Irritable Bowel Syndrome and Digestive Health Support Forum banner
1 - 4 of 4 Posts

·
Registered
Joined
·
15 Posts
Discussion Starter · #1 ·
Hi, new here, Ive seen quite a few posts here which are a carbon copy of my issues.

Id really appreciate it if anyone with similar would reply, this will help me when next visiting my GP (Ill be printing the thread out and taking along with me)

1. I cannot smell anything but since I started working in offices 15 years ago Ive received very unsubtle and unrequested feedback from others regarding fecal smell

2. This has gotten worse with every year to the point it is now really really severe and Ive now had to give up work

3. My close family and girlfriend cant smell anything which suggests to me in a safe environment this is less of an issue

4. What I suffer from is not wind or flatulence in the usual sense (I get enough of that to know the difference)

5. When my LG is bad I can feel heat come from the anus, I can feel it on my legs when wearing trousers

6. Every doctor and colorectal medical professional I have seen has dismissed what I am saying (apparently people are winding me up, but I must say I havent found 15 years of bullying and harassment terribly amusing)

7. My LG is far worse when sitting down (especially for long periods)

8. My LG is often very bad after going to the toilet with a complete evacuation... almost like emptying is a bad thing. Historically I was diagnosed with Anismus and struggled to go, but these days Im going 3 times a day usually

9. Im wondering how much if this is now psychological due to 15 years down the rabbit hole of insults, harassment etc. Of course there is some element of paranoia that manifests from this, but it doesnt mean the problem isnt real!

10. Ive tried everything from biofeedback to VSL-3, nothing works so far

Please could anyone who is or has suffered from similar please reply on this thread - it would be much appreciated (maybe say out of the 10 points how many were applicable to you)

To everyone else in the same boat, I feel your pain, chin up :)
 

·
Registered
Joined
·
15 Posts
Discussion Starter · #6 ·
I've had a few Stella's so I'm a bit cruder than usual... no fucking offence intended mother fuckers!!

Thanks to everyone who has replied, as I read in another post I really wonder how many people visit this forum and post their symptoms and then vanish, because as everyone knows we do not get taken seriously by the medical world. And how many people with similar issues don't find this forum and think it's just them???? Hundreds since this specific forum section was created? Thousands????

I know what you're going through bells, my life is one repeating cycle of get a job, take the abuse, implode and quit when I can't take any more, recharge when I have no job, then get another job and repeat. Use drugs and alcohol to cope whilst employed. This is no way to live. Unfortunately I don't have any obvious skills that I can use to take the self employment route. I'm thinking of retraining but at 37 that's not straight forward.

I really do sympathise with everyone else on this forum, I've thought about suicide, eternal oblivion and unconciousness seems infinitely better than the hell of living with LG - but I cannot do that to the good people in my life.

Obviously (from another thread) a fair few people have considered colostomy, me too, I'd easily swap an arm, leg, foot or hand to be free of LG and be able to earn a respectable living without the constant psychological agony of this condition. That we have a an unrecognised condition and get absolutely bagged by cunts at work, school, college etc. is something that needs to change - this is worse than any other disability I've ever heard of because we get treated like people with leporasy - and no disrespect to them, who am I to judge? And who has the balls to be the first to go to a mainstream media outlet with these issues in an attempt to gain some recognition for the condition. Not sure that's me.

What I do know is that I genuinely believe it would help our common cause if everyone who has LG related issues and posts here doesn't disappear and we unite to force the medical world to take us seriously instead of saying we have IBS or a mental problem (FFS).

I wouldn't mind if this whole nightmare was a fucking psychological flaw... so cure me then if that's the case... I'm open minded to all and any psychological treatment, but as others on the forum will know, no one (medical professional or not) takes us seriously when we try and explain what LG is...the huge barrier to having the balls to even tell a family member (never mind a doctor) about this condition is holding us all back.

I will try and take some time and read posts on this forum in depth and try and produce some kind of yes no questionnaire regarding symptoms. I don't give a fuck about being some forum hero, I just think if there are enough of us with this problem, let's be willing to go on the record, meet, and force the medical community to recognise this condition and give it a name - and please god let it not be "leaky gas". As much as I appreciate straight talking I don't want to tell anyone I have a condition called "leaky gas". This bullshit name isn't doing any of us any favours.

