# I'd Rather Have Cancer Than IBS



## volatile (Jun 20, 2005)

My life at age 26 sucks and is not worth living, and it is ALL because of IBS.Perfect example is this past week.Usually I have my strict diet, exercise routine which even then IBS still sucks.However this week I meet up with a buddy for a change out of town.Went to the restaraunt, couldn't find anything to eat. Finally did...but when the server brought it to the table it had butter in it...so they had to bring me a new dish.Didn't matter...after spending 20+ bucks for dinner AND causing a scene my gut was a mess.Then went to have a few drinks with my buddy.I never drink, which means I am a hermit because if you can't drink then that eliminates 100% of socializing.Now my gut is a complete mess and this just verifies WHY at 26 I have no friends.It is because of IBS...I can't do anything.I can't go out to eat without causing a scene to make sure the food is safe, and even then it still gives me problems.I end up wasting 20 bucks and looking like a douche.I can't drink which is what young adults (and all grown ups) social scene revolves around.I end up being made fun of for having a fat beer gut...even though I exercise 6 hours a week. My body never shows how fit I am because my IBS symptoms distort it due to bloating.People think I am a lazy fatass with no motivation.I really wish I had cancer...that way my medical condition would be taken seriously and one way or another it would be resolved.Growing up I was a skinny kid who trouble making friends...why did God have to make it 100X worse by now giving me this chronic uncurable condition cursing me forever with a beer gut and being a hermit?Why can't GI doctors who are supposed to be 'experts' on the GI gut understand and solve?If I had cancer at least people would be sympathetic and doctors might help and if not, I'd be out of my suffering.I am convinced the biggest curse you can do to a person is not kill them but instead give them a chronic non-life threatening condition, this way they have to live in misery everyday for a long while.


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## Kathleen M. (Nov 16, 1999)

I think you'll find everything you hate about IBS will be going on in spades if, heaven forbid, you get cancer.Friends and family will avoid you even if you think they are taking you more seriously they will not be more sympathetic or there for you. Cancer scares people and they avoid people who have it more often than they become the loving supportive people who will be there for you. If they won't be your friend because you can't drink a lot with them, they won't be your friend while you are in the hospital puking your guts out hooked up to all kinds of tubes.While you see the "glad to be alive" part of surviving cancer, most people don't tell you about the long term, uncurable, often difficult to treat side effects that bother them every day of their life. The glad to be alive usually means they don't complain about them that much, but the treatment is designed to nearly kill you and that will cause damage that may not ever heal in a way that makes you perfect and feeling good every day.I know you believe that the only way to be social for you and all other humans on the planet is to drink, and drink heavily, but really I've got plenty of friends in AA who know they will never, ever, under any circumstances have a drink ever in their life because they cannot ever drink again and you know what, they are generally the most social people I know. The doctors won't understand your cancer, if you are lucky they will find a treatment that will work, but for to many people all they do is make you a lot sicker as you wait to die and not much more than that. Now the chance you will get better (rather than just live longer in misery) makes it worth the treatment, but don't think that path is really so much better than what you are on. Everything that doesn't work about the medical system for IBS really is something you find in all areas of medicine. All areas of medicine have good doctors and bad doctors and there are tons of people who don't get better on any available treatment.Have you been checked for depression or social anxiety issues?


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## peaches41 (Nov 26, 2008)

volatile writes - "I really wish I had cancer..."Take my word for it - you don't. You think you've got problems now.Kathleen, your reply was so spot on it makes me wonder if you have had cancer treatment, you are so correct in your comments.


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## Kathleen M. (Nov 16, 1999)

Fortunately, I've been lucky so far.







There is a little bit of cancer in the family, but we tend to be more likely to drop dead of heart disease first.Doing some research into the stuff that causes cancer means I've read enough about the treatments (as some of them also can cause other cancers later on) to know how bad they are. I also have friends the do a lot of work with cancer survivors and doing the rehab it takes to get the body working well again once people get the all clear and can start the recovery process.


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## peaches41 (Nov 26, 2008)

Kathleen M. said:


> Fortunately, I've been lucky so far.
> 
> 
> 
> ...


Well you certainly have done your research well







Did you ever come across anything that will help with peripheral neuropathy caused by chemo drugs? Specifically Taxol and Carboplatin? This is the trial of my life, and I can't seem to find any relief from it. (Sorry to be off-topic here). I don't like to moan and I'm grateful to be alive, but this is such a nuisance.xx


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## Hester (Jul 5, 2009)

As you can tell today, I am "stuck" by my bathroom and ON MY favorite forum. LOLV - I feel your anger and can relate! Kathleen, your answer is spot on. Cancer is horrible. IBS is bad but not like cancer. No, we cannot go out like others do and when you are young (I am not), the social aspect of life around food and drinking would be very hard to handle. You have to ask yourself: Are you just angry and need to vent to a counselor? Are you mad because of the loss of some friends and social functions you once enjoyed? Could this stage in your illness be grief? There are people here on these boards who have found love and social functions with people who DO understand. Grieve, my friend and then move on. I am not religious but I do believe when Life closes a door a window opens somewhere although it might be on the 17th floor. (LOL) Our illness is limiting but it also means we are FORCED to find other ways to enjoy life. For me, this has resulted in going to school online, to socializing online but with people all over the world. I am straight forward with friends and employers. If they cannot handle it, so be it. I have taken up writing and finished my first book. Would I rather be out cycling, hiking, rock climbing, partying and eating pizza? You bet! But I work hard to look at my life NOT in all the things I can no longer do, but rejoice in the things that I can do! (However, some days I fail at this task and am very angry. This is especially so if I happen upon a doctor or employer/boss that takes my condition flippantly!) Peace my fellow IBS sufferer. . .


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## Kathleen M. (Nov 16, 1999)

peaches41 said:


> Well you certainly have done your research well
> 
> 
> 
> ...


I know Cymbalta (that sometimes helps with IBS pain and can lessen diarrhea as it tends to be a bit on the constipating side of things) I think was approved for diabetes induced peripheral neuropathy as well as depression.http://www.cancer.org/Treatment/TreatmentsandSideEffects/PhysicalSideEffects/ChemotherapyEffects/PeripheralNeuropathy/peripheral-neuropathy-caused-by-chemotherapy-treating-c-i-p-n mentions low dose antidepressants so that may be an option, but not sure if it has been tested for the chemotherapy induced and it may not also work for that. This link lists some other treatments as well.Unfortunately some people don't tolerate antidepressants well, but that is the only thing off the top of my head I can come up with.Some of the mind-body stuff like distraction (getting the mind focused on a visualization when trying to go to sleep and pain tends to be worse, sometimes you can find CD's that have soothing music with the visualization instructions on them) can sometimes help a fair amount as well as other relaxation/meditation sorts of things.


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## peaches41 (Nov 26, 2008)

Kathleen M. said:


> I know Cymbalta (that sometimes helps with IBS pain and can lessen diarrhea as it tends to be a bit on the constipating side of things) I think was approved for diabetes induced peripheral neuropathy as well as depression.http://www.cancer.or...reating-c-i-p-n mentions low dose antidepressants so that may be an option, but not sure if it has been tested for the chemotherapy induced and it may not also work for that. This link lists some other treatments as well.Unfortunately some people don't tolerate antidepressants well, but that is the only thing off the top of my head I can come up with.Some of the mind-body stuff like distraction (getting the mind focused on a visualization when trying to go to sleep and pain tends to be worse, sometimes you can find CD's that have soothing music with the visualization instructions on them) can sometimes help a fair amount as well as other relaxation/meditation sorts of things.


