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Reversal advice and reassurance

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Sat Apr 10, 2021 7:01 am

Hi all, I am new to this site and I'm looking for advice and support. I was involved in a car crash 6 weeks ago and was rushed to hospital for surgery and woke up with a colostomy bag. This has shocked and scared the hell out of me although the surgeon and doctors have said it's 100% reversible but I have spent the last 6 weeks thinking about 'what if it's not reversible and I have this for the rest of my life'. I am not sure what I am expecting from putting this on here but I'm scared and feel my life is in tatters I am just looking for some positive news and feedback from anyone that I cling to right now. 

Thanks in advance. 

Sat Apr 10, 2021 7:58 am

Hi KROS86,

  You my man, are one lucky fellow!! And that's because one, you survived the accident, and two, because your ostomy is reversible!  If I were you I wouldn't focus on the worst case scenario..........I'd focus on the best case scenario.  And that's what you doctors have told you in that it's 100% reversible.  100% is a lot......it can't get any better than that........so focus on getting well enough to have it reversed and don't look back.  Now had they said 80% or 90%........I'd be worried a bit, but they wouldn't have been so certain if they weren't sure about your condition.  They normally err on the other side when they tell you about such things......so you're in good shape.  

  But to calm your fears anyway...........a colostomy, in my humble opinion, is the best type of ostomy to have.  The range runs from having the least bowel (ie, me) to a colostomy, where you have the most bowel intact.  Your quality of life, which is what you are concerned about, is directly related to how much bowel you have left.  And that's because how much bowel you have is directly proportional to how normal your life will be with your ostomy.  With a colostomy they are literally just moving your asshole to your abdomen.  Sounds bad, but in the grand scheme of things, a very liveable situation.  That's not to say there aren't issues that folks have to deal with, and I don't mean to trivialize a colostomy in any way, but things could be way way worse.  And there's different degrees of colostomy....meaning if any part of your colon is rerouted to your abdomen and not the full colon.....then things start to get more complicated.  But bottom line.........the more functioning bowel you have intact.......the better your quality of life will be.  Others will chime in here to give you their opinion, and I can see where someone with a colostomy might think things are pretty bad......but unless they've walked in the shoes of someone with less bowel.......I'd say they're being a little naive.  Again, just my opinion.  Think of it like Gangrene.  If it's just on the tip of your toe and they have to amputate....losing the tip of your toe ain't so bad.  Let it progress a bit and have to lose a foot.....that'll suck, but it could be much worse.  Keep going and you have to lose your lower leg.....starting to suck big time..........your whole leg........you're life is changed in a big way.  An ostomy is the same way.  

 The good news is  no matter what type of ostomy you have..........you can adapt and keep soldiering on with life.  It won't kill you.  And as you get older that's what you focus on.....not the stuff that slows you down.......the stuff that kills you!  So rest assured no matter what happens with your ostomy you'll be fine.  You'll make some new friends (on here and the other ostomy sites), and other than building your character a bit and helping you appreciate what's really important in life......you'll still be you and be able to live a long healthy life just fine.  

 Many of us would give our left testical (maybe both) to be in your shoes...........so relax, do what your docs say......and get that reversal and forget all about ostomies and places like this.  I'm betting you've already been humbled a bit by the experience, so it's already made you a better person!  Best of luck to you and hopefully we won't be talking again!!!

 

;0)

bob

  

   

   

Sat Apr 10, 2021 7:59 am

Wow, I am sure that was a big shock! If your doctor said it was reversible, I am sure it is! You must have had some Intermal injuries that required surgery and now the Ostomy is there to give it time to heal. Right? Ostomies are placed a lot for that reason. And.. if that turns out you have it a little longer than you would hope, there is a full life in store for you either way. Most of us have Ostomies that are permanent and live a normal life. Most of us have them for life saving reasons and grateful the option was available. 
Yours may have been life saving as well! It is not fun and if the opportunity for reversal was an option, I would jump On it. The first few weeks of dealing with it is overwhelming even knowing it was coming much less it being a total surprise! It is a head game of acceptance. Find the right products that work for you and wait it out! Embrace the Ostomy as part of your healing process. We are all glad to answer any questions you may have. Many have been answered In previous conversations on the forum and blogs. I am sure you have been exploring those but please ask any questions you do not find the answer here. 
Best of luck to you!

