# Wits end.



## maybekms (9 d ago)

Hey fellow sufferers.

I have been lurking on and off for about seven years now. I remember Pokerface's posts some years back, it was my first ray of hope in all of this as everything else fell apart.
Those posts didn't end up helping either, neither did anything else actually. The doctors don't know what to do with me and I don't know what to do.
I have had colonoscopy and gastroscopy a few years back and tried all the meds they've given me. Also been on SSRIs on and off over the years, sometimes I have had periods when I have been going to the gym (early mornings or late nights), studied and worked (remote). I have some friends still so I am not totally lonely, I haven't met them in years we only stay in touch over the internet. I can't bear to see people, I have no social life. It's even hard being around my parents with their reactions to being around me. 

I love dreaming a lot, it's a struggle to drag myself back to reality, reminding myself that I must work on myself in hope that somehow my LG will be figured out and I can live a normal life again. But I don't know where to go from here, I was at the doctor recently talking about a defecography because I saw someone mention it here and it really sounds like something relevant to me. They said they couldn't do it, why I don't know. I live in a country with socialised healthcare, I would take on debt to have a private doctor see me, but I just don't know where to start. 

I don't know what else there is for me to do, when reality sets in I see no other way forward than to just kill myself. Only reason I haven't is because my parents and friends would suffer.


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## NinaS (2 mo ago)

maybekms said:


> Hey fellow sufferers.
> 
> I have been lurking on and off for about seven years now. I remember Pokerface's posts some years back, it was my first ray of hope in all of this as everything else fell apart.
> Those posts didn't end up helping either, neither did anything else actually. The doctors don't know what to do with me and I don't know what to do.
> ...


Hi Maybekms,
You're not alone. 
There are many people who have felt exactly as you have felt for the same reasons (LG- and its social implications). I also strongly wondered why I should go on, at one point I thought even cancer would be better because at least my loved ones could stand to be near me while I was leaving them.. Yeah depressing thoughts, but that's how I felt/wondered at the time.

Here's one person here who said very similar statement, he has IBS-d but also other problems.









Anybody feel like there’s no hope ? I feel at my lowest...


I have IBS but I get both constipated and diarrhoea too one day one thing next Few days another and back and forth ! I have BPD, treatment resistant depression and PTSD I live in the UK and have nothing to show for it the NHS services and gastro clinic are unable to help me and don’t ven get me...




www.ibsgroup.org





I also replied to him with suggestions on what I did to get better. I also had IBS-d mostly, and leaky gas.

There are many more people here who say "I'm done", "this is ruining my life", "where can I work?"... etc. So, you're not alone in that.

Notice I wrote, "I had - leaky gas."

For almost 4 years now I've had a pretty good life. Except for a diarrhea episode a few weeks ago from eating too much chocolate (self induced, overindulgence) I haven't had a major episode of diarrhea or leaky gas in at least 2, now going onto 3 years. 

I've been able to sit in meetings, take planes, share car rides, etc. For years now, without issue. People who didn't see me during my Leaky gas years, wouldn't even know I had/have a gas problem via their experience with me. Basically, it seems like I'm mostly living a "normal life" to most people.

I'm sure that if/when I do get gas, it would/will leak (leave without a sound or ourselves knowing it left). I just don't get gas very often at all, and if I do, I immediately treat it and restrict my diet to prevent anything from growing, so that usually if I do have gas its just that moment in time for a few farts or burps that day (like not continuous or for hours). But, thank goodness, it looks like the treatments I did in the past make it so that usually my gas doesn't smell now if I do pass.

I would suggest trying to focus on treating the gas effects first, since it seems to cause you so much social turmoil. I don't know if you have diarrhea or constipation as well?
I don't know how SSRIs affect the digestive system, you should check their side effects. Many drugs have a side effect of diarrhea or gas -fyi.

As for the defecography, I don't know how that is supposed to help you. So you see your bowel move, how does that help? Have you been officially diagnosed with IBS? do you have a spastic colon?- usually you know this b/c you need to go poop with a moment's notice as you colon just immediately triggered that need. If you already have answers to the above, as yes, then what does this radiography do for you?

There's a science to what creates gas.
I'd suggest you look into it.

