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Do you think doctors genuinely can't smell us?


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#1 lgsuffererstill

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Posted 01 August 2019 - 02:22 PM

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Every story I come across people always mention that family members and doctors can never smell us. Do you think they're being honest with us? 

 

It's driving me a bit mad. Asked at least a dozen doctors (and some of the nurses) and all of them swear up and down they can't detect any bad odors from me. But then I'll get reactions later that same day. It's like who can we trust to be honest with us at this point?

 

Curious to hear everyone else's thoughts on this



#2 thickthighs1

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Posted 03 August 2019 - 07:29 PM

I went to the Dr the other day. I told her about my IBS issues including gas. I did mention the leaky gas but I didnt mention TAMU.
Shes going to have me take the SIBO test after the 23.
We had a long visit because that was the first visit and shes very thorough.
I believe she did smell something because she wiped her nose a couple times.
Shes committed to help me get rid of the stink.I am so grateful for that. She has even given me a medical note for work, so I can take time off, to get this taken care of

#3 lgsuffererstill

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Posted 28 August 2019 - 11:34 PM

Hey how did your appointment go? Glad your doctor was able to detect it btw, every doctor I see looks at me like I'm crazy. I'll step out of their office and immediately be hit with reactions. 



#4 nicolesinformaton

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Posted 11 October 2019 - 04:01 PM

I can offer some insight here, but it might not apply to all. I have been working with my doctors on why I feel the sensation of gas release when it is not happening. (Confirmed by touching my stomach to feel gas movement, while having their finger in my rectum). After years of struggling with IB, SIBO, or a traumatic experience like stomach flu/bad case of constipation, the muscles and brain started to rewire the sensations into sensing the release of gas. Simply put it stemmed from trauma when I released gas before and was scared to have it happen again. However, in my case the movement of air pressure around the stomach and movement of gas in the lower abdominal area gave me the sensation I am releasing gas. Interestingly my muscles were actually tightening subconsciously when I felt that air movement (or release of gas feeling). We tested this further by using a biofeedback machine and anal sensor to see how my brain responded to certain words, tones of voice, and other variables. Retraining with neuro tagging so that the brain learns to remap the correct nerve sensations is difficult. It is also easier to tighten and strengthen muscles than it is to relax. Recoordination is especially difficult without being able to use your eyes to retag correxr nerve sensations, biofeedback helps with this.

As for why family cannot smell it, it is like going nose blind they can get used to it. I cannot smell myself most of the time, but sometimes I can. That is because most of the time it is not gas releasing, it just feels like it is because my brain rewired the sensations wrong especially after a surgical procedure. Doctors can not smell it either because I was not actually releasing the gas, they could feel the movement down to my lower abdomen, but my muscles actually tightened in the anal region which felt to me like a release (something that has to be remapped). As for why strangers react, mostly it is paranoia on our part since many people wipe their nose through that day, sometimes it can be us but the smell is so faint that only one person can actually smell it while the rest of the people do not. Through lots of investigation for me the smell can be so faint one person can smell it and confirm it is me, but the rest of the people can not smell it because it is a light sent. Obviously if there is poop waiting to come out or the type of stool (Bristol scale) plus diet, or other health issues the severity of the smell can vary greatly. The smell can also be extremely bad to clear a room and travel far which is a bacteria component where poop and gas generally get their smell from. Obviously other components apply, but the same is generally the bacteria consuming the poop and the byproducts as a result.

Treatments with antibiotics can kill all the bacteria which will reduce the odors and gas, thus providing temporary relief. Some will respond and be cured. However others that cannot address the deeper underlying reason of why SIBO occurs which will cause the bacteria repopulate and the issue will return again most likely. Not all sufferers leaking gas sufferers have SIBO and not all SIBO patients have leaking gas.

If you are seeing a certified and trained pelvic floor therapist in womans health, ask them to feel the gas around your stomach. It can be pushed around. Have them insert a finger into your anal canal, while they push air around down to your lower abdomen. They will be able to confirm to you if they feel the air release and other sensations. Or what your muscles are doing and if your brain is retrieving the correct information. I could not do this myself because my nerves and brain were not sending the correct neurological messages. This is just my personal case, everyone is different and will need to consult with their physician to address their unique issues.