Thanks, love x


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## IanRamsay (Nov 23, 2008)

i know ibs is an unpleasant sod of an illness, but the way i see it, god graced me with IBS, when he could have burdened me with something much worse like cancer or something degenerative. when you look at it like that we have it relatively easy. cheersIan


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## ziggy7 (Oct 24, 2009)

have you tried a diet like this that i posted in this link? scroll down till you see my posthttp://www.ibsgroup.org/forums/index.php?showtopic=120705and well i now hear 75% types of cancers are curable by just geting lots of Vitamin D so i guess i could see you wanting one of them cancers instead of ibs-d







but really with 75% types of cancer curable by just geting sunlight it makes you think what if you got sunlight and a good diet it could do wonders i found a diet that works GREAT for my ibs-d its in that link but honestly if you want the short version only eat eggs,unsalted butter,meat,animal organs, and some broccoli is ok to eat every other day and cut all the stems off the brocoli you just want to eat the top flower parts oh and some feta cheese is good too make sure its hard feta cheese. soft cheese makes me sicknow also you will want a unsatlted butter thats either from grass fed cows and or from butter that has lactic cultures i hope you can find one and as for animal organs don't eat factory raised cow liver it sucks try and go for grass fed natural but the avrage factory turkey liver and heart is okalso i would avoid organic because they can label beef organic when its still grain fed which defeats the purpose =/ so make sure its always grass fed you want to be geting that vitamin K2-MK4 from the grass fed beef fat and organs which is only in 2 places naturally raised animals and a human mothers breast milk which is why so many people are lacking this great vitamin. it is not in grain fed cows cows were never ment to eat grains it gives them gut infections which is why they are always fed antibiotics its terriblealso if your shadow is longer than you than your not geting vitamin D but if its shorter than you than you are so basically go outside around noon time and don't put on sun screen it blocks your vitamin D suncreen is #### just go out of the sun before you get a sun burnand ya i know butter? fatty meat? broccoli!? i too used to not beable to eat a single bite of broccoli or fatty meat but really its a whole new world when you cut the carbohydrates out and you can see by them foods all very low in carbohydrates but if you cheat and say eat a slice of bread then for sure broccoli is gonna cause problemsalso avoid vegetable oils if you cook a steak in a vegetable oil like olive oil it will hurt your gut but if you cook it in butter it won't and the reason for that is cause vegetable oils can be inflammatory. and with this diet you should notice you will get basically zero gas well at first 80% less gas but about 2 or 4 months down the road 99% less gas and this along with no more problems from ibs-d makes life alot better you can work at the gym and exercise or even run hard and do what ever with out ever worrying about gas ever again hope this helps


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## volatile (Jun 20, 2005)

Kathleen M. said:


> I know you believe that the only way to be social for you and all other humans on the planet is to drink, and drink heavily, but really I've got plenty of friends in AA who know they will never, ever, under any circumstances have a drink ever in their life because they cannot ever drink again and you know what, they are generally the most social people I know. Have you been checked for depression or social anxiety issues?


What the hell would depression or social issues have anything to do?Ever think I am depressed and socially isolated BECAUSE of IBS?YOU try being 26 with IBS and see how you'd rather be dead.Because of IBS, I am a hermit.I can't go out to the beach and let loose.I can't go out for food with friends or to the bar at night.I love to bodybuild, but it gets VERY frustrating that I still look like #### BECAUSE of IBS.Because of IBS I can't diet properly to get stronger in the gym.Because of IBS, everything I eat it seems makes things worse, so because of IBS instead of going out with friends to eat and drink, I end up spending 5 minutes instructing the waiter what needs to be done, spending 20 bucks on food, and still feeling a negative reaction after.So because of IBS, instead of having fun going to the beach with friends, out to the bar for food afterwards and a drink, I just avoid it because IBS saps all the fun out.Is it fair that when I take off my shirt, despite 6 hours in the gym, I look very fat and out of shape through NO fault of my own?Is it fair that I spend so much time and energy on food prepartion, exercise, and have NOTHING to show for it?Any you insult ME by telling me I have depression and socializing issues?Tell me, how are you supposed to socialize, to relate to people, when as a 26 year old 99% OF socialization involves having a drink in some way or another?How are you supposed to relax, have fun, and partake if you have to be a spectator?IBS has made it so I can't have fun in life, and comments like this really are insulting and belitting.You forgot what it was like to be 26 and have IBS.


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## volatile (Jun 20, 2005)

Hester said:


> i know ibs is an unpleasant sod of an illness, but the way i see it, god graced me with IBS, when he could have burdened me with something much worse like cancer or something degenerative. when you look at it like that we have it relatively easy. cheersIan


Keep telling yourself that.Sooner or later you will crack.I spend 6 hours a week working out and have NOTHING to show for it because of IBS.I can't socialize because what fun/how are you supposed to relate to people when you can't drink?What else is there to do on Saturday night?Go to the library?I have it shitty and I am sick of people not taking it seriously and offering suggestions that do NOTHING to solve it.I have busted my ass for 7 years, and am sick of these results.


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## volatile (Jun 20, 2005)

Kathleen M. said:


> I know Cymbalta (that sometimes helps with IBS pain and can lessen diarrhea as it tends to be a bit on the constipating side of things) I think was approved for diabetes induced peripheral neuropathy as well as depression.http://www.cancer.org/Treatment/TreatmentsandSideEffects/PhysicalSideEffects/ChemotherapyEffects/PeripheralNeuropathy/peripheral-neuropathy-caused-by-chemotherapy-treating-c-i-p-n mentions low dose antidepressants so that may be an option, but not sure if it has been tested for the chemotherapy induced and it may not also work for that. This link lists some other treatments as well.Unfortunately some people don't tolerate antidepressants well, but that is the only thing off the top of my head I can come up with.Some of the mind-body stuff like distraction (getting the mind focused on a visualization when trying to go to sleep and pain tends to be worse, sometimes you can find CD's that have soothing music with the visualization instructions on them) can sometimes help a fair amount as well as other relaxation/meditation sorts of things.


I've already taken many drugs for anxiety issues...and none EVER helped with IBS.Besides...I find it VERY insulting that you think this is the problem.Do you think it's fair that person X can go to the beach, take off their shirt, flex their muscles, and have a beer...while I spend 6 hours a week in the gym and still have a scrawny body with a beer gut? Do you think it's fair I can't drink yet still suffer...do you think it's fair instead of relaxing, having a beer, and some quick dinner, I have to cook special food...and I STILL suffer?Why the $$$$$$ should I need an anti-depressant?Solve the IBS, solve my problem.


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## peaches41 (Nov 26, 2008)

volatile said:


> I've already taken many drugs for anxiety issues...and none EVER helped with IBS.Besides...I find it VERY insulting that you think this is the problem.Do you think it's fair that person X can go to the beach, take off their shirt, flex their muscles, and have a beer...while I spend 6 hours a week in the gym and still have a scrawny body with a beer gut? Do you think it's fair I can't drink yet still suffer...do you think it's fair instead of relaxing, having a beer, and some quick dinner, I have to cook special food...and I STILL suffer?Why the $$$$$$ should I need an anti-depressant?Solve the IBS, solve my problem.


 What are you going on at Kathleen for? She's not talking to you, she's talking to me. If you read her post carefully you will see that she's referring to my request for help with my chemotherapy induced peripheral neuropathy. Unless you've had ovarian cancer it's nothing to do with you.


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## plagued (Jul 7, 2010)

I've had IBS for a few years now, and there were times when I've become as frustrated as you and lost all hope. But it never helps. All you can do is keep trying to find ways to get better, to improve your diet etc. If you don't try, certainly you will never get better. I've tried and tried and will continue trying, and my symptoms have died down considerably since the first day I awoke with IBS. And I know there is a chance I will never be cured. I will still look for a way.


