Anyone suffered with diarrhea 3 mos after surgery small intestine NET?

Hi thalverson, On July 1, 2022 I had the surgical removal of a neuroendocrine tumor in the small bowel following a very uncomfortable blockage (I had had no carcinoid syndrome). I’m a relatively healthy 81 year old man. It was “laparotomy general surgery” (large incision). The surgeon removed a well-differentiated neuroendocrine tumor with a 1.2 cm greatest dimension. Tumor was also present in 1 of 6 lymph nodes. He removed 19 cm & 5 cm segments of bowel in a resection of distal jejunum. Staging: pT2, pN1, pMx.

I had some problems with reestablishing normal bowel movements and I walked more than any patient my nurses had had recently seen and I think this helped with the eventual bowel recovery.
I’m fortunate that two subsequent PET scans with dotate (CU-64) and CTs have not showed any metastasis but my bowel movements are not as consistent as they were for most of my life. I’ll have a day or two of loose bowels but not usually the “volcano type” as the nurses call them, and in the same week I may have a day or two of very solid, somewhat difficult to move bowels. Then go a week or more with regular movements. I haven’t seemed to see any patterns regarding my diet or eating habits. I have had some foot issues that have kept me from continuing my walking routine, I’m hoping to re-establish that and perhaps it will help my occasional bowel problems. I wish you the very best with your problem. Bob

This was very helpful reply. Sounds like your surgery was very similar to mine. Thank you

@thalverson, in addition to the helpful post from @beech18bob, I'm tagging fellow NETs members who have mentioned diarrhea after surgery like @kathleenandbob, @bluebelle, @harley4650, and @plbyates

You might also find tips in these related discussions:
- What helps with gas and pain after surgery?
https://connect.mayoclinic.org/discussion/gas-2/
- NETs: Scheduled for small intestine resection: What to expect?
https://connect.mayoclinic.org/discussion/newly-diagnosed-and-scheduled-for-small-intestine-resection-what-to/
How is your recovery going overall?

Hi! I am almost 3 months out from my surgery, and yes, I still have diarrhea daily and it is controlled some by a prescription anti-diarrheal med and my diet. But, some days (like today) there seems to be no rhyme or reason for it. I haven’t had a solid stool in over 7 months now. It sounds like you’re doing pretty good but with a few days of diarrhea so hopefully things will improve soon. I pray you see much improvement soon! My diarrhea has gotten a lot better since right after surgery (going 15+ times a day to maybe 5-7 times a day now). Right after my surgery, my doctor told me it could take 6-8 weeks to get back to some normalcy. Unfortunately for me, I’m just not sure if I’ll have a full recovery or not. Prayers for you and all with NET cancer…

I am 10 years out and my diarrhea has improved, but no predicting attacks. The only medication, after trying sooo many, was Tincture of Opium drops that saved my embarassment when outside my home and rather quickly helped with the spasmotic pains in about 1/2 hr. I would take it to prevent diarrhea when I would be eating out at a wedding for example. As of June of '23 the Tx is not available at my pharmacies in NJ and FL. No explanation other than the med is unavailable from suppliers.
I am quite isolated from social occasions because of the diarrhea. I had been taking the Tx for several years, with excellent results. Along with that my oncologist prescribed Oxycontin 10 mg. bid to constipate me. I have been takaing iit for several years now and just within the last year, I have nearly formed stools. Diarrhea and urgency still occurs...no was to expect it.
The worse part of all this is the self isolation my husband and I experience. We have to carefully plan our moves outside my home because of my fear and actual "accidents".
I hope things work out soon. I am thankful for the decision to surgically remove the visible tumors. No signs of new mets in the last 10 yrs. Be well. K