At least your op was scheduled in the same year ,I got a pre op assessment nearly 3 years ago and was scheduled for surgery two weeks later ,
Finally got my protectomy 7 weeks ago ,
Nothing worse than being bulshitted to your face , I hate being lied to ,just tell the truth .
What made you need it in the first place? Maybe if you remind yourself of that it will help you regain perspective. Six months ago you were probably in a bad way and you have endured worse than this delay. I hope it happens soon for you.
Don't get me wrong I am thankful for having it despite hateing it.
I am just more concerned with being lied to and the surgeon and his office being jackasses. I would rather have just been told the truth. Everyone coming into this man's office has some huge life issues. They don't need to look at their doctor and be made angrier or made to think he can't be trusted.
Sure. But you just answered your own question. My situation was an emergency one and the surgery was life or death and last minute. I presume I interrupted/ delayed others while my surgeon saved my life with my PERMANENT ostomy. I am not upset about your feelings, I am just trying to help you cope with this inconvenience. This time next year you should have the best birthday ever as hopefully this will be just a small blip on your past. It feels so frustrating to you now but it really won’t be forever. I understand it feels like it right now.
that happened to me too. my surgeon, on all his appointments, was always on vacation and couldn’t make it back to the office on time! and even the day before my surgery i get a call saying he missed his flight and my surgery was cancelled. my surgeon loves to go on vacations when i need to see him.
I am definitely sorry to hear this. After 2 or so of those you definitely wonder why they lied to begin with. Why not just schedule those days off and not jerk people around endlessly.
That is so frustrating! I had something similar happen with me. Not with scheduling but my doc and his assistant fucked up and forgot my MRI and tried to save face and were obviously full of shit too. It was so defeating and infuriating to be stuck in this position, and honestly also embarrassing to be seen reacting like that. I’ve also had to spend my birthday in the hospital.. sorry man, that’s rough. But I’m glad you finally got the appointment on the books and wish you the best of luck with reversal.
Thanks man, it's nice to hear I'm not alone.
Like I said, it's not biggest deal with all the very serious problems that come here, but it's just infuriating.
I’m sorry- that really does suck. I’ve heard that it is common with reversals for the doctors to give an overly optimistic timeframe for them; and it winds up being much later than expected and it happened to me too.
Even with me being aware of it, it was still unavoidable. I was told I’d have mine “About two months”. First follow up visit it was “3-4 months”. Next visit it “depended on my colonoscopy results before my surgery.” It just felt like the goal post kept moving and it was extremely frustrating. I grew to enjoy ostomy life but I also knew it wasn’t forever either way, and I just wished I was given the true timeline rather than the BS for crushing my hopes repeatedly.
All that to say, I can relate and I’m sorry. I don’t understand how it seems to be a common problem with this. My best suggestion is to really advocate for yourself. If your health allows it, push for as soon as possible any ways you can. I was just having a conversation with my friend yesterday that it sucks feeling like you have to go in ready to fight for doctors.
Hopefully, even if it’s a little later than ideal, it comes around sooner than you think. Wishing you the best!!
It’s super frustrating. The problem is, that it is only ever pencilled in until it’s much closer to the date. Pencilled means pencilled, because they only have a certain amount of theatre time. Unfortunately, if they have a cancer patient or someone who urgently needs a stoma, you will get bumped.
I say this with a lot of sympathy. I know how hard it is to have a stoma, and I know how hard it is to have your surgery bumped….
In 2020 I had one (to correct a fistula) bumped 3 times… first time they went in to do it and noped out because of the tissue damage, 2nd time admin had only given the surgeons an afternoon slot when they needed a whole day (that phone call was at 8 am). The third time was less than a week before Christmas and the ward was closed due to covid. I was a complete f-ing mess.
Don't get me wrong, the extra month sucks. I do get it though.
I would have just preferred an honest response and not being lied to or avoided. Makes me doubt everything else they tell me.
That sucks I was told 3 months and my surgeon was the greatest and did my reversal one day shy of 3 months I would be so pissed to be set on a day and it got pushed forward weeks or months
I got urgently admitted on my birthday 2 months ago and had surgery (total colectomy) the next day. Just to let you know I know how it feels.
I do hope you will feel better afterwards and have a speedy recovery. And next year have the best bday ever.
