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Hello all,

Well maybe I m a bit late to the party but I thought I might also compare and contrast to your symptoms Ummwhatnow :-

1. I get bad reactions all day everyday unfortunately but most of the time I can't smell myself at all. However I have now and again got the odd bad smell from myself, it could be fecal, garbage or a sort of burning odor quite often. I have gotten a fair amount of "ugh did you just fart?" comments down through the years so I m guessing I quite often have a flatulence smell though I can't detect that one myself at all.
I have an immense amount of luck in that I have a group of really nice colleagues at work who don't make too much of a fuss about how I smell. I

1. I get bad reactions all day everyday unfortunately but most of the time I can't smell myself at all. However I have now and again got the odd bad smell from myself, it could be fecal, garbage or a sort of burning odor quite often. I have gotten a fair amount of "ugh did you just fart?" comments down through the years so I m guessing I quite often have a flatulence smell though I can't detect that one myself at all.
I have an immense amount of luck in that I have a group of really nice colleagues at work who don't make too much of a fuss about how I smell considering how unpleasant it must be to be in my presence.

2. As you get older I think your digestive system isn't as robust so unfortunately our problem does seem to get worse with age. I have found that myself, foods which I used to be able to have and not cause too much of a problem now can be trigger foods for my lg to flare up. However one tip I can definitely give is that a few years ago I gave up red meat and most dairy products and that did lessen those nightmare days when my lg was totally out of control.

3. Unfortunately my family can smell me though I have seen a fair few posters on here saying like you their families can't. My girlfriend can't smell me for the very good reason I don't have one! Seriously though I am very happy for you that you have someone to share your life with. I have absolutely zero confidence with women seeing that smelling of [email protected] and fart as I do I probably wouldn't be any lady's idea of a dream date :)
Btw though my family can smell me I do agree with you that being in a safe environment does help a lot, no question the more stressed I am the more I smell.

4. Yes I'm the exact same. Like when I get normal flatulence and feel the need to pass gas I can hold it in when I need to. But all those times I mentioned where people would make comments like "who farted" I absolutely felt nothing at all, no sensation of passing gas or anything.

5. Sort of similar here too, I don't feel any heat from my legs but now and again I do feel a lot of heat down below (insert your own Johnny Cash/ring of fire joke here).

6. Yep doctors don't take our condition seriously at all. I guess it's such a freakishly rare condition we have they don't even realise it exists. I remember a sufferer on another forum tell me her father was a gp and he was totally at a loss on how to help her. One thing I did get diagnosed with was having small bacterial intestinal overgrowth (s.i.b.o.). I would bet a week's salary most of the people on here would get tested positive for it if they went for a test.

7. and 8. To be honest I would differ from you on these two. Interesting that you say it can get worse after a complete bowel evacuation, a few people on here have mentioned thats the one thing that reduces their odour. I'm glad though you are able to now go regularly. I have never had any problems with constipation thankfully but an awful lot of people on here complain of having it.

9. Unfortunately it's all too real for me. I get small scale reactions practically everyday and sadly have some really nightmare encounters with people down through the years where they've made it clear they want me out of their presence NOW. Not to mention all the ridicule that has been directed at me.
I totally agree with you that the psychological toll on us must be immense. Perhaps I might be paranoid at times. As I mentioned before I can never feel anything or usually smell anything so it's only by other reactions that I realise something is wrong. Consequently I m always on edge whenever I m in company, constantly worried I might be stinking the joint out and people are too polite to say anything. It might be there are times when I don't smell that bad but I have no way of knowing that. It's left me an incredibly anxious person as I m guessing you and nearly all lg sufferers are.

10. I ve tried a fair few things too including vsl but no luck so far. I did read a very interesting comment once where a sufferer was explaining that like us he tried a good few things to get rid of his odour condition all to no avail but when he started to do some of those things together in concert with each other he started to see progress.
I suppose one thing to keep in mind is that whatever we have it probably will take a few months minimum to toyally get rid of it. Beware anyone coming along promising a magic bullet solution, try this and hey presto everything will suddenly be ok.
If its a bacterial problem you have (I m pretty sure thats the case with me though I totally accept many other posters have identified some sort of anatomical problem as their culprit) its going to take a while alright to fix. I saw one doctor write that to change your bacterial make up through diet it would take a minimum of three months but it could take a year, the average being six months.
Vsl is a very good probiotic to take but another good one is a probiotic drink called symprove. Even the makers of symprove say though that you'd have to take it for three months at least to work.

I really admire your proactive can do attitude to this terrible condition Umm... , it's a great idea of yours that there should be more cooperation among posters here to see how we can make some progress on this. One thing if you don't mind me saying is that I really really do hope you don't go for a colostomy at least until you have exhausted every other possible cure first. Imagine having the trauma of undergoing a colostomy only to find your lg condition is still the same. Perhaps if it's a structural problem with your lower colon for example it may work but I really don't see it working if it's a bacterial problem, the odourous compounds they generate will get out some way, if not through your behind then through the pores on your skin or through your breath. Its such a pity there doesnt seem to be any medical research going on out there to provide us with answers :)
Hey, after a few years of booze, drugs and unemployment I'm back... ish... had to set up a new account due to email change :)

Thank you for your reply and support, Carl.

Interestingly, I've noted a couple of NHS links that seem to now acknowledge LG to some extent...



I made a formal complaint to the NHS Trust that was treating me, but it was rejected at Ombudsman / Parliamentary stage, presumably because it was anus-related

I can't say I have made any progress since my original posts, but since pandemic there are a lot more remote jobs which is a positive
 
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