Hi just wanted to say I'm currently electing for a my stoma surgery. And I've been looking for weeks for someone to share their story to why they chose. So many ppl have them do to an emergency it was so reassuring and refreshing to see your video. I hope my decision works out the best for me as yours did for you x
Hi Valsari. Thank you for watching. Yes you are right so many people do have stomas because of emergency surgery. It can be difficult to find accounts from people that have chosen to have it. I am sure your decision will work out and I wish you the best. The recovery will be painful but its short term on the grand scheme of things. If there is anything I can do to help please feel free to ask.
I love your story of courage and tenacity. You are such a great example of this. Keep up the great work of progress. I know you are faced with challenges still but you are better.
I am in the same situation where I’m not forced to have a colostomy. I had anal cancer 15 yrs. ago. The radiation has caused me more problems as time has gone by. You are amazing to tell your story. You don’t know how much help you give to others being able to talk about this. That’s the problem I’m never certain I will be safe when going out for dinner.
Hi Barbara. Yes I could have carried on without a stoma. But my life would have been miserable and I would have had loads of small surgeries. The stoma absolutely gave me my life back. It's coming up to four years of having the stoma and I have not had a single operation since. I am so pleased my videos help. Thank you for letting me know that.
@@SharmaBen I am unfortunately totally ignorant on what she's doing bad things are almost constantly changing its really severe she's heading to Johns Hopkins in a couple of months
Horrific. I have Crohn's and have had it for 20+ years however your symptoms described seem incomparably worse. I was fitted with a stoma 6 weeks ago due to a colon perforation. Appreciate your time in sharing these experiences and putting this channel together!
@@sydneystoma385 it's improving day by day. I'm still unsure what the long-term outlook will be. Initially I saw this as temporary and I think right now that's still my hope. I've also read about people's dramas getting stomas reversed. It's been a huge adjustment for me and I'm not sure yet how I feel about it all. I had quite an active life before stoma and worry about mobility and the risk of hernias and other complications.. I also see folks like yourself who get on with it so I'm hopeful.
Was it worth doing the biologics before getting your stoma? I'm looking at getting my first infusion next week, bit I feel like I should just get an ileostomy.
Thats a good question Ryan. Firstly we are all different and you may respond really well to biologics. I did biologics for a very longtime and I believe they have caused me other problems due to being on them for so long. Some of my symptoms lessened when I was on them, but other never changed. Then I got to the point of thinking well I am still have many surgeries and still on these biologics and nothing is improving. So I made the decision to have the colostomy. I am completely medication free at the moment and have been for a couple of years. I have recently started having some crohns flares but I am managing that without meds. Its a long answer to your question but I would give the biologics a try, you have nothing to lose trying them.
I am currently going from biologic to biologic. Nothing seems to be working. I have refractory crohns in the rectum and anus. Thanks for sharing your experience. It helps with making a life changing decision. So far I’ve avoided fistulas and abscesses but can’t exclude the pain from fissures and ulcers 😣 you’re right - it’s barbaric! I don’t want to lose my butt but I can’t live like this either.
Hi. Thanks for watching. I just got to the point where I wanted to lose my butt, I just couldn't take it anymore. But we are all different and have different thoughts and needs. I honestly believe due to the length of time I was on biologics they have caused other health problems for me. But overall I am healthier Crohn's wise than I have ever been.
@@sydneystoma385 I completely understand. Biologics come at price of your remaining health. The more modern ones definitely have less side effects, in my experience. Ustekinumab has been fab but I can’t get it due to postcode lottery and Bedfordshire ccg keep denying all my appeals. I’ve had all the others. No one’s offered me a permanent stoma as of yet.. I suppose it’s something I’ll have to request.
@sydneystoma385 i read about it somewhere that after removal of large intestine a patient would lack vitamine b12 and some other vitamin that would need to be taken as supplements
Hello mate you left a comment on my channel about a beer channel you have set up, it went into my spam and I lost it, what's your channel called again bud? Cheers
After the surgery it is very painful indeed. Sitting is not an option for a few weeks. But it was so worth it for how well I am doing now. Recovery is about 3 months for this operation, I was walking and sitting within a couple of weeks
Hi just wanted to say I'm currently electing for a my stoma surgery. And I've been looking for weeks for someone to share their story to why they chose. So many ppl have them do to an emergency it was so reassuring and refreshing to see your video.
I hope my decision works out the best for me as yours did for you x
Hi Valsari. Thank you for watching. Yes you are right so many people do have stomas because of emergency surgery. It can be difficult to find accounts from people that have chosen to have it. I am sure your decision will work out and I wish you the best. The recovery will be painful but its short term on the grand scheme of things. If there is anything I can do to help please feel free to ask.
I am really, really happy for you, that decision has been such a reward for you!
