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Mon Apr 04, 2022 9:47 am
"This is the best website for people with an Ostomy, hands down. So much understanding. Everyone should join."

Had an Ileostomy done in October 2021. I’ve adjusted to the emptying, changing, and obtaining needed supplies pretty normally. I even do the extra chewing thing and trying to stay hydrated. I had a total colectomy due to cancer an did not need chemotherapy or radiation. But with that gone, I just don’t feel like myself anymore, more like 85%. Will this feeling ever go away and does anyone know what the success rate is for a colon transplant if it ever became an option for me?

Mon Apr 04, 2022 10:18 am

I've had a colectomy too.  I'm not sure, when you say you "don't feel like myself anymore," whether you're referencing physically, mentally, or perhaps both.  Since you're only five months out from surgery, both mental and physical recovery are going to be necessary.  If you're at 85% already, I'd guess you're ahead of the curve.  Both will come, but everyone is different.  As for hoping for a colon transplant, I'd shelve that idea because it could tend to prolong or even poison your recovery progress.  Full recovery --esp. mentally -- will require you to be all in with your new reality and devote yourself to dealing with it in a fulltime, positive fashion.  We've all been there, so we know that it can be done. 

MeetAnOstoMate - 26,920 members
Mon Apr 04, 2022 11:25 am


HenryM wrote:

I've had a colectomy too.  I'm not sure, when you say you "don't feel like myself anymore," whether you're referencing physically, mentally, or perhaps both.  Since you're only five months out fr...

Thank you 


Mon Apr 04, 2022 12:00 pm

Hi Rene , Henery hit the nail on the head .  The  First thing  you can do right now is to accept it and learn all you can from this Site . Any questions you might have will be answered by someone  on here .  

    Later when you are closer to 100 %  better you have lots of time to think about your possible options . Believe me / us , recovery  and adjustment will be a full time job for you  !!  It can be tough at times , dealing with leaks  or some other percieved disaster !! 🙂☘. Just remember ....don't panic !! 

    You will have ups and downs as you go  and hopefully more ups than downs  !! 🤗.  There is a huge choice of Appliances  and you have to find the one that works best for you . People who can't stand to empty and  don't like the process of " Making the Sausage !! " ....actually getting up close and personal with your Poop !!  then you could use a two piece . People just take off the bag  off the Wafer and throw it away !!   I prefer the Convex  One-Piece Hollister  bags . I posted a pic of the one I use . This has a plastic convex reinforcement which is amazing for making  good seal   with the rim of your Stoma , never leaks . 

   One serious tip for you . Don't trust the Velcro  Closure !! It can come loose . I just take a little strip of 1 Inch  tape and stick it over the Velcro  closure  , just in case !! 👍. 3M Micropore Surgical Tape  is the only tape to use , comes off only when you want it to !! 

    When you are eating normally  and get all your strength back you will feel much better , physically and emotionally . Don't be too paranoid about going out or it leaking or you will seriously restrict your life activities .  I swim in pools and Ocean , ride a mountain bike in our hills  . There are lots of Lotions and Potions for your skin in case you get irritation .

    I hope you feel more like yourself soon Rene , it will happen .  Eat as much as you can handle  and small bits of food throughiut the day  is best . Beware of Pizza Crust , if you eat the crust then chew and chew ...try not to swallow chunky bits  !  

  All the best and welcome to the Family !!  🤗☘



Last edited by on Tue Apr 05, 2022 11:22 am; edited 1 time in total

Mon Apr 04, 2022 12:07 pm

Hi Rene,

Ditto what everyone else said. All good advice. And welcome! It's been 2 years for me and I don't know if I feel 100% myself. Maybe I am still looking back to my old self... need to look forward to my 'new normal' and my 'new self'. 😊 And I guess we kind of make that up as we go along. 

🌻

Mon Apr 04, 2022 12:22 pm


Anonymous wrote:

Hi Rene , Henery hit the nail on the head .  The  First thing  you can do right now is to accept it and learn all you can from this Site . Any questions you might have will be answered by someon...