For many people with IBS including myself that meant two things: 
*1) reducing the spastic-ness of my colon
and 
2) reducing the cause or culprit of gas-especially smelly gas (non-CO2).*

#1 - required regular exercise, no caffeine or stimulants like that, and a gut repair- I did an elimination diet where I ate nothing but chicken broth (with cooked celery evenutally). The chicken broth had glutamine, minerals, collagen, and a whole bunch stuff that somehow seems to help heal your gut, and somehow these things together seemed to reduce the spastic response of my colon over time.

#2- Smelly gas (non-trapped air or swallowing air) is often caused as a byproduct of bad actors like bad bacteria in your gut eating undigested food. Look up SIBO. 
I had SIBO, I also had a number of other infections like C.Difficile, intestinal candida, and something else I forgot. 
Point is, it takes 2 to make the gas- the bad actor and the undigested food past its place in your system.

So, get rid of the bad actors- bad bacteria, virus, yeast, pathogen.
and get rid of the undigested food- food you have trouble digesting, which maybe you've noticed you get more gas when you consume, or you may even see it pass whole in your stool.

One way to help get rid of bad actors is to deprive them from the food they like or eat predominately (usually sugars and starches). You can aslo take antibacterials or antivirals prescribed for the digestive system, and targeting these bad actors specifically. For me, i took a round of antibiotics specifically against c. Difficile, and another time I was given Xifaxan for general SIBO treatment.

You can also bring in their enemy - probiotics, good yeast -saccharomyces Boullardi. This may actually be necessary to ensure the percentage of the population that survives the round of antibiotics is actually the good bacteria instead of the bad ones. In my case, it also restored digestive function, and I was able to eat foods that I hadn't eaten (couldn't digest) in years (while I had LG and IBS-d).
Ask your doctor about these treatments. 
Hope this helps.


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## Sunstar (5 mo ago)

I’m so sorry you deal with this, it sounds awful. I have a medical condition that makes me pass gas involuntarily. I just apologize and explain I have a medical condition. You are right it’s so embarrassing when you can’t control it, I sometimes get the gas that smells as well.


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## maybekms (9 d ago)

NinaS said:


> Hi Maybekms,
> You're not alone.
> There are many people who have felt exactly as you have felt for the same reasons (LG- and its social implications). I also strongly wondered why I should go on, at one point I thought even cancer would be better because at least my loved ones could stand to be near me while I was leaving them.. Yeah depressing thoughts, but that's how I felt/wondered at the time.
> 
> ...


Hi Nina, 

Thank you for the long and thoughtful answer, I am happy for you that you manage to defeat this and can live a normal life again. It gives motivation and hope to hear stories like this. The reason for me wanting a defecography is to find some kind of physical defect that is causing this issue. I do not think I smell only when I am passing gas, however I am so confused and tired of this situation that I do not know what is real as far as my symptoms goes. 
I will try to do what you suggested, I am worried because if I do not eat enough I will not be able to study / train. The few escapes I have in life, I will find time for it soon when it fits me. Do you suggest doing an elimination diet as severe as yours? A quick google suggests many foods that one can eat during the diet. 

In my mind my issues are largely physical, but I can't deny that I have periods of being gassy. 
I wonder did these two steps alone "cure" you from your symptoms? I will speak to a doctor asap, thank you.


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## maybekms (9 d ago)

Sunstar said:


> I’m so sorry you deal with this, it sounds awful. I have a medical condition that makes me pass gas involuntarily. I just apologize and explain I have a medical condition. You are right it’s so embarrassing when you can’t control it, I sometimes get the gas that smells as well.


I feel so much shame and socially ostracized that there is not much point for me existing. But I will keep trying, it helps knowing others are in the same boat and others having found a cure.


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## Sunstar (5 mo ago)

I will keep my fingers crossed for you that you find a cure. I am really struggling With flatulence at the moment but we can look for a cure together.


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## NinaS (2 mo ago)

maybekms said:


> Hi Nina,
> 
> Thank you for the long and thoughtful answer, I am happy for you that you manage to defeat this and can live a normal life again. It gives motivation and hope to hear stories like this. The reason for me wanting a defecography is to find some kind of physical defect that is causing this issue. I do not think I smell only when I am passing gas, however I am so confused and tired of this situation that I do not know what is real as far as my symptoms goes.
> I will try to do what you suggested, I am worried because if I do not eat enough I will not be able to study / train. The few escapes I have in life, I will find time for it soon when it fits me. Do you suggest doing an elimination diet as severe as yours? A quick google suggests many foods that one can eat during the diet.
> ...


