Hi all, this is going to be short, and I hope sweet, to all of you whose partner does not understand what you are going through and may appear cold and standoffish. The next time you visit your ostomy/stoma nurse, then take them with you. My wife wanted to know more about what we all have attached, so she made a point of coming in when I was in the hospital to speak to one of the stoma/ostomy care team. This was of great help for her as she had never known anyone that has gone through what our worldwide community has to deal with each and every day. So, my ostomy/stoma brothers and sisters, get your partners involved like I did. Both my wife and I found this to be very helpful indeed. Oh, I only became a member of our community in August of this year after being rushed into the hospital with diverticulitis.
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“Doctors took notes; they want others to find this website.”
“From midnight blowouts to big wins, there’s always a hand to hold.”
Hubz had a regular checkup with the oncologist on Friday (his numbers are improving), and as they were asking how he's feeling since surgery, they became curious about how he's doing so well with his ostomy, both physically and mentally. He credited doing research online, trying different things, and especially the support from this group. They were asking because they see so many patients struggling to adjust.
We described this group as folks with every kind of ostomy, some for days while others for decades, but all willing to share what's worked for them with the caveat that every individual is different.
We described the most valuable element as feeling like you're not alone in this. That really piqued their interest, and they wrote down the link. It seems they had a few people in mind that might benefit from the community and thanked us for telling them about it.
You know, we can't remember exactly who we learned about this group from, but we're grateful for it every day! Thank you all! 🌻
I would not be here today if it were not for my son and ex-spouse being there every step of the way from the moment I awoke from surgery to learn I now had the bag, to the first bag change, to carrying my gift bags out to the big trash, to helping me order everything from supplies to meals that are most suitable to the bag's temperament. I was so ashamed and embarrassed at first, but they just stepped up and acted like it was the most normal thing in the world. These gentlemen are all correct - if your loved ones aren't as confident at first - you be confident and they will follow suit. I know how difficult this life change is for all of us, but, oh Lord, it is so much easier with acceptance and assistance. If you don't have any familial loved ones, get your closest friends involved. Mine gave me my first shower. I was humiliated but too weak to protest. You would have thought she'd been a 25-year stoma nurse the way she took charge. Like Kolan said, let others be part of your team. You will heal faster and they will be grateful to have something they can do. It's as much of a shock to them as it was to you. Go through recovery together. God bless the husbands, wives, significant others, children, friends, brothers, sisters, mothers, and fathers that helped restore us to our former selves. You'll never know how much it meant.
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How to Manage Emotions with LeeAnne Hayden | Hollister
Well done to one and all who have had a supportive partner, wife, or husband. About 18 months after my urostomy, my ex-wife walked out; she apparently couldn't come to terms with the bag. It's me who had the bag. I tried everything to involve her, but she wouldn't have any of it. That was 12 years ago, and I have now met the most wonderful woman in the world who accepts me, bag and all! Be lucky, people.
My 13-year-old granddaughter wants to go see the stoma team. I think her dad is okay with it, and so am I. My wife of 34 years stood by me the whole time. She never did a bag change but was there when I did. We were still active sexually, and it never bothered her. I am saddened by all the losses after this life-saving change and am glad my wife stayed with me to the end (she passed away in 2011). Hope all fare well in this new life and can find a hand to hold in troubled times.
Charles
Thank you all for sharing. It gives me hope that maybe someday I will meet someone who will be there for me with my ileostomy.
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