It certainly has. Thank you for watching.
I love your story of courage and tenacity. You are such a great example of this. Keep up the great work of progress. I know you are faced with challenges still but you are better.
Thank you. And thanks for watching
I am in the same situation where I’m not forced to have a colostomy. I had anal cancer 15 yrs. ago. The radiation has caused me more problems as time has gone by. You are amazing to tell your story. You don’t know how much help you give to others being able to talk about this. That’s the problem I’m never certain I will be safe when going out for dinner.
Hi Barbara. Yes I could have carried on without a stoma. But my life would have been miserable and I would have had loads of small surgeries. The stoma absolutely gave me my life back. It's coming up to four years of having the stoma and I have not had a single operation since. I am so pleased my videos help. Thank you for letting me know that.
My mom is over a decade out from anal cancer too! Good to see another survivor here watching!
you are great, I wish you a happy life with your family.
Thank you Amelie.
Hope all is well with you thank you for making this video as my daughter is dealing with a severe case of Crohn's
Sorry to hear that about your daughter. I am very well thank you. If there is anything else I can do to help please feel free to ask.
@@sydneystoma385 thank you for responding glad to hear you're doing well and if I have any questions I will definitely ask you
@@SharmaBen I am unfortunately totally ignorant on what she's doing bad things are almost constantly changing its really severe she's heading to Johns Hopkins in a couple of months
Horrific. I have Crohn's and have had it for 20+ years however your symptoms described seem incomparably worse. I was fitted with a stoma 6 weeks ago due to a colon perforation. Appreciate your time in sharing these experiences and putting this channel together!
Thank you for watching and leaving a comment. How are you getting on with the stoma?
@@sydneystoma385 it's improving day by day. I'm still unsure what the long-term outlook will be. Initially I saw this as temporary and I think right now that's still my hope. I've also read about people's dramas getting stomas reversed. It's been a huge adjustment for me and I'm not sure yet how I feel about it all. I had quite an active life before stoma and worry about mobility and the risk of hernias and other complications.. I also see folks like yourself who get on with it so I'm hopeful.
@@0rtmastahope you are feeling well
I hope the exam came out good.
Was it worth doing the biologics before getting your stoma? I'm looking at getting my first infusion next week, bit I feel like I should just get an ileostomy.
Thats a good question Ryan. Firstly we are all different and you may respond really well to biologics. I did biologics for a very longtime and I believe they have caused me other problems due to being on them for so long. Some of my symptoms lessened when I was on them, but other never changed. Then I got to the point of thinking well I am still have many surgeries and still on these biologics and nothing is improving. So I made the decision to have the colostomy. I am completely medication free at the moment and have been for a couple of years. I have recently started having some crohns flares but I am managing that without meds. Its a long answer to your question but I would give the biologics a try, you have nothing to lose trying them.
You should know that if you have an ileostomy you will not be able to absorb water or any 'B' vitamins.
How have you got on?
❤
I am currently going from biologic to biologic. Nothing seems to be working. I have refractory crohns in the rectum and anus.
Thanks for sharing your experience. It helps with making a life changing decision.
So far I’ve avoided fistulas and abscesses but can’t exclude the pain from fissures and ulcers 😣 you’re right - it’s barbaric!
I don’t want to lose my butt but I can’t live like this either.
Hi. Thanks for watching. I just got to the point where I wanted to lose my butt, I just couldn't take it anymore. But we are all different and have different thoughts and needs. I honestly believe due to the length of time I was on biologics they have caused other health problems for me. But overall I am healthier Crohn's wise than I have ever been.
@@sydneystoma385 I completely understand. Biologics come at price of your remaining health. The more modern ones definitely have less side effects, in my experience. Ustekinumab has been fab but I can’t get it due to postcode lottery and Bedfordshire ccg keep denying all my appeals. I’ve had all the others.
No one’s offered me a permanent stoma as of yet.. I suppose it’s something I’ll have to request.
What medication do you have to keep taking after colostomy. I think B12 will be life long. Is it? What else?
Hi. I am not on any medications.
@sydneystoma385 i read about it somewhere that after removal of large intestine a patient would lack vitamine b12 and some other vitamin that would need to be taken as supplements
Hello mate you left a comment on my channel about a beer channel you have set up, it went into my spam and I lost it, what's your channel called again bud? Cheers
How do you feel when you sit and walk. After the operation, is there pain that you can endure?
After the surgery it is very painful indeed. Sitting is not an option for a few weeks. But it was so worth it for how well I am doing now. Recovery is about 3 months for this operation, I was walking and sitting within a couple of weeks
Have you ever tried other dimensions of medication? Or only allopathy and surgery ?
Not really other than altering my diet.
Do u close your colostomy,is it temporary....
I use closed colostomy bags and my stoma is permanent