Struggling with Ostomy News

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TerryLT
Reply to odaatcathy

It's a bit complicated. If you still have all or most of your colon, a reversal might be easy with a great chance of a good outcome. It's just that many or maybe even most people with ileostomies have already lost all or most of their colons. Then it's a different story. Definitely discuss it with your surgeon to put your mind at rest.

Terry

odaatcathy

Hi Terry... Thanks for the info. I realize I hijacked someone's thread but I was so upset having read Daisy's situation. My best wishes to Daisy as well as my apologies. Yes, I have my whole colon... just the rectum was, shall we say, shortened a wee bit. Best wishes, Cathy

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TerryLT
Reply to odaatcathy

Oh, you should be fine then. Don't worry about hijacking on this site, happens all the time!

Terry

Beachboy

Hello Daisy,

Had emergency surgery in November of 2022. Now living with a colostomy. Had a very active life, now age 65.

I was told I "might" be able to get a reversal 6 months after surgery. So I did a lot of reading and research about reversals, and was hopeful. But before my emergency surgery for intestinal perforation, I endured 46 radiation treatments for prostate cancer. And I soon learned: Radiation causes permanent tissue damage. Meaning I have a high probability of reversal failure. Even if the reversal surgery for me did work, my bowel might not work normally. My wife and I consulted with my surgeon for over an hour. He was very patient and willing to go ahead with reversal. In the end, I chose not to "roll the dice." My surgeon commented to me later "wish I had more level-headed patients like you." He explained patients push hard for reversal even after he discusses all that could go wrong.

I'm sure we would all LOVE to be rid of the bag. But not if it comes with a significant decrease in our quality of life.

So I accept my fate. Even gave my temperamental little buddy a name: Herb.

I always remind myself: Grass is not always greener on the other side."

Cheers, Dan

thebertonlagden
Reply to Daisy2023

Hi, 

 

I am one of the few that had to push (and suffer) for years to get my ileostomy. As I have children, we chose to name my ileostomy, we called it Stanley - while I appreciate that it is unique to everyone. Stanley gave me my life back and reversal is not only not an option but the very last thing I would ever want.

Today I attended a local Patient Education Event and while chatting to a stoma nurse about some recent 'Stanley explosions', she said something very pertinent...... She said to always remember that my stoma lives with me I don't live with it....... That really struck me and as much as I love and am grateful for my Stanley, it really made me think about how I need to now learn to take control of my life and not be controlled by my stoma.

 

I hope it helps and that you find a way to accept, learn to love and accept your stoma. 

 
Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister
Siouxsee

I prepped for 6 months (high protein, Ensure, quit smoking and drinking) for my takedown surgery. I was approved and went in. After surgery in the recovery room, he leaned down and said "I could not reconnect."

Came to find out later he tried for 9 hours to remove adhesions, but it was just not meant to be.

I started therapy because I was so angry and depressed. 5 months later, I am a little bit more in control.

infinitycastle52777

I found out 3 weeks before my scheduled reversal that I could not get one. I had been planning it for a year, looking forward to it and getting back to a normal life. Then at my pre-surgery appointment with the surgeon, she told me a reversal just was not possible because I don't have enough large intestines left to re-attach to. I was crestfallen. It was the biggest letdown. I had to have surgery anyway, to re-locate my stoma. Because for a year (a miserable year) I couldn't wear a bag. My stoma had been placed in my waistband and a bag just would not stay on. So I spent a year with a diaper across my waist and constant messes all over everything and my skin all eaten up due to having poop on it all the time. I was even on Norco for the pain. Then to find out after going through all of that that I couldn't have a reversal and would have my ileostomy for life, I was crushed. I don't think I am over it even now and that was 6 months ago. I think you have to feel what you feel about this. If you need to cry, scream, stomp, let out a big burst of air. Take care of yourself and be kind and gentle with yourself as you process this.

Lee

Daisy2023
Reply to Siouxsee

Sorry so late in replying to this but I’m so sorry to hear about what happened to you. I hope you are doing okay now 

Daisy2023
Reply to infinitycastle52777

How are you doing now? I’m so sorry for what you went through. My late is reply is that I’m just getting better from having surgery and wasn’t feeling much like being on the computer. I’m quite down. But yes I hope I accept this sooner rather than later. I’m doing better though I think