I copied and pasted because you and I have very similar LG.
1. I cannot smell feces, but I can smell food. Whatever I ate comes through and the feces part doesnt get picked up by my nose bc Im use to it. There has been periods where I filled up an entire cathedral ceiling courtroom with FBO, dont know how thats even possible since I shower sometimes 3 times a day.
2. This has also gotten worse for me over the last 10 years. Has normal jobs and had to quit them all bc of harassment and couldnt be around ppl. Now self employed, not around ppl too often and the ones I am around is small. They either cant smell anything or dont care (rare).
3. I live alone now, but when I lived with my parents/siblings they couldnt and could. It was off and on type of thing, majority being couldnt. Ive had girlfriends in the past, some could and some couldnt. It also wasnt as bad as it is now. Havent had a relationship since 2013-14.
4. What I suffer from is not wind or flatulence, its not that I cant control my flatulence; its that I have none. There no grumbles or pops or any noise of any kind from my stomach. No burps either, which is also gas. How it continues to produce smell for 24/7 is a straight up mystery. If its gas, its absoutley stunning that my body can continuously make it 24/7 all year long without a break.
5. When Im out in public my anus gets warmer and starts to sweat. The more nervous/anxious, the warmer and more sweat which contributes to the smell. I also get these cold sweats too and flushed face. I try not to sit for long periods of time, standing and running most of the day. Also feel bubbles escaping when I sit coming from my anus.
6. Ive only been to 3 docs, including my PCP who Ive been seeing since I was a child. He doesnt say anything, but his face says it all. GI and colorectal doc both politely said theres nothing wrong with me and its in my head. Has dissuaded me from making further inquisitions, but thats changed as Im in the process of getting a referral from my PCP to see a proctologist. Armed with knowledge off this site from users, hopefully this gives me an upper hand in acquiring a diagonai.
7. My LG is far worse all the time, I cant notice a difference except being in public places around ppl, indoors. Lines at stores or waiting rooms somehow exacerbate my FBO.
8. My LG is often very bad after going to the toilet with a complete evacuation. Instead of feces mixed with food, its fresh feces. Ill even use a small enema to make sure everything is out and it still smells like fresh sewage. If I have an incomplete BM or just cant go, the smell seems to not be intense and mixed with whatever I ate earlier. This has lead me to a diet with supplements to replenish vitamins/proteins Im not getting daily.
9. Im sure theres a huge psychological impact this has had on me from harassment and subtle social actions by people. Had ppl talk in other languages as Im standing in front of them, ppl at previous jobs say do you smell that? to other ppl as Im standing right there. Making comments on the smell itself saying it smells like diarrhea dripping down his leg while Im in hearing distance of them. Even when I do finally get a hold on this, not only will I have to see a psychiatrist, but probably have a hard time getting intimate or even trusting another person. Ill also open windows in cares, always wonder if I smell, always watching ppls reactions while Im around them.
10. Ive tried a lot of non invasive (surgical) procedures, a lot from this site and other sites, users in this site, studies/books, etc. Im hoping once I get into a proctologist, it will open up some new doors to try and fight this. Other than that, its basically a management only situation for me. Diet, exercise, stay positive is how Im taking it, with exercise taking the top step.
My theory is long term constipation has knock out my feeling of having a BM and made my sphincter/pelvis muscles extremely weak. This leads to BMs not completely evacuated which basically sit and stew inside of me causing an odor to last 24/7 all year long. Ive giving up on the theory about gas leaking bc I dont gave gas and its impossible for our bodies to produce that much gas/day for years without stopping. The only thing that could do that is a nuclear power plant and theres nothing radioactive inside me, afaik. Now why it smells worse after a complete BM, I have no idea bc according to my theory, there should be no smell after that, but there is.
 

·
Registered
Joined
·
15 Posts
Discussion Starter · #10 ·
I'm not trying to put you down, I'm just saying you're not defined by medical problems, that isn't your identity. I just find it a bit defeatist is all, enough people mock us without mocking ourselves, it's not a personal hygiene issue, it's a medical issue that the medical world cannot be bothered to investigate...

Sorry my name offends you, its all I could think of at the moment. My username is different on discord. Im in the same boat as everyone else here. Sometimes its nice to sit back and laugh at little bit instead of being would so tight. A lot of us suffer from depression and anxiety too, so its nice to know theres a judge free forum that lets us all express ourselves equally without criticizing or demoralizing one another.
 

·
Registered
Joined
·
15 Posts
Discussion Starter · #12 ·
I hear you and I am NOT putting you down in any way, we have the same problem.

I've just quit a well paid job of 9 years because of "LG", I'm trying to convince medical professionals I've been dealing with for over a year to understand that LG is real, it's unbelievably frustrating because I shouldn't have to explain but most gastros have never heard of LG because people are afraid to say they have this problem.

All I want from a gastro / colorectal specialist is to listen objectively... the ones I am dealing with now are either pretending not to have heard of it or have legitimately never been pushed on the subject (which is presumably due to embarrassment)

People on this forum need to stop pretending they are doctors and instead meet up and find a way to convince the medical establishment that this is real

I'm willing to meet you and everyone else in this forum... just stop the self diagnosis, and instead let's make a collective case that the medical community cannot ignore.

I came here recently and posted my issues... if everyone just posts their issues and fucks off afterwards or lurks, how is that helpful!

@ummwhat I edited a post above after reading your post. Dont want to waste space.
 
1 - 4 of 4 Posts
Top