Intermittent fecal/sulfur breath odor

Posted by pbleonar @pbleonar, Jun 8, 2017

After scouring the web, I'm certain I'm not the only person with this problem, and not the only person who's been told they were imagining it. Anyway, the issue is I have intermittent odors when I talk (yes, I've been to the dentist 10+ times-- all say my oral hygiene is on point and xrays and inspections showed nothing). The only time it's practically non-existent is when I eat an unhealthily low-carb diet. Like others online, I've had CT scans, Barium swallows, endosocopy/colonoscopy, screening for parasites (getting one more from an IDS before crossing that off my list). All showed up negative. I tested positive for SIBO, but after researching that for the past 3 years, I'm certain SIBO is more of a symptom than a primary causal problem. Furthermore, even when I treated SIBO with heavy antibiotics, it did absolutely nothing for my breath-- and yes I was cleared of SIBO after a couple rounds of work. yet, the moment I eat carbs, I still get a "did someone just s*it themselves?" comment.

I guess what I'm getting at is I'm tired of doctors just saying it's IBS and SIBO and then proceeding to do zero investigating afterwards. I want to get down to the root cause of this, but most doctors are either too apathetic or too incompetent to do anything. Are there any researchers who specialize in studying and diagnosing hard to find problems in the GI tract? Between the 3 GI docs, 2 ENTs, 2 NDs and 1 IDS, I just can't take normal doctors anymore. I want my life back and I want a specific root cause so I can work on progressing from there.

Further notes: Diarrhea actually cleared up when I ate junk food and I had zero bloating, albeit the odor remained.

Xifaxan and neomycin did nothing for the odor, nor did the elemental diet. I actually think the elemental diet made the smell as bad or
worse than before.

*******Nitazoxanide********** worked wonders for the month I was on it. Solid stools even with foods that normally cause my ibs to flare up.
It's exactly the reason I felt there was more going on to everything than just SIBO and IBS.

Interested in more discussions like this? Go to the Digestive Health Support Group.

samclembeau | @samclembeau | Apr 18 4:46pm

Xifaxan is very very expensive. your doctor can send a prescription to a Canadian pharmacy and it will be a lot less.
Good luck. hope it resolves everything

casey101 | @casey101 | Apr 18 8:10pm

In reply to @kim1003 "Sure. I tested positive for Sibo a few years ago." + (show)

Hey! He ordered it. I was so scared but he said he recently got diagnosed with SIBO so this doctor was perfect! He's from the Plush Care app. He told me the Xifaxan was expensive and offered alternatives and gave me recipes that have worked for him. He said I looked like I wasn't satisfied so said he would send the prescription in, hope my insurance would accept it and told me he wanted to see me in 4 weeks. He said he wanted to try this and wanted me to take the probiotics and do the recipes he wrote in my summary. He also ordered blood work. This honestly couldn't have gone better. I got so much hope. I could tell he really cared and he listened to everything I was saying. I feel like my life just did a 180

casey101 | @casey101 | Apr 18 8:12pm

Ok guys! He ordered it. I was so scared but he said he recently got diagnosed with SIBO so this doctor was perfect! He's from the Plush Care app. He told me the Xifaxan was expensive and offered alternatives and gave me recipes that have worked for him. He said I looked like I wasn't satisfied so said he would send the prescription in, hope my insurance would accept it and told me he wanted to see me in 4 weeks. He said he wanted to try this and wanted me to take the probiotics and do the recipes he wrote in my summary. He also ordered blood work. This honestly couldn't have gone better. I got so much hope. I could tell he really cared and he listened to everything I was saying. I feel like my life just did a 180. I don't know if anyone prayed but it worked. If anyone wants updates let me know < 3

casey101 | @casey101 | Apr 18 8:19pm

In reply to @samclembeau "This sounds like a gut issue. Can you think of how your diet changed for those..." + (show)

If you want to talk about it lmk. I can give you things I changed in those 6 years. Maybe we can come up with a common denominator. The doctor I just talked to was from Plush Care. It's online. I was scared it was a scam but it's not. He listened and wrote the prescription in to my local Pharmacy. He said he also had SIBO so understood. He also gave me recipes he did that helped him. He wants me to do the antibiotic then take probiotics and do the recipes he wrote in my summary. Like I said if you want to email me/message me you can and ill send the summary statement.

