Yes,yes I am relieved,I'm not going out of my mind! I have still,after 4 years,all the 'feelings' you have described, I mentioned to my surgeon but he didn't pass(oops!)any comment. I have learned to live with this but have to admit when the feeling does come I miss a good old sit down...thank you I do feel healing is easier for me after listening to you.
Hi. Thanks for watching. You are certainly not going out of your mind! Phantom pains are very real. I am so pleased my videos help you. Thank you for leaving a comment.
Even though you miss sitting down and I presume feeling that relief! Would you swap how you are now for how you were back then? Why did you need a total proctectom Ps. I am trying to avoid this.
Hello Chris, I am writing to you just to thank you for your channel. I am a guy in my 50s was finally diagnosed with UC in 2011 having many flare ups though out the time, in 2019 my wife and I decided to emigrate to Adelaide Australia with many years of planning. This huge change in our lives gave me my biggest flare ever and after many months of deteriation in Dec 2020 I admitted myself to hostital in a planned emergency where they removed most of my main bowel leaving the tail end in do to how ill I was, plus creating a new stoma. Now I am 3 weeks post op from my follow up surgery to remove my anus and rectum (barbie butt) it has been a long and painful journey for not just me but also for my amazing wife whom without I don't think I would still be here. I just want to thank you for all your posts I have watched each and every one of them. When your in your hospital bed you think your the only one that why people like you are so important for people like me. It it so very painful at the moment but like you say only for the short term. Hopefully we can star to enjoy this beautiful country Thank you again Chris and God bless.
Hi. Thank you so much for your comment. As I say many times I only do this channel to help others. So it is so rewarding when I get comments like yours. I am always interested in hearing other people's journeys with these awful diseases. You have certainly had a tough time, and wow what a move aswell! I am very jealous! I have never been to Australia but for some very unknown reason I have this pull to want to live there for many years. Unfortunately my wife won't make that move and I respect that especially as we have never been. Like your wife my wife has been absolutely amazing, like you I do not believe I would still be here if it wasn't for her. Our partners put up with an awful lot also with our diseases. I have always said it's harder on them then us, whilst we lay in agony either at home or in hospital they have to deal with everything else, the running of the house, looking after children, keeping relatives and friends updates, going to work, and dealing with their own emotions as they try to remain strong for our benefit. It makes me happy you have an amazing wife at your side. Yes having your rectum removed is very painful, apparently it is in the top 5 most painful operations to have! But as you say it's short term on the grand scheme of things. Again thank you so much for sharing your experience. I wish you all the best with your recovery and I am always happy to help with any other questions you have. Now go and enjoy the beautiful country of Australia with your lovely wife! Take care and best wishes.
I get the same thing after my ILEOSTOMY - Feeling like you need to pass something. Well, in my case it's called MUCUS - they never told me about that though!!!!!!! I never realised that so many people out there are going through bad times - we don't know until we come on here,it's only people like us, that know and share our experiences etc. You can listen to all the EXPERTS, but they just keep telling you, that you can 'lead a normal life' - what a joke!
4weeks post op, I just get the need to break wind feeling, then the stoma speaks! My butt wound wasn’t packed, it was all sewn up but now I feel as if there is a cord of tissue down the middle of the join… I’m not brave enough to look yet.
Hi Elizabeth. Go on have a look be brave. 😄 Yes that passing wind feeling I think is probably similar to that feeling I have when it feels like something is coming out. Wishing you the best with the rest of the recovery.
Hi, Elizabeth, like you my bottom was sewn up after bowel cancer and I couldn’t see, and definitely did not want to see my new bottom. It felt horrendous. 18 months on it feels and looks a lot better ! I still get the urge to ‘fart’ from my bottom sometimes but when I remind myself there is nothing there to fart out of the feeling passes.
Hi I had an ileostomy last year. I still have a rectum and I get these pains every so often . They can be quite painful. I actually sit on the loo and push down and it seems to help. Thanks for posting Regards Jeff
Hi Jeffrey, yes I have heard of other people that still have their rectum have these pains. I think it's more common in people that still have the rectum in place. Thank you for watching and leaving a comment.
