Top 5 Tips on living with a Bag | Cutting with Crohn's & Colitis | Episode 6
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- เผยแพร่เมื่อ 15 เม.ย. 2017
- Having a colostomy or ileostomy bag can be challenging at times, but it can also be a new lease on life for a lot of people. Here are my five top tips to help have a better life with a colostomy bag.
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Great video, Joseph! Thanks for sharing. I'm in the UK too. I had ulcerative colitis all my adult life and then colon cancer in 2015 and have had a permanent ileostomy since then. I agree with everything you've said. For me the bag was absolutely liberating - no more pain, urgency, chronic diarrhoea, accidents... I eat anything I want and life is good! I have had problems with a recurrent parastomal hernia (now repaired twice, and have been waiting FOUR YEARS for the repair... yes, I know, that's our National C*VID Service for you! - but I can live with it. People shouldn't be afraid of having a bag - there's lots of help and support out there, and I have always been very open about it too, which I find really helps. My stoma is called Kermit. Great to name it - really helps you cope in the early days!!
Hey,
I am so much motivated after watching this. You looks so confident with a stoma.I have got illeastomy almost 35 days running.I was little bit worried,but after watching you,feeling good.
Thank you very much, Im glad the video could help. Also welcome to the bag club haha, good luck on your journey
Thank you for some fantastic ideas and
Great video.
erric101 thanks!
Thank you!!
Your welcome, thank you
Great video!
I second everything you've said here. I take 2 spare bags with me everywhere (even for a meal) as you never know when a leak might strike 👀
I've made a video of what I take in my handbag 💖💪🏻
Good on you for sharing! I have just uploaded my first video, love that you have done this! ❤️
Awesome I'll check it out!
nic
Hi,
I had surgery to remove a cancerous tumor from my intestine about three months ago and I’ve just got the news that I won’t be able to be reconnected, that I will have to use the colostomy bag for the resto of my life.
How do you come to terms with this news? I feel like I want to die and I’m seriously considering not taking the chemotherapy since I still have cancer in other places in my body. I’ve read everywhere that you can have a normal life, but I’ve had a few incidents with the bag, bad moments, and I really don’t see how people can say that. I haven’t even been able to be with my girlfriend, because I’m too ashamed to let her see me without my shirt.
I think you are the first person I’ve seen who really makes the distinction of “normal”, because I do not feel normal at all.
I’m pretty sure that I will end my treatment and let my illness take its course, but I guess I’m trying to find some way to make peace with this and maybe allow myself to go on.
I am so sorry that I didn’t know this comment was here on this video. If I did I would’ve answered sooner. It sounds like your going through a hell of a time and I think you should reach out to the support around you. Tell people how you feel and they will help. I’m sure your partner still loves you and cares about you bag or no bag but if you don’t speak to them you might never hear the words you need to believe it’s true. I know sometimes bags can leak or be a little smelly but there are things to do to prevent this. Like good nutrition, finding a good bag that doesn’t leak (there are 1000s of types) you can have toiletries that block the smell. Also you can live a full life with a bag, I’ve traveled, I train, I climb and I know friends who skydive. Who have a bag as well. Life is worth living if you have a bag. Please reply back and I hope your well
Have you ever had your stoma swell and protrude more after a workout or heavier lifting day ?
Considering getting the surgery. Uc is wrecking my life. Can you eat hamburgers and pizza and have caffeine? Once a few weeks have passed since surgery? Not talking every day but if you wanted to get a burrito or tacos or snack on chips and dip while watching t.v. Or eat spaghetti? Thanks.
Hi I can eat whatever I want, except nuts and uncooked vegetables. So I do enjoy pizza, burritos and coffee. After surgery you might not be able to and will have to learn what food your body can handle. Everyone is differeny. I wish you all the best.