Puppyluv

 

Sat Apr 10, 2021 8:32 am
w30bob wrote:

Hi KROS86,

  You my man, are one lucky fellow!! And that's because one, you survived the accident, and two, because your ostomy is reversible!  If I were you I wouldn't focus on the worst case scenario..........I'd focus on the best case scenario.  And that's what you doctors have told you in that it's 100% reversible.  100% is a lot......it can't get any better than that........so focus on getting well enough to have it reversed and don't look back.  Now had they said 80% or 90%........I'd be worried a bit, but they wouldn't have been so certain if they weren't sure about your condition.  They normally err on the other side when they tell you about such things......so you're in good shape.  

  But to calm your fears anyway...........a colostomy, in my humble opinion, is the best type of ostomy to have.  The range runs from having the least bowel (ie, me) to a colostomy, where you have the most bowel intact.  Your quality of life, which is what you are concerned about, is directly related to how much bowel you have left.  And that's because how much bowel you have is directly proportional to how normal your life will be with your ostomy.  With a colostomy they are literally just moving your asshole to your abdomen.  Sounds bad, but in the grand scheme of things, a very liveable situation.  That's not to say there aren't issues that folks have to deal with, and I don't mean to trivialize a colostomy in any way, but things could be way way worse.  And there's different degrees of colostomy....meaning if any part of your colon is rerouted to your abdomen and not the full colon.....then things start to get more complicated.  But bottom line.........the more functioning bowel you have intact.......the better your quality of life will be.  Others will chime in here to give you their opinion, and I can see where someone with a colostomy might think things are pretty bad......but unless they've walked in the shoes of someone with less bowel.......I'd say they're being a little naive.  Again, just my opinion.  Think of it like Gangrene.  If it's just on the tip of your toe and they have to amputate....losing the tip of your toe ain't so bad.  Let it progress a bit and have to lose a foot.....that'll suck, but it could be much worse.  Keep going and you have to lose your lower leg.....starting to suck big time..........your whole leg........you're life is changed in a big way.  An ostomy is the same way.  

 The good news is  no matter what type of ostomy you have..........you can adapt and keep soldiering on with life.  It won't kill you.  And as you get older that's what you focus on.....not the stuff that slows you down.......the stuff that kills you!  So rest assured no matter what happens with your ostomy you'll be fine.  You'll make some new friends (on here and the other ostomy sites), and other than building your character a bit and helping you appreciate what's really important in life......you'll still be you and be able to live a long healthy life just fine.  

 Many of us would give our left testical (maybe both) to be in your shoes...........so relax, do what your docs say......and get that reversal and forget all about ostomies and places like this.  I'm betting you've already been humbled a bit by the experience, so it's already made you a better person!  Best of luck to you and hopefully we won't be talking again!!!

 

;0)

bob

 

Well said Bob!!!! 🙏

  

   

   



Sat Apr 10, 2021 8:32 am

Hi 

I too have just been given the shock of having a stoma, I have also been told that there may be a small chance of getting it reversed. I have been looking up on different web pages of the success rate which seems to be pretty good. Hope this helps a little. X just to add my story goes something like this, been having stomach pain for a few days but put it down to constipation. 6th December at 9pm pain was unbearable got ambulance and that is the last I remember. Apparently my large bowel had to be removed and part of my rectum because it had become necrotic and died. Was in intensive care for 3weeks after developing sepsis and 2dvt . 

 

 

 



Last edited by Caz67 on Sat Apr 10, 2021 8:44 am; edited 1 time in total
Sat Apr 10, 2021 8:36 am

Hi K like others have said you are lucky to have the reversal option, there are members on here that have gone thru sickness and got ostomys that are reversable but decided not to as the ostomy made their life better, as for me i have an ilieostomy for the last 35yrs. and i,m glad i do as it gave me my life back instead of being sick with crohns disease and often in the hospital. so continue to recover get some walking in if you can and ask any questions here as someone will come along and have an answer for you.