Hey Mabyekms,

I don't know all of your digestive or related symptoms. All we know so far from your post is that you state you suffer from leaky gas. Many of us also have one more symptom along with gas, whether its abdominal pain, diarrhea, or constipation or all of the above.
I think I've seen some threads here about people feeling they haven't fully evacuated, or a "tip" or piece of stool is stuck.
In the past, I've had the experience where I have felt or thought that my an** was open for most of the day or hours. It was usually right after/during a bout of gas (hours or days long). So I had wondered if it would stay open due to all the pressure I was giving it (trying to hold in lots of gas instead of farting--> leads to leaky gas, gas leaving without my control anyway?).
After long periods of being well and not gassy, I think/feel my an** is mostly closed, most of the time, but I'm sure I could probably lose control over that if I do get very gassy for long periods of time.
So, that's all I know about the an** staying open and possibly causing odors too.

If you feel you need this defecography to find out about physical defects, I hope it helps you. I don't understand enough about your condition to comment, with my leaky gas and mostly IBS-d, and doctors literally checking that area, I didn't personally find that necessary. But your symptoms and history maybe a bit different.

I agree with you, I would NOT stop exercising. Exercise is sort of a strong and seemingly unrelated weapon on this digestive malady.
It helps both with the psychological/mood/brain chemical side and actually helps produce bowel movements to help make it more regular.

I can't tell you what diet exactly to follow. I only commented on the diet I did that gave me results. But, I would also clarify, that even with my elimination diet, there were times where I had an upset and there was no clear food/dietary explanation/culprit. I would come to learn that more than likely I had consumed some sort of pathogen/parasite, and anti-parisitics or/and Xifaxan along with the probiotics is what really got me out of that rut. For me, my IBS was that severe, that I didn't really have a choice to not make it a VERY restricted diet.
Everything was giving me a problem whether it was gas, diarrhea, loose stools or in a few cases constipation.
So for me, finding _anything _that I can eat that didn't cause a problem was almost a miracle.
So, it was I guess at least psychologically a little easier for me to do a very restricted diet, because it was still an upgrade from fasting.
To exist in my world and go to work and/or grad school I had to be able to walk there and sit there those days.
Having had bad reactions to most all foods, I didn't know how I could do that, and not knowing what foods I could eat.
So, instead of risking having a bout of gas or diarrhea in the middle of a presentation or meeting, I would usually fast during the week and eat on weekends. But fasting only helped reduce the problem. Even during the days I fasted, I still possibly had one of those symptoms, just less.

*Do you know what foods you can eat that don't cause ANY problems*- gas, diarrhea, constipation, loose stools, pass into your stool whole or not fully digested?
These foods that have *NO* negative reaction to you, maybe safe for you, and you could start your elimination diet with them (assuming they're healthy foods).
Often many of us don't know what these foods are so we start with the very strict elimination diet, and then add foods slowly. Usually every 3 days or on weekends, but only added if you're well- no gas, diarrhea, constipation, etc.

I noticed for me some foods didn't always cause a digestive effect, but still had other effects.
For example:
I get eczema (which I hadn't had since I was a teen) when I eat wheat.
I get pimples if I eat too much greasy food - bad oil like canola oil.
I get a larger type of acne (alongside digestive issues usually) when I eat a large amount of dairy product.

These other reactions clued me also to my trouble digesting those particular foods and so I definitely avoided them during elimination diet. I actually still avoid them mostly to this day, even though I can actually have a moderate amount of these foods today-(some slices of bread, eggs/meat fried in canola oil, 2 scoops of ice cream).

Apparently, the theory is that when your gut is leaky some of the parts of the food can travel to other parts of the body via your blood, and react, causing some of the effects above- eczema, acne, etc. So keep that in mind when determining how well you are digesting food. Remember, you don't want undigested food to get to the small intestine where bad bacteria can feast on it.

Have you ever tried a Keto/low carb diet?
That's a good place to start.

If you've been a normal/high carber all your life, this transition maybe a bit difficult. There's something people call the "keto flu." Basically, it takes time for your body to adjust to low carb/low sugar, and so it experiences low energy /headaches or/and large craving for carbs on the first couple of days of a Keto diet. But once adjusted, many people still function normally, some even say they function better than before and feel that they have more energy (they're using energy from their fat now too).

I don't know when is a good time for you to start a keto diet. But you're right, there is a transition time of feeling weak or not so well, so you'll have to decide when. Look up keto flu.

The diet I'd suggest is a low-starch/sugar diet, not necessarily Keto (less than 10-20g carbs/day?) but closer to it.

If you're not that sensitive to most foods, i can tell you what my diet was for after my 2 weeks of chicken broth?

So after my two weeks of nothing but chicken broth (hours long cooked-antibiotic free chicken, celery, ginger, coconut oil, and salt) I added foods. The ones that worked for me after the chicken and celery were:

spinach (raw, but cooked would work too).
leafy greens (arugula, chard, mizuna, "spring mix" greens)
steak and lean fish
avocado 
olive oil (at first i could only have small amounts)
romaine lettuce
tomatoes
strawberries
a small or moderate amount of baked pea crisps (there's a brand here called Harvest snaps-- this is my "cheat" food). Large amounts DID cause problems (like eating the whole bag- BAD).

After a *few months *from the broth, xifaxan and probiotic treatment I tested and added the following:
-kale
-foods cooked with garlic and onion (garlic and onion themselves were my worst offenders on gas, but after treatment I could eat foods cooked with them, though not the actual vegetable).
-probiotic pickles (NO vinegar- they are made in a brine and have probiotics).
-pecans
-blueberries
-half a grapefruit
-Baker's chocolate (no sugar or milk) sweetened with stevia
-avocado oil
-larger amounts of olive oil
-cucumber without skin
-antibiotic free eggs (I was VERY scared to try and add this, as previously I had gotten sulfur gas smell in year 1 of my IBS, so I avoided them for at least 5 years- really).

After *several months* rom the broth, xifaxan and probiotic treatment I tested and added the following:
-broccoli - (at first it looked like I could only handle small or moderate amounts without smelly stools,eventually was able to do more).
-cauliflower
-cabbage
-skinless almonds
All the above were cooked foods and added at first in small amounts.

I didn't ever really intentionally add dairy to my diet. I've only eaten a bit or tested them when it was a special family occasion and to my surprise, I had no reaction to small and medium amounts of ice cream or a few bites of pizza (not a full slice-too many calories and carbs). Yes, when I got excited about this, I did eat more than the two scoops a few weeks later, and got the bad results we intolerant people get. Same with bread/wheats, its someone's birthday so after these treatments for a year, I dared to try a few spoonfulls, and again to my surprise no reaction at all. Again, *small to moderate amounts.* 

Years after the diet above is my main diet now. But I also like to add eggplant and beyond burger pea patties, and now i can also digest pea protein, which at an earlier time, I was unsure about (light reaction, not dramatic or strong reaction before). When I'm with my family , they eat a lot of rice, potatoes and bread. Sometimes, when I haven't had a chance to buy my own food, I have eaten their rice, no I don't get much of a reaction now except weight gain. In the past before treatment, rice wouldn't cause an immediate reaction to me, but the next day I could get gas from the thing I ate the day after rice consumption. It seemed to "prime" me for being gassy the next day. I assume it was the pure starch of the rice feeding the bad bacteria, and since their byproduct of just rice is probably just CO2, it doesn't smell until you introduce other smelly foods and when you're not digesting, that's what will smell. So, I'd be more susceptible to the smell/gas the next day if I ate significant amount of rice the day before.

I'm sorry if I write very long. As I'm not a doctor, I can only speak from my experience and the knowledge I've learned along the way. I gave examples of what I've eaten that were safe for me, hopefully some of them will be safe for you. As for energy, see if you can find some chelated vitamins, especially vitamin B, and also your calcium,vitamin D to be chelated. Chelation helps make it harder for any bad actors to absorb your vitamin vs your own body. Also, in terms of low calories, the avocado and olive oil or large amounts of meat are what kept my calories significant during the very restricted diet parts.

In general,l I'd advise on eating:
- antibiotic-free food/meat
- pesticide-free food, or veggies that you know you can remove pesticides from (look up Apple cider vinegar wash) 
- No starches, no sugar (or very little amounts)
- keep your system slightly acidic (helps keep good bacteria in good environment and reduce/kill bad bacteria) -like drinking some diluted Apple Cider vinegar or lemon -water.
-take your probiotic regimen (ask your doctor what he recommends). My regimen was a pill of 150 billion 3 times a day for 2 weeks during elimination diet (450 billion/day). But then my daily was reduced to 80 billion once a day for like two years as i added on foods.
-avoid common dietary intolerance foods if you're unsure what your problem foods are (dairy, soy, wheat, corn, most grains, oat makes many people gassy, most beans, maybe some legumes).
-After being well, off the "no eat" list, I'd first check how well I can digest some legumes and nightshades, they're on the more "maybe category"

Hope that helps.


