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Hi! I want to preface I am under the care of GI. I’m just looking for experiences or suggestions for conversations with my GI.I (33F) have had the following:2014 - severe lower cramping with bloody stool. No testing was done but was told likely diverticulitis2017 - severe upper cramping. Again, no testing but was told it was likely a stomach ulcer.2018 - severe lower cramping with bloody stool. No testing was done but was told likely diverticulitisOver the years I started to experience more symptoms until I’m where I’m at now.Now I have constant diarrhea (liquid or soft fluffy at best) 1-8 times per day. Typically it is pale or yellow. It comes in suddenly, typically in the AM but I do have occasional midday or evening/overnight. Little to no warning, which has lead to fecal incontinence. Lots of bowel sounds. Indigestion near daily, hours after eating at times. Fatigue. Burning/cramping sensations. Bloating and flatulence.I have had a colonoscopy/EGD with biopsy. All negative. Im still getting tests so more to come.I have tried Imodium, low-FODMAP, gluten free, dairy free, elimination diets, etc. I have tried pre/probiotics, digestive enzymes, antibiotics, oil or oregano, and various other dietician ordered supplements.Anyone else experience this? What was your outcome? Any advice on what I should ask my GI about?I know it’s possible but I’m scared I’ll end up with the “can’t find anything” IBS-D diagnosis and basically be sent to live like this.I have my next appointment in a week.Thank you for reading!
Replies to "Hi! I want to preface I am under the care of GI. I’m just looking for..."
Retired GI nurse, diverticulitis at your age is highly unlikely. If you were treated with antibiotics for it and still had symptoms then that wasn't the right diagnosis.
Sounds like IBD inflammatory bowel disease, which should have showed on biopsies. Do you have a copy of your pathology report by chance?
You could ask for a blood test for IBD like ASCA or pANCA. Have they checked your inflammatory markers?
@chronisgirlie92: Your symptoms sound familiar. I went through many tests 4 yrs ago and finally the 24 hour Urine test revealed the underlying cause. It may be worth a discussion in your next Dr visit? Best to you…
Have you been tested for Crohn's Disease? It can only be definitively diagnosed in pathology. That would mean another colonoscopy and tissue samples sent into pathology. If it is positive, you will need to take one of the biologics. I am on Stelara for my Crohn's. Good luck!
Me too. Been going on for a year and half ( sans the bloody stools)
Had your doctor done a GI infectious disease panel? ( biofire)
How about lactoferrin? Or fecal calprotectin? Have you traveled outside the country? Wrk eith animals? Or small children?
I would want to rule out:
WBCs
Cdiff
Campylobacter
Toxigenic strains of E coli
Parasites
I stopped using s
AREDS2 eye vitamins. Seems to be helping.
Only other thing I can think of is some horrible side effect of having had Covid or the vaccine
Best of luck figuring it and finding a resolution
@cjval52 & chronisgirlie92: Neuroendocrine cancer small intestine with metastases in liver caused the digestive symptoms. Many drs pointed to Chrones, Irritable bowel, etc erroneously!
Diagnosis biopsy from exploratory endoscopic procedure gave the Pathologist what he needed plus I had 2nd opinion by another Pathologist. Very slow growing as a rule - just need monthly shot & surveillance from NET Oncologist; but if progression there are many effective treatments. It can be like a chronic disease - not the cancer we all are afraid of. Initial treatment stopped the digestive issues within a month - without it I would still be in the bathroom or getting more tests! The GA PET scan tracts tumor growth and reveals exact location of tumors. The 24hr urine test was essential in specific dx. Many of my peers qualifies for surgery - removing the offending NET primary tumor tissue.
I am only sharing my tale because I would hate for you to spend valuable time & money having test after test with no answers. My case is a rare form of cancer I admit, but if it could happen to me it can happen to you.
How recent was your colonoscopy?
Hi Chronicgirl,
Is your neuroendocrine tumor anything like a Carcinoid tumor? Many years ago I had a friend who had what she was told was a Carcinoid tumor and when I looked it up I think it was also called a neuroendocrine tumor.
She did very well for many years, kayaking with me and usually feeling pretty good.
I am just curious if you may have the same thing?
Margot
You said "I have tried pre/probiotics, digestive enzymes, antibiotics, oil or oregano, and various other dietician ordered supplements."
Did you try Creon? Have you been tested for EPI?
Hi. sorry to hear about your struggle. Here's a VERY long shot I hope you will read about: https://my.clevelandclinic.org/health/diseases/23392-hypochlorhydria I had come to a complete dead end after several years and stumbled across a post on this Mayo Clinic Connect that mentioned Betaine HCL. Curious, I looked it up and went down yet another rabbit hole of research. I fit the profile so well that I tried it, not exactly the recommended way of going about things, but the result was shocking: I can eat a full meal without any pain, gas, or bloating. After a couple of weeks, I'm becoming more convinced that this has been my problem. I wish one of 5 GI doctors had suggested investigating digestive juices. In a few months if the success continues, I will know the problem was low stomach acid. It was causing, undigested food, fermenting, probably malnutrition, symptoms of blockage, and attacks of severe pain along with the chronic pain and inability to eat. I wish you the best.
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I used to have the same diagnosis likely diverticulitis. IBS. colitis
When was your last colonoscopy? You should get another one.
IBS is a symptom not a diagnosis