Nαια Novak-Winchester apparently you clearly understood what Stephanie stated in her comment as you corrected her. Does correcting people make you feel good or make you feel like a better person? I understood what she was saying and I am quite sure many others have as well.
Jason leeds I just wanted to inform them, maybe they didn’t know how to properly say it and now they do, prevent them from making further mistakes. It doesn’t make me feel any better of a person, but maybe I’m being helpful. It’s called constructive criticism.
Nαια Novak-Winchester that makes sense and clearly you did not want to make Stephanie feel bad or poorly educated. I would not have said anything if that was stated that in your reply (correction). Now that I am aware, I apologize. I hope you enjoy the rest of your day. Ciao.
Who else is watching this after she’s passed ? God she was always in such a chipper mood , even when she was having a tough time she was still loving and just a beacon of light .
Yes, strange indeed, but good that the algoritms does good and help spreading important information for once instead of cause harm to people as usual. However i remember talking with friends about this topic elsewhere long time ago when a guy asked about tips to bring the katheter with him in public, That's why i opned it since i wanted to know more from someone who actualy had experience.
I'm a 30 year old guy who somehow stumbled upon this right now..after a couple of rum-drinks and whiles eating a whole grilled chicken. And I must say I'm glad I did. No one should feel awkward or embarrassed about medical things or different life situations. And spreading awareness and inform ignorant people helps allot I think. So keep up the good work and I wish you and everyone in the comment section the best. You are all strong and courageous, if someone gives you a look or a comment in bad taste, they are the problem.
I'm 23 and have a 'surgical' supra-pubic (spc) catheter and it's basically a regular long-term Foley catheter just through a hole in my belly into the top of my bladder, rather than through my urethra and in to my bladder. Getting an SPC Initial insertion is generally done in theatre under a general anesthetic; they basically find your bladder and insert this long metal needle in the top of your bladder through the skin and then take the metal bit out and thread a catheter through the hole. The catheters they use for a supra-pubic catheter are a higher French (Ch) than the ones they use for regular catheters; this means that spc ones are thicker (16 Ch and up) than urethral ones which are generally for adult females around 12Ch. They can be latex or silicone. When I went in to theatre I stupidly thought it wouldn't hurt as it's only a small hole; when I woke up I needed three rounds of IV fentynl because it hurt so much but that was just my experience, I know others who just had mild discomfort afterwards. Surgical after care One thing I would say is it's in an area that initially when you're moving about, reaching things, picking things up, bending down, rolling over, stretching, or twisting, it pulls a lot and can hurt. If you have young kids that you're picking up and things you might want some help with them for a few days, or if you're in quite a strenuous or busy physical job, you might to take a week off to recover. It's still a surgical wound and needs time to heal so you won't be able to do strenuous exercise during that time (usually about 6 weeks, but each surgeon says differently) and for the first week after surgery you might not be able to get it wet, but the surgical team will advise you on things like that. For some people their stoma is in line with their waistband, for others it's under or above their waistband. If you're going into hospital to get an spc, then I'd recommend taking underwear that has a waistband that sits quite high up, are loose fitting and comfortable; as well as loose fitting and comfortable trousers/shorts/skirt/dress. You'll probably need clothing like that for a couple of weeks after until it's feeling more settled. When you first get an spc you will probably need to have a dressing on it for a few weeks until it's healed, because it'll bleed and be quite mucky to start with; remember it's an open wound and try to keep it clean and dry, wash your hands thoroughly and try to wear sterile gloves when dressing your stoma as it'll prevent infections. Catheter clips are well worth using to prevent the catheter or tubing pulling on your stoma (I use the Ugo catheter clips, but I know Bard is another brand of them and they call them Bard Statlocks); these can be and along with catheter retaining straps too, there is a large variety of products that secure catheters and the tubing. Changing Supra-pubic catheter tubes Every 12 weeks a nurse (or some people do it themselves) pulls the tube out and puts a new one in. The first few tube changes can be sore, but it gets easier with each change as the stoma heals and the tube tract forms. I've found that even after a year my tube changes are always a bit sore and uncomfortable (particularly if my site is infected or sore anyway). In my experience when the old tube is being pulled out it does feel a bit weird, like your guts are being pulled out of a tiny hole; you may or may not feel the deflated balloon of the catheter catch slightly on the top of your bladder as it's coming out, it's just because the balloon has been inflated for 12 weeks so when it's deflated it's a bit saggy and less streamlined than when it was put in. I usually find my stoma and lower stomach are a bit sore and achey for a couple of days after a tube change, but that's not uncommon. My stoma after a tube change usually bleeds a little for a few days after and takes about a week to settle back down; one thing that I've found definitely helps is Manuka honey (it needs to be medical grade - it's around £6 for a tube on Amazon that lasts up to 3 months once opened. Some NHS trusts will give you it on prescription if you meet their criteria for it). Infections in 12 months I've had over 20 infections, all originated in my stoma causing an infection there and then some spread to my bladder causing a UTI. Skin is very unique in that it has so many different types of bacteria that live on the skin (skin flora) to protect us, but things like staph in an open wound can lead to infection, which is the risk of spc catheters. I've had so many staph infections in my stoma that its colonised there now, and it keeps reaching such high numbers that it becomes dangerous and causes an infection. When my stoma is infected it gets red raw to the point where the smallest thing will make it bleed, it produces a load of pus, is sore, can smell a bit like rotting flesh, and it can develop small ulcers on the inside of my stoma. You will get to know your stoma, if you notice something unusual about your stoma, such as it getting more mucky or sore, then ask your district nurse or doctor about it. They then may do a wound swab to send to a microbiology lab at a hospital to check for bacteria; if they find bacteria that is likely to be causing an infection then they will test in the lab to find the best antibiotic for it. Why did I get an SPC? I got an spc because I am in urinary retention because of my EDS, and Foley catheters were blocking every other day and a nurse would have to come out and replace it. It could take the nurses up to 12 hours to arrive and all that time with a blocked catheter was painful as my bladder would get fuller and fuller and wouldn't be able to empty. Then when the nurses arrived it could take them an hour to get a new catheter in which wasn't pleasant! Even with all the infections and stoma care the spc catheter is worth it for me because I don't need to worry about it blocking, it's easy to change, more comfortable, more dignified and as I'm in a wheelchair full time having to sit on a Foley catheter tube all day was so uncomfortable! Why couldn't I use intermittent catheters? Firstly I'm incredibly difficult to catheterise, also my mobility and eye sight would make it very difficult for me, and I'd have to worry about getting to the toilet and on to the toilet, it would just make life a lot harder. For me having a tap on my catheter that I can turn on when my bladder is full and drain in to a leg/night bag and then turn off again is better suited to my needs. Products There are many different brands, types, and variations of catheter supplies, if one isn't working out for you then don't hesitate to try other brands and products until you find ones that suit your needs. Many companies will offer free samples if you go on to their websites or email them. When I left hospital with a catheter I was given one nights worth of supplies, I wasn't told what I would need or anything, I was just given the number of the supplier that the NHS has the contract with in my county. I called them up and told them I was clueless about what I needed, and they talked me through what I would need and the quantities and said what other people find useful; she talked through everything from the options about the different types of drainage tap I wanted on the leg bags, to whether I wanted leg bags with long or short tubing, to whether I wanted single use or drainable night bags. I was on the phone to them for over an hour, and they answered every question I had. Since then there are a couple of products I've changed and I've changed brands of leg bags and night bags, but the help of that lady that day and her vast knowledge was invaluable. Never be afraid to ask your nurses or suppliers questions because there always has been someone in your situation before, and even if they don't know the answer quite often they'll find out for you. I hope that explains about supra-pubic catheters!!
I've been using caths (supra-pubic then intermittent through mytrofanoff) since I was little with infections coming almost every other month and what I've found best for personal infection prevention is sterile saline bladder flush which I get from my urologist office and D-mannose otc. Now I can go about 4-6mo without an infection and it's great
Thank you for sharing your experience and knowledge regarding your type of catheter! I find it fascinating to hear from everyone how they deal with the daily life of living with different medical conditions. I wish you all the best!
@@kinseybay97 thank you! I've tried those on and off but without any success as the infection comes from my stoma rather than bladder. I shall try getting them done regularly and see if it helps! Thank you. I have MSSA colonised, so it's impossible to get rid of, so everytime I'm off antibiotics they rapidly increase in numbers until it reaches dangerously high levels which then causes infection. I've even tried chlorhexadine scrub (the stuff surgeons clean their hands with in surgery) but without any real success. I've been in hospital for 14 months now due to EDS and neuro issues, which more than likely has a lot to do with infections, it'll be interesting to see if the infections improve when I eventually get out of here! They reckon I'm going to be in for a minimum of 6 more months to a year yet. Hopefully it won't be that long!! Thank you for your tip, I'll definitely try doing saline flushes more regularly to see if it improves things. x
You are getting better and better at explaining this kind of stuff Amy. So proud of you. I said it the first time you talked about Caths and I will say it again: do not feel ashamed of having to use certain tools to help you have a better quality of life. You deserve to feel comfortable with however that looks for you
I have glasses. Without my glasses I am legally blind. My glasses are the accommodation I need to function in the world. No one looks at my glasses and thinks it's odd or pities me for my glasses. It should be the same for people in wheelchairs, or oxygen, etc.
