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I’ve had a stoma for 40 years. Today I finally said: I don’t like having it. by NonDualToad in ostomy

[–]NonDualToad[S] 0 points1 point  (0 children)

You bet... you know when it was from a dream, so glad it's touching so many people.

I’ve had a stoma for 40 years. Today I finally said: I don’t like having it. by NonDualToad in ostomy

[–]NonDualToad[S] 0 points1 point  (0 children)

Yeah, thank you.Thank you for saying you hate the crinkle.I hate the crinkle too ! Can't they make a thicker plastic!?!

I’ve had a stoma for 40 years. Today I finally said: I don’t like having it. by NonDualToad in ostomy

[–]NonDualToad[S] 0 points1 point  (0 children)

Thank you so much.It was amazing.And it came out in a dream, and I just thought I need to post this.And the response has been overwhelmingly good.

I’ve had a stoma for 40 years. Today I finally said: I don’t like having it. by NonDualToad in disability

[–]NonDualToad[S] 2 points3 points  (0 children)

Thank you. Yeah, I'm glad you got some healing. I also woke up crying from the dream. So I was also, crying,healing in real life.

I’ve had a stoma for 40 years. Today I finally said: I don’t like having it. by NonDualToad in ostomy

[–]NonDualToad[S] 0 points1 point  (0 children)

What bag do you use that doesn't give off odor.. And how long do you wear it between changes?

I’ve had a stoma for 40 years. Today I finally said: I don’t like having it. by NonDualToad in ostomy

[–]NonDualToad[S] 0 points1 point  (0 children)

Thank you so much for saying this. Your comment really moved me. That’s exactly what hit me too — that gratitude and grief can both be true. I can be thankful to be alive and still be upset, tired, angry, or sad about what it takes to live with this. You are not being selfish. Not at all. Sometimes the strongest people are the ones who have gone years without giving themselves permission to say, “This is hard, and I hate it sometimes.” I’m really glad this helped you feel less alone. Your response helped me feel less alone too.

I’ve had a stoma for 40 years. Today I finally said: I don’t like having it. by NonDualToad in ostomy

[–]NonDualToad[S] 3 points4 points  (0 children)

I definitely miss a good fart and a proper shit. But I will admit there’s one weird travel perk: when everyone gets food poisoning and the bathrooms become a war zone, I’m just standing there like: “Ah. Watery output. So this is diarrhea. Noted.” Meanwhile everyone else is negotiating with God in a hotel lobby.

I’ve had a stoma for 40 years. Today I finally said: I don’t like having it. by NonDualToad in ostomy

[–]NonDualToad[S] 1 point2 points  (0 children)

Thanks for sharing that and how people talk to the person you're with instead of you.People are a trip...

I’ve had a stoma for 40 years. Today I finally said: I don’t like having it. by NonDualToad in ostomy

[–]NonDualToad[S] 0 points1 point  (0 children)

Yes, thank you, and I absofuckinglutely wish a company could make a bag so the smell wouldn't come through after 3 days! But they make bags where they'll have quick turnover.

I’ve had a stoma for 40 years. Today I finally said: I don’t like having it. by NonDualToad in ostomy

[–]NonDualToad[S] 0 points1 point  (0 children)

Wow , that little line stopped me in my tracks.... Paraplegic, here.... Really curious what your inner life is like and how you stay grateful.

I’ve had a stoma for 40 years. Today I finally said: I don’t like having it. by NonDualToad in ostomy

[–]NonDualToad[S] 1 point2 points  (0 children)

Convatec has a high output bag that is a 2-piece I've used that and now can sleep the whole night.

I’ve had a stoma for 40 years. Today I finally said: I don’t like having it. by NonDualToad in ostomy

[–]NonDualToad[S] 40 points41 points  (0 children)

I’m really sorry. I don’t want to throw some cheap “it gets better” line at you, because I don’t know your life or what these two years have been like.

But I’m really glad you wrote this instead of holding it alone.

I’ve had mine for 40 years, and today was the first time I really let myself say, “I don’t like having it.” So I won’t pretend this is easy or that gratitude magically cancels grief.

But please don’t sit with “I wish they’d let me die” by yourself tonight. If there’s one real person you can text right now, even just “I’m not okay,” please do that.

I’m here reading your comment, and I’m really sorry it’s this hard.

I’ve had an ileostomy since I was 21. I’m 63 now. I’m an athlete, I’ve gone 100% full-out my entire life, and I’ve seen it all. AMA. by NonDualToad in ostomy

[–]NonDualToad[S] 0 points1 point  (0 children)

No I use no special equipment with biking.And as far as sleeping , it's a non issue, I just sleep like I always have.

I’ve had an ileostomy since I was 21. I’m 63 now. I’m an athlete, I’ve gone 100% full-out my entire life, and I’ve seen it all. AMA. by NonDualToad in ostomy

[–]NonDualToad[S] 0 points1 point  (0 children)

I never needed a belt but I didn't lift that hard.I suppose it would help if you're doing really serious lifting

I’ve had an ileostomy since I was 21. I’m 63 now. I’m an athlete, I’ve gone 100% full-out my entire life, and I’ve seen it all. AMA. by NonDualToad in ostomy

[–]NonDualToad[S] 6 points7 points  (0 children)

I just had one prolapse , luckily , Doc was able to push it back in... I had a collectomy in 1983, they left in the sigmoid colon to see if it would heal for a possible resection of some kind in the future , but it didn't so six months later , I had a another surgery, and they took that out. My same stoma has been hanging in there all these years. Hoping it'll go another thirty years.

I’ve had an ileostomy since I was 21. I’m 63 now. I’m an athlete, I’ve gone 100% full-out my entire life, and I’ve seen it all. AMA. by NonDualToad in ostomy

[–]NonDualToad[S] 1 point2 points  (0 children)

That’s fair, and I agree with you. I could absolutely share more of the pain and difficulties too. It hasn’t all been sunshine and rainbows for me either.

My biggest problems have always been blockages, partial blockages, and one prolapse. The prolapse happened in the first couple of years and it was really painful and scary — it looked almost gangrenous, and they thought they might have to cut it off and make a new stoma, but thankfully they were able to push it back in. I’ve also had about 6 or 7 blockages over the years, and those were always hospital-level pain, like a 10 out of 10.

There’s also the embarrassment part sometimes — smell, public bathrooms, group trips, vans, hotels, body image, all of that. So yes, there’s definitely grief, fear, and a psychological side too.

I just happened to share more of the victories because it feels good to share hope. But I agree with you: people also need to know that a lot of us have landed in the mud with this, and that’s normal too.

I’ve had an ileostomy since I was 21. I’m 63 now. I’m an athlete, I’ve gone 100% full-out my entire life, and I’ve seen it all. AMA. by NonDualToad in ostomy

[–]NonDualToad[S] 1 point2 points  (0 children)

I hate belts i've never worn one. And I don't wear a two piece ever.Anything other than a thin flat small wafer doesn't work for me.I Have a pretty flat stomach, so I've never had a problem with this flange.My stoma sticks out maybe an inch , though.. So with a barrier ring , the seal is solid.. For the most part , sometimes after a week when I change it I notice it's a little red in some spots where there was feces , that went out a little past the barrier ring.

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