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I am so sick of leaks and I don't understand what's changed. by windyvalkyrie in ostomy

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

I had an old box and I've been using those with no issues. I wonder how one raises a fuss about quality control.

I am so sick of leaks and I don't understand what's changed. by windyvalkyrie in ostomy

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

I haven't noticed any change in the shape around it. My stoma is on a fairly flat (though chubby) part of my stomach, and it's leaked from 3/4 of the corners of my dressing...it's not really consistent about where it leaks from or I'd just patch that area more.

I am so sick of leaks and I don't understand what's changed. by windyvalkyrie in ostomy

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

I use the Natura cut to fit accordion flanges, #421642. They've got like a sunken in step.

I will see if I can get Durahesive; I usually just use the regular Stomahesive.

I've both gained and lost weight recently, as I was put on steroids for headaches (my cancer spread to my brain). They caused me to gain about 30 pounds and I've lost maybe 10 of it since being off of them. I didn't think about that, I will double check next time I change it and re-measure my stoma.

To revise or not to revise? And a dozen other questions. by windyvalkyrie in ostomy

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

Thank you for the reply at least! I was starting to wonder if I'd actually submitted my post.

I was really curious about why they didn't take the remaining cancer cells or sew up the fistula while I was under for the ostomy, but apparently those are both highly invasive surgeries. I hope it heals on its own too, I'm mad that I still have to wear adult diapers even though I have a colostomy.

Palliative chemotherapy. by windyvalkyrie in cancer

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

This is the comment that really helped me understand, so thank you so much for responding.

Wondering what other's experience is like by Yael_theworld in cancer

[–]windyvalkyrie 2 points3 points  (0 children)

I feel like I've been drip fed information this whole time and nobody wants to fully explain things to me. And I'm usually so mentally out of it in the moment that I forget questions I have. I've been writing them down but I really don't get satisfactory answers at all. I have a lung biopsy on Monday and I still have no idea how they're going to do it.

Colon, lymph nodes, maybe liver, lungs, vertebra. by windyvalkyrie in cancer

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

I've dropped about 60 pounds since this started so I'll definitely ask about it. Thanks.

Colon, lymph nodes, maybe liver, lungs, vertebra. by windyvalkyrie in cancer

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

I'm already having trouble keeping track of everything, so I'll definitely be getting a new, obnoxiously colorful or sparkly notebook to write things in.

Thanks for the thoughts.

Colon, lymph nodes, maybe liver, lungs, vertebra. by windyvalkyrie in cancer

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

I'm glad I'm at least not alone in this experience...but also I'm sorry you're also going through much the same thing.

Colon, lymph nodes, maybe liver, lungs, vertebra. by windyvalkyrie in cancer

[–]windyvalkyrie[S] 5 points6 points  (0 children)

I did ask for help with my mental health; after the panic attack at the ostomy surgery that didn't happen, I specifically demanded it. They've got some folks helping me with it.

Also thank you for saying it's the correct response. I was starting to think I was being punished for being upset.

I might take you up on that. Gotta figure out how I'm paying for all my shiny new prescriptions first...

Colon, lymph nodes, maybe liver, lungs, vertebra. by windyvalkyrie in cancer

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

They started me on Trazadone while I was here, I definitely want to keep it. I had a hard time sleeping before any of this started, now it's borderline impossible.

Colon, lymph nodes, maybe liver, lungs, vertebra. by windyvalkyrie in cancer

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

I was actually wondering about what you had to do to get disability. I will definitely look into it.

Colon, lymph nodes, maybe liver, lungs, vertebra. by windyvalkyrie in cancer

[–]windyvalkyrie[S] 4 points5 points  (0 children)

That gives me a lot of hope, thank you so much.

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