God, I have severe fibromyalgia and it makes me ... well, handicapped. The longer I walk, the more pain I’m in, and the higher chance I have of falling due to muscle weakness/spasms and general lightheadedness and being a clumsy nightmare (and if I fall - I can get myself up, but it will cause a major flareup that makes getting out of bed even harder). I also have a handicapped placard and park in handicapped parking spaces. Since I’m 22 and, by appearance, look perfectly healthy, I get the ... dirtiest looks, usually from people twice or three times my age. I know they think I’m faking it. It’s like ... why are people so judgemental? Having an invisible illness is such a huge pain. People seem offended by my general existence.
From an Arabian, Muslim girl.. I love you Amy. "Let your light shine as an inspiration to humanity and BE THE REASON someone believes in the goodness of people."
You are doing a lot with your life. Your videos make people more aware of what those with chronic illness go through on a daily basis. You are giving many people hope by showing you can live a full life despite your condition. You are an amazing young lady!
I'm so happy that you're being so open about this!! You're both educating the world as well as destroying the "shame" that shouldn't even be there in the first place! You go girl!
Great job Amy! So happy you’re raising awareness & breaking the stigma! I’ve had different types of catheters too (& am having surgery to try to improve it soon🤞🏽) I’m planning to talk about it all on my channel soon as this made me realise how important it is to normalise it! 😊
And the suprapubic catheter can be used like you said, with a valve to drain when you need to go, or it can be used with a collection bag like a Foley catheter :) Hope this helps people in the comments!
I love how you are breaking stigma regarding bathroom issues. I had a lot of poop troubles in elementary school. I got constipated a lot and had to take a lot of different laxatives. I had to drink water with fiber powder every day twice a day. I got a lot of gas and stomach pains. But now I don’t have anymore poop issues and I’m glad for that.
You're great Amy. Never think you're not making a difference. You encourage me each time I watch your videos, because you've been through so much & still are and your spirit is beautiful. I too have a chronic ailment, and I deal with pain and difficulty daily. However, watching you helps me stay strong and motivated. Be Blessed!
Amy, I don't personally have a chronic illness like yourself, but I have friends that do. Watching your videos has taught me a lot about what they may go through on a daily basis. I appreciate your openness and how candid you are in your videos. It has taught me to pause before judging anyone I see on the street no matter their situation.
Hey Jane, may I ask, do people stare at you for using a catheter? How do others know how you go to the bathroom? I'm sorry if this a stupid question, maybe I'm missing something. I'm just curious to learn, and I definitely do not want to be one the people who make you feel awkward!
Weird question: do you wear eyeglasses? There's a combination glasses/nasal cannula out there that makes the tubing almost invisible--the brand is called Oxy-View. I have zero idea if it works, but it's a pretty brilliant idea!
In my opinion I truly feel most people in general are just Curious about medical issues... just look right back at them with confidence that you are smartly taking care of yourself and your special needs. As for those who stare like they think they are superior, well, guess what those few bad humans are Not worth worrying about... just stay positive and just ignore them. There are so many in this world who are GOOD people like Amy who want to spread awareness about EDS and all of it s effects on the human body. As her followers, we help her and help spread awareness by subscribing to her channel.
Just stumbled on these videos by Amy. You have my total respect and admiration. How brave and thoughtful of you to talk openly about your personal experiences to try and help others. I wish you nothing but the best for the future. And you are right not to be embarrassed, perfectly normal bodily function for absolutely all of us.
You never have a need to be sorry for not uploading ... if anything we just worry about your wellbeing not about waiting for your next video .... your an inspiration keep on going your teaching us so much 😍
Thanks for sharing your story with so much detail. I have had to use catheters for about 13 years now and still find shame in doing it, feel like I have to hide it and be embarrassed. Hate having to go in public!! You are so right that it shouldn't be something that ppl question...it's our "normal". There's nothing wrong with having medical problems, but ppl are curious about things they know nothing about. Thanks again for being open and making it seem like catheterization is no big deal. Awareness and education are everything!
Great work! I'm a medical student and I found it very interesting and informative to listen about all this from someone who actually has to go through it! Keep going Amy!! ✌
This vid has helped me so much!! I’m 14 & recently started with bladder issues but a couple weeks ago it fully stopped and I was admitted to hospital for 2 weeks. I’ve had a foley cath in but they’re wanting to teach me self catheterisation, but I’m petrified to do it. I’ll be getting taught in the next couple weeks. But I must say this vid has helped it be a bit less daunting 💖
i’ve also been hospitalized for bladder issues with a foley catheter but under anesthesia and they *also* wanted to teach me, but my Mum told them i was just getting in a state so they cancelled. i rlly do not want to learn because it looks painful
очень одинокий wow I didn’t know they could do it under anaesthesia! But I will say, it sounds much scarier than it is. And once you get over the mental hurdle it does get easier ❤️
You seem to handle all if this very well... I am very sure you have your bad days like "why me" but girl you seem so positive and even tho I don't know you, I think your brilliant for sharing your information even when its more "personal" YOUR AWESOME!
They NEED to use your channel as an educational one! You're common sense approach to your body and issues and the things you have to do to stay welll is amazing. You demystify subjects which most of us haven't a clue about.
I have a suprapubic catheter and you explained how it is placed beautifully. It is actually a Foley catheter placed through a hole in the abdomen into the bladder (just like a feeding tube) mine is hooked to drain bag at night and a leg bag during the day however you can have the little valve thingie to just empty when you need to.
You explained it all really well! One thing I’d add is that the suprapubic catheter can be used with a valve like you said, to drain when you need to go, but they can also be used with a collection bag like a Foley catheter :) Hope this helps!
I recently discovered your channel and watching this video brought a smile to my face. I’ve been Catheterised since I was 2 years old when I got surgery done on my bladder that saved my life. The types of Catheters I have are Intermittent ones and I’m now 19 years old and I’m still till this day alive and well. I remember I told my friends about my catheter and they were very supportive and they know about the other health problems I also have. And I also want to say I fully agree with what you said at the beginning, I full on agree that it should be talked about like a normal as heck thing and not be weirded out by it.
I've said it before, and I'll say it again- you are AMAZING, Amy! The grace and ease you share your daily struggles living with EDS and your other conditions really needs commending on! You're such an inspiration! I absolutely LOVE how you educate your viewers about all the things going on! You're so easy to listen to and very literate! I'm so glad I stumbled across your channel last August! I look forward to each and every video you put out! Thank you for sharing your world with us! It's so comforting, especially to those of us who also have EDS and other medical issues that affect our daily lives! Thank you once again, Amy. You're AWESOME!
Much love like always. Your an amazing and ungodly brave human Amy. Don’t ever forget it. ♥️ ps. I generally appreciate that you “showed” people who are new at this how to do it. Those stupid cartoons don’t do anything ( I’m only comparing it the first time I used a tampon. I don’t use catheters)
Love love love how open you are about this. I’m 20 and intermittently catheterise. I don’t know anyone else who does and not many people know about it. It’s a normal part of life for me so it’s great to see someone talk so openly about it.
I just started. Do u have any tips or anything? I have struggled with Urinary Retention for many years now. If u prefer to email instead let me know because as u know Amy did give alot of info on it compared to most, but can't answer questions because of whatever gave her wings, but being so new to it & still waiting on proper help & affordable self catheters i'm desperate to do something to stop uti's & needing to do 3 urinations in 20mins & still feeling sore, not quite empty etc. The tests they done on me showed that I can retain up to around 250mls, I got almost an entire cup out using a self cath & it made me feel so relieved. Still lots to learn so I can do this as safely & hygienically possible to not irritate or cause infections accidentally where possible to prevent. If others want to comment feel free to as i'm not ashamed to be a part of those who need to occasionally use these as I can partially or sometimes empty ¾ of what I believe is left then either uti or a decent 20mins where it stops, then I try again, then again & eventually drain what I am able to on my own but can't always do this or may hold too long not knowing I need to urinate-(no idea why)
You are reaching so many people, breaking stigmas and normalizing illness. What a role model you are. You are living your purpose Amy. Good job girl. 👍🏻
I didn’t even know you had one 😂 it’s definitely interesting to know about though, I’m surprised how (unintentionally) ignorant I was about this stuff but here I am and I’m learning 👍🏻
I love how well put you wrote this. Same for me as well! I have to explain to people on the daily how yes I am a type one diabetic but no that does not mean sugar will cause my death lol. When it comes to even my own disease I am ignorant.
I miss you Amy. You helped me cope with my sons feeding tube, catheters, and surgeries. I’m having eye surgery in two days and I’m worried about it. Then I remember Ive only had to have two surgeries due to my autoimmune disease, and you lost your life because of yours. You will never be forgotten ❤ I love you
I stumble upon this channel and I really love how you talk and normalize everything, and how you're so bright and hip! I'm sure you have your down days, but seeing how positive you are on camera brights up my days. You earned yourself a subscriber, Amy!