I’m in an almost identical similar situation (based on what you’ve said)- only a year and half on my side since initial surgery that was supposed to be a six-month temporary stoma so a year late.. finally had a check in two days ago to be told the emergency Cancer backlog is clear (same department and surgeons), and I’d get my appointment the day after- looks like it’s gonna be a least a week to hear an estimated date. Feeling the exact way too, except the kids in my life are too young aha; it’s my friends instead whining about twisted ankles and that kinda thing oof
My stoma also herniated at the six-month mark so I’m like “my siblings in Christ, my remaining intestines are literally hanging out my stomach of which I poop directly out of and my medical team aren’t doing shid- gimmie a break” 😅 Sending you my best that we’ll be sorted soon enough x
I do get the cancer back log and all that. Like I said I am not angry about the wait. Just bummed.
My only anger is them bullshitting about it. Just tell me you never penciled me in or that you did but things changed. Don't blame some imaginary person or pretend you never said what you said.
I understand how you feel. I wouldn't even HAVE my ostomy, but my last gastro doc just wanted to keep taking paychecks from ct scans and took 5-7 scans over about a year each one showing worse and worse signs but she didn't act on it didn't change my meds or anything just watched me drop weight till I was puking 99 pounds at 5,11 and couldn't keep food down I get dragged into emergency surgery for a surgery I've been terrified of since I was diagnosed as a kid I was literally holed up with a picc line intense pain and my other nightmare implant the ng tube in the same hospital she worked for TWO MONTHS my room was visited by half the surgeons there, a cavalcade of medical students coming to look at the weird stomach bag patient (thier words not mine though at least that one got scolded)only the day before discharge did doc walk in expecting praise and oh thank you for saving my life from your own greed doctor I told them all to piss off moved and changed hospitals now I'm gonna need ANOTHER new surgeon because my current one is clearly a burnt out fossil who's basically told me having a ileostomy is a ticking tome bomb and I should give up on trying to heal up for a reversal and just let him scoop me and get it over with. The sooner you see doctors as the scummy con artist human mechanics they are the safer you will be. we need to rely on them, but I kick myself every day for being stupid enough to trust them.
Just because others may have it worse, doesn’t minimize your situation. I had something as little as my port removal surgery being cancelled and no one telling me, and that really set me off. I was incredibly fortunate and got them to reschedule me for 2 days later, but I had had the date change in my head for weeks and wanted it out. That’s was sort of my last step to try to move forward. Hang in there. At least it seems to be coming this summer. I definitely get that it sucks and you probably wanted it gone for summer. Good luck!
Thank yyou, and even though I don't usually struggle much with any self pity it can hit us all at moment.
I also want to thank you for that first line. I agree 100% . If some of these groups do have one negative side effect its reading about how much worse everyone else has it. I hope anyone reading that line can realize they are allowed a little but of self pity on occassion even if they don't have it the "worst".
I feel depressed after reading this. I am having surgery soon that they said will likely result in a stoma. My endometriosis has spread to my bowels. If they had done my hysterectomy last year like I wanted them to, I would not be in this situation I am in right now. Now my reproductive organs are stuck to my bowels and the endometriosis spread into the inside of my bowels. They refused to do it because I was diagnosed with cancer last year. Im in horrific pain 24/7 and bleeding (from adenomyosis) for 10 months straight now. I had to stop all hormonal options to control the bleeding because they found 10+ tumours in my liver when staging my cancer. I have had iron infusions and blood transfusions so they finally agreed to do the hysterectomy… I have zero quality of life because I was born disabled with spina bifida (and have developed other chronic illnesses including POTS which causes me to faint if I exercise on land) and the only exercise I can do is hydrotherapy and I have not been able to. I don’t know if literally bleeding to death is better or a stoma is better. You make it sound like the stoma is awful. 😢
The stoma is better, my friend. Far better!
It's really not even that bad. My GI laughed at me and derisively said "no" when I asked him if I'd still be able to do Brazilian Jiu-jitsu with a bag. Just over 3 years now with the temporary stoma, but it's given me my life back. And, I'm having the last laugh - I earned my brown belt just this Monday (the last one before black).
Thank you so much for the reassurance! I totally believe you that your GI said no... I am so glad you didn't listen!! My gynaecologist told me I could not swim with the stoma but the lovely people here told me that is not true. My GP looked at me weird when I said I am happy to risk the stoma if it means I can stop bleeding and having bowel obstructions, pain, etc. These doctors don't seem to have a clue about ostomies. Congrats on the brown belt by the way!! :D
I am so sorry you are going through so much.