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## Hester (Jul 5, 2009)

Ziggy: I am going to agree on a lot of what you said. However, I don't agree that ALL beef labeled organic is bad or misleading. Usually, it also says "Grass Fed/grain free/hormone and antibiotic free" stamp at least at Trader Joe's, Whole Foods and some independent stores - there are also farmers that are very careful and GREEN. "Natural" labels at the grocery store are all garbage. It means nothing and tastes like cardboard. (Nice note on the values of grass fed meat products!!!!) Few people get enough Vit D, oddly enough. There is an accurate blood test for this as opposed to relying on the sun. You need to also know your kidney and liver functions before starting such a vit regimen. (Very important to not take the wopper Vit D randomly as the doses needed if you fall below the 20 mark ARE HUGE! - I know!) Organic Olive does NOT fall into the "bad" oil catagory and carries with it many studied health benefits. It is NOT a vegetable oil. Canola oil is poison. Recommended animal butter is only good if it is hormone antibiotic free/organic/grass fed and the person does not also suffer from high cholesterol. If they go that route, be sure to get the UNSALTED as sodium is always an issue in Western diets and in packaged butter. MOST grains TODAY are poison. Period. This includes Soy (might be the worst offender). I think it is the genetically modified component in grains in the U.S and U.K. If you start researching or read Jeffrey Smith's Seeds of Deception, you will be absolutely shocked. In the U.S. and parts of the U.K,, our diets are so full of processed, toxic and GMO foods it is truly horrible. No wonder no one can figure out their triggers. One thing I would add, anyone lucky enough to have access to the five page stool print out from either the lab in NC or TX here in the U.S. will find some great info regarding their gut flora. It took five consecutive stool tests performed at home over the course of a week for me to find out I produce NO bidiobacterium. This strain is responsible for most of our gut immunity and explains a lot of my problems. Now getting it to grow back is going to prove far more difficult. . .


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## clareuk (Feb 7, 2006)

volatile said:


> I've already taken many drugs for anxiety issues...and none EVER helped with IBS.Besides...I find it VERY insulting that you think this is the problem.Do you think it's fair that person X can go to the beach, take off their shirt, flex their muscles, and have a beer...while I spend 6 hours a week in the gym and still have a scrawny body with a beer gut? Do you think it's fair I can't drink yet still suffer...do you think it's fair instead of relaxing, having a beer, and some quick dinner, I have to cook special food...and I STILL suffer?Why the $$$$$$ should I need an anti-depressant?Solve the IBS, solve my problem.


Hi Volatile,I understand why you are angry. I have also had diarrhea through all of my 20's and everyday I realise what I have missed which does make me very angry. I am now 31 and all of my 20's were lost to this. I've been unable to have relationships, had to lose my dream of going to university, had to take dead end jobs just to pay the bills, hurt my family and friends and now on top of all that I really struggle - still - to go out. I'm always terrified. I've lost myself because of permanently having diarrhea and the worry that comes with that. I am also a recluse and my tv is my best friend and only escape. I am managing to get out a bit more but my extrovert fun loving personality has been altered forever. I know how awful it is to spend the best years of your life with this,however i could never get to a gym 6 days a week so if you can you must see that as a positive aspect, I struggle going anywhere where people are now. Lately things have started to improve for me and I have gained weight as well. What I look like dosen't matter to me anymore, I am just pleased for things to be improving. I personally don't worry about how fat my stomach looks today as I won't care about that ever again. I will just be grateful if I can start to have more of a life. Many a time I have wished for it all to just end as it is mortifying having to deal with this when your friends are having fun, but there is a chance that things might get better for us. I guess this has given me a better way of looking at things, weight, spots etc.. don't matter to me like they once did. If I am fat and spotty but don't have diarrhea everyday to deal with, I see myself as very lucky. I'm sorry that you're having to deal with all this like I am. I have had the last decade destroyed by diarrhea, my dreams shattered and I know things that no-one my age should have to deal with. I know how angry you are because I feel the same and I also have a huge regret that I've lost my 20's but it has made me a more compassionate, understanding person which I will have with me forever and maybe one day I can use my experiences to help other people going through the same thing. Claire


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## Hester (Jul 5, 2009)

> I used to try and feed myself that BS for years...and finally I've snapped. I've had it...I can't keep feeding myself this nonsense.IBS sucks...it destroys your ability to have fun, to be relaxed, and to let loose.It destroys any pride you have in your physical appearance.No longer can you take your shirt off and suntun at the beach without feeling so unfit and out-of shape.No longer can you look forward to a weekend of partying with friends.I'm ***** sick and tired of this. I have put 7 years worth of effort into this and for what?It has isolated me from friends, it has sabatoged my efforts to get my body fit, and you want me to tell myself to be happy?You keep doing that and sooner or later you will snap.How dilusional must we be?I already have a therapist and that hasn't helped.NOTHING HELPS.No matter how hard I try, it is like God decided to make my life as miserable as possible.Is it fair that other people get to go out, drink, and can still flex their muscles at the beach...while I spend 6 hours a week in the gym, avoid drinking, and have to buy expensive, special food that can't be microwaved AND STILL suffer?Do that and sacrifice your 20s...and tell me why I should sing with happiness.


I see you have been here since 05, reading and trying to find help. Please believe me when I say I DO share your anger and despair. I gave up and wanted to die often. The antidepressants are NOT for your MIND!!! I cannot emphasize that enough. No one here is saying you are "depressed". I agree with the OF COURSE I AM, I CANNOT LEAVE THE HOUSE! I know that one all too well. I had to take a drug called Zyprexa. It is in a different class. All the SSRI's made me worse or did nothing at all. Zyprexa did help me to gain some weight, have an appetite and stopped the diarrhea. Reason being, the gut is loaded with receptors that respond to these types of medications. I also took an AB at the same time.There was one thread/post a while back about mast cell overgrowth in the small bowel as being found in most to nearly all IBS D sufferers. There is liquid medication to treat this condition and stop the diarrhea and often itchy skin that goes with it. Do not give up hope. Find a better doctor in GI or gut immunity. If you have not tried cycling through one of the "cycline" antibiotics, that might help you. Bacterial overgrowth is way, way more common than what was thought even last year. I read most of the journal articles. Your inability to maintain muscle tone sounds like me and I HAVE antibiotic responsive diarrhea. However, it takes whopping doses to stop the D. It finally stopped (daily) after six months of therapy and rest where I did indeed take the bodybuilding products but made sure they had NO whey or milk. The medium chain triglycerides liquid, liquid vit and minerals and I used an Arbonne "weight loss" shake to GAIN weight with Organic Soy Milk instead of Milk. It worked. I am not saying you have NOT tried everything under the sun as it looks like you have. Our disease is so damn tricky you have to be a real label reading chemist and food nutritionist just to figure out WHAT to eat. I have a husband who married me inspite of this disesse. We laugh about the gas. It is a joke with my family. I personally don't think it all too funny but there is nothing I can do about my bathroom time or the accidents. Your TRUE friends should understand this. This year, after two years trapped in my home, I was able to go back to work and even go kayaking and for short bicycle rides (two hours). I can drive a car again. Meetings and air travel are still not likely but I have hope that perhaps something will work. I DO change doctors and am now going to check out the big brains at a teaching hospital. I also go to a very good Natropathic Doctor to check my live blood for toxins and bacteria that do not seem to show up on standard lab tests done at the hospital or clinic. If I SEE a lot of bacteria, I know it is time for a kill off with my handy supply of ABs. Aftward, I go back to the probotics and a good diet. I have discovered I can drink a tad of clear gin and tonic water with lime and not get diarrhea. I don't know if that might work for you. One last thing (while I ramble), cell and tissue turnover in the body is about a six to eight week cycle. Meaning you need to be very methodical about any changes and be patient. Do not add too many things at once and don't cheat when you decide to try something. An example would be the elimination of all dairy (casin, cassinate, whey, milk protein, chocolate, milk, cheese, yogurt, cool whip, packaged goods and candy bars including most bodybulding drinks) to see if dairy is a problem for you. Taking those lactaid pills will not help someone who cannot breakdown the dairy protein molecule since the pills are for dairy sugar. I cannot have dairy. It does make me gasy and sick and seems to have no reasom to it. Now I am doing the elimination of all genetically modified foods. This is more challenging because it includes soy, wheat, grains, meat. I am a label reader extraordinairre! I have gotten good results and (used to be a bodybuilder) am finally seeing some muscle tone and definition return and I am over fifty. The creepy cellulite is gone and the abdominal bloating. I am getting back my "six-pack"! V- don't give up. You are far too young to throw in the towel. If you bring up Zyprexa (it is not commonly used for our problem) to your doc, know that even the smallest dose can make anyone very, very tired. You will not feel much like doing anything but it might make your "gut receptors forget". I had to cut their smallest dose in quarters. But it did completely slow down my gut and STOP the diarrhea. . . getting off of it after six months would be another thread entirely! (LOL) . . . I hate this disease too, very, very much. If you take PPis or ant-acids, STOP immediately! New clinical evidence clearly shows they make diarrhea from SIBO much worse. Mine lasted for three weeks after my last dose of Zegrid. I cannot even pop a Tums without yellow explosive diarrhea for three or four days. . . Good luck, my fellow sufferer. I hope you find something soon that works for you.