Beware of pizza crust??!!  Now you tell me!!  LOL

Mon Apr 04, 2022 3:04 pm

100%, 85%, 33.235% or 1% is all a state of mind, I learned this from our neighbors dog who’s name was changed to Tripod. Even missing a leg that dog could chase cars with the best of them. Then on the other had you have people that have it all like Robin Williams rich, funny and cute in his own way, yet he thought he was less then 1%. We are blessed! you can look one way and see people better off and the other was and see people worse off. Then you can look here and see people in the same bag 🤣🤣, all here to help, support and love!

I will be praying for you!

cplumber

Mon Apr 04, 2022 3:19 pm

I agree with all that has been said so far! If by '100%' one means 'just like before' then I'm sorry, but I think our experience and 'new reality' does change us for ever. We are 'different', but for lots that 'different' is actually better, not worse, than before. I'm not going to try to say 'how', because I think the answers will be as individual as we are.

I think I emerged kinder, with greater empathy, my priorities changed..... and I no longer have time to read a book in the bathroom any longer! And twenty years on, I think I've achieved things every bit as worthwhile post-colostomy as I did before. As a clergy friend of mine asked a parishioner: 'Hello Dai, how's life?' 'Oh, pretty good really - given the alternative....!'

Life can be as good as ever, if we we don't let our 'condition' define us.


Mon Apr 04, 2022 7:35 pm

You got it Sally ,  you probably won't get to 100% ...nobody ever does in this life but we can always shoot for it I guess .   Accepting the Stoma as being part of your life  Permanently  is the beginning step .  That will eliminate a lot of stress . Worry about alternatives later . 

All the best , Eamon ☘

Tue Apr 05, 2022 8:10 am

Hi Rene i,ve had my ilieo. for 30 some years and when i,m feeling down i try to get outside and get some fresh air and maybe if i,m lucky sunshine as i live in N. Mich.

Tue Apr 05, 2022 10:07 am

Thanks Ron. Sunshine is pretty easy to come by here in Florida. My job keeps me pretty occupied. Getting outside does seem to help. We just had our mini horses out for a drive this past Sunday for my father’s birthday and had lunch at a small restaurant on the trail. I mostly think about it when I am trying to sleep and get up to empty the bag every couple of hours. Just trying to figure out how to keep my stoma quiet at night. 

Tue Apr 05, 2022 10:14 am


Anonymous wrote:

You got it Sally ,  you probably won't get to 100% ...nobody ever does in this life but we can always shoot for it I guess .   Accepting the Stoma as being part of your life  Permanently  is t...

Thank you Magoo. I’ve accepted it mostly. It’s just the little things that crop up that kind of get to me. But I’m learning how to get through that. I like to think that everyone has a stoma or I like to think I am an alien from another planet and that’s just part of my normal anatomy. 


Tue Apr 05, 2022 10:43 am

LOL ..  that's one option . The thing is nobody knows who has one , nobody but you !!  Put yourself in another person's shoes ....they will not know unless you tell them . You wouldn't be concerned about your choice in  knickers , right  ? Only You know what you are wearing  except BF or Hubby of course !  You could wear your Great Grannies Bloomers and  you could just grin because nobody would know .   , who carws . I think that's the way you have to look at it , nobody knows and nobody cares ....if you are careful .  

   At the beach you can use the swimsuits the Ladies here suggest .  I just try to ignore it and make sure there's no risk of a leak . Think of it as part of your underwear , just another thing to take off and put on a fresh one  when required . 

   There is an amazing episode of The Twilight Zone where they address this idea very well .  The Astronaut gets to another Planet  and is captured by the residents of the Planet .  They end up in a hospital where he is in bed  . The Nurses and Doctors are looking at charts and appear  shocked at what they are seeing . They all have their backs to the camera and are engaged in an animated discussion about their new arrival .  I think they discuss his face and how to help him get it " fixed" .

    They turn around and they all have little Piggie Snouts and are pretty damn ugly , wouldn't wat to take one to meet Momma !!! 

    The camera pans to the Astronaut  ( regular Earth face  !!)  as he screams . It turns out that he himself is the Alien , the odd man out and doesn't fit into the definition of Normal  which prevalis on the Planet that is his new home .

Everything is Relative !! 

Eamon ☘

   


Tue Apr 05, 2022 10:47 am


Rene wrote:

Thanks Ron. Sunshine is pretty easy to come by here in Florida. My job keeps me pretty occupied. Getting outside does seem to help. We just had our mini horses out for a drive this past Sunday for ...

