Positives and Negatives of life with a Colostomy
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- čas přidán 20. 06. 2020
- This vid is about MY positive and Negatives of life with a Colostomy/Ostomy. We are all different and will all have different experiences of life with a colostomy bag. So I always recommend watching other youtube vids for a balanced view. My colostomy was due to Crohns Disease.
Thank you. Panproctocolectomy in 15 days time for me! Much appreciated the detail about the Barbie butt - hadn’t realised the healing would be like that! I’ve struggled on for 15 years with no real remission - had to give up teaching. So looking forward to the day I feel in control and can go for a long walk without stressing about what might happen! Thanks for sharing.
Superb video mate, very enlightening and entertaining at the same time. So pleased it's made such a positive difference for you overall and that you're able to share that in such a generous and helpful way, you're a proper inspiration dude. 🤗
Thank you. Helping people is my aim as you know.
So glad I found your channel. I really need all info I can find on living with a permanent colostomy. Do to rectal cancer it seems it is in my near future. Thanks for your honesty 💙🇨🇦
Hi. Thanks for watching. I can only do honesty as that is what people need. If there is anything I can help with feel free to ask.
Really interesting and informative. Thank you 👍
Amazing what you have been through. So inspirational to see someone like you talk about it so honestly and open. Thank you. 👍🏻👍🏻👍🏻
You are so welcome!
Thank you for sharing your incredible story in such a sincere and easy to understand way. Your courage is absolutely admirable.
Thank you so much!
Excellent video. Thank you!!
You are welcome!
Thank you for sharing this information I’ve only had my stoma for 2 months….still learning.
If there is anything I can help with feel free to ask. Thanks for watching.
I'm getting the exact surgery you've had in a few weeks. This was very informative and I am so glad you've gotten your life back. As for the farts, I'm going to be petrified!!! Guess I'm going to have to avoid quiet places.
Have you had the surgery yet? If you have I hope it has gone well.
Amazing video. Thank you very much.
Glad you liked it!
Very informative, thank you.
Thank you for watching
Great watch ,very informative. Take care.
Thank you
Thank you for your insights.
No problems Joan. Hope you are well.
I've recently been researching getting a colostomy. I currently do ACE (antegrade colonic/continence enema) procedures and was told the benefits would be what you described as your pros of the colostomy but I have still been struggling with GI for 5 years now (had to switch to online university because of it). Despite my doctor tweaking my stoma to help with the procedures, it's still troublesome. Your video is really making me lean towards getting one in the future. Thank you so much for your perspective on it.
Thank you for the comment, sorry to hear how long you have been struggling. I struggled for many years until I have my colostomy. Its good to do research, I find I like listening to people that are not affiliated with health care companies or sponsored by companies. I feel you get a more balanced view this way without an underlying sales pitch. I will always keep my channel unbiased and honest. Message anytime and I am always happy to help.
Hi did you get your colostomy? I'm struggling with issues and thinking the same, I'm in the uk and wondering if others are choosing this option 👋
Fantastic video, thank you so much for sharing. I’m in the process of deciding if I should have an Ileostomy and although yours is a colostomy I found it very informative and reassuring. I currently have a somewhat ostomy, I have a apendicostomy where I irrigate my bowel (that decided to stop working altogether after a lower anterior resection)
I appreciate the time you have taken to give us an insight and outline both negative/positive’s
You take care and keep doing your videos you are definitely helping more than just one person 😉
Thank you so much for the lovely comment Georgie. I set this channel up with the sole aim of helping people. So I love reading comments from people that have got something from my videos. I wish you the best with whatever decision you make and if you need any help just ask.
You are definitely a blessing to be sharing such great information on having a colostomy. My friends bowel has just quit working. I'm trying to prepare myself to help her get through this if it becomes a part of her health issues.
It is a great idea to share and educate, give yourself a pat on the back from me!
Thank you!
Great video, thank you for sharing this! It's likely my stoma will be permanent (still have to do the chemeos first) but your video gave me much more confidence! I wish you all the best, and thank you again.
Glad it was helpful! Hope the Chemo goes as well as can be expected.
I'm scheduled for a takedown next week iv had my bag for 10 months this is enlightenment
Hi Brandon. I am glad this video has helped and thank you for watching
Cant thank you enough for this video, i have had ibs-d for 30 years, i am existing and not living, life revolves around toilets, im anxious to go anywhere different, i am speaking with a doctor soon to ask if he will put me forward to see a specialisit as i have decided a colostomy might be right for me. i am gathering as much info as i can, i didnt know about the bottom packing, that was an eye opener ! listening to you, i am sure the positives will outweigh the negatives. thank you
Hi Nicky. We are all different however having the colostomy did give me my life back. Like you going anywhere caused anxiety which in turn upsets the guts. Its a horrid cycle. For me the positives outweigh the negatives. Thanks for watching and commenting. If there is anything else you need feel free to ask.
