Intestinal Blockage with NETs: Anyone else?

Posted by gene0552 @gene0552, Sep 11 6:11pm

Diagnosed with NETS, small intestine primary. Now susceptable to intestinal blockages. I am day 43 after recent intestinal blockage surgery and system is slow to restart. Anyone been thru this long. Scans show contrasts going all the way but very slow.

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

Hello @gene0552 and welcome to Mayo Clinic Connect. I get the sense that the time this is taking feels longer than you were expecting.

I wanted to bring in member @hopeful33250 who has shared previously about her experience with intestinal NETs and may be able to share more with you given your concerns.

What was the timeline you were expecting vs. what you were told by your doctor?

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Hello @gene0552

I'd like to join @amandajro in welcoming you to Mayo Connect. As I have had three surgeries of the upper digestive tract (duodenal bulb) for NETs I can certainly understand your concern about the slow digestive process,

I know that it seems like 45 days should be more than enough time to recover from surgery and be back to normal, but it sometimes takes much longer. If you care to share more, what type of surgery did you have? Was it a resection of the intestinal tract or was part of the intestinal tract removed?

It does take a while for your system to recover. From my experience, I have found that small, frequent meals work best. If I try to overload my stomach with lots of food in one meal, I will undoubtedly have discomfort. Is this what you are dealing with as well?

I would like to invite @browndog to this discussion as he might have some helpful ideas.

I have also found that starting the day with a liquid nutrition drink and adding some fruit and then putting it in a blender is quite helpful. It helps you to get the necessary nutrition and fiber in an easily digestible form.

Slow transit constipation is very common following any digestive tract surgery. You might also try products like Metamucil and MiraLax on a daily basis.

Have you asked your doctor about suggested eating plans?

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@amandajro

Hello @gene0552 and welcome to Mayo Clinic Connect. I get the sense that the time this is taking feels longer than you were expecting.

I wanted to bring in member @hopeful33250 who has shared previously about her experience with intestinal NETs and may be able to share more with you given your concerns.

What was the timeline you were expecting vs. what you were told by your doctor?

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The previous blockages and surgeries for NETS took 1 week from surgery for my intestines to wake up. Even though this surgery was a little more extensive doctors expected 3 to 4 weeks. Today is day 44 and nothing has worked.

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I have not eaten in 45 days. They feed me intravenously and have had 5 NG tubes. The bile will not pass thru. Contrast tests show it is passing thru slowly. Doctors don't know why. Even had one say they never had one that took this long. It was a blockage and hernia repair with small piece of intestine removed.

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So the plan today is to try to just "go for it". Remove the ng tube, see how long before the nausea starts and tough thru it. The biggest issue, is I don't poop. Pass a little gas, that's it. Day 45 of no food no drink no poop.

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I hope your issues resolve quickly and the plan goes well. This past year I've had two primary NET's removed, one in the small intestine/ileum, one in the lung. I had a few similar issues in one of my recoveries. My hemicolectomy regarding the small intestine involved 8 days in the hospital with 6 or 7 days (it's a blur, now) of the ng tube because of some similar issues you stated. Nausea, vomiting, diarrhea, excess bile. They referred to it as an Ileus. The ng tube worked to keep me from vomiting and from having the uncontrollable diarrhea but the bile and the now, controllable, diarrhea were still a problem. The doctor didn't know why I was having these issues for so long and tried a similar "plan" as they are starting with you. He did then keep me in the hospital a few more days while they added a couple of items to my diet to make sure my body could handle it before sending me home. Anyway, I say all this as I hope you are on a better path now that they started the new "plan" for you. And, I hope you get to go home soon and continue to heal. 45 days is a long time. I only experienced a somewhat same problem for 8 days. I feel for you and hope you are on to better days of the healing process!

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@gene0552

So the plan today is to try to just "go for it". Remove the ng tube, see how long before the nausea starts and tough thru it. The biggest issue, is I don't poop. Pass a little gas, that's it. Day 45 of no food no drink no poop.

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Hello @gene0552

I've been thinking about you and wondering how you are. Have you been able to go without the NG tube? I hope the doctors have come up with an answer for you.

Will you post an update and let me know how you are doing?

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