I find that Mylants helps with the gas . The gurgling that sounds like a malfunctioning water pipe is going to happen no matter what . Sometimes I hear what sounds like water flowing  , really strange  !!!  Got a Water Feature in my belly !! 

Eamon ☘


Tue Apr 05, 2022 11:19 am


Cplumber wrote:

100%, 85%, 33.235% or 1% is all a state of mind, I learned this from our neighbors dog who’s name was changed to Tripod. Even missing a leg that dog could chase cars with the best of them. Then o...

Hi there , my Rother in New York had a Beautiful Cocker Spaniel . The dog ran like a racehorse .  One day they came home and found him unable to walk . The evidence showed that he simply jumped off the kitchen table when he heard them coming . He had broken his back and Spinal Cord . When he recovered  my Brother got a little 2 wheeled rig that strapped onto his back and gave him wheels instead of back legs . I believe that Dog didn't know the difference ...or care  !! When the Canada Geese came on the lawn he would be gone , chasing them all over like he was a " normal" Dog !!  In the house he would scoot around on his front legs on the slippery hardwood floors  and wearing a Doggie Diaper  . All he saw was what was right in front of him . He too to those wheels like a Duck to water , as if he always had them . Too much self awareness is the problem .  I try to do what Horse ( huge paws ) did , ignore it !  ☘

     Just a bit on Robin Williams . He had a form of Dementia called  " Lewy Body Disease/ Syndrome " . This is a horrible form of Dementia which damages the Brain emotionally and physically . Losing Brain function  a bit at a time and losing your cognition , losing your own self awareness is more than many of us could  put up with . I think it was his right to end his own life when he did .  All these sleazy stories about his death are sick crap that people  write just to get Clicks on a website .

   I used to see Robin Williams at the local coffee shop in San Francisco , minding his own business and everyone giving him his space . He was a very friendly guy and a devoted family man . When making "Mrs Doubtfire the house  in the movie ( probably $10  Million by now !!)   was just a block from my Studio  Apt in Pacific Heights . While the cast and crew were just hanging out  for the director to set up scenes Robin Williams would be out on the street doing comedy sketches for the tourists and locals who came to have a look .  He was such  a great guy  and the ultimate in comedy in his early years especially .

RIP  Robin ☘💚

Eamon ☘


Tue Apr 05, 2022 11:27 am

Oops!!!   In the First post above I made a bad typo somehow ...typing in the dark maybe !!🤪 lol .   

I typed  " Worst  thing you should do ....." instead of  " First thing you should do  " . In this context it's a huge difference  !! I know , I'm an idiot or   just s Dipshit , not sure which ☘🤪

Eamon ☘


Tue Apr 05, 2022 11:32 am


Anonymous wrote:

Oops!!!   In the First post above I made a bad typo somehow ...typing in the dark maybe !!🤪 lol .   

I typed  " Worst  thing you should do ....." instead of  " First thing you should do...

Everyone makes mistakes. Don't be too hard on yourself Eamon. 🤗 (I think this is a hug emoji?)

Tue Apr 05, 2022 6:19 pm


Anonymous wrote:

Hi Rene , Henery hit the nail on the head .  The  First thing  you can do right now is to accept it and learn all you can from this Site . Any questions you might have will be answered by someon...

Thank you Magoo. I’ve had my appetite back for quite sometime now and reintroducing foods back into my diet and paying attention to the results. I also have Velcro closures and for added security I use a triangle paper clip, the ones with the metal clip @ one end and u shaped closures. 

Tue Apr 12, 2022 9:25 pm

Hi Rene, contrary to all the one sided advice. I must say that there is a great wealth of products out there and makes it hard to decide what’s best. Without having to spend so much money to try everything, I would recommend that you see an ostomy nurse who can give you various options to try and also to advise what might be best for you. I have had a an Ileostomy for over 40 years and have virtually tried just about everything on the market. For one a Velcro closure is no worse than a plastic clip. I prefer Velcro instead of a clip. If Velcro is closed properly it will not come undone. I have never had a pouch unroll on me and I can wear a pouch for up yo 5 days. I have although had plastic clips break or come unhinged. It’s really is a matter of preference. The good thing is there is no wrong or right. One other thing I can recommend. Go to Edgepark.com or call them. You can request a free catalog of ostomy and other products. They have all the brands, styles and shapes that you can view. Mike

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