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## Kathleen M. (Nov 16, 1999)

volatile said:


> I've already taken many drugs for anxiety issues...and none EVER helped with IBS.Besides...I find it VERY insulting that you think this is the problem.Do you think it's fair that person X can go to the beach, take off their shirt, flex their muscles, and have a beer...while I spend 6 hours a week in the gym and still have a scrawny body with a beer gut? Do you think it's fair I can't drink yet still suffer...do you think it's fair instead of relaxing, having a beer, and some quick dinner, I have to cook special food...and I STILL suffer?Why the $$$$$$ should I need an anti-depressant?Solve the IBS, solve my problem.


The Cymbalta response was to someone else on this thread that asked a specific question about a specific thing and I gave a specific answer to that person. It wasn't about you, really I got asked a question and I answered, sorry I was a bad wrong and evil person for doing that for someone else on your topic.It isn't fair that Brad Pitt isn't coming to my house every night for a booty call. Do you think it is fair my stomach throws alcohol back up if I have more than one drink in an evening? If I'm really lucky and they aren't too strong I might be able to have two drinks while at a party, but I've ended up in the bathroom ralphing up my guts over two drinks more often than I care to count. I've been that way my whole life and somehow I managed to find ways to have fun and relax. But of course I'm lying about that, I suppose. no one can have fun or be with another person unless they are drunk. Can't happen, no human is capable, OK I should lay off the sarcasm. All this anger and angst and grief will make any illness worse, and sometimes you can't break the cycle without working on all parts of it. It isn't fair, but then I have never found anything in life that was. Sorry. I have no way to make anything fair for anyone and all those people who you think have it so easy will sooner or later have something very unfair happen to them. It is just the way life goes.Since all I do is make you more upset I think I'll leave you alone from now on. I can't see anyway to help and no point in making things worse and worse for you. That wouldn't be fair.


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## peaches41 (Nov 26, 2008)

I had to google "booty call", Kathleen, you are naughty!!I'm going to block Mr. Angry.


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## IBD/IBS Author (May 24, 2007)

Sorry to rain on your pity party, Volatile, but most of us on this site have been where you are. I was first Dx'd with IBS when I was 15, I thought it sucked. Then by 30 I was Dx'd with IBD - Inflammatory Bowel Disease. YOu think IBS is bad? Trying having both IBS and IBD.You need to rephrase your life and your expectations of it. Is it fair that you need to do this? No. But if you don't you'll drive yourself nuts. I have always socialized quite a bit within my realm of reason and doability - and that's without being able to drink alcohol, eat like a "normal" pperson, being gluten-free, and spending a good amount of 20-some years pooping my brains out. You're not alone. And if you really want help and support you'll learn to be kinder to the people who _can_ understand where you're coming from. Insulting the people on this board will get you ignored and then you really will be alone. You are an angry person right now. It's understandable. But I'm here as living proof that anger and stress and the like will only serve to make your IBS much worse. Get a grip on your anger and frustration. I've been through the ringer with my IBS & IBD. I've had to give up a career I was doing well in, and making a boatload of money doing. I can't eat or drink whatever I want. I've had to learn to scale back my life measurably. Blah, blah, blah, as we all have. But, you learn to live how you can. And you find the people out there who will accept you for who you are and what you can do. The rest of them you don't need anyway. As for cancer? I have a very good friend who would switch places with you or me in an instant. He was just diagnosed with esophageal and stomach ccancers. His prognosis? We just don't now at the moment. But even if he makes it he'll probably lose a good bit of both his stomach and his esophagus and may need to be fed through tubes for part of the rest of his life. You're frustrated. You have the right to be. And I'll even join you here and there. But, be respectful, realize you're life is not going to be like those who don't have IBS, and figure out how to move forward.


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## Thai (Aug 22, 2007)

Elizabeth,So very well put. I have wanted to respond to this thread, but I knew that what I wanted to say would not be welcomed.I was diagnosed at 18 and some 40 years later??....here I am on this forum, so that says it all.I just lost a very close friend to tonsilar cancer that required her larnyx be removed.Before all was said and done, it spread to her spine and hip.Give me IBS any day of the week!!!


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## IBD/IBS Author (May 24, 2007)

Hi Thai,Good to hear from you. And so sorry to hear about your friend.Yes, IBS stinks but at least it won't kill us! Elizabeth


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## BQ (May 22, 2000)

So sorry about your friend Thai! (((((((Hugs)))))))Volatile... (((((((((((((Hugs)))))))))))))) for you too. I know it's rough. I was dx'd when you were 3 yrs old. I know it all trust me. And I know getting upset about it ALWAYS made me feel worse. So I found my way to acceptance. Takes time & patience with yourself.. but it isn't impossible. I know a good venting is necessary sometimes too. But... I agree with Elizabeth. You need to find a way to acceptance.Holding all good thoughts for you!


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## volatile (Jun 20, 2005)

Claireuk said:


> Hi Volatile,I understand why you are angry. I have also had diarrhea through all of my 20's and everyday I realise what I have missed which does make me very angry. I am now 31 and all of my 20's were lost to this. I've been unable to have relationships, had to lose my dream of going to university, had to take dead end jobs just to pay the bills, hurt my family and friends and now on top of all that I really struggle - still - to go out. I'm always terrified. I've lost myself because of permanently having diarrhea and the worry that comes with that. I am also a recluse and my tv is my best friend and only escape. I am managing to get out a bit more but my extrovert fun loving personality has been altered forever. I know how awful it is to spend the best years of your life with this,however i could never get to a gym 6 days a week so if you can you must see that as a positive aspect, I struggle going anywhere where people are now. Lately things have started to improve for me and I have gained weight as well. What I look like dosen't matter to me anymore, I am just pleased for things to be improving. I personally don't worry about how fat my stomach looks today as I won't care about that ever again. I will just be grateful if I can start to have more of a life. Many a time I have wished for it all to just end as it is mortifying having to deal with this when your friends are having fun, but there is a chance that things might get better for us. I guess this has given me a better way of looking at things, weight, spots etc.. don't matter to me like they once did. If I am fat and spotty but don't have diarrhea everyday to deal with, I see myself as very lucky. I'm sorry that you're having to deal with all this like I am. I have had the last decade destroyed by diarrhea, my dreams shattered and I know things that no-one my age should have to deal with. I know how angry you are because I feel the same and I also have a huge regret that I've lost my 20's but it has made me a more compassionate, understanding person which I will have with me forever and maybe one day I can use my experiences to help other people going through the same thing. Claire


Claire...I feel for you. I am SO sorry you have had to live this way...your story really touched an angry, frustrated person's heart, mine. I wish you nothing but the best of health and luck!