My sensation of needing a poo traditionally is actually a sign that I need a wee! I assume something to do with the bladder swelling and pushing on the lower part of my bowel, and the nerves in the area still being a bit confused. It's not a problem, just a bit weird.
It doesn't apply to me... though I visited the surgeon about a reversal, hernia at the same time... sounds a bit daunting, 5 hour operation, so I.m leaving it for now. Did get mucus early on, seems to have disappeared now. You're looking well again.. thanks.
@@sydneystoma385 Fearful! The thought of another long incision, it's the long hernia, my health seems pretty good so far.. though I have to wear a belt permanently..it's a risky op. Thanks
Recovery is all about being patient and not rushing things. Just take your time to rest and heal. You. Ant lift anything heavy, sitting down is not possible for the first couple of weeks.
My rectum is still there after my colon removal and ileostomy. Its weird but when i pass a little mucus sitting down going maybe twice a month, i feel like theres loads more to come , like before my op with UC, but nothing appears. Its the full feeling down there i get , even though theres nothing there, it has to be psychological.
Hi Paul. Thanks for watching and leaving a comment. Yes I believe some of it is psychological. I guess with having a ileostomy and still having the rectum there will play tricks on the mind.
Some people is reversing the surgery, was it really necessary to remove the rectum in your situation? My husband didn't have it removed, even though he didn't know until I told him because he is paraplegic due to spinal cord injury.,
Hi. Yes people have reversal's. It was necessary to remove mine. I tried every medication possible, I had 25 operations in five years. My rectum was so damaged by the disease I had no bowel control and this was never going to be recovered. My quality of life was awful.
Yes,yes I am relieved,I'm not going out of my mind!
I have still,after 4 years,all the 'feelings' you have described,
I mentioned to my surgeon but he didn't pass(oops!)any comment.
I have learned to live with this but have to admit when the feeling does
come I miss a good old sit down...thank you I do feel healing is easier for me after listening to you.
Hi. Thanks for watching. You are certainly not going out of your mind! Phantom pains are very real. I am so pleased my videos help you. Thank you for leaving a comment.
Even though you miss sitting down and I presume feeling that relief! Would you swap how you are now for how you were back then?
Why did you need a total proctectom
Ps. I am trying to avoid this.
Hello Chris, I am writing to you just to thank you for your channel. I am a guy in my 50s was finally diagnosed with UC in 2011 having many flare ups though out the time, in 2019 my wife and I decided to emigrate to Adelaide Australia with many years of planning. This huge change in our lives gave me my biggest flare ever and after many months of deteriation in Dec 2020 I admitted myself to hostital in a planned emergency where they removed most of my main bowel leaving the tail end in do to how ill I was, plus creating a new stoma.
Now I am 3 weeks post op from my follow up surgery to remove my anus and rectum (barbie butt) it has been a long and painful journey for not just me but also for my amazing wife whom without I don't think I would still be here. I just want to thank you for all your posts I have watched each and every one of them. When your in your hospital bed you think your the only one that why people like you are so important for people like me. It it so very painful at the moment but like you say only for the short term. Hopefully we can star to enjoy this beautiful country Thank you again Chris and God bless.
Hi. Thank you so much for your comment. As I say many times I only do this channel to help others. So it is so rewarding when I get comments like yours. I am always interested in hearing other people's journeys with these awful diseases. You have certainly had a tough time, and wow what a move aswell! I am very jealous! I have never been to Australia but for some very unknown reason I have this pull to want to live there for many years. Unfortunately my wife won't make that move and I respect that especially as we have never been. Like your wife my wife has been absolutely amazing, like you I do not believe I would still be here if it wasn't for her. Our partners put up with an awful lot also with our diseases. I have always said it's harder on them then us, whilst we lay in agony either at home or in hospital they have to deal with everything else, the running of the house, looking after children, keeping relatives and friends updates, going to work, and dealing with their own emotions as they try to remain strong for our benefit. It makes me happy you have an amazing wife at your side.
Yes having your rectum removed is very painful, apparently it is in the top 5 most painful operations to have! But as you say it's short term on the grand scheme of things. Again thank you so much for sharing your experience. I wish you all the best with your recovery and I am always happy to help with any other questions you have. Now go and enjoy the beautiful country of Australia with your lovely wife! Take care and best wishes.
