[14664]

Hi to all,I only found this site at the start of the year and have read with interest about everyone's experience with LG. To say that I am relieved would be a huge understatement!! I thought that I was going crazy,as like many other people with LG, my family, close friends, etc claim that they can't smell anything. I have have had three colonoscopies since 2002. After the first colonoscopy I was diagnosed with Ulcerative Colitis and prescribed a heap of anti-inflammatory steroids. I got a second opinion in 2004 and was diagnosed with IBS. The last colonoscopy done at the start of the month showed nothing out of the ordinary and was told i still had IBS. Although it is difficult, I have managed to live with IBS, but what the ?$#! is the cause of this LG?!!!! This is killing me!! I am at a loss to explain it. I look at the posts on this and they go back 5 years or more and still no-one is any closer it seems to working out the cause.Like other people, my LG is worse when I am anxious or nervous, I take one of ther newest anti-depressants available (Lexapro 20mg x 1 daily) and this helps somewhat. I have tried liquid chlorophyll, Nullo, flaxseed, probiotics, and am currently waiting for Devrom to arrive, but from what I can gather I could have just thrown the money in the bin and it would have the same effect. My LG seems to be worse after heavy exercise or where I have really exerted myself physically in some way....any one else have this happen? If I am lacking sleep, then this also makes it worse.I am going to see my gastro on Monday and have printed some posts from the LG thread to show him. I had previously touched on the subject with him but was told that "everyone is entitled to a bit of gas."....What a joke!! These docs do not understand that this is crippling people's lives, forcing them into isolation, ruining relationships....etc, etc, etc.....poor me....what am I going to do?!!!.....lol...but i am serious....This time I am going to really rack his brain for anything he could suggest. I have also made an appointment with a colorectal surgeon for mid July to see what he says. Basically i wanted to ask the LG veterans out there what tests i should ask for from the Colorectal surgeon (eg anal monometry, defacography....if that's how u even spell it). Also if any LG people had any questions that they might like me to ask, then I might try to raise these with both the gastro as well as the colorectal surgeon. Just reply to this, and I'll do my best to get some answers for us!!Personally, I think the best and probably most practical remedy/option I have read about is the kegel exercise. I have been doing them for about 3 weeks now pretty religiously and think I have noticed some improvement of LG. I hope I don't cure myself before I see the colorectal surgeon though, i don't want him to think it's all in my head...lol...Anyone's thoughts, comments, advice appreciated.Thanks

 

[20322]

I think you have summed up the LG problem as well as any of us on here could. I am glad you have printed some of the posts to show your doctor. You are right about all the things you have tried, probably most of them were a waste of money. But I think those of us with the problem would pay any amount of money to be free of this.Please post back after you see your Doctor on Monday, I will be very interested in what he/she has to say. Most doctors have no idea what you are even talking about when you talk of LG.You have a good grasp of the problem and you express yourself very well. I hope you can be the one to help us all.Take care

 

[14664]

Hi Everyone,Hi Smelly, how are you today?! You get a personal hello coz you're the only one that replied to my post, so first of all I want to say thanks!!!

Not sure whether I said something wrong or all the other LG's out there didn't read my post or what......anyway...Well I went and saw my gastro today and basically it was a waste of time. I tried to explain to him the symptoms i have been experiencing and even showed him 5 pages of posts from the LG threads and he was pretty quick to dismiss what I was saying, or rather sidestep around the issue. After I explained myself, I showed him some of the posts. I drew particular attention to one of the posts by Tummyrumbles (i think??) which gives a really good definition of LG, and explains my symptoms probably better than I could myself. He looked as though he was reading it but i wasn't sure. When I asked him about possible sphincter muscle damage due to straining (IBS-C for last 6 months, but prior to that IBS-D), he asked me whether I had been leaking any stool or faeces or anything. I told him that I hadn't and he basically said that it was highly unlikely to be sphincter damage, because as the "all-knowing" Flux has already told us, if sphincter muscle weakness/damage was the problem then we would be "leaking" faeces as well as gas. He also said that you would have had to have significant trauma to the sphincter or botched colorectal surgery to cause damage/weakness.I had also had some blood test results done testing for Coeliac disease, liver function tests and impaired thyroid function. This was the second lot of blood tests I have had and both lots of results have shown that I have slightly impaired liver function. He was at a loss to explain the reasons for this and I had more blood taken today to again check my liver function, and to check for Hepatitis. I have not drunk alcohol since the beginning of the year and also gave up smoking as then as well, but prior to that used to indulge quite regularly in all sorts of things.Basically, he said that he wasn't sure about LG and that he would be interested to see what the Colorectal Surgeon had to say. So Smelly, unfortunately I didn't get the answers we wanted, but I still have my visit to the Colorectal Surgeon mid July. I have included a link below to the surgeon I am going to see. He has had extensive experience, so hopefully he will be able to provide us with some answers.Smelly, could you let me know what tests you had done (anal manometry, etc). I want to cover every angle when I go to see him and again I am going to take some posts from this site. Surely there must be answer!!!!I'm not sure how long I have had the problem, because I used to smoke, so my sense of smell wasn't that good anyway. I think it has been a while though, coz i used to smell it occasionally, but guess I was in denial!!!...lol...I do have anxiety, mainly due to LG, which makes it worse. I think IE has something to do with it , coz if I empty out completely in the morning (usually takes three or more attempts), I am usually fine till after lunch. I am going to keep doing the kegels and see what difference that makes. Some people posted back in October last year I think that they were doing the kegels then. Did u keep up with them? Have they made any difference? I sit down all day at work, and only exercise 2-3 times a week, so I am going to increase this to at least thirty minutes every day. I take a fibre supplement called Nucolox, recommended by my gastro to be one of the better ones. I find it to be pretty good, although it has Aspartame in it, and when I questioned the safety of long-term use of Aspartame, he thought there was no problem with that....I had been lead to believe that it was harmful, maybe Flux could clear that one up for me.....Anyway, sorry I don't have better news, but please if anyone has any questions that they want me to ask the colorectal surgeon, post them here. Also if other LGers could let me know what tests they have had, i should ask for, etc., then that would be appreciated!ThanksP.S. If you want to see the upset of the World Cup, Australia is going to beat Italy tonight!!! The link to details about colorectal surgeon if anyone is interested...http://www.med.monash.edu.au/surgery/cabri...eter-carne.html

