lymphacytic collitis, diverticulosis. ABTOXIN (C Def), NET removed

Posted by mimisayhi @mimisayhi, May 27 3:09pm

Am looking for someone that has been diagnosed with Lymph (microscopic) collitis and/OR AB Toxin C Def, and has had a NET removed from colon and all of ascending colon and lymph nodes. For me, about 2 years ago I had explosive diahhrea after eating. In October 23 I was diagnosed (biopsy proven) with all tge conditions I listed above. Seems like tge surgery was successful for NET but no DR. addressed the collitis(biopsy proven), AB Toxin OR cdiverticulosis, here I am 3 months after surgery in pain and horrible abdominal cramps and diahrrea, no appetite, weight loss. If one more person suggests its mental health(how I think about it-depressed mood, lethargy- I will scream. OF COURSE I am depressed and tired, but was Not until all this pain and hopeless feeling. I had a possitive outlook on life, and was very grateful and content. Thank you all for being here

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pb50 | @pb50 | May 27 5:23pm

Geez Louise. I would think the antibiotic for C-Diff is priority!
did they say anything about it?

I have collagenous microscopic colitis but treatment is same as lymphocytic - namely a course of a colon-specific steroid called Budesonide. Maybe something in your NET treatment conflicts with it?

I would lay out the three known conditions in Oct23 -‘things that don't just go away- and ask where the treatment stands for everything but the NET. If you use my chart i’d send a message. Just choose follow up.as the reason. They discourage it but in your case you need to document your inquiry. I always start that i am happy to schedule a visit or a call if they prefer. Maybe saying that you are still in pain with cramping, diarrhea, and no appetite and are hopeful if treatments are still outstanding they might bring some relief.

shelleyW | @shelleyw | May 27 6:53pm

You are so right, mental health issues, are side effects, not causative factors. Those people and drs, should not speak to someone else's experience and pain, if they have not experienced the same pain themselves.