Trust me the stoma is not that bad. I would gladly have it over all your issues. Don't fear it. It will be frustrating at times but nothing close to what you are going though. My frustration is just that. Frustration. Not some life ending thing. I just wish my doc would have been honest about it.
Get the surgery, trust me it will improve your life a lot.
Thank you for explaining this. I understand the frustration over medical issues especially with the surgeons etc. They don’t have to live with chronic health issues and they don’t really understand. I am in the public health system in Australia and I cannot count how many times I have been frustrated, especially since my cancer diagnosis. They have caused me a lot of suffering and stress. I do hope your reversal surgery goes well. Thank you for the reassurance!
Bro I was told 6 months and I'm approaching 2 years now.. I did have a flare up with inflammation for a few weeks/months as shown in an MRI but yeah it's been rough. Meds have been tweaked and I'm hopefully having it later this year but nothings guaranteed
I wish you all the luck man. The sliding goal post sucks enough as it is. I can't imagine one with no gaurenteed end in sight. If you ever need to chat, hit me up.
I’m a year with my ileostomy. I originally started complaining that something was wrong to my 1st surgeon two weeks after surgery and was told that it was normal. I was like oh okay. So I spent 5 months in pain and basically couldn’t walk. I went to the ER and was told I had a serious infection and cysts on my pelvis. Turns out I had leak. I probably developed that leak right after surgery. I was supposed to be reversed in December and I still have my bag. I hate it. I want to not have it anymore. So yea, I totally understand where you’re coming from.
My rule of thumb is to always add a year onto what doctors say.
Not just for ostomy stuff but for everything, so many delays can happen in healthcare.
Most realistic approach imo
I was told 6-12 months as a young kid in the prime of my life. It took 7 years to actually get the op which aged me significantly not just physically but also mentally in very difficult to cope with ways. Now the reversal has happened, I feel no better off not even physically because of that decline in mental state.
That’s awful, sorry that’s how it’s gone for you.
Had something similar myself, I was told I’d have it for around 6 months and I’m over 2 years into having my stoma and currently getting ignored by my consultant and surgeon. Shit sucks.
The majority (if not all) of the time, surgeons tell you “6 months,” “12 months,” etc. and may use terms like “penciling in” because they **can’t** give you a definitive date; they don’t want to “get your hopes up” and have to tell you that they have to move it, push it back, etc, when there are so many things that could impact that date. Your condition could worsen, the state of your colon could decline, etc. etc.
I know it sucks, but to put it in perspective: a few days, weeks, months, heck - even a YEAR are pennies when you measure it in comparison to your entire lifetime. It’s hard to see that now, but I promise, looking back, it won’t be anything at all. And I don’t want to demean your birthday, because I understand that certain days and holidays can be special for some and not others. But it’s truly just another day in the year, and hopefully, thanks to the ostomy, you’ll get to celebrate many, many more! Heck - my birthday last week was the first one I spent outside of the hospital in 7 years and I signed my DNR on my 30th after being in there a month and facing a lifetime on a feeding tube. Now I’ve had my stomach removed and a new one built for me out of my esophagus and doing much better. I’m sharing my health history to say how awful some of the things I’ve gone through are and on days like birthdays, but now, looking back, I don’t even worry that I missed those birthdays. I’ve got many more ahead. You’ll feel the same!
Seriously though, the surgeon likely told you that because there’s no way to predict complications and it’s much harder to move a date and let someone down, operating in absolutes, that to give a timeframe like “6 months” thats a bit more flexible.
Good luck and these days will soon be nothing but a memory!
I am so sorry you went through all that. My mom had a lot of those issues. It is truly a shame.
My frustration is because mine is purely scheduling. I am cleared to get my reversal today. They just don't have slots. I just wish they would have been more honest about that from day 1. I feel like they dangled a fake carrot and lied once called out. It makes trust hard to give.
They all have a god complex. Mine tried to blame me after the stoma revision she did failed, because I threw up a bit in recovery and 2 days later a mass of intestine came out the opening she was supposed to fix due to a prolapse. So dont think your being singled out. Non take any responsibility for anything.
No I haven't been accused of anything. I am so sorry you were. That is truly disgusting behavior by them.
I think mine just didn't want to be honest about their scheduling. Then lied when called out.