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## volatile (Jun 20, 2005)

OK people, I've read through your responses. First, thank you. Thank you for sharing your stories which I can relate to. Thank your for your compassion, for your ears, and your soft spoken words and stories. I hope I don't vent like this again, but that will be hard to do because I am absolutely furious.IBS has destroyed my physical and social life. Because of IBS I don't do things I used to love to do...and I spend time doing things I NEVER would have done.You know I can accept this, or could, IF I was getting a fair return for my efforts.Nothing will piss me off more than when I put my mind, heart, and effort into something only to come up empty.10 years ago, it all started. I was always a scrawny kid growing up. Suddenly for the first time I had a gut. I thought it was due to a lack of exercise. Soon it became a running joke, so I decided to get in shape.I joined a gym, started to work out. It didn't matter, I still was scrawny and fat at the same time.I hired a PT. It didn't help.I went to an RD. It didn't help.The RD thought I might have a food allergy, so I saw an allergist.Nothing came back, saw a GI.Diagnosed with IBS.I was determined to solve this. Whenever I struggled in school or needed help, all I had to was put fourth my best effort. This meant staying after school, studying on Sunday, I did that and it was worth to see my results.I was determined to do the same with IBS.So I have tried a lot.I have tried:-many drugs (Zelnorm, Reglan, Amitza)-many non drugs (Miralax, Beano, Benefiber)-probiotics (VSL, Align, Jarrow)-been tested for lactose intolerance (which I have)-tested for SIBO (given Rifaxmin)and most damningly-psychotherapy-psychotherapy drugs-DIETED by giving up: -Dairy/Redmeat/Food with more than 25% of calories from fat/Whole grains/AlcoholI have spent a lot of time in medical professionals offices, spent a lot of money, it has not helped.I have inconvenienced myself, looked like a hypocondrate and slacking employee by seeing the Dr. so often despite not being gravely ill.My dietary needs have greatly inconvenienced friends and family. They are nice and good to me, but when arranging hanging out it really does become a pain in the ass...constantly...because special arrangements have to be made...and still NOTHING works.Not being able to drink has taken me out of the partying picture...and this is what people in their 20s DO! If you can't drink...you are a fish out of water at a party...you can not bond...you can not relate.It is NO fun being a spectator.I do all this...and yet still it is NO BETTER.I am furious at this.You know when people see me they say I have a gut...yet I workout 5 times a week. Problem is the muscle NEVER shows and the gut never shrinks.So all of my work in the gym is destroyed by IBS.All of my work to overcoming IBS, all the sacrifice, is failing.I say cancer would be better in the sense if you look like ###### with cancer, people understand.With IBS NOBODY understand, they think you are just making an excuse.NOBODY gets that with IBS it is IMPOSSIBLE to look fit because your body does not absorb and digest properly thus bloating your stomach and shrinking your muscles.I wanted to fix IBS because I wanted to look and be fit. It bothers me to see peers of mine get fit, and not me. I say why can't I, why I am handicapped in this way? It frustrates me that my best effort is not even close.This is why I wonder, what do I do?What am I doing wrong?Why is my sacrifice, my diet, no alcohol, which creates an inconvenience in going out, NOT working?What else could I do?Right now, I feel like I am getting the worst of both worlds.I am doing all the work and sacrifice, which is no fun, without any results.The way I see it...if I going to do all the work...I better get results.Otherwise...why not just give up...let loose...and be carefree?


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## Hester (Jul 5, 2009)

Ok, I am right. The "lactose intolerance" is a sign of SIBO. ABs will help you and staying forevermore away from dairy PROTEIN. That test is for dairy not just sugar. Lactose is a sugar. Cassin, Cassinate, Whey, Milk, Milk protein, Cheese, Yogurt, Butter, Chocolate. . . all dairy protein and very bad for you and me. It will make the "overgrowth" worse and cause malabsorbtion syndrome (which you have by describing what has happened to your body) and the doctors will NOT pick up anything. Even dietiticians do not realize how many products contain "dairy protein". You have to avoid all of that list right there! All of it. It IS in all protein bars and bodybuilding drinks. All of them. Even a small amount WILL set you off. After about a month FREE you will see a HUGE difference. I am really fairly certain on this. Read, read the labels as they hide words like cassin or cassinate or dairy protein in a label with a million other ingredients. You cannot put it in your body. You might need antibiotics to kill off overgrowth - not sure if they will help you or make you worse. Simple ones like Tetracycline are perferred at some of the best clinics here in the States. AS soon as you go to Avelox or Flagyl you risk killing off your anerobic bacteria which you probably have very little. Bifidiobacterium will die if they give you that stuff (latter) and you will need a strain of refigerated probotic that has it. Most do not have enough to reverse what we have. Most of these probotics really do not survive stomach acid to get into the colon. Do NOT take any anti-acids. Good luck.Align has dairy as do a number of probotics that even doctors recommend when they KNOW your chart says "lactose intolerent" - Go figure. What are you doing wrong? Nothing. You have your answer right here. Just be more consistant with your label reading and be very, very careful what you put in your mouth. NO DIARY, NONE! Stay way from alcohol too as you probably do not have enough good bacteria to drink alcohol right now. Maybe next year. (sorry for that news) Oh, sugars such as FOS and fake sugar and pop also set me off. Bacterial overgroth LOVES dairy and sugar. I now only eat breads from organic oat and flax. I have SIBO and Xifaxan did nothing for me. Nothing. Tetracycline really helped me and a specially ordered bifidiobacterium probotic that came in a dark jar and requires refrigeration. I take three times the dose and still wonder how much survives my stomach acid. It does make me very gurggly, but no diarrhea. So, I have my fingers crossed but am going to see if someone can make a capsule that will survive the stomach and small bowel trip into the colon. . . or there is the other direction


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## Kathleen M. (Nov 16, 1999)

One thing to remember is bacteria have figured out how to survive stomach acid since forever. (well and any other not so great environment as they often end up in a place that dries up or whatever and have to sit around and wait for the next bit of good environment so they can grow again, so they form hardened spores or other dormant states to wait out the bad times, or until something walking by transports them, as they can't really pack up and move that far on their own)Every animal and human that is not kept in a completely sterile environment has billions of bacteria in the gut. There is zero in there when you are born and they didn't all crawl in from the back end.







You got them by them by swallowing them.


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## IBD/IBS Author (May 24, 2007)

Volatile,Again, I undertsand. Been there, done that, and still doing it. You can complain, get angry, stomp your feet and cry. And it will help to vent those feelings. But, when all the venting is over it still remains that we have IBS (and for me, IBD). I've tried so many things to make my life better that I wrote a book about it. I was even to a point after about 5 years that I was feeling well, pretty normal, and living life. This continued on, with the occassional set-back, for about four more years. Then last year, wham-o, severe bloating, low-energy, allergic to Rx meds., vitamins, supplements. Found out I was gluten-intolerant plus a host of other intolerances. I've changed my diet so many time in the past 12 years I can't even count how many times anymore. IBS can be be a moving target for a lot of us. Meaning, what works one month or year, may change the next, for the better or worse. I don't know what to tell you to do. That's for you to figure out at this point. I know you've put in a lot of energy so far, but I really have to say again, stop putting so much energy into beign angry. While IBS isn't in your head, your stress levels, feelings, etc. are very tied to your gut and can make things worse. The idea of the mind-gut connection isn't a bunch of woo-woo stuff. It's real and that's how I know when my IBS is acting up rather than my IBD. My IBS acts up when I get stressed, or anxious, or angry. I'll say it again, you're not unique in your IBS frustrations. We've all been there. But, wishing that there was a magic pill, or that doctors would tell you how to cure this for the moment is futile. My mother-in-law has a saying: "Wish in one hand, spit in the other and see which fills up faster."Keep moving forward and try something different. Also, don't believe allergy tests given to you by your doctor. There are very few people who have actual allergies to food. There are, however, far more who have intolerances that will never show up with allergy testing. You can only figure out the intolerances by eliminating the foods. I suggest you look into doing an elimination diet.