Hola soy de Argentina estuve viendo tu video!!! Yo tengo una Ileostomia definitiva desde el año 2019 en ese entonces tenia 52 años!! Es verdad que se termino mi sufrimiento, mis constantes diarreas, sangrados, dolores no poder comer bien y en variedad y yendo permanentemente al baño!!! Y esta Ileostomia si bien me salvo la vida porque me habia salido un polipo adenomatoso cerca del ano!!! Para mí a pesar q ya son casi 4 años q llevo la bolsita todavía me cuesta aceptarlo y me cambio mucho la vida ya que me siento muy limitada ya que el llenado de la bolsa es permanente coma lo que coma se me llena inmediatamente la bolsa y a cada rato tengo q estar vaciándo y es por eso se me hace dificil llevar una vida normal!!! Por lo que queria preguntarle si Ud le pasa lo mismo con el llenado de la bolsa si es permanente y continuo cuando ingiere cualquier comida??? Gracias desde ya!!
I have a ileostomy and Type 1 diabetes. I'm 28 and weight 100 lbs, really trying to put weight on so that I can work out. Any special diets you recommend?
I checked out your weight gain diet video and tbh it looks like you have everything you need. As long as you keep tracking and see the scale go up you're going to do well. My father and my brother both have type 1 diabetes and what advice I can give from what I learn from them is don't be afraid to eat a lot if you feel like it. Also before training make sure your blood sugar is stable and not going up or down before training. I look forward to watch in your progess.
Thanks for your input! I also want to know how do you deal with having gas/wind/farts during a video? I get really aggravated when I'm recording and have gas, most of the time I just delete the footage.
TheDiabeticGeek to be honest I've not had that issue. Maybe it's timing and I'm just lucky. But they did tell me that in your first year your body will be more gassy. As it adjusts to the bag. How long have you had it?
Joseph Greenly 6 years I've had my bag, but still to this day I'm having a lot of gas, itsLike you said it must be timing.
TheDiabeticGeek ah I see. Hmm maybe timing. I always find when I eat that's when the bag start "working". Like a one meal in one meal out system.
Hey I’m in the hospital as we speak and just got this surgery done . I’m having a really hard time accepting that this is my new life . I living my worst nightmare. I really don’t want to keep living. Please give me some advice on how you were able to adopt to this and can you have a normal dating/sex life . Reason I ask is because I’m 27 and feel like life is over after having this surgery
Having a bag won’t ruin your life at all. I can’t speak for you as I don’t know what you’ve been through and with this disease there is a lot of context to each story. However having a positive mindset will make your life and recovery easier. I had my surgery at 17 and I’m now 30. I’ve been to university, got a good job and I’ve had many relationships. I’m not bragging but I’m sharing this because not once did my bag stop me and the main reason why is because I never thought it could. Please don’t throw away this opportunity there are so many people with a bag who do amazing things, there are many Facebook groups who can support you, also crohns and colitis UK have people you can talk to.
Joseph Greenly listen thank you so much , you have no idea what your words have done . They got me through a tough day today in the hospital I’m still recovering from this surgery and like I said feeling super depressed. All I can think about is how I’m 27 and having a normal life is over especially dating. What girl will wanna be with someone like this . But looking at your video n your reply got me through the day so thank you . Hopefully you had an email or I can give you mine , It feels better listening from someone who’s in your shoes ,of course as long as you ok with it but if not I understand and your reply was more then I could have asked for .
@@berto12911 Hey its probably better to contact me on Instagram because I'm more active on that, also there are loads of people out there in the instagram community who could help you. There a lot of people out there who will look past the bag and take you as you are. But you have to not let your bag dictate your life. You can have a very fulfilling life with a bag, I promise.
How do you manage to exercise and not get a hernia.
+alllives matter luck maybe. But I've treated myself like a normal person and not missed any exercises. Except crunches which I don't do as I don't see the point if I do heavy squats which work my core. I also wear a weight belt when lifting really heavy.
@@JosephGreenly Does the belt go over your stoma? My old one did so I gave it away.
I made a video about using a belt. And yes it does go over my stoma but I used to have it above it instead. However it feels fine covering the stoma.
@@JosephGreenly could I exercise with a stoma hernia.? Since I have my bag I am feeling a lot better and I want to get back kayaking and running.
@@cathalodiubhain5739 I wouldn't feel comfortable advising on something like this. I would speak to your stoma nurse and doctor, maybe ask for a regime to get you back to exercising.