@@sydneystoma385 thank you for your reply. i am working my way through your posts, i think it must have taking a lot of courage to make your first video, so glad you did! im sure you have helped more people then you know. :)
Hi Nicky. It take a bit of courage to start the channel. But I was motivated by wanting to help others. When I get comments like yours and others it motivates me further. Feel free to ask questions when ever you like and if I can help I will.
Good video and advice.
Glad you liked it!
Thanks you very much for this video
It's my pleasure
Thanks so much for making the video
It's a pleasure to make them and I am glad they help people.
Thank you so much ❤
You're welcome 😊
Love your cactus light.
Thank you
@@sydneystoma385 ❤️
I'll agree totally with eveything youve said. I elected to have an ileostomy just as i was the same as you i'd literally had enough of it all. My colitus had flared up hugely with 20 visits to the toilet every day sometimes more, lots of blood tests, colonoscopies and hospital visits. Now i have no colitus but its the intense pain of the surgery and recovery after which has really set me back. For me ,i'd grown up with the story of ileostomies as my father had had one for 30 years and had a better life than me at over 70! Great video Sir,Thankyou
Hi Paul thank you for watching and leaving a comment. These diseases are just horrendous,. Well any disease is horrendous. Hope you are ok.
@@sydneystoma385 Yeah the ileostomy is all good, working well, skin good too, it's just the post op wounds are taking an age to heal which is depressing me somewhat. Love your channel.
I'm three months post-op. My stoma is healing nicely however the surgerical cut is taking longer. Hang in there champ, it will get easier.
I’ve just had a panproctcolectomy, where the whole large bowel , rectum and anus were removed. I had stitches instead of wound packages in the bottom area. The removal of the stitches was very painful. I am 5 weeks post op, and I am taking it slowly and carefully.
I live in the UK, Cheshire area.
Great video.I was lucky enough to have my stoma done after i have a spinal injury .if i didn’t have it done i would have to wait for a nurse to come and empty me every day.when i had the surgery done ,the doctor said have you named it yet.i said sorry.He then said it will make lots of strange noises and you can now blame it.😂
Hahaha they do make strange noises. I named my quite quickly, mainly to normalise it for my kids. Weirdly it did also help me naming it. Thanks for watching.
I feel better after watching this!🤞
Hi Andrew. Glad its made you feel better.
Must be honest though I.m getting trapped wind on opposite side of stoma. 2 weeks after surgery, difficult to get rid of.
I take it it has passed now?!
Thanks Sydney, excellent 👌❤️
Hello Sydney stoma, thanks for this video, i also have a colostomy, i have a question for you do also have crohn, s dicease? After 6years now i getting more and more problems whit my stoma, like empty the bag 30times a day that, s average. Gladly the lekage is getting less. For all colostomy humans keep fighting stay strong the sun will shine tomorrow,
Wow that's a lot of emptying a day! My Crohn's is odd, I more often than not have the opposite problem and I block up as my intestines are so slow.
My dad had prostrate cancer and now he is on a colostomy..
21:50 it takes me on average 14 minutes to change my stoma bag, that's with having everything out and ready to go. I'd love to shorten the time as I'm still in the mindset of 'change stoma bag? That's going to take time!' I have skin prep, stoma/bag prep.. I'm not in a race but I'm curious how you are shortening the time?
That's a good question about shortening the time. If my skin under the baseplate is good I don't always use every product, that reduces the time. If I am using everything I am still less than ten minutes. I can't really explain how. 14 mins does seem a little long, but if you are comfortable with that then that's all that matters. Have you watched my video of the 3 in 1 product? If you use that your time will half.
Can you eat normally? How is your diet? I had colorectal surgery. I currently have an ileostomy which can be reversed back to my colon, however, the surgeon said I have to decide if I want to have the reverse surgery. However with out part of my rectum and lower colon ( which could result in fecal leakage ) or I could opt to have the whole rectum and most of my colon removed to stop any cancer in the lymph nodes coming back.
Difficult decision. There are not many videos or info on Colonostomy, but many on ileostomy. So thanks for your insightful video.
I think I might consider a permanent colon ostomy after seeing your video.
