So depressed

[Hg33]

Basically I stink, (like I’ve passed wind)I have been to numerous doctors private and NHS, they think I probably have IBS but, no diagnosis or help. I shower in the morning and evening by the time I get to work I notice people covering the faces, opening windows literally so embarrassing. Have cut out milk, I’m active, diet is pretty good, I have also tried enemas, checked for piles, blood work to see intolerances, with no real luck or answers. I asked doctor if I may have leaky gut and he just said it’s very rare and hard to treat! I avoid social activities and events more and more but its really starting to have an effect on my mental state. Please help!

[SagaciousSag]

I've had a very similar experience! I'm 15, and I've tried getting help to no avail. Doctor believed I'm too young to accurately describe my symptoms and asked my mum for my symptoms instead. Family doesn't believe me. Relationships and acquaintanceships at school have severely suffered, and I too evade any social events or interaction if I can help it, because I'm very self-conscious.

I've done a lot of research and found out that in my case, it is likely wind. I used to have painfully uncomfortable gas beforehand (which suddenly ended when this problem started) and because I've done the low-FODMAP diet, I've found that it worsens if I eat foods that trigger my symptoms (which are almost all of the groups), so it could be flatus/flatulence incontinence. Basically, it means there's a problem with your pelvic floor muscles that means wind can pass without sensation or warning, so you can't control it and just don't notice until the smell. I believe it's also one of the first stages of bowel incontinence, if that puts things into perspective.

Currently, I've been avoiding foods that worsen my symptoms, I've been taking probiotics and I've been taking digestive enzymes to digest fructans and galactans (the worst of my intolerances) whenever I eat foods that are high in them, and I've seen a great reduction in the smell! I once managed to go a week without anything! I would also recommend pelvic floor exercises to see if they work for you, as they seem to be for me. However, try working on the diet first, as I would begin burping gas that smelt like faeces if I couldn't pass it as wind after starting with pelvic floor exercises. I would also recommend trying to reduce stress/anxiety, because it'll get really bad for me right before a test or something similar.

Sorry for the word vomit, but I hope at least some of this helps!

[Hg33 in reply to SagaciousSag]

Thanks for your honest reply, it’s kind of nice to know I’m not the only one. I haven’t ever had the smell from my mouth as far as I’m aware. But yes literally don’t think or realise I’m passing wind and yet it’s obvious that the smell is there by the reactions I’m getting. I believe I’ve gone nose blind now where I have had it for so long. If I drank alcohol there’s a for sure a reaction, but apart from that hard to know all the triggers. I literally have a shower and half an hour later people still covering there faces.

[melichatte in reply to SagaciousSag]

Hey, Im from France and I ve had this issues for many years so I totally relate to the depressive symptoms/ isolation this condition can cause. For me, following a strict diet and fasting are what work best though it only reduce the intensity of the smell. When I eat "bad food" I have atrocious eggy/gutter burps and farts non stop. After +/- 2 days I get nose blind which makes me hella paranoid.

I think that stress is a major trigger as I m not gasy around my friends and family (according to them) and in calm environments.

I have recently done metabolic tests and apparently I have a SIBO / sulfur intolerance.

I have also done a microbiome analysis and found out I had a very unbalanced gut flora so I m hoping to see some results after this treatment.

I did an anorectal manometry and sphincter EMG but the doctors didn't find anything that could let them think I pass gas without realising it.

What kind of clinical tests have you guys tried so far? And which enzymes/ meds have helped you? Or not?

Also, what do you mean by gut incontinence?

I would be down to maybe create a support group with people who have the same symptoms where we could investigate about the potential cause of this disease, things that has worked/not work, what we could try and track each others results, give support when needed etc. I think it could be useful and make us feel less lonely in this battle x

[SagaciousSag in reply to melichatte]

Currently, I take digestive enzymes that contain lipase, protease and so on, as well as alpha-galactosidase, which really helps to digest complex carbohydrates or foods high in fructans/galactans. They feed bacteria in the gut, so if you have an overgrowth, it can worsen symptoms.

I'm negative for coeliac disease, and I'm undergoing registration for a new GP so when I'm fully registered, I'll book an appointment and ask about SIBO. I took Bio-Kult (2B probiotics in a range) and felt great, but I've actually started feeling worse on an increased amount of live cultures (25B per day), so I'm currently taking a break and I seem to be improving again.

By bowel incontinence, I mean you might start to pass liquid or solid stool without noticing, and it starts with farting or wind from what I've seen online.

Finally, that would be great! I'd love to be in some sort of support group. I'm new here, so I don't know if we can do that here or elsewhere.

[Nothingimpossible]

I think you should go back to your gp. If it's not food or medication intolerance you might have a infection in the gut or colon problems. Keep on until you get an answer . Wish you luck

[Hg33 in reply to Nothingimpossible]

Thanks for you support

[Catty1234]

Have you tried charcoal tablets ? They might help you x

[Hg33 in reply to Catty1234]

Thanks I did take them for a while, no noticeable difference but not really sure, it’s overwhelming the amount of different supplements and medications with no real solid answer

[Edgar77]

A dietician may be able to help. Never see a nutritionist they are trained to offer advice on healthy eating but not to treat the sick. A doc would very rarely refer you to them you have to go private and most of them seem to be init for the money.

[Hg33 in reply to Edgar77]

Thanks Edgar, I did see a nutritionist who put me on a low yeast diet, which was very strict along with some supplements. Felt healthy but no change in the smell, and pretty miserable

[winfong]

What are you taking for it? I've had good results with simethicone.

[Hg33]

I have tried something similar and also tried mebeverine. I have taken probiotics many times with no noticeable change

[Malis444]

Hi you should try something called body mint it’s quite pricey but it worked for me.

[Hg33 in reply to Malis444]

Thank you I will try anything at this point. Any recommendations on brands?