I am SO HAPPY I just found your channel. You are AMAZING. I am a nurse in NY. We could REALLY use you in our hospitals. Keep spreading your love and knowledge. I will be here every post you put up and I will follow you on Instagram. Huge love and prayers ❤🙏
You’re SO right Amy!! It shouldn’t be taboo!!...Which is why i too, am going to share a good bit of my experience/journey-without young people like us sharing, we are unlikely to banish that taboo!! I’m sure, talking about issues such as this, will help many young people in the future!! I’m sorry if this is TMI for some-but it concerns a bodily function that all of us have-it’s just some of us have to deal with it differently to others!!! I had to have a suprapubic catheter (SPC) placed in 2016, after having to intermittently catheterise for several years prior to the SPC. They drained a bit under 3 litres from my bladder when they worked out I had a problem. I had been admitted to hospital with an unrelated infection (not bladder), & had been admitted or over 36hrs when a nurse said to me “have u been to the toilet? No one has said/documented you have”. I was that sick, I couldn’t remember myself!! They scanned my bladder, & I had “over 2.5L” in it. I had no idea-except for feeling a bit uncomfortable/crampy. They then drained just under 3L with an intermittent catheter. They suspect I had had an issue for a long time for my bladder to be that stretched, but just didn’t know-they were astounded that I wasn’t getting much sensation at all until I had over 2.5 litres! As you described, from that point on, lots of tests, trial voids (they once let me go to the point where I had close to 3.5 litres trying to get me to void on my own without catheterising me-it was excruciating!), measuring input/output, “in & outs” (as my nurses called them-when I was full up to my ears but just couldn’t go), then ultimately failing with voiding myself more often than not-so I was taught to intermittently catheterise-(but unlike you it seems Ams), I had an awesome clinical nurse consultant that taught me. She would come to my hospital room whenever I was “due” to catheterise, & she would walk me thru it/show me. I felt SO embarrassed, but she really reassured me, & helped me SO much!!! She came everyday (except weekends) for nearly 2 weeks, until I was confident, then I was discharged. I think it was her that really had a huge impact on how successful I was learning self catheterisation-&, I’m sure, meant that I didn’t get many infections while self catheterising. Unfortunately, due to botched surgery, I had to have the SPC placed in 2016-which has resulted in tons & tons of downs, more so than ups!! It’s easier than intermittently catheterising some times, but much, much, worse at (most) other times. You basically covered most of it fairly accurately with what you said about SPC’s Amy-for some, like me, I have to have a bag on all the time-like you do with a foley. I have a smaller “leg bag” that the SPC connected to all the time, then at night, I connect another larger bag to the leg bag, so I’m not having to constantly empty overnight-which I just disconnect in the morning, leaving the leg bag in place. For some others, you can put a valve on the end of the SPC & just empty at set times (if you have no sensation), or empty when you feel you need-or a combo of the both. For me, I’ve found that having an SPC can be quite uncomfortable at best-but sore/painful, a lot of the time-like the feeling/pain/discomfort most get with a foley that is in for the medium to long term. My bladder does a full time job of trying to eject the catheter, even on good days-so I have lots of painful bladder spasms that have resulted in me needing meds-so I have a patch that delivers a small dose of meds 24/7-as taking “as needed” meds didn’t really work for me-although I do have the “as needed” meds available too, if the patch isn’t cutting it, & I need a top up. One of the biggest issues tho, is that I have tons of issues with infection, since I’m immunosuppressed-not only bladder infections, but infections of the “tract” or “stoma” that the tube goes through. It seems as if I’m on antibiotics more than not, & being immunosuppressed, means that I get unusual, & antibiotic resistant bugs all the time. If you have to catheterise, it may seem as though having an SPC would seem easier/less hassle than intermittently catheterising-but, trust me, (for me at least)-it’s not-I would have kept doing intermittent catheterisation any day, if I had had the option. As a nurse that can no longer work due to my health issues, you covered intermittent catheterisation awesomely well!! I was taught tho to use baby wipes instead of the Chlorhexidine as it can be associated with contributing to resistant bugs/skin sensitivity/stinging. With the baby wipes I was taught to use 3, & to not to clean the area in circles-just 1 really good/firm “swipe”-but 3 times-1 wipe for each “swipe”. But you have to have the area stretched out really well & be able to hold that position until the catheter is inserted and draining-I hope you get what I mean!! The only other thing I was taught that you didn’t mention, was to press down on my bladder as I was withdrawing the catheter-as it helps with emptying the bladder properly. Such an awesome video!! Thankyou so much for raising awareness of bladder issues, & for helping younger people like myself, feel like we are not alone!!! Chronic illness can be so isolating as it is-but adding on bladder problems can make you feel so incredibly embarrassed!! It gives me so much comfort knowing I’m not the only one, as so many times when I go to clinic, the waiting room is full with much older people than me. THANKYOU!!!
I think you're really good explaining this stuff. I work as an assistant nurse so I do and see this everyday basically. These types of videos really needs to be out there . ❤🙌🏻
I am not entirely sure why youtube recommended this, but i was intrigued. i watched the entire video, and wanted to say Thank You, it was very informative.
Amy, I just started watching your videos. I am a new nurse and just been so interested in what it’s really like for my patients. So listening to different people with all different disorders and syndromes has really helped me learn. Especially the part where you talk about how medical professionals just “hoped” you would figure out how to cath on your own. Good gracious! This really opened my eyes up to how I should teach someone in the future. Thank you so much for sharing your experiences and your tips and tricks at home. I bet this is helping so many people around the world. You are such a beautiful, kind, smart women! Keep doing what your doing! ❤️
Dunno how I ended up here but... a friend of our family, then in his late 70's had to have a catheter fitted. He was somewhat deaf and a bit confused. In discussion with the surgeon he kept referring to it as a cafeteria, causing everyone to laugh so much that the operation was delayed while the surgical team pulled themselves together! 😂
I was always scared of getting a catheter in the hospital but you make it sound so easy and nothing to worry about, I’ve never thought they were weird or gross and it’s so interesting learning more about them!
I love this video!! I love how honest and frank you are. I had urinary issues after having my first child. I suffered from temporary nerve damage and I couldn't empty my bladder myself. I had to self catheterise for around 6 months before my body got back to normal and I wish I had seen this video before all that. It would have been a huge help. Loving your videos, I'm sure there are lots of people that you are helping ❤
At my work (university-hospital) a foley catheter can stay in place for up to 12 weeks before we need to change. A supra-pubic catheter is actually changed if required (usually every 12 weeks). It's usually the same type as the foley catheter and can have a drainage bag on it or can be closed off with a valve that is opened to empty the bladder as required. Always interesting to hear about the patient perspective!
I just got recommended one of your morning routines and decided to check out your channel and you uploaded a video 1 minute ago! How amazing! You’re so inspiring, even with your illness❤️❤️subscribed and now onto binge watching your videos😉☺️💞
I just came across your video and want to say I believe you are one of the most caring, kind and generous people I have seen. Thank you for trying to help people who just need to make a connection with someone who understands. God Bless You. You are an angel I believe.
Just saw this post. I’ve been self catheterizing for years and like you I had to figure it out for myself! I wished I would have seen something like this when I was learning. Your instructions were right on and perfect examples. Thank you for doing this video it is very helpful for beginners because it is so overwhelming and you make it easy. Your a lifesaver!
My ex was paralyzed from the sternum down from an accident. He has to cath every 3 hours because he can't feel when he has to pee. He has a condom cath at night for sleeping. He didn't always make it in time unfortunately, but we tried our best to keep him dry!
Love how open and honest you are. You make a very difficult subject light heated and approachable. I'm sure this video will help and spread awareness to so many people!
Thank you for being so open and honest with a subject like this. I also don't know what it feels like to be completely healthy but you let me know I'm not alone! Anatomy is one of those things we all have but tend to know little about until something goes wrong. Happy thoughts!
You probably get this a lot but you are fucking awesome. Im 36, i nursed my terminally ill mother from the ages of 10-24 and at 27 became chronically ill myself, but without the need to perform medical procedures on myself. Chronic health is a massive head fuck that few people can pull themselves around from. I hope you understand how special you are and the work you are is doing is inspiring and priceless. I am so proud of you and i dont even know you, and so glad i stumbled onto your blog. You absolutely rock and i wish you nothing but joy and happiness.
Thank you for sharing......I have MS and have difficulty doing it sitting down...problem can't stand up for long....You did an amazing job describing to us!
You're fantastic! I work at a hospital and am always learning new things about how people live with different conditions and different bodies. It's amazing and absolutely should be talked about candidly so that people know more about each other and themselves. Thank you for what you do!!
I’m a 49 year old male! I stumbled on your channel also! I’m a Diabetic. I have other issues as well! My hats off to you for sharing information about your life!
Girl you have an illness please don’t opologise for not posting it’s amazing you post the amount you do ❤️❤️ you slay at life & I look up to your positivity
i’ve been self cathing for 3 years now!! chronic bladder retention due to Ehlers Danlos! the Choloplast compact catheters are a life saver during school! they are so small and they expand into a regular size one. they’re amazing!