Sat Apr 10, 2021 8:52 am

KROS86,

Two of my family members had colostomies that were reversed with no issues whatsoever. Rest assured it is very common to reverse. I have advanced cancer and have a colostomy and I would take the colostomy any day over having to live the rest of my life on chemo with cancer. I'm not trying to minimize any of your concerns at all but have learned, as many others here have, that you've got to count your blessings. There is always someone way worse off. We are all lucky in our own way. Hang in there and as Bob said- you'll become a better person after going through this. Best of luck to you! You'll do great!

Sat Apr 10, 2021 9:24 am

Hi all, thank you all soo much for your prompt responses to my post it means soo much to me and it has made me quite emotional.... after reading alll your replies I wonder if my initial post was submitted in haste not thinking of the people who don't have the option of a reversal & I'm very sorry if it offended or upset anyone was not my intention, this is all very new to me. 

I will take all of your comments on board and process in due course. Bob you are absolutely right I need to look for the positives and coming on here has definitely put things into perspective. I'm from the UK and NHS waiting lists for this type of surgery could be upto 12-18 months which is not something I am relishing and going private will be considered (finances permitting). 

im going to spend some time taking stock and getting myself better and reversal ready (I know it's only been 6 weeks since surgery and patience is very much required) 

 

I have spent the last 6 weeks in absolute turmoil and things swirling around in my head and I think coming here and sharing was the best post op therapy I could have wished for. This community is great and thank you to you all, I really appreciate it. 

Sat Apr 10, 2021 9:31 am
KROS86 wrote:

Hi all, thank you all soo much for your prompt responses to my post it means soo much to me and it has made me quite emotional.... after reading alll your replies I wonder if my initial post was submitted in haste not thinking of the people who don't have the option of a reversal & I'm very sorry if it offended or upset anyone was not my intention, this is all very new to me. 

I will take all of your comments on board and process in due course. Bob you are absolutely right I need to look for the positives and coming on here has definitely put things into perspective. I'm from the UK and NHS waiting lists for this type of surgery could be upto 12-18 months which is not something I am relishing and going private will be considered (finances permitting). 

im going to spend some time taking stock and getting myself better and reversal ready (I know it's only been 6 weeks since surgery and patience is very much required) 

 

I have spent the last 6 weeks in absolute turmoil and things swirling around in my head and I think coming here and sharing was the best post op therapy I could have wished for. This community is great and thank you to you all, I really appreciate it. 


There is never offense taken here when you are voicing what is in your heart! We have all been right where you are at one time or another. Like I said, it is all a head game of acceptance and if it is a year, you have a lot to look forward to and it will pass so quickly. 
pup

Sat Apr 10, 2021 9:40 am
Puppyluv56 wrote:


There is never offense taken here when you are voicing what is in your heart! We have all been right where you are at one time or another. Like I said, it is all a head game of acceptance and if it is a year, you have a lot to look forward to and it will pass so quickly. 
pup


This is soo lovely, thank you.....Trying to talk to friends or my girlfriend or work colleagues about this stuff is near impossible all I get back is 'you will be fine in no time' or 'just slow down and be patient' without having the experience to give constructive advice on how to really deal with everything especially my emotions which are all over the place. Thank you for taking the time to help me. 

Sat Apr 10, 2021 10:31 am

I hope I didn't make you feel bad- that was not my intention. We are all here to support you and listen to you vent. It's all about perspective and attitude. It's so new for you but honestly it will make you strong. You are a warrior for surviving! You can do this! 

Sat Apr 10, 2021 10:50 am
Earth Angel wrote:

I hope I didn't make you feel bad- that was not my intention. We are all here to support you and listen to you vent. It's all about perspective and attitude. It's so new for you but honestly it will make you strong. You are a warrior for surviving! You can do this! 


Hey Earth Angel, thank you for your kind words. Sometimes I need to think before I speak or type in this instance....I have been scrolling through lots of posts on here looking for hope and inspiration and I have found it I think. My girlfriend keeps telling me I overthink everything and everything is worst case scenario in my head when in reality I'm very fortunate and just being on here for a few hours has made me realise that. It was good to hear you had two family members that had successful Colostomy reversals! Thank you again miss ☺️

Sat Apr 10, 2021 12:21 pm

Hi KROS86 ,Welcome aboard the site where you can get a lot of information. Glad you survided the wreck and that your colostomy is reversible. Like some of the others have said we all have felt doom and gloom at some point. Feel free to post any problems you may have along the way. Things do get better as you go along. Best wishes ans stay safe.