#5 SilverFox123

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Posted 12 October 2019 - 10:17 AM

Hey nicolesinformation did you manage to cure yourself?

#6 LetItRip

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Posted 13 October 2019 - 01:07 PM

Hey this is a very interesting take. I dont like to talk too much about my symtoms so I dont get too down on myself but I know for sure the odour is bad enough that people avoid sitting with me or travelling with me. How did you get a nurse to agree to do that kind of investigation? All the Drs I deal with just want to put me on meds. Am I better to try a naturopath Dr? Im in college & broke so paying for expensive procedures is an issue if they end up going no where. Are you finding the remapping is working? How exactly does this remapping occur?

#7 nicolesinformaton

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Posted 21 October 2019 - 05:39 PM

Hey nicolesinformation did you manage to cure yourself?

Cure would not be the term used by professionals treating this issue if they were knowledgeable and well trained. In my case Im dealing with recoordination and muscle relaxation issues. Not everyone will recover to 100% or return normal functionality. However, some may even recover better than they were before with strength or functionality etc. Think of a stroke victim that has to learn how to reuse their muscles and recoordinate. The progress and results are dependent upon the individual and other variables. SIBO is another component that we all do not have either, this issue causes excessive gas in my stomach for me and largely confuses my nerves/sensations. There are ways to address it through diet, medication, retraining exercises, biofeedback, or other interventions.

As for remapping and having professional assess your situation properly, I would highly suggest working with a professional specializing physical therapy and womens health. Nurses and doctors are not usually trained the way a physical therapist/pelvic floor therapist is trained to assess the body and how to treat it especially with muscle and tissue. Depending on their schooling they are taught to use biofeedback machines on themselves during educational training, this adds a deeper level of their understanding into what exactly your muscles are doing/not doing. Something I would not recommend to other individuals, but I personally use a device called perfit which comes with an app. The app actually shows a simpler version of Real-time biofeedback data and helps the user to coordinate, relax, and tighten muscles. This device is targeted towards females, so if you are male I would consult with a physician because it might cause more damage than help since we have differing anatomical features. I am not a professional so I can not recommend anything other than seeking guidance from a professional.

For my case, I have improvement. The metrics I use for improvement are being able to RELAX my muscles so that I can go to the bathroom and completely evacuate. Coordination is better so that I am no longer tensing my rectal or pelvic muscles, but I can focus force and strength in my core. Not consuming anymore medication was a big step! My sensations and remapping are still a work in progress. If remapping is needed, the results will be a variable that individuals will have different progress with. Damage, wounds, surgical intervention, and other factors can also contribute and influence the speed of progress.

Be weary of individuals that claim a cure or suggest devices, exercise routines, medication, or other supplements. It is better to invest into seeing a qualified professional rather attempting approaches that might make the situation detrimental or worse for your body. I was there once before, I understand. Good luck.

#8 Kenyanoelle

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Posted 18 November 2019 - 05:29 PM

People telling me i smell like ###### isnt paranoia, dont be a ######. Just because it might be for you doesnt mean it is for the rest of us. The last thing we need is someone in here trying to convince use that we are paranoid. Ppl are touching their nose for a reason, ppl are saying i smell like ###### for a reason. Speak for your own paranoia.
  • Wilwan likes this

#9 Moyes

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Posted 30 August 2020 - 01:33 PM

I hear you Kenya but not everyone has people actually tell them directly. Others have people drop hints or sarcastic remarks (recently had an uncle play a song children's song about it, getting my little cousins to join in for his amusement, never would or has said anything to my face of course) but health care professionals and close family deny any issue. Thus it can play into ideas of paranoia for some and hyper vigilance for others.

Having someone tell you to your face rather than behind your back is both a curse (not sure theres as easy way to hear it but definitely some horiffic ones) and possibly a relief to those when others have not confirmed it or told them they are paranoid despite living with reactions of others.





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