Instructional and advice videos on all things colostomy and colorectal cancer...by me, Jo :-) I'm a little bit Loopy, but seeing as there is so much serious stuff out there about this very serious subject, I don't think it hurts to lighten the mood a little...
I'm both physically paralyzed and also have an ostomy. My injury level is high enough that I can't really balance to sit up. This makes maintaining the ostomy quite difficult. Life is full of mountains we must overcome. ❤
@@endtimeawakening5557 I am so sorry to hear about your injuries and situation. I can only imagine what you’re going through. I have a friend who also has to change her ostomy bag in bed, she has gotten used to it over time, I hope and pray that you will too. Sending much love to you x💖
@GotStomaVlogostomy Thank you so much! It's an adjustment, to say the least. I elected to do it because the bowel routine was getting too hard with the paralysis. It took hours each day and was getting harder to do. Hoping this works better! Hope and pray all is well with you!!! Much love and prayers!!! ❤️
@@endtimeawakening5557 It must be a tough thing electing to do it, a big decision… but the people I’ve spoken to over the years who elected to have the surgery have all said it was the best thing for them. The initial adjustment period is really difficult, but 8 years down the line and I’m totally used to this little stoma, it’s just part of life. It can be annoying, but it has it’s perks too, I have terrible IBS and those mornings (every morning!) I had to rush to the toilet at the crack of dawn, I do not miss! I hope you have good support around you, people who care and help you in whatever way you need. Stay in touch 💖💖
@@GotStomaVlogostomy Thank you very much! I'm so sorry for your condition though you sound like you really have a firm grip on it. I'll follow your channel and keep you in my prayers! Thank you for your kindness and understanding. ❤️
Hey 👋 where have you gone 🤔 I hope you are doing well thank you so much for all the information, you’ve taught me a lot and I appreciate your lighthearted approach x
Hi…!☺️ Thank you, it’s always so great to hear that I’ve helped someone 😍 I’m just doing this life stuff as best I can… I always think of doing videos and then menopause brain helps me forget 😅 Take care!xx
Hiya, hmm, I’m not sure that you can, they’re a UK based company 😕 Try speaking to your stoma nurse/practitioner who should be able to advise you on any products that have skin benefits like the Pelican bags do… good luck!
@@GotStomaVlogostomy I came to your channel due to the subject of pelvic radiation and the dilators. Some of those vlogs were very funny 🤣 I have endometrial cancer stage 1b. Was recommended to have five treatment of radiation . Not Looking forward to it.. I hope you’re doing well these days. It seems like you’ve had quite a journey. All the best to you.🩵🫂🙏🏻
@@karendavidson6272 I’m sorry to hear you have cancer, I hope things go well for you. Yep, radiation is very aggressive, but it could save your life, it’s a tough one to balance I know… For all I know it’s what saved my life, but the payoff is the physical damage it leaves behind 😫 Ugh. Wishing you well on your journey, stay in touch xx
I am wondering if you have ever stopped irrigating for a while, and if so, how your stoma responded? I'm thinking of camping trips and travel, where occupying a bathroom for the time it takes would be a burden for fellow travelers.
Hiya! I don’t irrigate anymore, because of physical limitations, but when I did I took the occasional break. When I would start back up I found that I would kind of have to go back to the beginning, but that my body adapted quicker than it did the first time. I once went camping and used a bucket to irrigate!😅
I personally believe that not everyone who has a vagina is a woman, trans men or non-binary people often have vaginas, and I’m not here to argue about it, even if you do think it’s weird. If my video wasn’t helpful to you then that’s a shame.
I'm in the same boat. My wife and I decided to take every action we can. Plenty of souvenirs from cancer treatments and surgeries. But, we're still here.
I’m glad to hear your wife is working through her issues, it’s important to do as much (or as little) as you feel is right. We need to fight this crippling disease and its aftermath. As survivors we need people to support us, you supporting your wife with all this rubbish going on is amazing - not everyone would do that 🩷 Good luck with everything and please wish your wife well from me xx
Hiya, yes I’m not surprised you’re nervous, it’s a daunting thing to go through. But it is a quite simple procedure and you’ll be in great hands. Good luck with everything, sending positive vibes to you ☺️
I really enjoy your thoughts and an advice, but, please please don't tar old people with the same brush ...it like me say young mums are all impatient.. just because they are mums..