Sat Apr 10, 2021 12:25 pm

GOOD FIT BAILLY BAg   with good stick with paesta like tooth pasts out tob circle  round preess hold 2-5 min  baillly bar with 2-3 eyes for belt holds or help  bag extabchion outer tape prolongs belt life there 2 inch that ravells some one eles has a 4 inch wide . may not ravll or less likely to go so  .[belt hook may dig in skin oneway may need to reverse it]   hose tub night  me big fat the tub can.get beteewnbailly an thihycut off flow to night bag,  the other big thing is bag tub twist.  go to home depont tools theres 4 inch wide - 18 inch long center ties 1- cantainer take 12-18 twist around  low end bag down on tub shoud nut twist make sure all is strate line like.there color  note or bold on end round back tool most times . u shoud be able to clean it usea gine. twist tie./may soned nuty to u shoud help bags drain stop twist trepet uses ./  people that sweat need outer stomu tape,  if u do get a bag leek try to get area most be dry  uese pink tape or other save bag  day two at nighthave bag stsrt leeking  get big towel put along area over night./theres pads 30/30 larger put under u nights out back on going throw sheets . 

Sat Apr 10, 2021 1:51 pm

Hi all thanks for all your support as this is my only thread and the people it has attracted definitely know what they are talking about 😉 I would love your opinion on this.......I have a big bulge under my stoma, when I walk it feels like I have a stone or something in my tummy it's a horrible feeling I think I have parastomal hernia but I can be a hypochondriac haha it sticks out a lot when I stand but not when I am laying down, I am 6 weeks since surgery and am still very swollen I had a hartmans procedure as well as hitting a tree head on @ 40mph so I'm hoping it's a combination of the stoma procedure and the trauma from the crash, I'm seeing the stoma nurse Tuesday to see what the deal is but I would appreciate any advice on managing a para hernia up until reversal surgery as an additional operation sandwiched between the stoma procedure and the reversal is not something I'm interested in neither will my surgeon and neither will my boss! So anyone who wants to help out a 35 year old finance worker keep his job and his sanity please feel free to leave a comment...... 

Sat Apr 10, 2021 3:28 pm

your stomo right side left i am but doctor my be broken bone or heaney mater has ther been ex rays at this time u like me  3 or more deal going on  secont a pineyon my be    i dont like to say broktn bone  hernia my be neting  area my be weak both on right side. my best guess,/ see your heria doctor  see both stgma my big mouth here good luck

Sat Apr 10, 2021 3:30 pm
c57557555 wrote:

your stomo right side left i am but doctor my be broken bone or heaney mater has ther been ex rays at this time u like me  3 or more deal going on  secont a pineyon my be    i dont like to say broktn bone  hernia my be neting  area my be weak both on right side. my best guess,/ see your heria doctor  see both stgma my big mouth here good luck



Sat Apr 10, 2021 4:03 pm
c57557555 wrote:

your stomo right side left i am but doctor my be broken bone or heaney mater has ther been ex rays at this time u like me  3 or more deal going on  secont a pineyon my be    i dont like to say broktn bone  hernia my be neting  area my be weak both on right side. my best guess,/ see your heria doctor  see both stgma my big mouth here good luck


I think I understand what you are trying to say.... thank you mister, god bless. 👍🏻

Sat Apr 10, 2021 4:11 pm

good luke

Sat Apr 10, 2021 4:32 pm

I have a colostomy and wouldn't think twice about having it reversed if I was the right candidate for it. Unfortunately, after taking many expert opinions was advised against it. I can't have open heart surgery either and had to settle for stents. A result of the wicked life that I led! Some good advice for you here by some knowledgeable and experienced ostomates. My advice for what it is worth is to take a reversal if the doctor is assuring 100% success. Not much to hesitate with that sort of assurance. Wishing you all the best in whatever you decide to do. 

