Is there anything I can do for the bloating?

Posted by ericnjeffrey @ericnjeffrey, Dec 20, 2024

I am newly diagnosed with a NET in the terminal ileum. I am scheduled for Surgery on 12/30. I am going to a surgeon who specializes in this type of surgery. He wants me to have a pet scan prior to surgery. The only symptoms I have are bloating/ pain. The bloating comes and goes but it makes me tired and not feel like eating without nausea. Is there anything I can do for the bloating?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | Dec 20, 2024

Hello @ericnjeffrey and welcome to the NETs support group on Mayo Connect. I am sorry to hear about your symptoms. Bloating, pain, nausea, and fatigue are difficult symptoms to deal with daily. I'm guessing that you have probably experienced weight loss as well.

Here is a link with many discussions about NETs in the ileum.
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=Ileum#discussion-listview
I'd encourage you to read these posts and see what other members have experienced similar symptoms. If you find a post and would like to ask questions or comment, then click on the "Reply" button below the post.

Please share a bit about how NETs were diagnosed. Did you have a biopsy of the ileum because of the symptoms you were having?

ericnjeffrey | @ericnjeffrey | Dec 20, 2024

Thank you for responding. I had no symptoms. But I had a positive colo-guard. Then I had a colonoscopy where the gastrointestinal doctor saw the NET. The biopsy results are a grade 1. I had a ct scan of my abd and lung. The results are negative. I also had a blood test for chromogranin A It was 49. My symptoms started the week of my colonoscopy. And yes I have lost weight.

Colleen Young, Connect Director | @colleenyoung | Dec 29, 2024

Here's a related discussion:
- Anyone else get bloating and abdominal pain from NETS or Lanreotide?
https://connect.mayoclinic.org/discussion/does-anyone-else-get-bloating-and-sharp-abdominal-pain-from-nets-or-la/
@ericnjeffrey, I'm thinking of you as you prepare for surgery tomorrow.

tmneuro | @tmneuro | Dec 30, 2024

Hello @ericnjeffrey
I too had surgery for a NET in my terminal ileum 11 years ago and will be interested to see how your surgery went. Thinking of you today and during your recovery in the days ahead.

ericnjeffrey | @ericnjeffrey | Jan 7 8:03am

Thank you. I had a small bowel resection 8 days ago. I am doing ok. I tire easily, and I don’t have much of an appetite. The discomfort is controlled with mostly Tylenol and 1 tramadol a day. The pathology report came back yesterday. There is only the one tumor , grade 1. All 24 lymph glands were negative. I am very thankful.