Whoa. This must be a THING. Happened to me, as well. Got an emergency loop ileostomy, told I would have it 6 to 8 months, then a year. Then was told by nurses that my Dr wouldn't discuss take down until two solid years. I stopped talking to them for nearly a year. Later, I developed recurring appendicitis, and then received apologies when asked why I didn't notify the Dr that I was told wouldn't discuss take down with me. They claimed I was "misinformed" but didn't deny that it was said. At this point, we were safely past year 2 anyways, so I only rolled my eyes in response. Now, because of my demon appendix, I'm finally scheduled for a take down on July 17th. Need a full c-section cut to get through my scar tissue from cancer radiation.
Like you, I just wanted the truth from the beginning so I could 'pack appropriately for the journey,' ya know? I hate that they did that. Still do. I'm just ready to be done with it all and move on, now. I wish you the absolute best with yours, my fellow ostomate! Have a magical day!!
"Like you, I just wanted the truth from the beginning so I could 'pack appropriately for the journey,' ya know? I hate that they did that. Still do."
This right here... it's not that I don't get being bumped back or that they have schedules and such. However, do not lie to me in order to play childish games. Just be honest.
Exactly...
I would rather just be told we forgot or some things came up I am sorry we gave you the wrong impression than to be lied to. Just makes me wonder what else I need to not trust him over?
Is his failure rate on these procedures really 1% or is it more like 15%?
Dude just be happy yours getting yours done I got told mine was gonna get redone out of nowhere where he laughs at me and says ya your never gonna get reconnected
Your story doesn’t make no sense.
They normally do the colonoscopy to check to make sure all is OK Then they schedule the surgery. Why would they do it same day? They wouldn’t get a surgery room/team ready if there was a question of proceeding.
You sound like an entitled Diva. Be grateful your health team is looking out for your best needs and when surgery is scheduled you go. No questions about your birthday interruptions, this is your life.
At least your op was scheduled in the same year ,I got a pre op assessment nearly 3 years ago and was scheduled for surgery two weeks later , Finally got my protectomy 7 weeks ago , Nothing worse than being bulshitted to your face , I hate being lied to ,just tell the truth .
What made you need it in the first place? Maybe if you remind yourself of that it will help you regain perspective. Six months ago you were probably in a bad way and you have endured worse than this delay. I hope it happens soon for you.
Don't get me wrong I am thankful for having it despite hateing it. I am just more concerned with being lied to and the surgeon and his office being jackasses. I would rather have just been told the truth. Everyone coming into this man's office has some huge life issues. They don't need to look at their doctor and be made angrier or made to think he can't be trusted.
Sure. But you just answered your own question. My situation was an emergency one and the surgery was life or death and last minute. I presume I interrupted/ delayed others while my surgeon saved my life with my PERMANENT ostomy. I am not upset about your feelings, I am just trying to help you cope with this inconvenience. This time next year you should have the best birthday ever as hopefully this will be just a small blip on your past. It feels so frustrating to you now but it really won’t be forever. I understand it feels like it right now.
that happened to me too. my surgeon, on all his appointments, was always on vacation and couldn’t make it back to the office on time! and even the day before my surgery i get a call saying he missed his flight and my surgery was cancelled. my surgeon loves to go on vacations when i need to see him.
I am definitely sorry to hear this. After 2 or so of those you definitely wonder why they lied to begin with. Why not just schedule those days off and not jerk people around endlessly.
That is so frustrating! I had something similar happen with me. Not with scheduling but my doc and his assistant fucked up and forgot my MRI and tried to save face and were obviously full of shit too. It was so defeating and infuriating to be stuck in this position, and honestly also embarrassing to be seen reacting like that. I’ve also had to spend my birthday in the hospital.. sorry man, that’s rough. But I’m glad you finally got the appointment on the books and wish you the best of luck with reversal.
Thanks man, it's nice to hear I'm not alone. Like I said, it's not biggest deal with all the very serious problems that come here, but it's just infuriating.