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## Thai (Aug 22, 2007)

Thanks BQ,If nothing else it really did make me realize just how fortunate I really am.....even with a 40 year struggle of IBS.


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## Hester (Jul 5, 2009)

Kathleen M. said:


> One thing to remember is bacteria have figured out how to survive stomach acid since forever. (well and any other not so great environment as they often end up in a place that dries up or whatever and have to sit around and wait for the next bit of good environment so they can grow again, so they form hardened spores or other dormant states to wait out the bad times, or until something walking by transports them, as they can't really pack up and move that far on their own)Every animal and human that is not kept in a completely sterile environment has billions of bacteria in the gut. There is zero in there when you are born and they didn't all crawl in from the back end.
> 
> 
> 
> ...


 That is true but we do start out with the bifido from our mom. Perhaps the SJS burning out my bowel, took everything and I am starting from scratch without the benefit of "mother's milk" so to speak.


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## Kathleen M. (Nov 16, 1999)

But it still goes through the stomach and I never heard you don't make stomach acid for the first year or so, or only after you are done breastfeeding.It also takes getting more than just one bacterial species in there. Usually takes about a year for the full ecology in there to develop.If no bacteria could get through the stomach acid we wouldn't have food poisoning and could eat all the raw chicken and beef and contaminated produce we wanted without fear of salmonella or E. coli poisoning. If the bad bugs can get in, the good ones can use all the same tricks.


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## Hester (Jul 5, 2009)

Kathleen M. said:


> But it still goes through the stomach and I never heard you don't make stomach acid for the first year or so, or only after you are done breastfeeding.It also takes getting more than just one bacterial species in there. Usually takes about a year for the full ecology in there to develop.If no bacteria could get through the stomach acid we wouldn't have food poisoning and could eat all the raw chicken and beef and contaminated produce we wanted without fear of salmonella or E. coli poisoning. If the bad bugs can get in, the good ones can use all the same tricks.


Well, I have tripled my dose of the oral bifidio and am actually starting to get a little constipated. Hungry in the morning and lots of energy too! I actually feel pretty good, but after two years of diarrhea it is hard to be too optimistic. I just had read several articles on how the vege-cap probotics were pretty worthless because THEY do not survive stomach acid and by the time they even reach your door, more than half of the bacterium are dead. I am going to cross my fingers and hope that next year, I can say: "I am repopulated with this important strain!" I wonder if some of the real bad stuff gets in there because it is pathogenic? My live blood work yesterday looked really good, no toxins, no bacteria, just a bunch of yeast and some very "sparkly" red blood cells. . . .


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## Kathleen M. (Nov 16, 1999)

All the really good stuff had to get in there, too.Getting through the bad environment isn't just from the pathogen gene. EVERY bacteria has to be able to survive some bad times to get to its preferred environment and they are very very good at it.A lot of probiotic supplements are not made properly and everyone claims theirs is the only one and all those pills over there (whatever those pills that are different are) usually get dumped on by people selling the other kind.If they got the bacteria out of someone's colon to start with, it has a way to get in there on it's own. The trick is making it into a pill properly with the right strains and doing the right things so it survives being in a pill and getting into you. Some brands do that very well. Others do not. I think it is more about which manufacturer cares enough to make a good product more than price or any particular gimmick.


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## volatile (Jun 20, 2005)

Hester said:


> Ok, I am right. The "lactose intolerance" is a sign of SIBO. ABs will help you and staying forevermore away from dairy PROTEIN. That test is for dairy not just sugar. Lactose is a sugar. Cassin, Cassinate, Whey, Milk, Milk protein, Cheese, Yogurt, Butter, Chocolate. . . all dairy protein and very bad for you and me. It will make the "overgrowth" worse and cause malabsorbtion syndrome (which you have by describing what has happened to your body) and the doctors will NOT pick up anything. Even dietiticians do not realize how many products contain "dairy protein". You have to avoid all of that list right there! All of it. It IS in all protein bars and bodybuilding drinks. All of them. Even a small amount WILL set you off. After about a month FREE you will see a HUGE difference.


Hester, I have been dairy free for FIVE years.No dairy, no redmeat, whole grains, no food with more than 25% calories from fat, no alcohol...that is my diet.It still sucks.I DO NOT have those protein drinks, the ONLY supplement I use is Creatine and Egg White Powder.Not having dairy has gotten rid of my diarraha...BUT the awful bloating/gas/and c REMAIN!!!!!I already


> I am really fairly certain on this. Read, read the labels as they hide words like cassin or cassinate or dairy protein in a label with a million other ingredients. You cannot put it in your body.


do that!!


> Tetracycline


Is that Doryx?Look Hester...thanks for the response. It sounds like YOU got better seeing a naturapath doctor.Do you think this is what I need?Is this branch of treatment called/known as naturapath?


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## volatile (Jun 20, 2005)

IBD/IBS Author said:


> Also, don't believe allergy tests given to you by your doctor. There are very few people who have actual allergies to food. There are, however, far more who have intolerances that will never show up with allergy testing. You can only figure out the intolerances by eliminating the foods. I suggest you look into doing an elimination diet.


Do you think an IgG test is worthwhile then?


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## volatile (Jun 20, 2005)

From reading all your posts...I am wondering if there might be hope in the form of seeing a dr. with an alternative approach.Back in May there was this article http://www.huffingtonpost.com/dr-mark-hyman/5-simple-steps-to-cure-ib_b_576578.htmlby Dr. Mark Hyman.He offered a similar approach of curing IBS by getting an IgG test, eliminating those foods, rebalanncing the gut by killing off bad bacteria and adding good bacteria, and having herbal and enzyme supplements.I think he practices functional medicine.From the sounds if it seems like Hester and others feel following him is best.


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## Hester (Jul 5, 2009)

volatile said:


> Do you think an IgG test is worthwhile then?


No. I think very few people have an actual IgG BLOOD issue. On the other hand, there is clinical evidence that eating genetically modified grains alters the IgG lining in rat and pig guts. Now a German study has found certain GMOs cause human gut cancer and thicken our GI lining. IgG is our "humural" immunity. Seventy percent of our immunity is IN our GI tract. Pig lining IgG was altered after 90 days on GM grain. I won't touch the stuff now. No altered grain. (Well, I try really hard.) I find it odd that there are not "Gut Immunologists" springing up all over the world. . . just try and find one. It is impossible. There is no sure test for bacterial overgrowth either. So don't bother. If you have never tried Tetracycline as an antibiotic and you have never had a reaction from this class, you may want to ask your doctor. After getting to know you better, I do NOT think you need ANY type of antidepressant. I cannot say about the probotic. (Maybe.) If you can find a lab that does the comprehensive flora stool print out, I would do it. Mine was actually covered by my insurance because my GI doctor loves this lab and the knowledge the test provides for treatment. V, part of the issue is the LONG, LONG recovery for the gut. It can never rest. Hence, it takes forever to heal. One of my GI docs from the Cleveland Clinic said up to a year, maybe more to expect what you are doing to finally make YOU FEEL better. Hang in there and you WILL find your answer. I know it. That is why I go to the Alternative doctor with the black spectrometry (sp?) microscope for the live blood analysis. She can tell whether my gut is still "leaky". Many Western docs think the whole thing is #### medicine. I find it extremely useful and know what "good" blood should look like. I sit there and can look at my blood with her on a BIG screen and it gives us a good idea of my overall gut health/body healing. She specializes in nutrition and makes some good recommendations for diet and supplements and teas. I had a gin and soda water plus lime yesterday and am fine today. . .


