Since I can't get into the local nurse until Aug 1st, I went with a video call with an ostomy nurse from Convatec, and I cannot recommend it highly enough! She was great, saw what I was dealing with, and flat out said, “That isn't a stoma, that's basically a fistula” and had some ideas of how I can deal with it. She helped me measure the stoma so that I cut the hole the right size (I was cutting it too big) and thinks my skin will heal if I can just keep the output off my skin. Since no amount of convex will ever get my stoma to stick out, she said less convex and more bendable might be the solution. So, she will be sending me a less convex product that will bend much better with my stomach, as that's where my leaks are happening, where I bend. She also advised about the toilet paper in the bottom of the bag to fight the suction effect. I felt really seen and heard, and that was so helpful. Highly recommend if you are in need of help!
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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! 🌻
Thank you for this info. I have reached out now to schedule a consult with ostomy nurses from Hollister and Convatec, but I wouldn't have thought to do this. I appreciate the tip!
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