For a majority of my (30F) adult life, I've dealt with bb off and on with former partners telling me at times my breath would stink. However, the past two years the bb has been chronic. On mild days it would be a faint sulfur smell on my breath. On bad days, to my horror, it was a fecal odor. The worst part being was when I would be nose blind to it and only became aware it was bad when I noticed colleagues' or acquaintances' reactions when I spoke.
I did a lot to try and manage the bb. From eating a very restrictive diet (and losing 20lbs from diet alone in less than a year - yeah, it wasn't great because it resulted in significant hair loss), trying a crap ton of supplements...the list goes on. After about a year of trying to manage it through diet and supplements I knew I needed professional help otherwise I would become extremely malnourished with potential health issues down the road.
Additionally, I've been dealing with GI issues, also, for a majority of my adult life and the bad breath was the symptom that pushed me over the edge. GI issues were: diarrhea, constipation, bloating, abdominal distension, excessive gas. Because of the fecal odor on my breath I was certain I had hydrogen sulfide SIBO. I pushed this with the GI doctors and they were willing to get me tested for SIBO. I completed a take home test and it came back negative. I couldn't believe it because I had no idea what else could be causing the horrid smell. So I took a second take home test (I believe there are only 2 on the market). Again, negative. My hypothesis that H2S SIBO was the root cause proved incorrect. The GI specialist that actually helped me (I saw 3 different ones over the course of about a year), started having me get blood work done, etc. She was willing to dig and I am so appreciative of her for that.
There were 2 major tests she ordered for me as well as an x-ray of my abdomen. A gastroparesis test and a HIDA scan. Fortunately, the gastroparesis test and x-ray came back normal. The HIDA scan showed an >80% EF activity of my gallbladder as well as bile reflux into my stomach. This was promising.
Now I should add, I advocated to get my gallbladder checked because from some reddit scrolling I found a post where someone shared that after getting their gallbladder removed the fecal odor on their breath went away. So I formed a new hypothesis that perhaps my gallbladder was the issue. A hyperactive gallbladder can cause the GI symptoms I was experiencing.
Now back to the HIDA scan. Once those results came in, the GI was willing to prescribe me carafate because apparently that helps those with hyperactive gallbladders. She wanted me to try the carafate and if I still wanted to be referred to a surgeon, she would put in the referral. After about a few days of drinking the carafate, I knew I didn't want to have to drink that concoction my entire life and requested the cholecystectomy referral.
The consultation with the surgeon went well. I may or may not have exaggerated the pain I felt in my gallbladder region whenever I would eat moderately greasy food. (The pain seemed to be the factor contingent on him agreeing to do the removal.) He did state that because the HIDA scan showed bile reflux into my stomach, that reflected a "noncompetent (pyloric) sphincter". I reassured him that I try to do diaphragmatic breathing as much as possible (as it's been shown to improve the functionality of the lower esophageal sphincter for acid reflex icydk).
Eventually the long-awaited surgery day came and you can imagine the joy I felt when I came to without that awful taste in the back of my throat. In the following recovery days I did not smell any bb. It felt like a weight was lifted off of my shoulders.
It's now been nearly two weeks since the surgery. I occasionally do catch a whiff of a slight sewage odor on my breath which I believe is a result of some bile refluxing into my stomach and mixing with the food digesting in my stomach. However, I have not lost hope. I hypothesize that if I can manage the incompetent pyloric sphincter with: small, frequent low-fat meals, diaphragmatic breathing/consistent meditation, routine stretching of the abdominal muscles, regular exercise and enough quality sleep the sphincter will heal and grow more "competent".
There's another variable that is relevant. I started Accutane earlier this year and about 2 months into the regimen I noticed a different funky smell on my breath. (This was prior to the surgery.) As well as developing some acid reflux. Apparently Accutane can cause bb in some people(!) With some Accutane users sharing that using a biotene moisturizing spray helped with theirs.
For me, this Accutane bb wasn't a sulfur or fecal odor, it was like dragon breath. You know how when you're dehydrated and have a super dry mouth you get like a stale odor emanating from your mouth? Well it was that same stale odor but about to the power of 10. It was horrifyingly room-filling.
Again, the internet and what anecdotal stuff people share on it came to the rescue. I found some random bad breath forum and learned that apparently being immunodeficient can cause bb?? (Don't quote me on that) So someone mentioned taking a colostrum supplement (a source of immunoglobulins) as well as lactoferrin may remedy this form of bb.
I ordered a bovine colostrum powder off of Amazon because I was desperate and added a (miniscule) scoop to my dinner. By morning, the severity was noticeably reduced. So I took another scoop with my breakfast and thank heavens by like mid-day the stale bb was barely noticeable.
As I am still taking Accutane, and it continues to dry out my skin and mucous membranes, the dry mouth persists. I also use therabreath dry mouth mouthwash (which contains lactoferrin!) morning and night and it helps.
I have another hypothesis as to why my gallbladder became hyperactive..partly due to genetics, largely due to a tendency to binge eat not so healthy foods (in my past)...
Anyway, my bb journey isn't over just yet. However, I'm optimistic that I will get there. Hopefully this post may help someone at the very least. Maybe it will give someone a bit of hope that things can get better. PLEASE KEEP ADVOCATING FOR YOURSELF AND DON'T GIVE UP.
TL;DR: I never had H2S SIBO, instead a hyperactive gallbladder. The hyperactive gallbladder was refluxing into my stomach which I believe was the source of the fecal/sewage/sulfur odor bb (the bile mixing with the food digesting in my stomach = awful odor). Upon getting my gallbladder removed, the fecal odor was gone. I still occasionally get whiffs of mild sewage smell on my breath which I believe is due to my pyloric sphincter not functioning fully. I intend to manage it and try to help it repair through diet, etc.
And the stale odor bb originating from Accutane is managed with colostrum supplement and dry mouth mouthwash & spray.