Chronic small bowel obstruction from adhesions

Hello @ginpene05

NETs is the abbreviation for neuroendocrine tumors (sometimes referred to as carcinoid), a rare form of cancer, usually found in the digestive tract. Here is a link to an explanation from Mayo's website, https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/symptoms-causes/syc-20354132

I've copied the first paragraph here:
"Neuroendocrine tumors are abnormal growths that begin in specialized cells called neuroendocrine cells. Neuroendocrine cells have traits similar to nerve cells and to hormone-producing cells. Neuroendocrine tumors are rare and can occur anywhere in the body. Most neuroendocrine tumors occur in the lungs, appendix, small intestine, rectum and pancreas.
Neuroendocrine tumors can be noncancerous (benign) or cancerous (malignant).

Diagnosis and treatment of neuroendocrine tumors depend on the type of tumor, its location, whether it produces excess hormones, how aggressive it is and whether it has spread to other parts of the body."

At Connect, we have a discussion group with lots of posts from those of us dealing with NETs. Here is the link to those discussions,
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?tab=discussions. While this is a rare form of malignancy, there are many of us dealing with.

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Great explanation. I’d be interested to know if anyone with nets has had their gene study done to determine heredity. My gene study showed a mistake in my genes but heredity inconclusive at this point.

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I had my colonoscopy on 11/16, Dr wanted to see the intestinal reconnection site from inside and generally check things out. Surgery site looked good, but found diverticulosis throughout the colon and also removed a polyp. Started having issues the next week with lower abdominal pain, so went on liquid diet. Was really careful at Thanksgiving but started having worse pain, so back to liquids. Took a laxitive yesterday and called GI Dr at Mayo. They called back this morning and said I needed to go to ER. Just got home, they did a CT scan and found diverticulitis down near the surgery site. Gave me pain meds in my IV and started me on antibiotics. Glad I got to come home and eat some delicious chicken broth! Haha.
Now wondering what kind of fiber they will let me eat, since it helps with diverticulosis, as they have had me on this low residue/ low fiber diet due to the obstruction. It sure can be a struggle when you are afraid to eat!

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Hi again, everyone. I don't know if this will help anyone else with recurrent sbo's (mine, again, are for adhesions), but I just wanted to report the results of my recent dietary experiment and how it seemed to affect the severity of the partial sbo I started to get two nights ago.
As I mentioned in other posts, I've started to have pretty much all clear (or pretty clear) liquids during the day, and at night I try to stick to healthy soft foods and super-healthy smoothies. The idea is to make it as unlikely as possible that if an sbo starts there will be anything in my digestive tract that doesn't have a reasonably good chance of getting through.
So as I was going to bed two nights ago, I started to feel the dreaded pangs. Unfortunately, that night I'd done something unusual and ate a whole orange, but otherwise everything I'd had that day was soft/liquid (the most solid thing was ice cream!).
Long story short--although I had a decent amount of pain, it never reached the level it usually does. And I vomited only ONE time--I think because I was so thirsty by last night that I took in more liquids than I could handle yet.
I've been exhausted and useless, but the main thing is that I never got to the point where I felt that I needed to go to the hospital!! This afternoon I was able to take a nap sleeping on my stomach, which always seems to indicate the danger has passed.
So I'm encouraged and motivated to continue. If I'd had the usual severe pain and vomiting I would have headed for the ER, but if I can keep these things manageable enough with my nutritional regimen to avoid repeated (expensive!) hospital stays, I will have achieved my goal. And it was nice not to be so scared this time.
So maybe it's something others can try, if they're interested (I also did some stretching, walking, and light massage at the beginning).
But I would never suggest that anyone NOT go to the hospital if symptoms become more severe. It's risky.
Sorry for the long post!

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Hi @thull
Thanks for checking in with us. I'm sorry to hear of the pain you have been experiencing. I understand it though. I'm glad that the ER gave you some help with the pain and that you are on antibiotics now. That really helps.

I understand the struggle with low residue and trying to get enough fiber to be helpful. There is a product called Smooth Move tea which can be quite helpful in keeping regular and has a less dramatic effect than laxatives.

Has anyone provided any instructions for the low residue/fiber issue? It is a dilemma, isn't it?

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I have heard of Smooth Move tea. I will have to try it. The only thing the dr said after the colonoscopy was I can start introducing some more fiber into my diet, and they would go over it at my follow up appt. problem is, when they sent me the info on the appointment, it is not until Feb 11th, which does me no good now. The dietician had put me on iron because I was anemic and said I might need to take stool softener , but that is almost as harsh as the laxitive. The tea might be a good alternative. Thanks for suggesting it. I am sure now that this is going on they might move up the Feb appt. Hope you have a great rest of the week!

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Hi @thull

If the stool softener is harsh for you, you might try making the tea very weak at first and see how your GI tract reacts to it. Also, barley is a great source of fiber that works gently through the GI tract. There are a lot of good soups with barley. You might try that as well.
Will you keep me posted?

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