Hiya, thanks for your comment. I did say that the stories I had heard from many people, were particularly of elderly people, which I have experienced myself. It involves people of a certain age being more likely, in mine and other’s experience, to kick up a bit of a fuss if you don’t look like a ‘disabled’ person. I have great respect for older people, I was simply saying that experience from myself and others I had spoken to, it was that demographic that tended towards asking whether you actually have a disability.
@@GotStomaVlogostomy hi do understand it's a hidden disability , I can only cite from my experience being 64 (and grumpy 😂) no doubt classed as elderly by many it mostly the young mums that pull faces when I use the disabled loos...lol I think we are both saying please be tolerant of all.. Keep up the great show you are a breath of fresh air.. thanks for what you do.
@@kevf58 oh my goodness, I don’t class you as elderly AT ALL…! Not by a long shot ☺️ My mum is 66 and would be very angry if I said she was old, let alone elderly 🫣 She is like my sister at heart 😍 When I say elderly I mean people in their 80’s and older, who often use disabled toilets here in the UK… I think that there is somewhat of a disconnect between that generation and my own when it comes to things like that, I still get the odd look from people when I use the disabled toilet and I haven’t got my walking stick… So… You’re not elderly, that’s for sure! And yes, tolerance is a wonderful thing xx
So I was stage 3 when first diagnosed, and after my colostomy surgery at my first 6 months scheduled scan, they saw the metastatic tumours in my lung, which then meant I was stage 4. I had chemo before my colostomy surgery.
You my dear are the most amazing human! I was diagnosed with anal cancer April 25 2022. I had chemo and radiation. I am having a colostomy because of radiation damage. My scan is clear. I am so very grateful and yet at times overwhelmed by it all. You are the most real communicator I have listened to yet! I am so very sorry your cancer had spread. I checked and you are still fighting and bravely living in 2023. Thank you for fighting. It’s like you are fighting for so many cancer people. ❤
Ohh, thank you so much for your lovely message. I’m so sorry to hear about what you’ve been through, but thankful that things have been all cleared for you! Keep fighting! A positive outlook really does help…😍☺️
Just an FYI for anyone seeing this in 2023. The sleeve is as long as it is, so you can sit very comfortably on a chair next to the toilet and hang the end of the sleeve into the toilet. Don't use very hot water, that can lead to cramps., You can wash your gear with a dish soap after you're done irrigating.
Its so nice you have a great amount of support. I can tell you going through this virtually alone, is nearly as hard as dealing with the cancer. I have not even had a moment to sit and really cry and and feel any sort of comfort. Anyone i try to speak to just says, just stay positive, your strong, you will be ok, stop being negative. You worry too much. Just once i wish someone could see my pain and terror and hug me and let me get it out of my system. im being treated like im going to have a mole removed. I dont think i even remember what its like to be shown any sort of compassion. Well except when i met my surgeon 2 weeks ago. I did not even get to ask him anything i wanted to know. He said how old are you? I told him, he says sadly you are too young for this. I burst into tears and my brain melted. He handed me tissue and off i went, not knowing anymore than i did before i went in. I go for my operation on this monday and im terrified. And i have never felt so alone in my life. I have this overwhelming feeling of dread. My life is at a state now that sometimes i feel like maybe its better if i do not wake up. Wow i just realized you posted 6 years ago. I hope you are doing better and living your best life.