Hey sweetie. I am a nurse that work in the community and I deal with all sorts of catheters. A supapubic catheter is exactly like you said a surgically place catheter just in the abdominal wall above your bladder. The catheter themselves are the Foley catheter like the one that go in the usual route. Catheter over here in the UK can be changed anywhere for 12 week to 6 weeks depending on the cather but the supapubic catheter are exactly the same as the urethral ones just changed in a slightly different way :) love your videos xxxx
Totally off topic but this vid is gold for innuendo bingo! In all seriousness, I love that you are so open! So many people will benifit from this, thank you.
Binge watching your videos you’re amazing! Im a urologic nurse and you’re very informed and know your stuff! I agree, we need to get rid of the stigma around catheters :) the pubic catheters still use a foley so they still have a catheter that comes out and “hangs” but they have the option to use a drainage bag or plug!
i love your confidence and strength in all of your videos so empowering to all the other people out there that are embarrassed to talk about topics like this and for you to give them that little bit extra boost in confidence is amazing
Your message about medically “normal” language reminds me of something my therapist said (I have ms) she said that society has a disability, not people. I love this message. It’s so true. Society has one way to operate that doesn’t work for all of us.
I've had bladder issues for as long as I can remember and have had the same emergency having to rush to the hospital in absolute agony to be cathed. SO, so painful. Every tiny little bump in the road was horrific. I absolutely understand your pain on that (literally)
I got catheters placed regularely when i was 7 years old and then when i was about 14 years old because of a disease i had. it was the worst feeling ever and i hated it so much. just the thought of doing that every day makes me feel so awful. i dont think i could do that. you have all my respect and i think its so awesome that you talk about that stuff and show so much of it.
I had a procedure done so that I can intermittently cath through a conduit (hole) in my belly button. I'm a quadriplegic with basically no hand/finger function. I had a foley catheter for many years and hated it. I hated wearing a bag. I was also worried about bladder cancer, which is more prevalent in people who have catheters in long-term. I am able to cath independently and I'm very glad that I got the surgery! Unfortunately, I had to get the surgery twice because the first conduit developed stenosis - it basically closed up. It also wasn't in a good location. It was below and to the side of my belly button so it was harder to access. It's really important to find a urologist with a lot of experience! My second one was awesome! I had it done in 1998 and it's been fine! Great video, Amy!
I dont tell many people but i have a lazy eye and that same eye is half blind. I have excema and have a dicease were my nose bleeds lots randomly thank god im not weak to blood(your my literal hero)❤️
What a beautiful young woman you are. I'm sure you have helped many that are shy or just don't know how to use a catheter on themselves. Much love, peace and respect. Blessings
Great job in a thorough explanation! I too have EDS, plus all of the other awful diseases that go with it. I’m on F/T TPN, have a G/J peg for venting and meds, POTS, and so much more. In addition, I was getting hit with nonstop UTI’s back in 2014 and “always” on IV antibiotics at home. I started with a regular foley, advanced to a Suprapubic Catheter and then a complete bladder removal. The test you mentioned is called “a Urodynamic Study” and yes, it’s awful to put mildly!!! Because of EDS, my bladder couldn’t empty on it’s own at all and the official dx I got was “a neurogenic bladder”, meaning nerve dead. While I was on that awful throne after they manually filled my bladder to it’s fullest, I couldn’t even piddle a drop! I tried for over an hour and yes, I had an audience, it was humiliating. Prior to the test, I tried all types of foleys for 16 months in hopes of saving my bladder to no avail. I also tried to self catheter, but my odd anatomy made it impossible for me. My spouse and I had a workshop with nurses, much like what you described, and I was very difficult to cathe even for the nurses:/ Because I had been on so many antibiotics over 16 months and still getting nonstop UTI’s, my Urology team made the decision to remove my bladder completely and recreating a urinary tract with parts they cut out of my small bowel, called an Illeal Conduit. So, yes my urinary retention is now gone; however, my EDS related Gastroparesis got so much worse because I now have Short Bowel Syndrome from the surgery. As you are aware, having Gastroparesis affects one’s motility, so acquiring SBS on top further declined the minimal motility I once had. I’m still very bitter about the bladder removal because it’s added many more “unwanted” problems; however, I understand the reasoning. I still get infections, now straight up kidney infections, and my immune system is so weak that I’m already needing the last “superbug” antibiotic on the market. My body no longer responds to “normal” antibiotics. Plus, for added measure, all of my infections since my bladder removal have turned into Sepsis and/or Septic Shock and I have to be hospitalized now for them. I just got out of another long hospital stay a few weeks ago and have been to the ER twice since. It’s so physically and mentally exhausting to say the least. Watching your videos is not only helpful to others who are struggling alike, they are also educating others about diseases that most have never heard of before. I applaud your efforts greatly in making a difference and for getting the awareness out there!! You are a true inspiration!!!
Hello, I'm a carer for elderly and done some young serivce users too and I've changed catheters and clostmy bags (sorry can't spell it)... love my job knowing I help people young or old every day✔ You are amazing and beautiful girl very brave to share your stories and how you change your leg bag 🤟 don't ever change your amazing girl 💜
I honestly don't know how you live like this (please don't take that the wrong way) you are another type of human being that's for sure. I'm sure your an inspiration to many people around the world 😊😊
I came across to your channel 3 months ago and I just want to say that you are very strong and positive. I wish people find and see your videos one day. They will learn to love themselves and learn how to be enough. Social media nowadays makes people feel envy. I’m glad I came to the right side of TH-cam. I can feel the power from you. thank you! And keep up with the good work ! You’re doing great💗
Wow thank you so much for sharing this, you're so strong and amazing. I have had some experience with catheters, they can be painful and difficult. I have a bladder condition known as interstitial cystitis. This is a difficult subject for me, however I feel very comfortable speaking on your channel. Sorry for the long comment, I just wanted to thank you for everything you do. 💖💖
I think it’s amazing how you are making this so educational and not awkward at all! Great job spreading awareness and helping people in the same situation 💗
I love how professional you are in this and not awkward! Most videos people would be awkward or embarrassed to talk about it yet alone show it!
I know
*let alone
Nαια Novak-Winchester apparently you clearly understood what Stephanie stated in her comment as you corrected her. Does correcting people make you feel good or make you feel like a better person? I understood what she was saying and I am quite sure many others have as well.
Jason leeds I just wanted to inform them, maybe they didn’t know how to properly say it and now they do, prevent them from making further mistakes. It doesn’t make me feel any better of a person, but maybe I’m being helpful. It’s called constructive criticism.
Nαια Novak-Winchester that makes sense and clearly you did not want to make Stephanie feel bad or poorly educated. I would not have said anything if that was stated that in your reply (correction). Now that I am aware, I apologize. I hope you enjoy the rest of your day. Ciao.
Who else is watching this after she’s passed ? God she was always in such a chipper mood , even when she was having a tough time she was still loving and just a beacon of light .
She.. she pasted?
@@tinywewolf1/4/21
O no 😢
She passed away? When?😮😥
@@danikagulbis April 2021 i believe
This just popped up in my recommended. Goodnight Amy, you were such a warrior. Love & light to Tom & your whole family. 🥺❤️❤️❤️❤️
This happened to me, as well. I wish her family well, especially Tom. We love you, Amy ❤️
Same ❤️
Sams🥺🥺😭
Same 😭
Yes, strange indeed, but good that the algoritms does good and help spreading important information for once instead of cause harm to people as usual.
However i remember talking with friends about this topic elsewhere long time ago when a guy asked about tips to bring the katheter with him in public, That's why i opned it since i wanted to know more from someone who actualy had experience.
I'm a 30 year old guy who somehow stumbled upon this right now..after a couple of rum-drinks and whiles eating a whole grilled chicken. And I must say I'm glad I did. No one should feel awkward or embarrassed about medical things or different life situations. And spreading awareness and inform ignorant people helps allot I think. So keep up the good work and I wish you and everyone in the comment section the best. You are all strong and courageous, if someone gives you a look or a comment in bad taste, they are the problem.
RevonowS this is wonderfully wholesome. Thank you
I honestly appreciate this comment so much. I’m also impressed about eating an entire grilled chicken...
Turn that chicken into some chicken nuggets next time my dude. Grilled chicken is _sooooo_ dry... why would you do that to yourself?
RevonowS all of this is so true!
Forget the rum, get a second chicken next time bro!
I'm 23 and have a 'surgical' supra-pubic (spc) catheter and it's basically a regular long-term Foley catheter just through a hole in my belly into the top of my bladder, rather than through my urethra and in to my bladder.
Getting an SPC
Initial insertion is generally done in theatre under a general anesthetic; they basically find your bladder and insert this long metal needle in the top of your bladder through the skin and then take the metal bit out and thread a catheter through the hole. The catheters they use for a supra-pubic catheter are a higher French (Ch) than the ones they use for regular catheters; this means that spc ones are thicker (16 Ch and up) than urethral ones which are generally for adult females around 12Ch. They can be latex or silicone. When I went in to theatre I stupidly thought it wouldn't hurt as it's only a small hole; when I woke up I needed three rounds of IV fentynl because it hurt so much but that was just my experience, I know others who just had mild discomfort afterwards.