casey101 | @casey101 | Apr 18 8:27pm

In reply to @samclembeau "Xifaxan is very very expensive. your doctor can send a prescription to a Canadian pharmacy and..." + (show)

Yes, I talked to the doctor and that's what he said. He prescribed it and put the prescription as open to alternatives. At this point I'll pay out of pocket. My life has completely fallen apart but I have hope. And thanks! If I can't find a way to pay for it I'll make another appointment and see if he can do this < 3

casey101 | @casey101 | Apr 18 10:38pm

As I'm waiting for my medicine and starting this journey again I figured I'd give my own experience. It's been hell and embarrasing but I don't want anyone to feel alone. I got rid of it for 6 years so have hope to do it again. I've never wrote this out so it's hard reliving everything.

But starting at 12 I started noticing people commenting on a smell. I was in middle school and remembered feeling so scared and alone. It would smell up a whole class room, people and teachers would comment. I missed so many events and would remember crying and trying everything I could not to go to school. I felt like a burden and felt like I was causing anger and disappointment to everyone around me. My dad worked at the school as a custodian so it was worst and embarrassing with him seeing this. I remember he would yell at me to see if I brushed my teeth and always looked so ashamed of me. I have a twin brother that also was in the same grade that witnessed everything. The whole thing was humiliating. On top of this I was also obese and developed social anxiety.

I remember getting up at 3am to take a bath for hours every morning. I tried baking soda, laundry detergent, dawn soap, bleach, new shoes, everything. I was just a kid so didn't know any better. I tried to lose weight so ate pretty much everything that made it worst not knowing. I remember exercising for hours, just literally trying everything.

Fast forward to high-school and it was still bad. No one wanting to sit next to me, all that stuff until maybe 18. I made changes and somewhere from there to 24 it was cleared. At 18 the changes I can think of are getting on birth control, took antibiotics for a UTI, got prescribed Vyvanse, ate every 2 hours, lost the weight, etc. There's other things but maybe if someone messages me something we can find a common denominator.

Fast forward to when it started coming back. I was 24. I got covid so maybe that changed it. I also gained a lot of weight but also gained the weight back during the time period it was gone so there's more to it.

I remember whenever I got close to someone it would always smell like burnt rubber or idk. It got to the point at 25 I quit my job for a year. When looking for another one I got one at Lowes and damn it was humiliating. I liked it at first and had so much hope until someone said it smelled like burnt rubber and someone whispered to another coworker it was me. Thinking I didn't hear. That night I did everything possible to make it go away. I always had gum, perfume, hand sanitizer there, everything. The next day I had hope going in. The manager brought a fan up to the front desk, put the febreeze things in you would put in a car fan and said "you might need this". They looked at me and laughed. They also made other comments I don't wanna repeat and I was so mortified and humiliated. I told the coworker involved that I was feeling sick. She was quick to say I could go home. They were trying to run me out. I grabbed my stuff trying not to cry before I made it to the truck. When I did I broke down in tears. My parents were happy I just got this job and I they knew I still had 4 hours left. So those 4 hours I cried not wanting to tell them I quit. So I drove around crying wanting to die, thinking about crashing. Eventually I told them and got a new job at Rite Aid a few months later.
I've been here 4 months. My parents still mentioned a sewer smell. And people have made a few comments at work with the Febreeze up front. I just feel humiliated and I'm so scared I'll get fired.

But now I'm on this journey again. I do have HOPE though for all of us because like I said it was completely gone for 6 years. 100%. And it's been as bad as filling rooms. So I definitely have what you guys are describing.

I didnt think this post would be this long. But that's my whole life experience with it. I understand the defeat, humiliation, and embarrassment. But I wanna let you know your not alone. If we can get a group chat going or something I KNOW we can figure this out < 3

kim1003 | @kim1003 | Apr 19 8:56am

In reply to @casey101 "Hey! He ordered it. I was so scared but he said he recently got diagnosed with..." + (show)

That’s great! So glad you found someone to help you.

drdjoyce | @drdjoyce | Apr 19 11:14am

Have you ever had C-diff? I found, when C-diff positive, I occassionally had that problem myself. I have, however, smelled that type of breath on someone before they have eaten anything for the day. They did not actively have C-diff, but could be a carrier.