 

[23524]

Hi, I know what you mean about doctors not being all that helpful. I myself try to use alternative medicine like acidophilus and digestive enzymes rather than wait around for a doctor to prescribe medicine because its frustrating to feel like you're not making progress on the LG issue. I know that i have lg but its difficult for people who don't have the issue to relate. For me, the LG issue gets worse when I'm stressed out.

 

[Trinity]

I understand everything you're going through and also have found no luck with Doctors or any treatments. I've had LG for 20 years and most doctors just treat it like its regular gas. My current Doctor labels it as functional bowel disease but does not know how to treat it, just offers the usual treatment for many bowel disorders, fiber, diets of fruits and vegs. lean meats, and lower starchy carbs, but this doesn't make any difference. I've tried many other remedies too including antidepressants and anti anxiety meds, Zelnorm, Questran, chlorophyll, Devrom, goldenseal, peppermint, valerian, chamomile, Pepto bismol, antibiotics, etc. I would have those tests you already mentioned, anal manometry, defography, maybe small intestinal bacterial overgrowth test hydrogen breath test) and if those are normal, how about the alternative tests like comprehensive stool analysis thru Great Smokies and intestinal permeability test. Good luck and let us know your results.

 

[20322]

Hi Newkid1, thanks for the personal hello!The tests I have had done: Blood test for celiac disease. Manometry, anal ultrasound, stool sample to check for something (parasites maybe?), breath test for lactose intolerance.Of course all of these tests came back "normal". They wanted to do another colonoscopy (had one about 8 years ago) but I declined because I knew it would be normal anyway, same as last time. I don't know what to make of this LG. Seems everyone on here has had a battery of tests, all come back normal yet we all smell like a big piece of pooh!! (sorry, I know its not funny but sometimes you just have to laugh, don't you?)Thanks for posting back, even though your doctor sounds like most...they simply have no clue.Keep us updated after you see the colorectal surgeon. Good luck!

 

[cat crazy]

Hi Newkid 1There is no help from any doctors,they don't even understand it or worse, believe it, and all lg'rs just suffering with this terrible syndrome or whatever the hell it is. Since no doctor knows or understands it so how can they even treat it? I think what may be a better approach to finding answers for causes/treatment would be to approach the medical community from the research standpoint, those who do research work on ibs. Maybe they could do some study/research on it as this is not something concocted by us ibsers and certainly not just in our heads as there are too many people with this syndrome. There are quite a lot of common elements in symptoms of lg'ers. The main one seems to be IE if I'm not mistaken. But I would also term this syndrome as LEAKY VAPORS, rather than LG, as LG could be somewhat of a misleading terminology for this syndrome.

 

[nelly2]

New Kid-I got the same treatment from my GI. When I mentioned the LG he got this strange expression on his face. He was an elderly guy and head of his department at a hospital in the med center. I didn't think much would shock him. Guess I was wrong. I also brought posts from the website, but after his initial reaction, I felt uncomfortable giving them to him. The visits were a waste of money, but I'm not giving up. My doctor refered me to a GI who does alot of IBS research. I'm hoping he'll be a little more open minded. Don't give up.

 

[23524]

Hi, hang in there nelly2. I wish that doctors were given more training in ibs when they're in school. For myself, I'm on day three of pb8 brand acidophilus and it seems to be reducing the odor of the lg.

 

[22234]

Wow, keep us informed on how you are doing. I think it's pointless for me to experiment because I can't smell it so wouldn't know if it was working or not. I guess I could go by people's reactions but that happens rarely anyways so don't know. Keep us posted!

 

[16629]

Hey newkid!

Sorry I didn't reply before now. I have been busy trying to find a cure for LG. haha! I have had blood tests and the anal manometry test and my results were "textbook" meaning that they were normal. I have also had 3 colonoscopies they too were supposedly "normal". I have had a CT scan of my whole abdomen, once again "normal" 7,000 bucks later and no answers I am ready to give up! I was going to 2 docs who really seemed to care about my condition because I was really bothered by my coworkers & then its like they ran these tests on me and they thought I was crazy & lying about my problems. I have a really hard time at work because I work in close quarters with a lot of people. I guess I have accepted the fact I am the stinky girl.

 

[nelly2]

Hi Mandabell-Wow, I guess I got off cheap. Mine was around $4000, but I got the same treatment from my GI. I also work in close quarters but with kids. Kids often have gas and don't seem to be bothered by passing it, so I'm often wondering if it's me or them. I've been trying to get people to answer questions regarding LG on one of the strands, and the symptom that everyone seems to have is IE. I wonder if that could be the culprit. Something to ponder, I guess.

 

[23524]

Hi i just started taking digestive enzymes today as well as nullo to see if it will make a difference. Hopefully i'll notice a difference in a week or 2.

 

[22234]

Hey just wondering if the pb8 brand acidophilus was working. I know your trying different things and was wanting to know if anything worked somewhat. I'm about to give up on trying a hundred different things because I don't know if it's working anyways unless people told me I smelled. It's impossible to fing a cure when I can't smell myself. Go figure

I still can't seem to depart from my Devrom but don't know if it's helping anyways.