Surgical after care
One thing I would say is it's in an area that initially when you're moving about, reaching things, picking things up, bending down, rolling over, stretching, or twisting, it pulls a lot and can hurt. If you have young kids that you're picking up and things you might want some help with them for a few days, or if you're in quite a strenuous or busy physical job, you might to take a week off to recover. It's still a surgical wound and needs time to heal so you won't be able to do strenuous exercise during that time (usually about 6 weeks, but each surgeon says differently) and for the first week after surgery you might not be able to get it wet, but the surgical team will advise you on things like that. For some people their stoma is in line with their waistband, for others it's under or above their waistband. If you're going into hospital to get an spc, then I'd recommend taking underwear that has a waistband that sits quite high up, are loose fitting and comfortable; as well as loose fitting and comfortable trousers/shorts/skirt/dress. You'll probably need clothing like that for a couple of weeks after until it's feeling more settled. When you first get an spc you will probably need to have a dressing on it for a few weeks until it's healed, because it'll bleed and be quite mucky to start with; remember it's an open wound and try to keep it clean and dry, wash your hands thoroughly and try to wear sterile gloves when dressing your stoma as it'll prevent infections. Catheter clips are well worth using to prevent the catheter or tubing pulling on your stoma (I use the Ugo catheter clips, but I know Bard is another brand of them and they call them Bard Statlocks); these can be and along with catheter retaining straps too, there is a large variety of products that secure catheters and the tubing.
Changing Supra-pubic catheter tubes
Every 12 weeks a nurse (or some people do it themselves) pulls the tube out and puts a new one in. The first few tube changes can be sore, but it gets easier with each change as the stoma heals and the tube tract forms. I've found that even after a year my tube changes are always a bit sore and uncomfortable (particularly if my site is infected or sore anyway). In my experience when the old tube is being pulled out it does feel a bit weird, like your guts are being pulled out of a tiny hole; you may or may not feel the deflated balloon of the catheter catch slightly on the top of your bladder as it's coming out, it's just because the balloon has been inflated for 12 weeks so when it's deflated it's a bit saggy and less streamlined than when it was put in. I usually find my stoma and lower stomach are a bit sore and achey for a couple of days after a tube change, but that's not uncommon. My stoma after a tube change usually bleeds a little for a few days after and takes about a week to settle back down; one thing that I've found definitely helps is Manuka honey (it needs to be medical grade - it's around £6 for a tube on Amazon that lasts up to 3 months once opened. Some NHS trusts will give you it on prescription if you meet their criteria for it).
Infections
in 12 months I've had over 20 infections, all originated in my stoma causing an infection there and then some spread to my bladder causing a UTI. Skin is very unique in that it has so many different types of bacteria that live on the skin (skin flora) to protect us, but things like staph in an open wound can lead to infection, which is the risk of spc catheters. I've had so many staph infections in my stoma that its colonised there now, and it keeps reaching such high numbers that it becomes dangerous and causes an infection. When my stoma is infected it gets red raw to the point where the smallest thing will make it bleed, it produces a load of pus, is sore, can smell a bit like rotting flesh, and it can develop small ulcers on the inside of my stoma. You will get to know your stoma, if you notice something unusual about your stoma, such as it getting more mucky or sore, then ask your district nurse or doctor about it. They then may do a wound swab to send to a microbiology lab at a hospital to check for bacteria; if they find bacteria that is likely to be causing an infection then they will test in the lab to find the best antibiotic for it.
Why did I get an SPC?
I got an spc because I am in urinary retention because of my EDS, and Foley catheters were blocking every other day and a nurse would have to come out and replace it. It could take the nurses up to 12 hours to arrive and all that time with a blocked catheter was painful as my bladder would get fuller and fuller and wouldn't be able to empty. Then when the nurses arrived it could take them an hour to get a new catheter in which wasn't pleasant! Even with all the infections and stoma care the spc catheter is worth it for me because I don't need to worry about it blocking, it's easy to change, more comfortable, more dignified and as I'm in a wheelchair full time having to sit on a Foley catheter tube all day was so uncomfortable!
Why couldn't I use intermittent catheters?
Firstly I'm incredibly difficult to catheterise, also my mobility and eye sight would make it very difficult for me, and I'd have to worry about getting to the toilet and on to the toilet, it would just make life a lot harder. For me having a tap on my catheter that I can turn on when my bladder is full and drain in to a leg/night bag and then turn off again is better suited to my needs.
Products
There are many different brands, types, and variations of catheter supplies, if one isn't working out for you then don't hesitate to try other brands and products until you find ones that suit your needs. Many companies will offer free samples if you go on to their websites or email them. When I left hospital with a catheter I was given one nights worth of supplies, I wasn't told what I would need or anything, I was just given the number of the supplier that the NHS has the contract with in my county. I called them up and told them I was clueless about what I needed, and they talked me through what I would need and the quantities and said what other people find useful; she talked through everything from the options about the different types of drainage tap I wanted on the leg bags, to whether I wanted leg bags with long or short tubing, to whether I wanted single use or drainable night bags. I was on the phone to them for over an hour, and they answered every question I had. Since then there are a couple of products I've changed and I've changed brands of leg bags and night bags, but the help of that lady that day and her vast knowledge was invaluable. Never be afraid to ask your nurses or suppliers questions because there always has been someone in your situation before, and even if they don't know the answer quite often they'll find out for you.
I hope that explains about supra-pubic catheters!!
Wow thank you so much for sharing that information. I never knew anything about them so knowing all that information now is amazing
@@sarahnobbs1957 You're welcome, it's the information that I wish I had known before getting mine! I'm glad that it was useful!
I've been using caths (supra-pubic then intermittent through mytrofanoff) since I was little with infections coming almost every other month and what I've found best for personal infection prevention is sterile saline bladder flush which I get from my urologist office and D-mannose otc. Now I can go about 4-6mo without an infection and it's great
Thank you for sharing your experience and knowledge regarding your type of catheter! I find it fascinating to hear from everyone how they deal with the daily life of living with different medical conditions.
I wish you all the best!
@@kinseybay97 thank you! I've tried those on and off but without any success as the infection comes from my stoma rather than bladder. I shall try getting them done regularly and see if it helps! Thank you.
I have MSSA colonised, so it's impossible to get rid of, so everytime I'm off antibiotics they rapidly increase in numbers until it reaches dangerously high levels which then causes infection. I've even tried chlorhexadine scrub (the stuff surgeons clean their hands with in surgery) but without any real success.
I've been in hospital for 14 months now due to EDS and neuro issues, which more than likely has a lot to do with infections, it'll be interesting to see if the infections improve when I eventually get out of here! They reckon I'm going to be in for a minimum of 6 more months to a year yet. Hopefully it won't be that long!!
Thank you for your tip, I'll definitely try doing saline flushes more regularly to see if it improves things. x
You are getting better and better at explaining this kind of stuff Amy. So proud of you. I said it the first time you talked about Caths and I will say it again: do not feel ashamed of having to use certain tools to help you have a better quality of life. You deserve to feel comfortable with however that looks for you
you would be a great nurse you explain it so well makes it less awkward you inspire so many another great video
I know
Oh my gosh yes!
I have glasses. Without my glasses I am legally blind. My glasses are the accommodation I need to function in the world. No one looks at my glasses and thinks it's odd or pities me for my glasses. It should be the same for people in wheelchairs, or oxygen, etc.
Or walkers, especially if you look like you're in your 20s.
God, I have severe fibromyalgia and it makes me ... well, handicapped. The longer I walk, the more pain I’m in, and the higher chance I have of falling due to muscle weakness/spasms and general lightheadedness and being a clumsy nightmare (and if I fall - I can get myself up, but it will cause a major flareup that makes getting out of bed even harder). I also have a handicapped placard and park in handicapped parking spaces. Since I’m 22 and, by appearance, look perfectly healthy, I get the ... dirtiest looks, usually from people twice or three times my age. I know they think I’m faking it. It’s like ... why are people so judgemental? Having an invisible illness is such a huge pain. People seem offended by my general existence.
Brinrin I’m 15 and a have a walker. I know someone under ten who has one.
Hmm so should we just act like its nothing?
@@brinrin7029 I feel you there; I try not to leave my house because it's just too many questions to answer when I go out with my walker
I have so much respect for how down to earth and candid you are about this stuff. its really refreshing.
From an Arabian, Muslim girl.. I love you Amy.
"Let your light shine as an inspiration to humanity and BE THE REASON someone believes in the goodness of people."
You are doing a lot with your life. Your videos make people more aware of what those with chronic illness go through on a daily basis. You are giving many people hope by showing you can live a full life despite your condition. You are an amazing young lady!
Amy is AMAZING and I LOVE her so much, I would watch her channel all day
I'm so happy that you're being so open about this!! You're both educating the world as well as destroying the "shame" that shouldn't even be there in the first place! You go girl!