With an ileostomy you cannot eat normally ( no fiber )
Hi Michael thanks for watching. Sorry for the delay in replying. I find I can eat pretty much anything. My intestines are very slow, so I make sure my diet is balanced. But I can generally get away with eating most foods now. I wish the best with your whatever decision you make. If you need to know anything else please feel free to ask
@@sydneystoma385 How many times a day do you have to change your full bag?
Hi, I live in New Zealand, I had bowel cancer at age 46 and had to have almost all my bowel removed, They put in an internal j pouch and I have my rectum but no more large bowel. I am now facing constant bowel motions and incontenance. I saw my gasto doctor last week and they are wanting me to consider having a ileostomy bag and stoma. I am having a hard time with deciding if its best for my quality of life. I found your posts very helpful. Any Advice would be appercated Thank you.
Hi. Sorry for the long delay in replying, so I don't know if my comment is of use now. Well for me having the colostomy changed my life, it changed for the better. I have so much freedom now which I didn't have before. You have to look at your quality of life now and ask if you can really continue this way or do you try something different.
Stoma nurses are terrific
Indeed they are. Thanks for watching.
I received my stoma 3 weeks ago tomorrow. Stool movements are fine but having significant pain internally. How long did it take for your pain to ease? Skin I fine. This is more of an internal pain. Thanks
hi. Internal pain takes a while to calm down. If stool movements are fine then everything should be ok and it's just healing pain. I would say anywhere between 3 to 6 weeks for the internal pain to calm down.
Why do they leave an ope wound I uk and pack it but in the USA they sew it up?? Is one better than the other? Also what pain med would you recommend as I have a neurological problem meaning I experience pain worse than the average person 👋✌✋
Hi. It's difficult to say if one is better than the other. The way it's done in the UK certainly prevents any small pockets being left which can get infections. I don't know the full ins and outs of the sewing it up procedure. Pain med wise I had a oxycodone which is an opioid drug. It did work well, very well actually.
Strong pain medicine? The only pain meds I could take was toradol or vicodin post colostomy and peritonitis. The pain was all consuming and horrific. I have so much anxiety to have future surgeries.
The recovery pain from stoma surgery and rectum removal was horrendous. Thankfully I have not had any surgeries since stoma surgery. But I had so many before that. I hope you never have to have more surgeries. But yes it does cause anxiety.
@K the reversal was less painful. Recovery quicker but they are so stingy with pain medicine. The drug addicts ruined that. The doctors are so afraid of giving it to people that need it. You are in my prayers. You have been through a nightmare.
Do you get stomach pain and gas when a movement is working it's way around ?
Hi Michael. Sorry for the delay in replying. I rarely get any pain from bowel movements now. The only pain I get occasionally is at the terminal ileum, there is scar tissue there from previous surgeries so occasionally that hurts.
Hi. Can I please ask you. Is there any foods that one should avoid, and can you get constipated with a colostomy. I'm to have an op soon for a colostomy after 11 years of reversal I now have terrible tenesmus and I'm hoping the colostomy will help.
Thanks, Shona.
Hi Shona. It's quite difficult to answer the foods to avoid question as everybody is different. I feel everyone should have a balanced diet, can you get constipation with a colostomy? Absolutely yes! With an ileostomy less likely, but certainly with a colostomy you can. So having a balanced diet will help prevent constipation, and eating food with fibre will help prevent constipation. I have recently been diagnosed with Slow Transit Constipation. This is different to normal constipation and will not go away. It means my intestines have completely slowed down. So I have to take meds to make it speed up. This has nothing to do with the Crohn's disease.
@@sydneystoma385 I also have what the Dr said was a motility disorder. I take cinitrapride, can I ask what you take for yiur slow transit.
As a recent stoma person , you were spot on . I had rectal cancer for my bag is permeant as well. I feel the same it only been since feb8 2023 , my life as improved 90 percent , any ways thanks making this , I do feel weird sometimes about it. Little victories I call them !
My grandpa using this since 3/4 years. It's really difficult to find good quality colostomy/ostomy/stoma bags & other elements like coloplast ostomy gel & others of it because the current finance crisis situation in our country Sri Lanka🇱🇰 We are spending very much for those cause very expensive & rare to find here. I really need help from the International friends/audience to help the people who are using this with proud. I hope for your help as soon as possible ❤
Humanity is forever immortal !!!
Hey Sydney
Please my dad just got a colostomy and he still feels like stooling through his enus but it's fluid that comes out and it's very painful when he stands.. and how long will he start walking again?.. thank you very much for this video
Hi Will sorry for the delay. With my colostomy I had all of my rectum removed it was not in place. I think for your dad there will be a period of a lot fluid coming out and that should calm down. However I believe if the anus is still in place there will always be fluid. It's worth talking to the his stoma team . In terms of feeling like stools are there that should subside aswell
@@sydneystoma385 thank you very much sir
The pains from the enus are so unbearable sometimes..