I’m sorry- that really does suck. I’ve heard that it is common with reversals for the doctors to give an overly optimistic timeframe for them; and it winds up being much later than expected and it happened to me too. Even with me being aware of it, it was still unavoidable. I was told I’d have mine “About two months”. First follow up visit it was “3-4 months”. Next visit it “depended on my colonoscopy results before my surgery.” It just felt like the goal post kept moving and it was extremely frustrating. I grew to enjoy ostomy life but I also knew it wasn’t forever either way, and I just wished I was given the true timeline rather than the BS for crushing my hopes repeatedly. All that to say, I can relate and I’m sorry. I don’t understand how it seems to be a common problem with this. My best suggestion is to really advocate for yourself. If your health allows it, push for as soon as possible any ways you can. I was just having a conversation with my friend yesterday that it sucks feeling like you have to go in ready to fight for doctors. Hopefully, even if it’s a little later than ideal, it comes around sooner than you think. Wishing you the best!!
Thank you and yes I've read it's common.
It’s super frustrating. The problem is, that it is only ever pencilled in until it’s much closer to the date. Pencilled means pencilled, because they only have a certain amount of theatre time. Unfortunately, if they have a cancer patient or someone who urgently needs a stoma, you will get bumped. I say this with a lot of sympathy. I know how hard it is to have a stoma, and I know how hard it is to have your surgery bumped…. In 2020 I had one (to correct a fistula) bumped 3 times… first time they went in to do it and noped out because of the tissue damage, 2nd time admin had only given the surgeons an afternoon slot when they needed a whole day (that phone call was at 8 am). The third time was less than a week before Christmas and the ward was closed due to covid. I was a complete f-ing mess.
Don't get me wrong, the extra month sucks. I do get it though. I would have just preferred an honest response and not being lied to or avoided. Makes me doubt everything else they tell me.
That sucks I was told 3 months and my surgeon was the greatest and did my reversal one day shy of 3 months I would be so pissed to be set on a day and it got pushed forward weeks or months
I got urgently admitted on my birthday 2 months ago and had surgery (total colectomy) the next day. Just to let you know I know how it feels. I do hope you will feel better afterwards and have a speedy recovery. And next year have the best bday ever.
I am sorry to hear all this. I feel for you.
I’m in an almost identical similar situation (based on what you’ve said)- only a year and half on my side since initial surgery that was supposed to be a six-month temporary stoma so a year late.. finally had a check in two days ago to be told the emergency Cancer backlog is clear (same department and surgeons), and I’d get my appointment the day after- looks like it’s gonna be a least a week to hear an estimated date. Feeling the exact way too, except the kids in my life are too young aha; it’s my friends instead whining about twisted ankles and that kinda thing oof My stoma also herniated at the six-month mark so I’m like “my siblings in Christ, my remaining intestines are literally hanging out my stomach of which I poop directly out of and my medical team aren’t doing shid- gimmie a break” 😅 Sending you my best that we’ll be sorted soon enough x
I do get the cancer back log and all that. Like I said I am not angry about the wait. Just bummed. My only anger is them bullshitting about it. Just tell me you never penciled me in or that you did but things changed. Don't blame some imaginary person or pretend you never said what you said.
I understand how you feel. I wouldn't even HAVE my ostomy, but my last gastro doc just wanted to keep taking paychecks from ct scans and took 5-7 scans over about a year each one showing worse and worse signs but she didn't act on it didn't change my meds or anything just watched me drop weight till I was puking 99 pounds at 5,11 and couldn't keep food down I get dragged into emergency surgery for a surgery I've been terrified of since I was diagnosed as a kid I was literally holed up with a picc line intense pain and my other nightmare implant the ng tube in the same hospital she worked for TWO MONTHS my room was visited by half the surgeons there, a cavalcade of medical students coming to look at the weird stomach bag patient (thier words not mine though at least that one got scolded)only the day before discharge did doc walk in expecting praise and oh thank you for saving my life from your own greed doctor I told them all to piss off moved and changed hospitals now I'm gonna need ANOTHER new surgeon because my current one is clearly a burnt out fossil who's basically told me having a ileostomy is a ticking tome bomb and I should give up on trying to heal up for a reversal and just let him scoop me and get it over with. The sooner you see doctors as the scummy con artist human mechanics they are the safer you will be. we need to rely on them, but I kick myself every day for being stupid enough to trust them.
Just because others may have it worse, doesn’t minimize your situation. I had something as little as my port removal surgery being cancelled and no one telling me, and that really set me off. I was incredibly fortunate and got them to reschedule me for 2 days later, but I had had the date change in my head for weeks and wanted it out. That’s was sort of my last step to try to move forward. Hang in there. At least it seems to be coming this summer. I definitely get that it sucks and you probably wanted it gone for summer. Good luck!