Sat Apr 10, 2021 4:45 pm
bowsprit wrote:

I have a colostomy and wouldn't think twice about having it reversed if I was the right candidate for it. Unfortunately, after taking many expert opinions was advised against it. I can't have open heart surgery either and had to settle for stents. A result of the wicked life that I led! Some good advice for you here by some knowledgeable and experienced ostomates. My advice for what it is worth is to take a reversal if the doctor is assuring 100% success. Not much to hesitate with that sort of assurance. Wishing you all the best in whatever you decide to do. 


I'm sorry to hear you cannot have a reversal but I have me fingers crossed for your open heart surgery! Hey he doctors precise words were and I quote 'yes your stom is absolutely reversible' which is as close to 100% as can get right? I have gone from having an incredibly active lifestyle exercise 7 days a week to absolutely nothing and I just want to be able to workout again and do normal stuff without having the worry of all of this. 
All the best for the future 

Sat Apr 10, 2021 6:43 pm
KROS86 wrote:


This is soo lovely, thank you.....Trying to talk to friends or my girlfriend or work colleagues about this stuff is near impossible all I get back is 'you will be fine in no time' or 'just slow down and be patient' without having the experience to give constructive advice on how to really deal with everything especially my emotions which are all over the place. Thank you for taking the time to help me. 


KRO,

The advise from your support system is spot on. I know hearing from those that have walked in your shoes is a little more reassuring as well as more detailed. You are lucky to have those folks by your side. 
Everyone handles this differently emotionally and all I can say to that is "It is what it is"! That is my moto with most things Ostomy related. After cancer 5 times, I feel like a super hero for beating the odds. Everyone going through an Ostomy, temporary or permanent, are truley Super hero's to me! Please allow yourself to go through the emotions you are having. It even does us good to have a Good ole pity party on occasion. Even the strongest of us still do! There is no shame in that. No non-Ostomate will ever understand what you actually go through mentally or physically! Just know it is normal. So have a good cry sometimes when you need the release and you will heal! 
Please keep us posted on your recovery! We all really care! 
Puppyluv

Sat Apr 10, 2021 10:40 pm

the bulge could be any number of things.  you're only a few weeks out from surgery and sometimes it can take months for everything to heal fully.  i know it can be awful when you don't fully understand everything happening in your body, but try to be patient with yourself.  as long as you're not experiencing new or worsening pain, bleeding, fever, there's probably nothing super emergent that will need more surgery soon.  Even if it is a hernia, you can go quite a long time with out needing surgical intervention.  you should of course ask your medical team about it--they will likely give you a list of symptoms or things to watch for so you'll know of there are big issues that need medical care.  for almost everything else, we've all at some point had a new ostomy and had to figure it all out too, so feel free to come back and ask questions or for help whenever you need to! 

Sun Apr 11, 2021 8:02 am
KROS86 wrote:

Hi all thanks for all your support as this is my only thread and the people it has attracted definitely know what they are talking about 😉 I would love your opinion on this.......I have a big bulge under my stoma, when I walk it feels like I have a stone or something in my tummy it's a horrible feeling I think I have parastomal hernia but I can be a hypochondriac haha it sticks out a lot when I stand but not when I am laying down, I am 6 weeks since surgery and am still very swollen I had a hartmans procedure as well as hitting a tree head on @ 40mph so I'm hoping it's a combination of the stoma procedure and the trauma from the crash, I'm seeing the stoma nurse Tuesday to see what the deal is but I would appreciate any advice on managing a para hernia up until reversal surgery as an additional operation sandwiched between the stoma procedure and the reversal is not something I'm interested in neither will my surgeon and neither will my boss! So anyone who wants to help out a 35 year old finance worker keep his job and his sanity please feel free to leave a comment...... 

It sounds like hernia, it is quite common. If you go on NHS website there is some good information about hernia and stoma. I too have developed a hernia I have been given a hernia support pants,lots to choose from. If you're nurse doesn't give you the Tel number for them give me a shout and I will send it you. When they do the reverse surgery they can sort the hernia at the same time. X

Sun Apr 11, 2021 11:36 am

Hi KROS86,

  Like Caz said, from your description it does sound like a hernia, one symptom of which is when lying down it's not as prevalent. Either that or you're pregnant! It wouldn't hurt to assume you do have a hernia until you see the nurse on Tuesday.  I'll tell you right up front that whenever they see a bulge or lump like you describe they'll automatically assume it's a hernia.......and send you to a specialist for a scan.  That's unless it's obvious something else like an abscess.........but you'd know if it was because you'd feel like crap with an infection like that and the area would be red and warm. 

