What are NETS?

Thank you.

No problem, @ginpene05. As I have had three surgeries for NETs I like to inform people about this rather rare form of cancer. By the way, this is the same form of cancer that took the life of Steve Jobs and Aretha Franklin. While most the media reported that they died of pancreatic cancer, the facts were that they had NETs located in the pancreas. This is totally different than pancreatic cancer.

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!

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!

I admire you, @nancybev. You really have it together~

Just to share my own story...I started having horrendous attacks in September of 2013. I went over two years of seeing many GI doctors and no one had an answer (was even told it could be nerves or stress!). Fast forward to November 2015 and I ended up in the hospital because the attack was so severe. They finally caught me "in" an active attack and did a CT scan. The good news was they finally knew it was "small bowel obstruction". The bad news was they told me there wasn't much to be done about it. I had 30+ abdominal radiations back in 2003. After two more years of attacks, hospital stays, NG tubes I was desperate. I was told that if I had a very severe attack that couldn't be fixed with an NG tube I would have to have emergency surgery. The problem was supposedly this could cause more adhesions and hence make me worse. The attacks were coming once a month. I finally decided to see a laparoscopic GI surgeon in NYC. He was affiliated with Mount Sinai. He was amazing**. He asked me "Why hasn't anyone tried to help you?" I broke down. He spent a lot of time talking to me. He felt there was less than 5% chance of developing new adhesions if he could succeed with laparoscopic surgery. He would know more when he actually went in. I agreed to have regular surgery IF when he looked he thought it was the only choice. Bottom line was I really couldn't do worse than I was doing. He successfully did the laparoscopic surgery and removed 4 feet of small intestine and a small amount of large intestine. I had radiation enteritis. This was 7/31/17. I cannot say that recovery was simple, but I have my life back. The trade-off is that have diarrhea most of the time, but that was happening anyway. I now am working with a GI doctor to help me with this. I avoid certain foods and he is trying some different meds to regulate me. I think I just have "short bowel' syndrome. I eat lower fat, higher carb diet. I know alcohol can be a trigger. Each person is different. I'm also a vegetarian /vegan. My diet is probably 60/40. Anyway, I hope this helps anyone who is suffering. **I have to say this particular doctor didn't take insurance. We paid up front and I ended up getting about 60% back from my insurance company as I had a PPO. Worth every cent.

I have been suffering with symptoms year and half Starting with bowel incontinence loose stools vomiting one a week. 30 lbs weight loss due to loss of appetite. Loud bowels sounds constipation not emptying completely Gastro dr. Endoscopy h pylori tests blood test X-ray of abdomen normal except all stool on left side. Started researching and abdominal adhesions causing bowel obstruction sounds right. Ectopic preg hops have shot of methotrexate and released. Days later abdomen filled with blood and surgery to remove tube fertility problems and during csection dr said insides were horrific with adhesions now ten years later don’t know what to do going gyno who said that in a week sorry if so long or wrong place to post feel helpless

Welcome to Connect, @my3taurus @christinespinel @lanikai16.
I’d like to invite @nonnie @ginpene05 @loriel59 @19630831 @sita @michrn @carlwgordon @sickvick and others to join me in welcoming you all. Here are some other discussions that might also interest you:
– SBO due to Adhesion https://connect.mayoclinic.org/discussion/sbo-due-to-adhesion/
– Lumpy, Dumpy & Grumpy https://connect.mayoclinic.org/discussion/lumpy-dumpy-grumpy/

@christinespinel, are you comfortable sharing more details about your visit to the gynecologist?

@my3taurus, I’d sincerely encourage you to view the Colorectal Cancer group on Connect – https://connect.mayoclinic.org/group/colorectal-cancer/
Feel free to join a discussion or start a new discussion, and tag members. For instance, you may wish to post your message in this conversation:
– Colorectal cancer stage 3c: Need positive feedback https://connect.mayoclinic.org/discussion/need-positive-feedback/
– Colon Cancer: Fecal Incontinence and Reversal Surgery https://connect.mayoclinic.org/discussion/post-reversal-surgery/
– Living with colorectal cancer - Meet others & come say hi https://connect.mayoclinic.org/discussion/living-with-colorectal-cancer-meet-others-come-say-hi/

@lanikai16, has your mother’s doctor offered an explanation or treatment suggestions?

I am new to this group but not to this condition,...and desperately need to figure out how to manage it better. I had my worst nightmare and got an attack on a transcontinental flight.. barely made it home, being sick in just about every airport bathroom along the way. What a,m I doing wrong? I avoid scary food , which is a list of every food that could have triggered an attack. I don’t eat meat or dairy. I avoid all raw veg and fruit except those I can peel. It sometimes something I’ve always eaten with no trouble seems to trigger an attack. I have been vegan for more than a year, but stay away from fibrous beans and try not to eat many whole grains. Should I just stick to a liquid diet?