention to protein shakes for rebuilding muscle. I’m sure they’ll discuss that at your next visit (if not, maybe they have a nutritionist available?). Please keep us posted!! Prayers continue 💜!!
I also used water to clean my bag. I changed after 7 days because my skin was irritated. I had it for five years. Now I don't have it anymore since I had reconnection of my colon. Thanks for sharing this video.
It is strange to me that my 'health care providers' raise their eyebrows when I ask about something I saw online as if to say do not trust Doctor Google or Nurse RU-vid but then as some of you have mentioned here the medical providers' knowledge is not always geared to the travails of the ostomate. Intuitively I started rinsing my bag a good while ago and it is nice to see I am in good company. I also carry a small bottle of water and deodoriser in a pouch on my handbag to flush my colostomy bag if needed when I am out and about. Use and refill for next time.
Yes!! Good for you, Jo-anne!! 👏🏻 I’m positive, anyone who has checked out at least this channel can tell that there’s no fakery going on (as some healthcare providers may initially insinuate) and primarily because I show everything I can possibly show without getting slapped by RU-vid! That’s why I’m adamant about showing how I personally do what I do. I’m certainly not against the Ostomy nurses on many educational channels that use either mannequin or hold up a plastic. Ostomy mold. It is giving instruction, but there’s no substitute for seeing another ostomate do what we need to see done. I am very visual that way and I know a lot of you are too. This is a big reason that the “peer” or “paraprofessional” idea works; such as in recovery, for instance. (It a kind of “takes one to know one”…) And I believe this is ideal with Ostomy surgery as well. I don’t know any ostomate on this platform or any others that is (unless they are already a licensed medical professional), stating that they or we know more. We are just so much more keenly aware of each other’s walk through life this way. Thanks so much for sharing - keep up the great job!! 💜
It is so thoughtful that people share helpful information. You certainly don’t get this information in the hospital. I had an ostomy for 3 months but now I will need a permanent one. Every bit of information you get from an ostomate is far better than from someone who has never worn one! Thank you sincerely for the help you and others give us!
You’re so welcome, Barbara!! I know my hospital is blessed to have a group with volunteers who will visit new ostomates - if they would like. I was visited by another Crohn’s and colitis patient with an ostomy, and it was very encouraging. I was also blessed to have an ostomy nurse who was actually running the UOAA ustomy support group. She still is. I’m not in a position to volunteer in person, so this was the next best thing that I felt I could do and I’m truly grateful that it is helping folks 🥰. Since my ostomy is stable, and I have no plans to not have it, you could say I’m choosing to be permanent, at least for the foreseeable future. I have a couple of ideas for new videos, but honestly - just about everything that I have already done here is the best of what I have to offer so far since my ostomy is stable. But if you don’t see something in my videos, and you do have questions, don’t hesitate to ask. There is something special about being a peer to peer advocate in other medical disciplines, and I see it here with us of a special importance that we can not only encourage each other, but literally see how we manage with an ostomy - which is where the videos have been helpful to me too. 🙂
After 6yrs and just as many surgeries I still find help. Especially this one. All I can say is keep reading, keep searching and asking questions. No you don't learn much from hospital. Good luck, Mary