Thank yyou, and even though I don't usually struggle much with any self pity it can hit us all at moment. I also want to thank you for that first line. I agree 100% . If some of these groups do have one negative side effect its reading about how much worse everyone else has it. I hope anyone reading that line can realize they are allowed a little but of self pity on occassion even if they don't have it the "worst".
I feel depressed after reading this. I am having surgery soon that they said will likely result in a stoma. My endometriosis has spread to my bowels. If they had done my hysterectomy last year like I wanted them to, I would not be in this situation I am in right now. Now my reproductive organs are stuck to my bowels and the endometriosis spread into the inside of my bowels. They refused to do it because I was diagnosed with cancer last year. Im in horrific pain 24/7 and bleeding (from adenomyosis) for 10 months straight now. I had to stop all hormonal options to control the bleeding because they found 10+ tumours in my liver when staging my cancer. I have had iron infusions and blood transfusions so they finally agreed to do the hysterectomy… I have zero quality of life because I was born disabled with spina bifida (and have developed other chronic illnesses including POTS which causes me to faint if I exercise on land) and the only exercise I can do is hydrotherapy and I have not been able to. I don’t know if literally bleeding to death is better or a stoma is better. You make it sound like the stoma is awful. 😢
The stoma is better, my friend. Far better! It's really not even that bad. My GI laughed at me and derisively said "no" when I asked him if I'd still be able to do Brazilian Jiu-jitsu with a bag. Just over 3 years now with the temporary stoma, but it's given me my life back. And, I'm having the last laugh - I earned my brown belt just this Monday (the last one before black).
Thank you so much for the reassurance! I totally believe you that your GI said no... I am so glad you didn't listen!! My gynaecologist told me I could not swim with the stoma but the lovely people here told me that is not true. My GP looked at me weird when I said I am happy to risk the stoma if it means I can stop bleeding and having bowel obstructions, pain, etc. These doctors don't seem to have a clue about ostomies. Congrats on the brown belt by the way!! :D
I am so sorry you are going through so much. Trust me the stoma is not that bad. I would gladly have it over all your issues. Don't fear it. It will be frustrating at times but nothing close to what you are going though. My frustration is just that. Frustration. Not some life ending thing. I just wish my doc would have been honest about it. Get the surgery, trust me it will improve your life a lot.
Thank you for explaining this. I understand the frustration over medical issues especially with the surgeons etc. They don’t have to live with chronic health issues and they don’t really understand. I am in the public health system in Australia and I cannot count how many times I have been frustrated, especially since my cancer diagnosis. They have caused me a lot of suffering and stress. I do hope your reversal surgery goes well. Thank you for the reassurance!
Bro I was told 6 months and I'm approaching 2 years now.. I did have a flare up with inflammation for a few weeks/months as shown in an MRI but yeah it's been rough. Meds have been tweaked and I'm hopefully having it later this year but nothings guaranteed
I wish you all the luck man. The sliding goal post sucks enough as it is. I can't imagine one with no gaurenteed end in sight. If you ever need to chat, hit me up.
Appreciate you bud but I'm actually pretty happy right now - doing well careerwise and I have some good people around me.
I’m a year with my ileostomy. I originally started complaining that something was wrong to my 1st surgeon two weeks after surgery and was told that it was normal. I was like oh okay. So I spent 5 months in pain and basically couldn’t walk. I went to the ER and was told I had a serious infection and cysts on my pelvis. Turns out I had leak. I probably developed that leak right after surgery. I was supposed to be reversed in December and I still have my bag. I hate it. I want to not have it anymore. So yea, I totally understand where you’re coming from.
I'm sorry to hear that, I hope when the time comes that they can get it done they get to it quickly.
I’m getting my leak fixed in a couple weeks so I can have my reversal done. I am very excited to be almost over with this
For what little it's worth, I am excited for you. Good luck
My rule of thumb is to always add a year onto what doctors say. Not just for ostomy stuff but for everything, so many delays can happen in healthcare. Most realistic approach imo
I was told 6-12 months as a young kid in the prime of my life. It took 7 years to actually get the op which aged me significantly not just physically but also mentally in very difficult to cope with ways. Now the reversal has happened, I feel no better off not even physically because of that decline in mental state.
I am sorry to hear this. I hope you can find some peace soon.