  I'd suggest until Tuesday you wear a belt or tigh underwear.......something that keeps pressure on that area, but nothing ridiculous.  The thing about hernias is they're very manageable as long as they don't get worse.  And because your surgery was so recent, and your incision is not fully healed, you don't want the hernia getting any worse.  It won't be fun carrying your bowels in your hands as you walk into the doctor's office complaining your lump broke!  Ok, just kidding..........that rarely happens.........but for a couple days I'd play it safe and not give it an opportunity to get worse.  If your abdominal wall has been breached, the less there is to fix the better, and your surgeon will thank you.  Hey.......welcome to the wacky world of ostomies!  Just another reason to get that reversal and get the hell out of here!!

regards,

bob  

 

Sun Apr 11, 2021 3:48 pm

Thank you, KROS86 for the good wishes. Like some others have said that sounds like a hernia, a common occurence but fairly easily removed. It can be treated at the same time as the reversal. I had colon surgery and a growth removed in the bladder at the same time, two different surgeons though. When one of them asked me about diabetes, I answered that is the only malady I haven't got and everybody had a good laugh about that. They say you must not wait too long for a reversal. Best wishes and good luck.

Sun Apr 11, 2021 8:03 pm

Hi KROS86,

 

I'm so sorry to hear about your accident...indeed I can understand your shock when you woke up with that crazy thing sticking out of your abdomen.  Take one day at a time and just keep reminding yourself you need that time to heal.  Take it from me, having a chunk of your intestine removed without properly letting it heal before reconnection can be disasterous.  I ended up septic because the doc reconnected me instead of giving me a temp colostomy to help with healing.  Now, I'm hanging out with it everyday.

Best wishes to you!!

 

Mon Apr 12, 2021 1:03 pm

Hi all thank you for your kind words it's helping me come to terms with things slightly quicker and making me more grateful for things I do have. I had a chat with my nurse that changes my operation wound dressing this morning and she said how fortunate I am and that people who have had the injuries I sustained in the crash don't usually survive that resulted in a small moment of clarity for which I am ever so grateful for. 

I looked at my hospital discharge notes today as I need them for my personal injury insurance claim which I hope covers the cost of my private op. It said I had 20cm of my sigmoid colon resected upon further investigation that is about 50% of the sigmoid colon removed hopefully still plenty for them to 'play' with.

I am due to go back to work next week albeit on a phased return and they are arranging for a desk to be delivered to my house which I can also work from standing up. I have also mastered the art of showering without soak my bag or my wound dressing so definitely progress not perfection! 

thanks to you all again for advice I never would have had if it had not been for this forum, today I feel blessed I hope I feel the same tomorrow. 

Tue Apr 13, 2021 1:46 am
bowsprit wrote:

They say you must not wait too long for a reversal. Best wishes and good luck.


Yeah, that's because if you hang around and party with this crowd too long you'll never want to leave......and it's ostomates only on here.  So everybody........stop telling KROS86 how much fun having an ostomy is.....for his own good!!!

;0)

bob

Wed Apr 14, 2021 6:49 am
w30bob wrote:


Yeah, that's because if you hang around and party with this crowd too long you'll never want to leave......and it's ostomates only on here.  So everybody........stop telling KROS86 how much fun having an ostomy is.....for his own good!!!

;0)

bob


Haha thanks Bob I will cherish the time I have left on here (hopefully not too long). I had a look for UK based forums similar to this one and there seems to be nothing like this available which is a shame...

lockdown number 3 has ended over here (for how long god only knows) this means I can go back to the gym and do a bit of cardio and when my support garments arrive look at some low weight exercises and get myself as fit and healthy and reversal op ready ASAP...... 

 

p.s thestoma nurse is very happy with my progress and we have come to the agreement I won't have any more face to face check ups just a phone call every 6-8 weeks and I can call them if I have any issues. I'm slowly reclaiming my independence and thus feeling more normal. 

I hope you guys are all good and are having the best of days..... ☺️

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