I’ve just been going round Amy’s channel watching all her old videos sad that we will never see her speak and so full of life again :(
Great job Amy! So happy you’re raising awareness & breaking the stigma! I’ve had different types of catheters too (& am having surgery to try to improve it soon🤞🏽) I’m planning to talk about it all on my channel soon as this made me realise how important it is to normalise it! 😊
A Foley catheter is a type of indwelling catheter btw, think that’s the scientific term you were wondering about? But I just call it a foley too :)
And the suprapubic catheter can be used like you said, with a valve to drain when you need to go, or it can be used with a collection bag like a Foley catheter :) Hope this helps people in the comments!
Might write it as a second comment actually so people can actually see it, rather than writing it to myself down here 😂
Novelyn Sumampong thank you 😊 You too, I hope you’re doing well today :)
I love how you are breaking stigma regarding bathroom issues. I had a lot of poop troubles
in elementary school. I got constipated a lot and had to take a lot of different laxatives. I had to drink water with fiber powder every day twice a day. I got a lot of gas and stomach pains. But now I don’t have anymore poop issues and I’m glad for that.
You're great Amy. Never think you're not making a difference. You encourage me each time I watch your videos, because you've been through so much & still are and your spirit is beautiful. I too have a chronic ailment, and I deal with pain and difficulty daily. However, watching you helps me stay strong and motivated. Be Blessed!
Amy,
I don't personally have a chronic illness like yourself, but I have friends that do. Watching your videos has taught me a lot about what they may go through on a daily basis. I appreciate your openness and how candid you are in your videos. It has taught me to pause before judging anyone I see on the street no matter their situation.
Yas! Let's break the stigma! I'm so tired of being stared at lol
Hey Jane, may I ask, do people stare at you for using a catheter? How do others know how you go to the bathroom? I'm sorry if this a stupid question, maybe I'm missing something. I'm just curious to learn, and I definitely do not want to be one the people who make you feel awkward!
Thank you for saying those of us with visible health issues are normal. I have to wear oxygen 24/7 and I do get the "looks" everywhere I go.
Weird question: do you wear eyeglasses? There's a combination glasses/nasal cannula out there that makes the tubing almost invisible--the brand is called Oxy-View. I have zero idea if it works, but it's a pretty brilliant idea!
In my opinion I truly feel most people in general are just Curious about medical issues... just look right back at them with confidence that you are smartly taking care of yourself and your special needs.
As for those who stare like they think they are superior, well, guess what those few bad humans are Not worth worrying about... just stay positive and just ignore them.
There are so many in this world who are GOOD people like Amy who want to spread awareness about EDS and all of it s effects on the human body. As her followers, we help her and help spread awareness by subscribing to her channel.
4:25 it's like the "I forgot a tampon/pad" situation it shouldn't be weird but society has made it stigmatised
Just stumbled on these videos by Amy. You have my total respect and admiration. How brave and thoughtful of you to talk openly about your personal experiences to try and help others. I wish you nothing but the best for the future. And you are right not to be embarrassed, perfectly normal bodily function for absolutely all of us.
Wow, this was a super thorough explanation. Very practical. I think you'll help a lot of people with this video! 💙
Amy: *goes to pee*
Amy: ASSUME THE POSITION
You never have a need to be sorry for not uploading ... if anything we just worry about your wellbeing not about waiting for your next video .... your an inspiration keep on going your teaching us so much 😍
Thanks for sharing your story with so much detail. I have had to use catheters for about 13 years now and still find shame in doing it, feel like I have to hide it and be embarrassed. Hate having to go in public!! You are so right that it shouldn't be something that ppl question...it's our "normal". There's nothing wrong with having medical problems, but ppl are curious about things they know nothing about. Thanks again for being open and making it seem like catheterization is no big deal. Awareness and education are everything!
Great work! I'm a medical student and I found it very interesting and informative to listen about all this from someone who actually has to go through it! Keep going Amy!! ✌
This vid has helped me so much!! I’m 14 & recently started with bladder issues but a couple weeks ago it fully stopped and I was admitted to hospital for 2 weeks. I’ve had a foley cath in but they’re wanting to teach me self catheterisation, but I’m petrified to do it. I’ll be getting taught in the next couple weeks. But I must say this vid has helped it be a bit less daunting 💖
i’ve also been hospitalized for bladder issues with a foley catheter but under anesthesia and they *also* wanted to teach me, but my Mum told them i was just getting in a state so they cancelled. i rlly do not want to learn because it looks painful
очень одинокий wow I didn’t know they could do it under anaesthesia! But I will say, it sounds much scarier than it is. And once you get over the mental hurdle it does get easier ❤️
You seem to handle all if this very well... I am very sure you have your bad days like "why me" but girl you seem so positive and even tho I don't know you, I think your brilliant for sharing your information even when its more "personal"
YOUR AWESOME!
They NEED to use your channel as an educational one! You're common sense approach to your body and issues and the things you have to do to stay welll is amazing. You demystify subjects which most of us haven't a clue about.
I have a suprapubic catheter and you explained how it is placed beautifully. It is actually a Foley catheter placed through a hole in the abdomen into the bladder (just like a feeding tube) mine is hooked to drain bag at night and a leg bag during the day however you can have the little valve thingie to just empty when you need to.
Chronically Justified thank you! ❤️
I always get someone to cather me because IT HURTS SO MUCH. You're so strong for doing it yourself I could never
You explained it all really well! One thing I’d add is that the suprapubic catheter can be used with a valve like you said, to drain when you need to go, but they can also be used with a collection bag like a Foley catheter :) Hope this helps!
and you might not see this since you get so many comments now but huge congrats for 150K subscribers! 😊🎉
I recently discovered your channel and watching this video brought a smile to my face. I’ve been Catheterised since I was 2 years old when I got surgery done on my bladder that saved my life. The types of Catheters I have are Intermittent ones and I’m now 19 years old and I’m still till this day alive and well. I remember I told my friends about my catheter and they were very supportive and they know about the other health problems I also have. And I also want to say I fully agree with what you said at the beginning, I full on agree that it should be talked about like a normal as heck thing and not be weirded out by it.
You’re bloody amazing girl 👏🏼❤️Can’t imagine how many people this will help love how open and honest you are !!! Xxx
Amy was just so down to earth and so good at explaining things in a very matter of fact way with no spoofing fantastic such a great loss
You are so brave to be so honest like this for do many people. Proud of you and you are one strong lady! 💖💗💖💗
I've said it before, and I'll say it again- you are AMAZING, Amy!
The grace and ease you share your daily struggles living with EDS and your other conditions really needs commending on! You're such an inspiration! I absolutely LOVE how you educate your viewers about all the things going on! You're so easy to listen to and very literate! I'm so glad I stumbled across your channel last August! I look forward to each and every video you put out!
Thank you for sharing your world with us! It's so comforting, especially to those of us who also have EDS and other medical issues that affect our daily lives!
Thank you once again, Amy. You're AWESOME!
Much love like always. Your an amazing and ungodly brave human Amy. Don’t ever forget it. ♥️
ps. I generally appreciate that you “showed” people who are new at this how to do it. Those stupid cartoons don’t do anything ( I’m only comparing it the first time I used a tampon. I don’t use catheters)
Love love love how open you are about this. I’m 20 and intermittently catheterise. I don’t know anyone else who does and not many people know about it. It’s a normal part of life for me so it’s great to see someone talk so openly about it.
I just started.
Do u have any tips or anything? I have struggled with Urinary Retention for many years now.
If u prefer to email instead let me know because as u know Amy did give alot of info on it compared to most, but can't answer questions because of whatever gave her wings, but being so new to it & still waiting on proper help & affordable self catheters i'm desperate to do something to stop uti's & needing to do 3 urinations in 20mins & still feeling sore, not quite empty etc.
The tests they done on me showed that I can retain up to around 250mls, I got almost an entire cup out using a self cath & it made me feel so relieved. Still lots to learn so I can do this as safely & hygienically possible to not irritate or cause infections accidentally where possible to prevent.
If others want to comment feel free to as i'm not ashamed to be a part of those who need to occasionally use these as I can partially or sometimes empty ¾ of what I believe is left then either uti or a decent 20mins where it stops, then I try again, then again & eventually drain what I am able to on my own but can't always do this or may hold too long not knowing I need to urinate-(no idea why)
💜So sorry for your loss Tom and Amy's family...lots of hugs to her doggy💙sending you all lots of prayers ...God Bless 🌻😇🙏
You are reaching so many people, breaking stigmas and normalizing illness. What a role model you are. You are living your purpose Amy. Good job girl. 👍🏻
I didn’t even know you had one 😂 it’s definitely interesting to know about though, I’m surprised how (unintentionally) ignorant I was about this stuff but here I am and I’m learning 👍🏻
I love how well put you wrote this. Same for me as well! I have to explain to people on the daily how yes I am a type one diabetic but no that does not mean sugar will cause my death lol. When it comes to even my own disease I am ignorant.
I LOVE YOUR PFP 💛💛💛 ||-//
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Torria Wittenberg I’m also type one diabetic! It’s so cool reading random comments and finding that!!