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## IBD/IBS Author (May 24, 2007)

Volatile,Should you get an IgG test? Can't give you an answer, as that's up to you. I will say, though, that in my experience with all this there is no quick fix, or quick test that's going to give you that quick fix. In the past 5 years I've only seen my GI doc for one thing - to write me the prescription for my IBD medication. Otherwise I go it alone or with the help of my nutritionist/naturopathic guy. But, that's my choice, what I believe is best for me. You want us to give you answers to help you. Honestly? I can't. And won't even try to because in your angered state, if I do tell you what to do and it doesn't provide fruitful results I feel you'll then come back and be angry at me. And I know better than to open myself to that from you or anyone else. Hester is right though that it's taken time for your gut to get where it is and it's going to take time for it to get better. I've had gut issues since I was 15, I'm now 42. So, I figure it could take another 10+ years to heal it from all the damage that was done in the interim.Instead of having more tests done, that may or may not find a food answer for you. I really recommend doing an Elimination diet. It is cheap, will give you results for only your body, and at the end of it you might just find out that food isn't your problem. Or, if you do find problem foods then you know what to eliminate and it might help heal your gut.


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## volatile (Jun 20, 2005)

Hester said:


> No. I think very few people have an actual IgG BLOOD issue. On the other hand, there is clinical evidence that eating genetically modified grains alters the IgG lining in rat and pig guts. Now a German study has found certain GMOs cause human gut cancer and thicken our GI lining. IgG is our "humural" immunity. Seventy percent of our immunity is IN our GI tract. Pig lining IgG was altered after 90 days on GM grain. I won't touch the stuff now. No altered grain. (Well, I try really hard.) I find it odd that there are not "Gut Immunologists" springing up all over the world. . . just try and find one. It is impossible. There is no sure test for bacterial overgrowth either. So don't bother. If you have never tried Tetracycline as an antibiotic and you have never had a reaction from this class, you may want to ask your doctor. After getting to know you better, I do NOT think you need ANY type of antidepressant. I cannot say about the probotic. (Maybe.) If you can find a lab that does the comprehensive flora stool print out, I would do it. Mine was actually covered by my insurance because my GI doctor loves this lab and the knowledge the test provides for treatment. V, part of the issue is the LONG, LONG recovery for the gut. It can never rest. Hence, it takes forever to heal. One of my GI docs from the Cleveland Clinic said up to a year, maybe more to expect what you are doing to finally make YOU FEEL better. Hang in there and you WILL find your answer. I know it. That is why I go to the Alternative doctor with the black spectrometry (sp?) microscope for the live blood analysis. She can tell whether my gut is still "leaky". Many Western docs think the whole thing is #### medicine. I find it extremely useful and know what "good" blood should look like. I sit there and can look at my blood with her on a BIG screen and it gives us a good idea of my overall gut health/body healing. She specializes in nutrition and makes some good recommendations for diet and supplements and teas. I had a gin and soda water plus lime yesterday and am fine today. . .


Hester...thanks!1) Again..confused...can you spell out, methodoloically-What your IBS symptoms were-What you have to done to control it-The current status of your IBSand-A step-by-step guideline for meI am confused on if I should see an alternative doc/GI doc/RDI also am confused if you say an alternative doc...if this means naturapth or functional medicine...or holistic2) Are you saying as well that with time I eventually could drink alcohol?You know this whole "healing" sounds like what happens when people get ulcers. They have to go really bland for awhile, but in time it recovers and they are good.


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## volatile (Jun 20, 2005)

IBD/IBS Author said:


> Volatile,Should you get an IgG test? Can't give you an answer, as that's up to you. I will say, though, that in my experience with all this there is no quick fix, or quick test that's going to give you that quick fix. In the past 5 years I've only seen my GI doc for one thing - to write me the prescription for my IBD medication. Otherwise I go it alone or with the help of my nutritionist/naturopathic guy. But, that's my choice, what I believe is best for me. You want us to give you answers to help you. Honestly? I can't. And won't even try to because in your angered state, if I do tell you what to do and it doesn't provide fruitful results I feel you'll then come back and be angry at me. And I know better than to open myself to that from you or anyone else. Hester is right though that it's taken time for your gut to get where it is and it's going to take time for it to get better. I've had gut issues since I was 15, I'm now 42. So, I figure it could take another 10+ years to heal it from all the damage that was done in the interim.Instead of having more tests done, that may or may not find a food answer for you. I really recommend doing an Elimination diet. It is cheap, will give you results for only your body, and at the end of it you might just find out that food isn't your problem. Or, if you do find problem foods then you know what to eliminate and it might help heal your gut.


I hear you about the frustration and anger...but...I really would to know what you would you recommend.I've been trying for five years, and it has consumed a lot of my 20s...you seem to be doing better.Similar to what I asked Hester...what options do you think would be good to look into?


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## IBD/IBS Author (May 24, 2007)