Hi… I’m so very sorry you’re going through this alone, I know how totally lucky and blessed I am to have had people around me for my whole cancer journey. I can tell you that I truly do understand your terror, and I know it’s no great compensation but having cancer made me feel utterly alone too, even with family around me. I think this is something that people feel a lot - unless you know someone with the same cancer/stage, it can be a very lonely place, even surrounded by support. It is OKAY to be terrified, angry, depressed, worried, you need to just feel everything in whatever way it comes out. Having had stage 4 cancer for a lot of years I know how it feels to think you’re going to die. It’s effed up and feels like nobody understands how it really feels. I did a LOT of soul searching, a lot of writing, art, crying, screaming, anything that helped me in the moment. Just do what feels right, and allow yourself to grieve. It’s NOT ok that you have cancer, it’s NEVER ok for ANYONE to have cancer, it’s completely messed up and it feels like our body has totally let us down. It’s not fair and it’s not right. All we can do is come to some sort of begrudging acceptance, and hope that fate, god, the universe, will look after us. If you are strong enough to think positively then more power to you. I’ve been able to do that because the alternative was too dark to comprehend. I also struggled with feelings of wanting it all just to end. You’re not alone in that. And you’re not alone, there are so many of us who know exactly what you’re feeling… much love x
@Shecat1964 So sorry you have to face this terror alone darling. Sending you a virtual hug is the best I can do unfortunately and pray for you things will improve and the dread of these traumatic experiences will subside. I know time heals eventually but you never really recover from this deep feeling of abandonment. You deserve a mountaintop too and let your rage and grief out. It’s too hard moving on when dragging a sh*tload of resentment. Blessed Be 🤗
I’m here to echo @joenisnapje712’s comment. It’s been 2 months since you left your comment, I really hope that things are going as well as possible for you. I hope you’ve been able to let your grief out and that someone is there for you. Sending love and light to you xx
Hi, diverticulitis isn’t a disability, although the pain can be crippling at times. There are things that can be done to help with the polyps, talk to your doctor about treatment options. I hope you get the help you need ☺️
Even if I lost 120 pounds I had 3 drains and the ostomy bag I can't even get the reversal because my surgeon said I lost to must wait but Iv has the ostomy bag about 6 months kinda used to it just don't like go out in public
@@roberthaynes5846 I’m really sorry to hear that you can’t go out of the house. I totally get it, I’ve been in similar situations where I can’t face the world and hide away for days on end. Please speak to your General Practitioner doctor who will be able to help you with your mental health, there are ways to feel better, there really are. As for a reversal, perhaps in the future you’ll be able to have one… it sounds like you’re coping with your ostomy bag well though which is good.☺️☺️
I wore a mini bag, sometimes a cap. A cap can work really well for a lot of people - It’s actually a tiny bag, so it still has some room for mucus and any output that may come out. I personally didn’t feel they were secure enough for me because of my IBS.
This video should have made a million. You sure helped me. I just noticed you just used 500ml and stopped. Did you let your bowel empty then put in the remainder of the water.
Hi ☺️☺️ I’m so glad this video helped you! 👏 So yes, around 500ml was what felt comfortable for my stomach, and afterward I might use more water, depending on how much output had emptied… Nice to meet you!😊
I’m sorry to hear that… If it’s not being controlled by painkillers maybe talk to your nurse about it, they should be able to help and put your mind at rest… thanks for watching ☺️☺️
Hi Jo, I came across your channel earlier last year when I was looking into irrigation. I found it so helpful and still use lots of your tips 9 months on and I also share your irrigation video on a fb Colosotomy Irrigationers site I’m on as I know others find it helpful too 😊. Watching this video now, it looks like you have stopped irrigating and I was wondering why? It has been such a game/life changer for me and I would hate to have to go back….my stoma is also retracted and I get lots of pancaking leading to leakage and sometimes full blown accidents…I’ve had none of those experiences in over 9 months since the first day I irrigated. My output is more solid than you describe and to be fair I can eat most things so irrigation suits me really well and I can go around 36 hours without output. A big turn around from before when I could be doing up to 5 bag changes a day. I loved your video and it bridged the gap for me from all the medical text book videos and descriptions which didn’t really dispel the mystery and the sort of fear I had which your video did, so a big thank you for that!! X
Hi, nice to meet you!☺️ It’s funny because last night I was thinking about the fact that I hadn’t mentioned why I don’t irrigate anymore in this video…! So I have a few mobility and pain issues, which made it hard to cope with the amount of time it was taking to do each irrigation session. And as you mentioned, my output isn’t solid, in fact it’s always different because of the IBS. Some time after the irrigation video it really flared up, and I would irrigate, but still have output because my bowels were working much faster. Those two things combined were enough to stop, the physical difficulty I had during the irrigation process just wasn’t worth it at that time. I might give it a try again one day, but my output is just so inconsistent at the moment, I know it would be the same as before… I’m so glad it works for you though! It really is amazing, when it worked for me, yep, it was a game changer. And thank you for sharing the video, it warms my heart thinking I might be helping people ☺️☺️☺️ All the best x💖
Aw that is a shame, I hope you can get back to it some day….I’m assuming you’ve tried all the remedies, pro and prebiotics, fermented foods etc to aid digestion. I’m following a plan of eating 30 different plant based foods per week…sounds a lot but when tea and coffee (decaf for me) can be included and herbs and spices it’s quite easy to reach that many. I also make a lot of soups so throw in whatever veg I have in the fridge. I think I’ve been really lucky with the outcome of my APR surgery as I can eat almost anything and it’s more the amount rather than what I eat which affects my output.