I just hope the pains reduces too
I had my surgery 3 weeks ago spend 2 weeks in hospital had 90 stitches and a bag in icu my voice hasn’t come back properly because of the pipe down my throat in icu yes the pain is horrific I am going to see a therapist as my operation was an emergency one the pain was to much at home recovering it’s hard to get used to it’s a big thing to go through it’s the shock of it all as well
It is a huge thing to go through. And certainly an even bigger thing if it was an emergency op and not planned. It is a tough recovery but you will get there. Much love to you Michelle and feel free to ask any questions whenever you want.
@@sydneystoma385 thankyou so much
@@sydneystoma385 am scared of getting a shower and it coming of when it gets wet ?
@@Michelle-qd9gm what back are using? Most bags stay on in the shower. I go swimming in pools and the sea and it has never come off. I also shower without a bag on. I did a video on going in water with a bag.
@@sydneystoma385 thankyou il go and find it I think it’s just because I’ve had it done and am nervous 😬 it’s a lot to take in isn’t it
I definitely concur with the excruciating pain from the Tigerderm tape seal over a wound from the woundvac as I had when a 30 ton forkliff ran me over from behind, shearing off my anus and a good portion of my buttocks had to be debried and my foot was amputated and my other leg has permanent drop foot and a knee that doesn't bend past 60 degrees. Was in the hospital and therapy for 6 1/2 months. The hardest thing for me is that I have a fistula where the anus was and smelly mucus leaks from there extensively every morning as the DR wouldn't remove my rectal tube as it is too risky for me so I live with that. The bags smell bad once poop has been in the bag so I have a spray hose on my toilet that I extensively clean my bag with when I have a movement. Mine is not as bad to conceal but it's noticeable with a T shirt on. The postive is I don't need to worry to have a movement at anytime especially when driving rather then having stomach pains and anxiety over a accident. I just keep extra bags and wipes when I travel. I myself have had 18 surgeries and think I'm done for now as most was during that 6 month period. I have a lot to live for with 4 kids and a wife and I'm extremely fortunate that they help and encourage me to be a better person. I can't drive my vehicles or ride my motorcycles and can barley walk right now but I have all I need and maybe one day I will be able again. Thanks for your story ✌🏽🇺🇲
Wow, thank you for sharing, you have certainly been through a tough time! I am glad to hear you have a fantastic wife and children supporting you, that helps so much. I wish you the very best moving forward
How often do you change your bag?
Once every couple of days. My output is so so slow!
@@sydneystoma385 but when you do have output, do you have a lot? Sorry for these questions, i am having a surgery next week and I am scared of a lot of things.
Does your stoma make loud farting sounds and how loud is it?
Hahaha yes Sydney does fart on occasions! It depends on what I eat or drink, but yes they can be very loud at times! Which can be amusing but sometimes it is a little embarrassing.
Well it's been six months since I had my colostomy. And if thought my life was shit before (pun intended) it is now worse. The op may have saved my life, but?
What are you struggling with?
Same 1 month now for me.
It is traumatic especially if an emergency op with no preceding chronic conditions such as Chrons disease. I am 15 months on and have a temp colostomy which can be reversed but I don't feel I can face another op. I struggle mentally and my body looks ravaged now and I'm underweight, I know my life was saved as it says so on the discharge sheet, I feel guilty for being ungrateful . I must have brought this on myself through dietary indiscretion. I am okay in the day if I keep busy and the stoma is quiet. I have regained my full fitness so that helps, but it took at least 8 months. I haven't had any pain since the op and have felt well. I know there are braver souls than me out there that are coping with worse. I am just 70 but work part time . I would say my tip is don't eat too much in the day, evening and cut back if you have a day where you feel uncomfortable.louise
Not many positives
Its certainly been a massive positive to my life.
Disliked by accident
Thats ok. If you press the dislike button again it will undo it. Also it doesn't tell me who dislikes. But thank you anyway.
Thank you. Panproctocolectomy in 15 days time for me! Much appreciated the detail about the Barbie butt - hadn’t realised the healing would be like that! I’ve struggled on for 15 years with no real remission - had to give up teaching. So looking forward to the day I feel in control and can go for a long walk without stressing about what might happen! Thanks for sharing.
I hope it goes well and hope the future will be bright and full of stress free walks!