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## NinaS (2 mo ago)

ohh and beware of _antinutrients _that can on their own inhibit nutrient absorption or affect digestability.
*Phytic acid*, found in many nut skins (like almond skins) inhibits nutrient absorption and also makes digestion difficult.
So, like if you eat a meal with or after eating several almonds with skins, if you do have a IBS, you're likely to have trouble digesting the other foods you ate, as the phytic acid in the almonds is making that food more difficult to digest. So it may not be that food in itself that you're intolerant to, but because you ate it with phytic acid its causing problems.
Does that make sense?

So take the *skin off *your almonds. I think similar story on some beans as well. I just avoid beans. I'd definitely avoid it during the elimination diet and wouldn't try them for a few months after the SIBO antibiotic+ probiotic+ elimination diet regimen.

If you are or will try cheat foods beware of other things that can cause upsets that seem harmless like *gums*:
xanthan gum, guar gum, etc.

*Carrageenan* is added to many meats (so that they can be sold cheaper), beware this often causes people digestive issues.

*Beware of alcohols* in your foods. They are often hidden.
Many sweetners have it: erythitiol, xylitol,sorbitol, etc. Avoid them during elimination diet, test them after a few months of being well, but still its good to just avoid them in general even if you find you can tolerate them now, they'll eventually help grow the bad bacteria vs the good ones.
Some alcohols are found in fruits, beware- peach and prunes? have sorbitol, so do raspberries. If you find you can tolerate small amounts great! But don't add them to your elimination diet or even immediately. Bad bacteria like alcohol


Vinegar is an alcohol beware of foods with it (pickles with vinegar, olives with vinegar, sauces, hot sauces, etc.) Maybe at first, after elimination diet, you can try having meat cooked with vinegar, but I'd avoid food with non-cooked vinegar. ** Being an alcohol it should mostly evaporate during the cooking process.

Obviously from the above, *don't drink alcohol*, for some good period of time. starting from the elimination diet, I'd stay away from it for at least 3 months minium, and only sip from then on if needed. I I actually just don't drink except on Christmas and/or new years anyway.

Beware of *citric acid* added in foods. If you do have yeast dysbiosis, citric acid will only make it much worse, yeast love that stuff.
I'm assuming its ok to have some citrus fruit (lime, lemon, a little bit of grapefruit after some time), what I'm saying is avoid foods/drinks with citric acid at least for a few months (if not more).

Also, in terms of full disclosure, before my elimination diet, I also would do a "gut cleanse."
That is I took herbs/fiber mixture to remove everything in my gut before the elimination diet and antibiotic/probiotic regimen. That way I would be clean and have NO GAS before and during the elimination diet. And I would know any new gas is from what I've just been eating/current bacteria vs the past food before elimination diet.

Ask your doctor about a "*gut cleanse*." I used "renew life" "cleanse more." But I'd also use a colon prep to start my elimination diet again. *Colon prep* is usually a strong salt mixture wash. Your gastroenterologist has a prescription for this. Ask them if you can get it to do a gut cleanse or what is it that the recommend in terms of cleaning your gut before an elimination diet/antibiotic/probiotic regimen.

And I think with that, that's the basics of most of what I know that can help.


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## NinaS (2 mo ago)

Forgot to mention a tricky offender--> *fructose *and *fructans*.
Like you may find out you can eat some fruits and not others. For example, strawberries are fine with you, but somehow the apple makes you go to the bathroom or a mango. If this is the case, it is likely you have fructose malabsorption. *You can get tested *for this, I suggest you ask for the test, if you suspect.

Fructans are a polymer of fructose (repeated units of fructose).
So, its possible if you have fructose malabsorption, you could also have fructan malabsorption.

Onions, Garlic, Leeks, asparagus, honey, and agave? are full of fructans.
chicory root and inulin are fructans too.

If you don't have fructose or fructan malabsorption, hooray! 
Because this is a tricky ingredient that there's not always data as to which foods have it and which don't or their quantities.

For me, digesting foods with high percentage of fructan caused gas that smelled like the food (smells like onion or garlic).
The fructose (at year 1-4 of my IBS) would cause immediate diarrhea within like 1-2 minutes of eating.


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