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

@mgb20, I totally agree with @phyllisden ! It was probably 15 years before I was finally diagnosed in 2007 when I was 43 years old (I'm now 59). By then, the tumor had grown around several loops of my small intestine until I had complete blockage. During surgery, they removed two masses, one 7 cm and one 2 cm, as well as lymph nodes. They had to resect all the bowel in between, removing 80%.

Personally I haven't had to change my diet much, but have learned what I can and can't eat. My issues started out more about gas and bloating than diarrhea. However, as the disease has progressed, my serotonin levels have increased which causes Serotonin Syndrome. Again, I've learned what I can and can't eat. Cinnamon rolls with glaze on top are no longer in my diet (insert sad face!).

When I first came home after surgery, I ate soft foods, no spice, lots of mashed potatoes and soup. The diarrhea was definitely an issue. However, an EMT friend told me to eat solid food to get more bulk in my intestines, which made prefect sense. I was just afraid how food was going to make it's way through my digestive track with so much of it missing. It certainly helped.

I was started on Octreotide injections in 2009, and switched over to Lanreotide about a year ago. It took a bit for my body to adjust to the new meds, but overall I'm doing well. That doesn't mean I never have diarrhea, but I just try to pay attention when I'm out and about as far as knowing where restrooms are, etc. I used to carry a back pack with me with a change of clothes any time I traveled out of town. Those days are long gone!

I did 4 rounds of PRRT in 2020 due to increased activity in my tumors and markers. I have been stable since then with no growth and no new tumors!

Don't be afraid to jump in and just see what works for you. Walk, walk, walk is also a must. Remember, every one is different so you just have to do you! Don't be afraid of your new normal, embrace it as a gift because you're still here! I've been Stage 4 with low grade tumors for 15 years now so there's always hope!
Never give up, and advocate for YOU!

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I had a resection in 2015 and had about a foot removed. Yes you will have loose stools but I found I can control it with diet restrictions. You have to accept your situation and be disciplined. It also depends on what section is removed as to your dietary restrictions and a lot of that is trial and error. For myself I cannot tolerate sugar as it will run through me. I used to weigh 170 but now am stuck at 133 to 139 and can't gain any more weight but it is livable. I can handle very well protein and so limit myself to chicken and salmon with wheat pasta with a sardine lunch. I can't do milk or most dairy products, You can't do soft drinks or any drink with sugar. For about six years I couldn't do any liquid except small sips especially cold drinks like cold water or it would trigger diarrhea. Now after seven years I can take a cup of coffee in the morning and not have a fast bowel movement and hot tea in the evening. If you are a big coffee drinker, forget it. that is a thing of the past. As to getting my necessary fluid I eat daily and I mean daily a generous salad of peppers, tomatoes, cucumbers and apple. Lettuce would probably be nice I just don't eat lettuce. If you do any beef get only the leanest, the four percent fat. my breakfast is bread or bagels(generally two or three each morning. I don't eat much after breakfast until dinner to avoid a lot of toilet time. At supper I also have a serving of cauliflower or even better broccoli. Broccoli is your friend, It takes many months for your body and brain to adjust even years. things improve but slowly. You must always be near a toilet facility after eating. I have had a few instances where I have defecated on myself by not heeding that rule. Generally you will need to take a bowel movement, not by choice, an hour or two after any meal. Things do get better as the months roll on but one needs PATIENCE. SUGAR IS ALWAYS YOUR ENEMY. I tried a soft drink for the first time in seven years a few months ago and paid the price with a lot of toilet time. I can give more information but this is generally my experience. One adjusts and adapts. As to the procedure, my choice was either have it or die. I chose living. Good luck. Oh and as to travelling any distance, I make sure my guts are generally emptied. I do not drink or eat anything while on the road after that until I am either back home or at a place with a good toilet facility where I can stay for a few hours to again relieve myself completely.

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@mgb20, I totally agree with @phyllisden ! It was probably 15 years before I was finally diagnosed in 2007 when I was 43 years old (I'm now 59). By then, the tumor had grown around several loops of my small intestine until I had complete blockage. During surgery, they removed two masses, one 7 cm and one 2 cm, as well as lymph nodes. They had to resect all the bowel in between, removing 80%.

Personally I haven't had to change my diet much, but have learned what I can and can't eat. My issues started out more about gas and bloating than diarrhea. However, as the disease has progressed, my serotonin levels have increased which causes Serotonin Syndrome. Again, I've learned what I can and can't eat. Cinnamon rolls with glaze on top are no longer in my diet (insert sad face!).

When I first came home after surgery, I ate soft foods, no spice, lots of mashed potatoes and soup. The diarrhea was definitely an issue. However, an EMT friend told me to eat solid food to get more bulk in my intestines, which made prefect sense. I was just afraid how food was going to make it's way through my digestive track with so much of it missing. It certainly helped.

I was started on Octreotide injections in 2009, and switched over to Lanreotide about a year ago. It took a bit for my body to adjust to the new meds, but overall I'm doing well. That doesn't mean I never have diarrhea, but I just try to pay attention when I'm out and about as far as knowing where restrooms are, etc. I used to carry a back pack with me with a change of clothes any time I traveled out of town. Those days are long gone!

I did 4 rounds of PRRT in 2020 due to increased activity in my tumors and markers. I have been stable since then with no growth and no new tumors!

Don't be afraid to jump in and just see what works for you. Walk, walk, walk is also a must. Remember, every one is different so you just have to do you! Don't be afraid of your new normal, embrace it as a gift because you're still here! I've been Stage 4 with low grade tumors for 15 years now so there's always hope!
Never give up, and advocate for YOU!

Jump to this post

Hi mbg20,
My husband has recently had a small bowel resection on Feb 27. He originally had a 3 inch section removed with the primary tumor site that was not known to be NET during an emergency hernia repair. He had a CT and PET scan. The cancer was stage 4 grade 1, slow growing. It had metastasized to the liver and lymph nodes. No further tumors showed in the small intestine on the scans. The surgery on the 27th they felt the entire small intestine and found 6 more bee bee sized tumors. They removed 2 feet of the small intestine at that time along with nodes, partial liver removal, gallbladder and appendix. He has not had any diarrhea and is not on any meds yet. He was told the same thing as you because they don't know until in the surgery. I hope your outcome is positive.

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mgb20, Reading your post was like reading my story - 5 years ago (3/18) I, too, had a blockage in my small intestine (after 11 years of the medical community trying to figure out what was going on with me). I had emergency surgery to remove the Neuroendocrine tumor that was causing the problem plus multiple smaller tumors, resulting in the loss of 10” of the intestine. Then in July 2019 I had a blockage in my large intestine and lost 11” (plus the surgeon removed my appendix as a preventive measure). So, I’ve definitely been down the “how to recover from bowel resection surgery road”. It’s challenging but far from impossible.
I found an excellent soft diet to follow on the Cleveland Clinic website that worked so well for me that I shared it with the cancer center where I receive treatment. There are multiple diets you can find online (Mayo, oregonsurgical.com, even Web MD). The important thing is to find one that you like, will follow, and works for you. As you start to recover, start walking. It doesn’t have to be far but it’s important to start your system working again. Imodium then and still is my best friend (if I need it). I started Octreotide LAR injections a month after the first surgery (and am still on them in addition to doing PRRT at Mayo in 2021). They are designed to help control the diarrhea.
So, a soft diet for a few weeks before starting to slowly reintroduce other foods, walking (I started in the hospital), and whatever stress reduction techniques work for you, and you’ll be okay . Be patient and take care.

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