Volatile,First, you have to try to change your attitude about this. Whether you like it or not, at least for the time being, IBS is a part of who you are. It would be no different than if you were to receive a cancer Dx. You would ultimately accept it and move forward. If you've read my book, then you know that when given a Dx for a chronic illness, like IBS or IBD, I believe we all go through the five stages of grief - denial, anger, bargaining, depression, and finally acceptance. In what order each person goes through these stages isn't always the same, and it's not always smooth sailing. You're obviously stuck in the anger stage - just look at your username. Again, not saying that you aren't allowed to be angry, you are. And, even when you do accept things, that doesn't mean anger won't come back. It does for me from time to time, but I also realize that anger sucks energy out of me and serves no positive purpose. How do you get to acceptance? That's you're own personal journey, too.Second, I would also understand that food/diet may or may not have anything to do with your case of IBS. There are many of us who find that food is a problem. But, there are just as many people who are not affected by food at all. Plus, to complicate things, what you may be fine with food-wise today, you might not be next month or next year. I was never gluten-intolerant until 14 months ago. Now, if I even look at anything that contains wheat I bloat up like a blow-fish. And, the lactose-intolerance that I experienced for years, is now gone. Third, realize that the body, your body, is an amazing thing. Think about it for a minute, you are able to think, walk, type, read, eat, speak, move your thumb, big toe, etc. all without a lot of effort or any thought at all. The body is an amazingly complex thing. And the expectation that we all have that doctors are these spectacular people who know it all and can fix it, is simply ridiculous. Doctors are simply people with an advanced degree. They are learning every single day. And believe me, there are those out there who want to figure out IBS and how to "cure" it. Why? Because they'll make a boat-load of money off of all of us. But, not every doctor has an interest in every illness. And therefore it's up to us, the person with the problem, to search out a doctor or nutritionist or naturopath or whatever who is specializing in digestive disorders, will listen to us, and work with them to try and figure out what's going to work for you. I have personally given up on gastroenterologists for anything other than tests like colonoscopies. I now either work with my Osteopathic doctor or my RN/Nutritonist/Ayurveid/Enzyme specialist. Realize, however, that I pay to see the RN guy out of my own pocket. My insurance, for which I pay out the wazoo, doesn't cover this, but he's been so helpful that it's worth it to me. Also, since I don't drink, or eat out a lot, I see what I'm saving on those activities as what I spend to see him and for the supplements and vits. I take. As for what exactly you should do or try - I've already mentioned a major one - do an Elimination diet. You can do a search on the internet to find out how to do it, or get Elaine Gottschall's book, Breaking the Vicious Cycle, and follow her diet for at least 2 months. If you have any serious issues with food you'll know it after doing this. Like I said, blood tests, etc. only identify food allergies, NOT food sensitivities. I would also find yourself a good probiotic. Good ones are found in the refrigerator section of health food stores, they have at least 5 billion live organisms and include a variety of strains. Take these at least once a day, better twice a day. I would also figure out some sort of stress reduction that will work for you - you can try everthing from yoga, to CBT (cognitive behavior therapy - there is a forum about that on this site), to hypnosis, to rhythmic breathing, or a walk in your neighborhood. Learn to change your life. I haven't had a drink, without repercussions, since I was in my 20's. So now, I choose not to drink. I eat out much less than I used to. I quit my corporate job and am now self-employed. I still travel but differently than I used to. I realize that the world is not black and white, right or wrong, good or bad. I now have a lot of grey space in my world which allows for flexibilty depending on how I am feeling. I don't have a hoard of friends, but I do have about 10 very good ones who understand me, my sometime limitations, and accept me for who I am not what I can or can't do. I suggest you really read through this site and see what has helped people. It's a hit-or-miss game. What works for one doesn't work for another. My Dad has IBD and can eat anything or drink anything he wants and my Mom has IBS, she knows what foods bother her but she eats them anyway, and she knows that stress makes her gut worse so she works on doing yoga, etc. But, despite having these illnesses they both, like me, live good lives within their limitations. It can be done if you just accept that this is where you're body is at right now. It might change. It might not. So learn to live despite the IBS. It's not easy. I have my good days and my bad days, both physically and emotionally. It's hard when something that was working, stops working and you have to start over again. It has happened to me too many times to count in the past 20 years. But what am I supposed to do? Give up? No. I might get angry or cry for an hour. But, then you have to pick yourself up and move forward and keep living. Also, do I get frustrated or bitter that I can't have a beer or a gin and tonic without spending the night in the bathroom? You betcha! But, it's my choice not to have those things that bother me, rather than to be sick. It's a choice I make, just like a person with cancer can choose to do chemo and radiation or not. Start, by changing your username. We take a lot of energy from what we call ourselves. It sets us up for how we are. If you want to remain volatile, then I, and nobody, can help you. But if you want to change, then see yourself in a more positive light.


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## Hester (Jul 5, 2009)

V - I thought I gave a methodical answer but do not see it. . . I have had mild bowel problems most of my life. With stress, it was always worse gas and D. In 2008, a drug reaction burned out my bowel and also made me very susceptible to illness/flu/colds. I thought maybe I had food poisoning or a bad flu on and off through 08. Then in May of 09, I became so sick with diarrhea I could no longer leave my bedroom/bathroom. I received every test you can think of from a GI specialist, some twice. They wrote me off as IBS-D. I lost so much weight I nearly died - 35 percent of my total body. I had severe diarrhea not controlled by imodium and the doctors tried all sort of Rxs. I really thought this was it - the big one. I could not get out of bed and lost all of my hair and nails. A friend recommended a local ND who specializes in nutrition and supplements and the LIVE BLOOD ANALYSIS. At this point, I had been reading several journal articles about SIBO and how common it really is. She found my live blood to be inflammed and full of bacteria (no way to know what kind) but my white cells were NOT responding. I called my doctor and asked to try and AB and that I knew I could tolerate Tetracycline. Because it is mild, he put me on a whopping 2000 mg a day for two weeks. It did not work totally, so we kept extending the time. I had liver and kidney panel function tests in between to confirm I was NOT going toxic with such a hefty dose. The ND kept me on liquid vit and minerals as well as biotin, lysine and fiber - we kept switching fiber because many made me worse. I have always avoided dairy but started to notice issues with grain. I grew better and better - less diarrhea, less gas with the AB. I stayed on it for about six months and now just take it periodically when I get D or am really gasy. I changed GI docs to go to a fancy guy who does that week long stool test. That test was great! It gave both my regular GI and me all the info I needed to see what was wrong with my flora. I ordered online the missing good bacteria. I went back to the ND for another live analysis and looked 90 percent better. We added an anti yeast product. I believe you have my list somewhere of what I take. So, I use the GI doctor for tests - real test or when I need a look inside. I need them for prescription meds and refills. Most trust my knowledge because I work in healthcare. I use my ND for nutritional advice and to see how my blood looks. I also see my PCP and an infectious disease friend to sometimes tweak my plan. I come here to read what might be new - like the Mast cell studies from Germany.







Good luck! I currently, have good days and bad - but nothing like it was. I can deal with some gas, pain and bloating now and then. I can drink alcohol but it does "burn". I still avoid genetically modified foods and dairy.


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## knothappy (Jul 31, 1999)

Believe me i know how you feel even though i am old 66 i have had this demonic diseae for over 25 yrs and i hate every min of it maybe some do not have it that bad and can have a life...for me i have to down 10 12 imodium xanax lomotil just to go tothe dentist, dr, beauty shop etc...then feel like junk dried out for the rest of the day..i feel like i have something far worse but these idiots we call drs just keep on with the IBS.. for ..It;s Bull S### diag. in my book..this ruins lives..i cannot take my grandkids out for an afternoon where do i put kids when i am on the toilet?? in with me??no way leave them alone no way!!!! cannot even take my dog on a long walk...lets stay close to home just in case the demon hits..cannot work eat out take trips...and this is supposed to be life i feel dead just not buried yet. i feel bad for you young people with this ibs...i wont have have it for too much longer dirt nap is close for me


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## gemy26 (Jul 28, 2010)

for goodness sake Volatile, the people on here obviously have a LOT more patience than I do. I am 26, have had IBS for years, but only diagnosed a couple of years ago. This means i spent years being fobbed off by docs and worrying that ther e was something poss life threatening going on that they were missing. I also have pretty constant headaches and frequent migraines. So, by your reckoning as a 26 year old who should only be going out to drink I must have no friends or social life. Sorry to burst your deluded bubble, but I have great friends who don't care if I don't drink when we go out, or if I only stay for an hour or so because I'm not too well, or if I cancel last minute. Really, just get over yourself. Sorry to all of you lovely patient, sympathetic, helpful people if this lowers the tone, but this jus really got to me, really wish I had the energy to work out for 6 hrs...


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## Little Hedgehog (Dec 2, 2008)

Cancer is terrible. I don't wish this upon anyone, not even my worst enemy. I'll take IBS over Cancer any day. Cancer is a terrible disease and the sooner we cure it, the better.I've been lucky to see nobody in my family die from it but still, it's a terrible disease that nobody deserves.


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## jlfc (Jun 4, 2010)

It makes me really sad that you say you'd rather have cancer than IBS. My grandfather is currently dying from cancer and it is heartbreaking to watch. At 85, he still wants to fight, to hang on to life by doing chemotherapy even though he's not likely to live much longer with or without treatment. Cancer eats it's way through your body, making you sicker and sicker. And the treatment options are no picnic. If you've ever seen someone go through chemo, you know how incredibly sick it makes that person and how it actually increases the chance that they die sooner from a simple infection that you or I fight off without even knowing it. The saddest part is that you say you wish you had cancer because then you would have a legitimate excuse to look bad. A bloated tummy and "wimpy" looking muscles in no way compares to how a cancer patient looks. Think about being so weak you can't get out of bed at all, not being able to eat, losing so much weight you look like nothing but skin and bones. Think about losing your hair, having sunken eyes, your face gray. Think about looking on the verge of death. Think about knowing that you are on the verge of death. