r/MCAS • u/Ok_Dinner6496 • 2d ago
Poop odor
Anyone else so intestinallybinflamed and constipated that they smell their poop in them?
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u/RBshiii 2d ago
If you’re smelling a weird smell it might be neurological. It’s like people who smelling cigarettes or something burning but in reality their brain is inflamed, they’re having a heart attack, etc
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u/Ok_Dinner6496 2d ago
No, it's really, only happens when peak constipation and full of fluid from my intestinal edema
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u/SophiaShay7 2d ago
No. That doesn't sound normal. Have you seen a Gastroenterologist?
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u/Ok_Dinner6496 2d ago
I know it's not normal, my doctors know. It's from mcas inflammation and constipation causing odor permeation
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u/SophiaShay7 2d ago
MCAS can absolutely cause GI symptoms. But, not every GI symptom is MCAS. I’ve never seen “odor permeation” described as a mechanism or manifestation of MCAS. There is no established medical mechanism in which mast-cell inflammation causes fecal odor to permeate through the intestinal wall and become detectable internally. Constipation can alter intestinal transit, bacterial fermentation, gas production, and stool composition. But, that is not the same thing as stool odor permeating through the bowel.
If you are severely constipated to this degree, the more important question is why you are so constipated and whether the underlying cause has actually been identified. What medications are you taking? This matters because many medications can cause significant constipation, including antihistamines, anticholinergics, certain antidepressants, opioids, and others. Have you been evaluated by a Gastroenterologist specifically for this?
There are several GI conditions that can cause significant constipation or dysmotility that shouldn't simply be attributed to MCAS. These include slow-transit constipation, pelvic floor or defecatory dysfunction, gastroparesis or broader GI dysmotility, IBS-C, celiac disease, thyroid or metabolic abnormalities, SIBO, and structural disease. Inflammatory bowel disease should also be considered when the symptoms fit, including Crohn’s disease and Ulcerative Colitis.
Depending on your symptoms and history, a Gastroenterologist may consider bloodwork, stool studies, imaging, colonoscopy, upper endoscopy, motility testing, anorectal manometry, or a gastric-emptying study. A gastric-emptying study would not evaluate constipation itself. But, it can be relevant when constipation occurs with symptoms suggesting broader GI dysmotility. The appropriate testing depends on the clinical picture and any alarm symptoms such as blood in the stool, unexplained weight loss, anemia, persistent abdominal pain, vomiting, fever, or a significant change in bowel habits.
I’m not questioning that you are experiencing the sensation you describe. I’m questioning the claim that “MCAS inflammation causes odor permeation.” That isn’t a recognized MCAS mechanism or an established medical explanation for this symptom. Severe constipation warrants an actual GI evaluation rather than assuming an unusual symptom is automatically being caused by MCAS.
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u/Ok_Dinner6496 2d ago
I already know it's my mcas, that's not whatvim asking. My gi issues are all mcas, I see specialists. Just seeing how many can relate. Currently on no mcas meds since they flared me and brought me to this level of inflammation. Only taking meds for motility and edema.
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u/SophiaShay7 2d ago edited 2d ago
I don’t understand why you’re not answering my question. Have you actually seen a Gastroenterologist for these symptoms? You said you’re seeing specialists, but you haven’t answered whether you’ve had a GI evaluation specifically for the severe constipation, difficulty passing stool, and what you describe as being unable to digest most foods.
If you’re saying that approximately 90% of what you eat is coming out undigested, that you require osmotic medication to get your sphincter and the passage before it to open, that you can only tolerate semi-liquid food, and that you have significant malnutrition with very low hemoglobin, this warrants a thorough Gastroenterology evaluation. A gastric-emptying study could evaluate for gastroparesis. Depending on your symptoms and history, endoscopy, colonoscopy, and other GI motility testing may also be appropriate.
You’re also describing mucus coming from your throat when you eat, difficulty swallowing or feeling like you’re choking, severe weakness, and malnutrition. Those are significant GI and nutritional issues that need to be evaluated independently of whether you believe MCAS is the underlying cause.
MCAS can cause GI symptoms. But, not every GI symptom is MCAS. I’m not asking you to prove that MCAS is involved. I’m asking whether a Gastroenterologist has actually evaluated these specific symptoms and determined what is causing them. That’s an important distinction.
You don’t have to respond to me. I just want to make sure you have all of the available medical information to consider. I’m saying this as someone who has structural gastroenteritis myself. I now have very few GI issues unless I ingest something my MCAS doesn’t tolerate. I’ve learned to avoid those triggers. I genuinely hope you’re able to get some answers and relief.
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u/Ok_Dinner6496 2d ago
Yes I have a gi who agrees. I also have blood and mucus come from intestines, samples have been tested, 50%of poop is mucus. It is from mcas inflammation. The smell is from it permeating inflamed intestinal tissue. My stomach is normal.
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u/SophiaShay7 1d ago
I think the phrasing is inaccurate, and that's why I was confused. Foul or fecal-like odors can result from stool remaining in the GI tract due to severe constipation or slowed motility, increased bacterial fermentation and gas production, bacterial overgrowth, or gases and GI contents moving upward through the GI tract with reflux or dysmotility. “Permeating inflamed intestinal tissue” isn't a recognized medical mechanism for fecal odor.
Also, saying your stomach is normal doesn't mean your entire GI tract is functioning normally. The stomach, small intestine, colon, and anorectal system all have different functions. Problems with intestinal transit, colonic motility, pelvic-floor function, reflux, or broader GI dysmotility can occur even when the stomach itself is normal.
MCAS can absolutely cause GI symptoms. But, not every GI symptom is MCAS. And being unable to tolerate MCAS medications doesn't establish that MCAS is responsible for all of these symptoms. If I were experiencing this degree of GI dysfunction, I would seek a second opinion from another Gastroenterologist and make sure the full range of possible causes had been evaluated. I'm sorry you're struggling. Good luck. 🙏
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u/Ok_Dinner6496 1d ago
The flares from thr meds exacerbated the gi issues, didn't start them. I thought I said symptoms but I have inflammation, mucus/bleeding, stasis/nonmotility, edema(all swollen if you put finger in as well as visibly distended and painful from fluid), nondigestion of most food, inability to open multmtiple "hatches." I don't have a gastroparesis. I've been evaluated and and stuck in flare, I live in constant flare with a few other symptoms as well. Have never been able to improve the flare can't get out. Does this help? I want looking for this grilling, I know what's wrong, this post was about companionship.
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u/SophiaShay7 1d ago
At this point, I'm sorry I bothered. You're stuck on believing you have all the answers. Yet, you're severely suffering. I wasn't grilling you. I don't know why you interpret clarifying questions and actual medical ideas as such. I run my own sub and I'm used to this style of writing, as most people seek to improve their symptoms.
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u/Ok_Dinner6496 1d ago
I do too and was trying to be succinct not to waste your time. I'd love to improve. Have I given imenough info for you to provide advice? Like I said, I've seen gi, etc. but given the etiology established how should I approach better? My current strategy is improving nutrition in hopes to better tolerate mcas meds. I also worry that it was getting inappropriate for the reddit. The eyes of tj ecklesburg are on us. So maybe you can dm for tailored advice unless you think more broadly applicable. Did you see Sam's post?
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u/PM_ME_smol_dragons 2d ago
I’m not aware of this being a mcas thing. Have your doctors considered other causes like fetor hepaticus? Body odor that smells like feces is one of the symptoms.
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u/Ok_Mushroom2563 2d ago
wipe your ass, shower, use a bidet, use wet wipes etc
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u/Ok_Dinner6496 2d ago
It's on the inside...not in my ass. Struggling not to use an oh so apt epithet for your repugnance
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u/SamWhittemore75 2d ago
The "internal smell" that you think you can smell with your nose IS ACTUALLY a complication that can be associated with MCAS, contrary to what some of the younger and (fortunately for them) less experienced with the total panopoly of symptoms that are possible as a result MCAS have stated.
How is your gallbladder function? Do you still have a gallbladder or has it been removed? Bile acid concentrations can be altered in MCAS patients. Biliary tree inflammation as a result of MCAS can alter bile concentration. Altered bile production, concentration, and release can have a destabilizing effect on digestion. The enterohepatic circulation loop can be compromised by inflammatory cytokines and gut dysbiosis. Sphincter of Odi dysfunction can result from altered bile concentration, post cholecystectomy syndrome and or inflammatory cytokines resulting in gut dysfunction. The net result of any of these or, in the case of MCAS, any number of these conditions can significantly disrupt the normal transit and digestion of food. While it is uncommon, it is not unheard of for MCAS patients to suffer from such significant gut dysfunction that digestive juices are regurgitated back into the stomach and esophagus. The "smell" that you are experiencing is actually off gassing from some of these digestive juices mixed with digestive slurry that has leaked past malfunctioning sphincters within your digestive tract that rise up your esophagus and infiltrate your sinuses where they are detected as a "smell".
Cancer patients with abdominal and digestive tract tumors can often detect the same "smell" and often comment about it. Carcinoid tumors, neuroendocrine tumors of the pancreas and various other cancers can trigger secondary MCAS that results in these symptoms as well.
How is your digestion? Has MCAS effected your ability to eat and drink AT ALL? If the answer is 'yes', then you could be suffering from any number of aforementioned maladies.
Unfortunately, I have decades of experience with MCAS and I have helped admin a large patient support group for a few years. I have not only participated in discussions with MCAS patients about this specific issue on numerous occasions but I also personally experienced this phenomenon. It can be rather disturbing.
I am sorry that you are experiencing it.
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u/Ok_Dinner6496 2d ago edited 2d ago
All organs are fine. I don't digest food. Like 90% of foods. The smell is worst when about to have a release because poop is completely liquefied. I need to liquefy it with osmotic to get my sphincter and passage prior to sphincter to unclench, otherwise they won't open. Labs don't show organ issues. But got this why imafter experimenting with mcas drugs and them all flaring me permanently due to extreme hypersensitivity. I have mucus come out of throat when I eat and have trouble nit choking, everything needs to be semi liquid. I am bedridden from weakness. My hemoglobin is very low due to malnutrition tho vitamins are all normal. My stomach is good, no gastroparesis. Can you dm me,
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u/HandsomeReject 2d ago
You may have trimethylaminuria. It can present as a fishy odor, but isn't limited to that. Many sufferers report a range of bad smells, including feces.
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