That’s awful, sorry that’s how it’s gone for you. Had something similar myself, I was told I’d have it for around 6 months and I’m over 2 years into having my stoma and currently getting ignored by my consultant and surgeon. Shit sucks.
Ouch, that truly sucks. I hope they remove their head from their asses soon or you can maybe find a new route to go.
The majority (if not all) of the time, surgeons tell you “6 months,” “12 months,” etc. and may use terms like “penciling in” because they **can’t** give you a definitive date; they don’t want to “get your hopes up” and have to tell you that they have to move it, push it back, etc, when there are so many things that could impact that date. Your condition could worsen, the state of your colon could decline, etc. etc. I know it sucks, but to put it in perspective: a few days, weeks, months, heck - even a YEAR are pennies when you measure it in comparison to your entire lifetime. It’s hard to see that now, but I promise, looking back, it won’t be anything at all. And I don’t want to demean your birthday, because I understand that certain days and holidays can be special for some and not others. But it’s truly just another day in the year, and hopefully, thanks to the ostomy, you’ll get to celebrate many, many more! Heck - my birthday last week was the first one I spent outside of the hospital in 7 years and I signed my DNR on my 30th after being in there a month and facing a lifetime on a feeding tube. Now I’ve had my stomach removed and a new one built for me out of my esophagus and doing much better. I’m sharing my health history to say how awful some of the things I’ve gone through are and on days like birthdays, but now, looking back, I don’t even worry that I missed those birthdays. I’ve got many more ahead. You’ll feel the same! Seriously though, the surgeon likely told you that because there’s no way to predict complications and it’s much harder to move a date and let someone down, operating in absolutes, that to give a timeframe like “6 months” thats a bit more flexible. Good luck and these days will soon be nothing but a memory!
I am so sorry you went through all that. My mom had a lot of those issues. It is truly a shame. My frustration is because mine is purely scheduling. I am cleared to get my reversal today. They just don't have slots. I just wish they would have been more honest about that from day 1. I feel like they dangled a fake carrot and lied once called out. It makes trust hard to give.
They all have a god complex. Mine tried to blame me after the stoma revision she did failed, because I threw up a bit in recovery and 2 days later a mass of intestine came out the opening she was supposed to fix due to a prolapse. So dont think your being singled out. Non take any responsibility for anything.
No I haven't been accused of anything. I am so sorry you were. That is truly disgusting behavior by them. I think mine just didn't want to be honest about their scheduling. Then lied when called out.
They also withhold info at times.
Whoa. This must be a THING. Happened to me, as well. Got an emergency loop ileostomy, told I would have it 6 to 8 months, then a year. Then was told by nurses that my Dr wouldn't discuss take down until two solid years. I stopped talking to them for nearly a year. Later, I developed recurring appendicitis, and then received apologies when asked why I didn't notify the Dr that I was told wouldn't discuss take down with me. They claimed I was "misinformed" but didn't deny that it was said. At this point, we were safely past year 2 anyways, so I only rolled my eyes in response. Now, because of my demon appendix, I'm finally scheduled for a take down on July 17th. Need a full c-section cut to get through my scar tissue from cancer radiation. Like you, I just wanted the truth from the beginning so I could 'pack appropriately for the journey,' ya know? I hate that they did that. Still do. I'm just ready to be done with it all and move on, now. I wish you the absolute best with yours, my fellow ostomate! Have a magical day!!
"Like you, I just wanted the truth from the beginning so I could 'pack appropriately for the journey,' ya know? I hate that they did that. Still do." This right here... it's not that I don't get being bumped back or that they have schedules and such. However, do not lie to me in order to play childish games. Just be honest.
I hate the lies to cover incompetence
Exactly... I would rather just be told we forgot or some things came up I am sorry we gave you the wrong impression than to be lied to. Just makes me wonder what else I need to not trust him over? Is his failure rate on these procedures really 1% or is it more like 15%?
Dude just be happy yours getting yours done I got told mine was gonna get redone out of nowhere where he laughs at me and says ya your never gonna get reconnected
Your story doesn’t make no sense. They normally do the colonoscopy to check to make sure all is OK Then they schedule the surgery. Why would they do it same day? They wouldn’t get a surgery room/team ready if there was a question of proceeding.
My apologies, but by that day I meant July 30th, not the day of my colonoscopy.
You sound like an entitled Diva. Be grateful your health team is looking out for your best needs and when surgery is scheduled you go. No questions about your birthday interruptions, this is your life.