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I miss you Amy. You helped me cope with my sons feeding tube, catheters, and surgeries. I’m having eye surgery in two days and I’m worried about it. Then I remember Ive only had to have two surgeries due to my autoimmune disease, and you lost your life because of yours. You will never be forgotten ❤ I love you
Well done Amy, the correct level of wit, information and practicality. Thank you.
I stumble upon this channel and I really love how you talk and normalize everything, and how you're so bright and hip! I'm sure you have your down days, but seeing how positive you are on camera brights up my days. You earned yourself a subscriber, Amy!
I am SO HAPPY I just found your channel. You are AMAZING. I am a nurse in NY. We could REALLY use you in our hospitals. Keep spreading your love and knowledge. I will be here every post you put up and I will follow you on Instagram. Huge love and prayers ❤🙏
This is AWESOME! I catheterize myself about 4 times a day and have used foleys before. I'm so glad to see someone actually talking about it.
girl it's awesome you're talking about this and raising awareness! you're such a good role model!
I have been through the catheter ordeal too, never had to do it myself but my heart goes out to you because it isn’t pleasant ♥️♥️
You’re SO right Amy!! It shouldn’t be taboo!!...Which is why i too, am going to share a good bit of my experience/journey-without young people like us sharing, we are unlikely to banish that taboo!! I’m sure, talking about issues such as this, will help many young people in the future!! I’m sorry if this is TMI for some-but it concerns a bodily function that all of us have-it’s just some of us have to deal with it differently to others!!! I had to have a suprapubic catheter (SPC) placed in 2016, after having to intermittently catheterise for several years prior to the SPC. They drained a bit under 3 litres from my bladder when they worked out I had a problem. I had been admitted to hospital with an unrelated infection (not bladder), & had been admitted or over 36hrs when a nurse said to me “have u been to the toilet? No one has said/documented you have”. I was that sick, I couldn’t remember myself!! They scanned my bladder, & I had “over 2.5L” in it. I had no idea-except for feeling a bit uncomfortable/crampy. They then drained just under 3L with an intermittent catheter. They suspect I had had an issue for a long time for my bladder to be that stretched, but just didn’t know-they were astounded that I wasn’t getting much sensation at all until I had over 2.5 litres! As you described, from that point on, lots of tests, trial voids (they once let me go to the point where I had close to 3.5 litres trying to get me to void on my own without catheterising me-it was excruciating!), measuring input/output, “in & outs” (as my nurses called them-when I was full up to my ears but just couldn’t go), then ultimately failing with voiding myself more often than not-so I was taught to intermittently catheterise-(but unlike you it seems Ams), I had an awesome clinical nurse consultant that taught me. She would come to my hospital room whenever I was “due” to catheterise, & she would walk me thru it/show me. I felt SO embarrassed, but she really reassured me, & helped me SO much!!! She came everyday (except weekends) for nearly 2 weeks, until I was confident, then I was discharged. I think it was her that really had a huge impact on how successful I was learning self catheterisation-&, I’m sure, meant that I didn’t get many infections while self catheterising. Unfortunately, due to botched surgery, I had to have the SPC placed in 2016-which has resulted in tons & tons of downs, more so than ups!! It’s easier than intermittently catheterising some times, but much, much, worse at (most) other times. You basically covered most of it fairly accurately with what you said about SPC’s Amy-for some, like me, I have to have a bag on all the time-like you do with a foley. I have a smaller “leg bag” that the SPC connected to all the time, then at night, I connect another larger bag to the leg bag, so I’m not having to constantly empty overnight-which I just disconnect in the morning, leaving the leg bag in place. For some others, you can put a valve on the end of the SPC & just empty at set times (if you have no sensation), or empty when you feel you need-or a combo of the both. For me, I’ve found that having an SPC can be quite uncomfortable at best-but sore/painful, a lot of the time-like the feeling/pain/discomfort most get with a foley that is in for the medium to long term. My bladder does a full time job of trying to eject the catheter, even on good days-so I have lots of painful bladder spasms that have resulted in me needing meds-so I have a patch that delivers a small dose of meds 24/7-as taking “as needed” meds didn’t really work for me-although I do have the “as needed” meds available too, if the patch isn’t cutting it, & I need a top up. One of the biggest issues tho, is that I have tons of issues with infection, since I’m immunosuppressed-not only bladder infections, but infections of the “tract” or “stoma” that the tube goes through. It seems as if I’m on antibiotics more than not, & being immunosuppressed, means that I get unusual, & antibiotic resistant bugs all the time. If you have to catheterise, it may seem as though having an SPC would seem easier/less hassle than intermittently catheterising-but, trust me, (for me at least)-it’s not-I would have kept doing intermittent catheterisation any day, if I had had the option. As a nurse that can no longer work due to my health issues, you covered intermittent catheterisation awesomely well!! I was taught tho to use baby wipes instead of the Chlorhexidine as it can be associated with contributing to resistant bugs/skin sensitivity/stinging. With the baby wipes I was taught to use 3, & to not to clean the area in circles-just 1 really good/firm “swipe”-but 3 times-1 wipe for each “swipe”. But you have to have the area stretched out really well & be able to hold that position until the catheter is inserted and draining-I hope you get what I mean!! The only other thing I was taught that you didn’t mention, was to press down on my bladder as I was withdrawing the catheter-as it helps with emptying the bladder properly. Such an awesome video!! Thankyou so much for raising awareness of bladder issues, & for helping younger people like myself, feel like we are not alone!!! Chronic illness can be so isolating as it is-but adding on bladder problems can make you feel so incredibly embarrassed!! It gives me so much comfort knowing I’m not the only one, as so many times when I go to clinic, the waiting room is full with much older people than me. THANKYOU!!!
I think you're really good explaining this stuff. I work as an assistant nurse so I do and see this everyday basically. These types of videos really needs to be out there . ❤🙌🏻
I am not entirely sure why youtube recommended this, but i was intrigued. i watched the entire video, and wanted to say Thank You, it was very informative.
You are a BIG encouragement to me. Thank you for taking the fear out of what I've always viewed as terrible procedures.
Thank you for this! I’m a Medtech and they never have training on this type stuff *except to clean around it* this is sooooo helpful and informative.
Amy,
I just started watching your videos. I am a new nurse and just been so interested in what it’s really like for my patients. So listening to different people with all different disorders and syndromes has really helped me learn. Especially the part where you talk about how medical professionals just “hoped” you would figure out how to cath on your own. Good gracious! This really opened my eyes up to how I should teach someone in the future. Thank you so much for sharing your experiences and your tips and tricks at home. I bet this is helping so many people around the world. You are such a beautiful, kind, smart women! Keep doing what your doing! ❤️
Dunno how I ended up here but... a friend of our family, then in his late 70's had to have a catheter fitted. He was somewhat deaf and a bit confused. In discussion with the surgeon he kept referring to it as a cafeteria, causing everyone to laugh so much that the operation was delayed while the surgical team pulled themselves together! 😂
I was always scared of getting a catheter in the hospital but you make it sound so easy and nothing to worry about, I’ve never thought they were weird or gross and it’s so interesting learning more about them!
I love this video!! I love how honest and frank you are. I had urinary issues after having my first child. I suffered from temporary nerve damage and I couldn't empty my bladder myself. I had to self catheterise for around 6 months before my body got back to normal and I wish I had seen this video before all that. It would have been a huge help. Loving your videos, I'm sure there are lots of people that you are helping ❤
At my work (university-hospital) a foley catheter can stay in place for up to 12 weeks before we need to change.
A supra-pubic catheter is actually changed if required (usually every 12 weeks).
It's usually the same type as the foley catheter and can have a drainage bag on it or can be closed off with a valve that is opened to empty the bladder as required.
Always interesting to hear about the patient perspective!
I just got recommended one of your morning routines and decided to check out your channel and you uploaded a video 1 minute ago! How amazing! You’re so inspiring, even with your illness❤️❤️subscribed and now onto binge watching your videos😉☺️💞
I just came across your video and want to say I believe you are one of the most caring, kind and generous people I have seen. Thank you for trying to help people who just need to make a connection with someone who understands. God Bless You. You are an angel I believe.
You are an amazing person staying so positive with the hand you have been dealt. Thank you for sharing your story for those who do not know about EDS.
Just saw this post. I’ve been self catheterizing for years and like you I had to figure it out for myself! I wished I would have seen something like this when I was learning. Your instructions were right on and perfect examples. Thank you for doing this video it is very helpful for beginners because it is so overwhelming and you make it easy. Your a lifesaver!
My ex was paralyzed from the sternum down from an accident. He has to cath every 3 hours because he can't feel when he has to pee. He has a condom cath at night for sleeping. He didn't always make it in time unfortunately, but we tried our best to keep him dry!
Sami86K condom cath 😂😂 not heard anyone call it that before. I used to use to conveen catheters while working within complex care for my clients
@@frances2871 ive always called them condom catheters as well!
Sami86K why did y’all break up?
@@brothertn708 wouldnt have anything to do with him being paralyzed now would it ?
Corey Thompson don’t you think that’s a rude question?
Love how open and honest you are. You make a very difficult subject light heated and approachable. I'm sure this video will help and spread awareness to so many people!
Thank you for being so open and honest with a subject like this. I also don't know what it feels like to be completely healthy but you let me know I'm not alone! Anatomy is one of those things we all have but tend to know little about until something goes wrong. Happy thoughts!
You probably get this a lot but you are fucking awesome. Im 36, i nursed my terminally ill mother from the ages of 10-24 and at 27 became chronically ill myself, but without the need to perform medical procedures on myself. Chronic health is a massive head fuck that few people can pull themselves around from. I hope you understand how special you are and the work you are is doing is inspiring and priceless. I am so proud of you and i dont even know you, and so glad i stumbled onto your blog. You absolutely rock and i wish you nothing but joy and happiness.
+Bec Taylor thank you! ❤️❤️❤️
Thank you for sharing......I have MS and have difficulty doing it sitting down...problem can't stand up for long....You did an amazing job describing to us!
You're fantastic! I work at a hospital and am always learning new things about how people live with different conditions and different bodies. It's amazing and absolutely should be talked about candidly so that people know more about each other and themselves. Thank you for what you do!!
Some people have the hardest time for the simplest of things. Thank you so much for sharing. Love your spirit!
I’m a 49 year old male! I stumbled on your channel also! I’m a Diabetic. I have other issues as well! My hats off to you for sharing information about your life!
Girl you have an illness please don’t opologise for not posting it’s amazing you post the amount you do ❤️❤️ you slay at life & I look up to your positivity
i’ve been self cathing for 3 years now!! chronic bladder retention due to Ehlers Danlos! the Choloplast compact catheters are a life saver during school! they are so small and they expand into a regular size one. they’re amazing!
I am now very informed on how to do this! Thank you for raising awareness 😘
Hey sweetie. I am a nurse that work in the community and I deal with all sorts of catheters. A supapubic catheter is exactly like you said a surgically place catheter just in the abdominal wall above your bladder. The catheter themselves are the Foley catheter like the one that go in the usual route. Catheter over here in the UK can be changed anywhere for 12 week to 6 weeks depending on the cather but the supapubic catheter are exactly the same as the urethral ones just changed in a slightly different way :) love your videos xxxx
Totally off topic but this vid is gold for innuendo bingo!
In all seriousness, I love that you are so open! So many people will benifit from this, thank you.
Binge watching your videos you’re amazing! Im a urologic nurse and you’re very informed and know your stuff! I agree, we need to get rid of the stigma around catheters :) the pubic catheters still use a foley so they still have a catheter that comes out and “hangs” but they have the option to use a drainage bag or plug!
i love your confidence and strength in all of your videos so empowering to all the other people out there that are embarrassed to talk about topics like this and for you to give them that little bit extra boost in confidence is amazing
Your message about medically “normal” language reminds me of something my therapist said (I have ms) she said that society has a disability, not people. I love this message. It’s so true. Society has one way to operate that doesn’t work for all of us.
Great job Amy!! So proud of you to get this out there...making it more part of everyday life!!
I had post surgical urinary retention, it’s terribly uncomfortable. I’m sorry you are dealing with this daily. You are an inspiration.
I've had bladder issues for as long as I can remember and have had the same emergency having to rush to the hospital in absolute agony to be cathed. SO, so painful. Every tiny little bump in the road was horrific. I absolutely understand your pain on that (literally)
I got catheters placed regularely when i was 7 years old and then when i was about 14 years old because of a disease i had. it was the worst feeling ever and i hated it so much. just the thought of doing that every day makes me feel so awful. i dont think i could do that. you have all my respect and i think its so awesome that you talk about that stuff and show so much of it.
I'm sure you helped more than one person with your video. I've learned a lot from your videos; you're definitely making a contribution.
I had a procedure done so that I can intermittently cath through a conduit (hole) in my belly button. I'm a quadriplegic with basically no hand/finger function. I had a foley catheter for many years and hated it. I hated wearing a bag. I was also worried about bladder cancer, which is more prevalent in people who have catheters in long-term. I am able to cath independently and I'm very glad that I got the surgery! Unfortunately, I had to get the surgery twice because the first conduit developed stenosis - it basically closed up. It also wasn't in a good location. It was below and to the side of my belly button so it was harder to access. It's really important to find a urologist with a lot of experience! My second one was awesome! I had it done in 1998 and it's been fine! Great video, Amy!
I dont tell many people but i have a lazy eye and that same eye is half blind. I have excema and have a dicease were my nose bleeds lots randomly thank god im not weak to blood(your my literal hero)❤️
What a beautiful young woman you are. I'm sure you have helped many that are shy or just don't know how to use a catheter on themselves. Much love, peace and respect. Blessings
I’ve been self cathing since I was 8 I’m now 17
Same except I'm 41
I cannot picture my 7 year old placing a cath by herself 🤭
omg me too it’s really not that hard if you have a stoma if you don’t then I totally understand
Ive had to do catheters since birth but ive done my catheters (instead of my mom) since around 9 ish and i am now 25
Does it hurt?
Great job in a thorough explanation! I too have EDS, plus all of the other awful diseases that go with it. I’m on F/T TPN, have a G/J peg for venting and meds, POTS, and so much more. In addition, I was getting hit with nonstop UTI’s back in 2014 and “always” on IV antibiotics at home. I started with a regular foley, advanced to a Suprapubic Catheter and then a complete bladder removal. The test you mentioned is called “a Urodynamic Study” and yes, it’s awful to put mildly!!! Because of EDS, my bladder couldn’t empty on it’s own at all and the official dx I got was “a neurogenic bladder”, meaning nerve dead. While I was on that awful throne after they manually filled my bladder to it’s fullest, I couldn’t even piddle a drop! I tried for over an hour and yes, I had an audience, it was humiliating. Prior to the test, I tried all types of foleys for 16 months in hopes of saving my bladder to no avail. I also tried to self catheter, but my odd anatomy made it impossible for me. My spouse and I had a workshop with nurses, much like what you described, and I was very difficult to cathe even for the nurses:/ Because I had been on so many antibiotics over 16 months and still getting nonstop UTI’s, my Urology team made the decision to remove my bladder completely and recreating a urinary tract with parts they cut out of my small bowel, called an Illeal Conduit. So, yes my urinary retention is now gone; however, my EDS related Gastroparesis got so much worse because I now have Short Bowel Syndrome from the surgery. As you are aware, having Gastroparesis affects one’s motility, so acquiring SBS on top further declined the minimal motility I once had. I’m still very bitter about the bladder removal because it’s added many more “unwanted” problems; however, I understand the reasoning. I still get infections, now straight up kidney infections, and my immune system is so weak that I’m already needing the last “superbug” antibiotic on the market. My body no longer responds to “normal” antibiotics. Plus, for added measure, all of my infections since my bladder removal have turned into Sepsis and/or Septic Shock and I have to be hospitalized now for them. I just got out of another long hospital stay a few weeks ago and have been to the ER twice since. It’s so physically and mentally exhausting to say the least. Watching your videos is not only helpful to others who are struggling alike, they are also educating others about diseases that most have never heard of before. I applaud your efforts greatly in making a difference and for getting the awareness out there!! You are a true inspiration!!!
I just read all of that and, wow, you're a trooper my dude. You're so strong to be able to go through this and be able to share your story!
Hello, I'm a carer for elderly and done some young serivce users too and I've changed catheters and clostmy bags (sorry can't spell it)...
love my job knowing I help people young or old every day✔
You are amazing and beautiful girl very brave to share your stories and how you change your leg bag 🤟 don't ever change your amazing girl 💜
I honestly don't know how you live like this (please don't take that the wrong way) you are another type of human being that's for sure. I'm sure your an inspiration to many people around the world 😊😊
Amy! I work in the urology department here in the states. I’m sorry you had to have a urody done! Not fun... love you!
This is so sweet and important!! I’m so glad you don’t have to be weird or awkward about it!! We need people like you!!
Watching this....while wearing a catheter.
A thoroughly informative video!
I came across to your channel 3 months ago and I just want to say that you are very strong and positive. I wish people find and see your videos one day. They will learn to love themselves and learn how to be enough. Social media nowadays makes people feel envy. I’m glad I came to the right side of TH-cam. I can feel the power from you. thank you! And keep up with the good work ! You’re doing great💗
Wow thank you so much for sharing this, you're so strong and amazing. I have had some experience with catheters, they can be painful and difficult. I have a bladder condition known as interstitial cystitis. This is a difficult subject for me, however I feel very comfortable speaking on your channel. Sorry for the long comment, I just wanted to thank you for everything you do. 💖💖
I have this as well. It sucks so bad
how to
I have IC too💙 People don't realize how painful it is.
You absolutely gave me hope. My bowels have quit working and I’m miserable. I’ve had one small bowel movement in two months. Thank you for doing this!
Thank you Amy for doing this! I havent used it in my life but I appreciate you do these videos that educate and help others!:)
I think it’s amazing how you are making this so educational and not awkward at all! Great job spreading awareness and helping people in the same situation 💗