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Reversal misery

tiny one
Posts: 467
Joined: Jan 2009

Want to hear from those who have chose to have a bag put back on. How did you come to this decision? How long had you had your reversal? Have you regretted your decision? I haven't had a second opinion yet but I want to get one. Did any of you get second opinions. After 20 months I'm still having alot of pain and soreness, some days in the bathroom alot. I'm very dependant on lomotil, if it weren't for this medication I would be housebound.

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

for your pain.im having bathroom problems also but would never choose to go back to the bag.just dont think i could live like that if i didnt have to.my surgen told me yesterday that i need more fiber in my diet so i will try the fibercon that he suggested and try to eat more foods with fiber.thats what is going on with me but your situation may be different.hope all works out for you i know you have been fighting the bathroom issue for a while.going to go and get chemo #7 now,take care Godbless.....johnnybegood

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FighterWife
Posts: 1
Joined: Jun 2009

My husband just had his fourth surgery and now has a permanent colostomy. Although we are not thrilled about it, he was miserable after his take down - spent half his life on the toilet, did not sleep through the night, couldnt even sit through a movie. Now, with his ostomy, he is sleeping through the night and is relatively pain free.

HOWEVER, his connection was very close to the rectum (10 cm) , and that may make a difference to how you feel after reconnection. His anasthamosis (the connection site) was also the site where the cancer chose to come back.

Although it's a change in lifestyle, I am happy that he can sleep again and sit through a movie or a play again.

Good luck to you. It's a hard choice.

tiny one
Posts: 467
Joined: Jan 2009

How long was he without the bag? Did he have damage from radiation? My polyp was low also. Was there alot of foods he couldn't eat? The bag does give you alot of freedom.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I eat everything I want anytime I want, but now the noise is sometimes embarrassing but im slowly getting use to it....my bag is no problem at all...and I am inventing a muffler system for it..... :)

tiny one
Posts: 467
Joined: Jan 2009

How long did your husband put up with his takedown? My connection was very low also. I have scar tissue from my radiation treatments. What led him to his decision to put the bag back on? Thank you for responding to my questions.

NWGirl
Posts: 124
Joined: Jan 2008

I had my ileostomy for a year while I went through chemo/radiation. I had my take down surgery in November 2008 and it has been a challenge adjusting to my new plumbing. Its been 6 months now and I was hoping I'd be closer to normal than I am. I know I'll never be "normal" - but come on, this is really a pain in the a**.

I also find myself wondering if I should just say the heck with it all and opt for a permanent colostomy. I really don't want another surgery and/or the mental adjustment you have to go through to come to terms with the bag. BUT - I know when I had my ileo, the ileo itself did not compromise my lifestyle at all - and the reversal definitely does. I'm tired of spending so much time in the bathroom and I'm tired of butt burn all the time. I'm tired of trying to make dinner or clear off the table and have to make 6 trips to the bathroom in the process. I'm pissed that I have to tell my family I can't go camping this year because I can't (won't) visit the campsite bathrooms half a dozen times in the course of any given hour.

Anyone who says "don't go back to the bag!!!!" has never experienced the freedom an ostomy can provide and the limitations of trying to get through a take down surgery. I'm not there yet - meaning I'm not ready to call my surgeon, but I sure do think about it a lot.

taraHK
Posts: 1961
Joined: Aug 2003

I am not in the same situation as you, as I had a permanent colostomy from the start -- so no option for reversal.

I don't want to try to influence your decision. I know it is highly personal and there are a lot of factors. It is good to hear from people who have had success from the reversal, even if it took a little time.

But I just want to say that my experience is that "the bag" is not such a bad deal -- after some time getting used to it. I can swim, hike, go in a jacuzzi, have a "personal life" (if you know what I mean), etc. I irrigate every day, which means I wear an extremely small pouch (more like a bandaid) and have no output during the day. This isn't an option for everyone, but has been wonderful for me.

Good luck as you make your decision and I hope your problems diminish.

Tara

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