Thank you for your reply Chris , yes we do love our new country but I'm still a supporter of my beloved Leicester City fc 😊 kind regards Dean
I get the same thing after my ILEOSTOMY - Feeling like you need to pass something. Well, in my case it's called MUCUS - they never told me about that though!!!!!!! I never realised that so many people out there are going through bad times - we don't know until we come on here,it's only people like us, that know and share our experiences etc. You can listen to all the EXPERTS, but they just keep telling you, that you can 'lead a normal life' - what a joke!
4weeks post op, I just get the need to break wind feeling, then the stoma speaks! My butt wound wasn’t packed, it was all sewn up but now I feel as if there is a cord of tissue down the middle of the join… I’m not brave enough to look yet.
Hi Elizabeth. Go on have a look be brave. 😄
Yes that passing wind feeling I think is probably similar to that feeling I have when it feels like something is coming out. Wishing you the best with the rest of the recovery.
Hi, Elizabeth, like you my bottom was sewn up after bowel cancer and I couldn’t see, and definitely did not want to see my new bottom. It felt horrendous. 18 months on it feels and looks a lot better ! I still get the urge to ‘fart’ from my bottom sometimes but when I remind myself there is nothing there to fart out of the feeling passes.
Hi
I had an ileostomy last year. I still have a rectum and I get these pains every so often . They can be quite painful. I actually sit on the loo and push down and it seems to help.
Thanks for posting
Regards
Jeff
Your rectum might still be producing mucus. Are you passing mucus?
Hi Jeffrey, yes I have heard of other people that still have their rectum have these pains. I think it's more common in people that still have the rectum in place. Thank you for watching and leaving a comment.
My sensation of needing a poo traditionally is actually a sign that I need a wee! I assume something to do with the bladder swelling and pushing on the lower part of my bowel, and the nerves in the area still being a bit confused. It's not a problem, just a bit weird.
Hi David. They are weird feelings. I do wee far more often than I did before having a stoma.
It doesn't apply to me... though I visited the surgeon about a reversal, hernia at the same time... sounds a bit daunting, 5 hour operation, so I.m leaving it for now.
Did get mucus early on, seems to have disappeared now. You're looking well again.. thanks.
Hi Andrew. Thanks for watching. What are your thoughts on having the reversal?
@@sydneystoma385 Fearful! The thought of another long incision, it's the long hernia, my health seems pretty good so far.. though I have to wear a belt permanently..it's a risky op. Thanks
Me too, could have a reversal. Hmmm...
And what can you do and not do, I live on my own.
Recovery is all about being patient and not rushing things. Just take your time to rest and heal. You. Ant lift anything heavy, sitting down is not possible for the first couple of weeks.
I’m going to have this procedure soon, how long does the pain last? Weeks , months?
The pain lasts for no more than a couple of months. But it decreases, it's not intense pain for the whole recovery period.
Thanks for your honesty
Have you ever had a hernia, because of the op?
Hey
Hi
My rectum is still there after my colon removal and ileostomy. Its weird but when i pass a little mucus sitting down going maybe twice a month, i feel like theres loads more to come , like before my op with UC, but nothing appears. Its the full feeling down there i get , even though theres nothing there, it has to be psychological.
Hi Paul. Thanks for watching and leaving a comment. Yes I believe some of it is psychological. I guess with having a ileostomy and still having the rectum there will play tricks on the mind.
how long did it take to heal im 6 weeks past surgery and the hole is still so big
In total it took about three months. After six weeks there should be a noticeable difference in the size.
Some people is reversing the surgery, was it really necessary to remove the rectum in your situation? My husband didn't have it removed, even though he didn't know until I told him because he is paraplegic due to spinal cord injury.,
Hi. Yes people have reversal's. It was necessary to remove mine. I tried every medication possible, I had 25 operations in five years. My rectum was so damaged by the disease I had no bowel control and this was never going to be recovered. My quality of life was awful.
@@sydneystoma385 May God keep you happy and healthy now.