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NETs: Scheduled for small intestine resection: What to expect?

Neuroendocrine Tumors (NETs) | Last Active: Oct 12, 2023 | Replies (85)
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@bluebelle

Thank you so much for responding. I already feel better knowing that I am just 8 weeks out and that it could take months as you said to feel better. I am trying to eat protein but I am sure I’m not getting enough. I bought some Vegan protein powder that I am going to try this weekend bc I can’t handle animal protein drinks. I have been on Pepto, Imodium, prescription Lomotil, and now I am on Colestipol 2 x a day for the bile acid diarrhea. I ate a very bland low residue diet for a few weeks and have been trying to add other foods with fiber and some greens etc. I hate electrolyte drinks but I found one today that I actually like and can tolerate but I hate the thought of drinking so much sugar.
After I meet with my oncologist on Nov 14th, she will discuss a treatment plan for me. Do the infusions generally help to make you feel better or tend to add to the symptoms already present?
Thank you so many ch for reaching out!
Sherry

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Replies to "Thank you so much for responding. I already feel better knowing that I am just 8..."
phyllisden | @phyllisden | Oct 7, 2023

@bluebell, So sorry to hear you’re having struggles with your diet post surgery, but I certainly understand. When I had my small intestine resected in March 2018, I had few problems. But then in July 2019 when I lost 11” of my large intestine/colon, I had a lot of problems. My weight dropped to 104, and even though I’m only 5’ tall, that was way too much. And I couldn’t keep anything in me. So I did some research and came up with a diet on the Cleveland Clinic website that helped me so much, I shared it with my oncology team. I also started walking nightly around my patio and sidewalk to build up my strength.
Here’s a website you might check out: https://my.clevelandclinic.org/health/articles/15637-gastrointestinal-soft-diet-overview
I hope you will find something soon to help you start feeling better. Now I pretty well eat what I want but still avoid spicy, creamy, or high fiber foods. But I do keep plenty of Imodium on hand if I need it. This disease can be fairly manageable, it’s just a matter of figuring out what that means for you.
My best to you.

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