@@farnwoj1 It’s great that you can eat anything…! I’ve got a very good diet, it’s of veggies too, I often have biotics, but nothing works for me, at least nothing I can pin point. Maybe if I ate all refined carbs and no fibre I might get a result 🫣 But I couldn’t live like that…I love fresh veggie soups too 😋
I know when I first got my stoma, my output was not consistent and it carried on that way until I started irrigating….I kept a food diary for weeks but it didn’t help me identify why my stoma was so active some days and quiet others. Things like spicy foods and alcohol did create output, but I think most people are affected by those things, but the rest was so inconsistent. Which of course is why I love irrigating so much…it gives me back some control which was definitely lacking!
@@farnwoj1 yeah, it’s certainly great to have that bit of control back… I also quite appreciated the release feeling, almost like being able to sit on the toilet for a poop again 😂 TMI…? Sorry 🤭🫣
So very nice to see you on video again & I'm happy to hear you explain how you deal with the problems. You are a very special person.& glad you can enjoy life. You are a great example of how a good attitude relates to being happy. I also stay busy each day & often think how fortunate I am to survive lung cancer. I will have 4 years cancer free April 19 this year. I will look forward to more videos from you.
4 years cancer free!!!! Absolutely Wonderful…!🌟💖 Staying busy and positive has helped me so much, and I sincerely believe has helped my recovery a lot. Even my colostomy surgeon, who’s fundamentally a scientist, urged me to stay positive and believe that things would get better… and he was right! Take care ☺️
You are a rock star! I wish I had found you in 2019! My brother had the same surgery as you, colostomy and rectal removal. He has no one but me to help him on this journey. I have learned so much since then. Tonight I have watched every video you have made. You are spot on with everything. You are also a very talented woman! I love your stories and sense of humor! Keep the videos coming, as they are such a wealth of information for so many facing the same thing. I hope you know how special you are!
Ohh, thank you! And what a wonderful sibling you are!☺️ I hope your brother is doing well, he’s still quite new into his stoma life… Has he got a good stoma nurse/medical team? Support from a loved-one is critical going through all this medical rubbish, you’re doing a marvellous thing being there for your brother!💖💖
It’s good to know I’m not the only one who’s discovered drainable 👌 My brother has Crohn’s and we’ve talked a bit about how a stoma might be an option for him… he’s on top of it at the moment but has had quite a few surgeries. I hope your’s isn’t bothering you too much at the moment 😊 thanks for watching!
@Got Stoma? Vlogostomy I hope so. The last big break made me think you didn't make it thru, this past one scared me a lot less. Your videos are entertaining af and I find you inspirational
Aw, that’s so sweet, thank you 🥰 I know, that big break from RU-vid was a pretty dark time, I just couldn’t face it… but I’m trying really hard to be a productive human being! I’m sorry you got scared 😢😢
@Got Stoma? Vlogostomy no it totally makes sense, happens to everyone with average problems, let alone everything else you have/had going on!. Honestly I don't even have a stoma or cancer (that I'm aware of anyway) and I just watch because I like the way you express yourself and explain things.
Hi again. I’m really sorry that I can’t definitively answer your question, as I said I’m not a medical professional, I’m simply a patient. I can’t answer yes or no to that question as I don’t know the answer unfortunately. There have been studies that say yes it can, but they are just studies. Please talk to your doctor, I really hope they can answer this for you…
