Adjusting to Ileostomy, Feeling Less Than 100% - Success Rate of Colon Transplant?

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 and 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?

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. 

Thank you.

Hi Rene, Henry 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 perceived 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 a 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 the 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 throughout 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!

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.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

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

100, 85, 33.235 or 1 is all a state of mind, I learned this from our neighbor's dog whose name was changed to Tripod. Even missing a leg, that dog could chase cars with the best of them. Then on the other hand, you have people that have it all like Robin Williams - rich, funny, and cute in his own way - yet he thought he was less than 1. We are blessed! You can look one way and see people better off, and the other way 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

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 forever. 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 don't let our 'condition' define us.

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

Hi Rene, I've had my ileo 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.

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.

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.

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 cares. 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 want 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 prevails on the planet that is his new home.

Everything is relative!!

Eamon

I find that Mylanta 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

Hi there, my brother 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 took 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 apartment 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

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 a dipshit, not sure which.

Eamon

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

Thank you, Magoo. I've had my appetite back for quite some time 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 at one end and U-shaped closures.

Hi Rene, contrary to all the one-sided advice. I must say that there is a great wealth of products out there and it 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 advise what might be best for you. I have had 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 to 5 days. I have, although, had plastic clips break or come unhinged. It's really 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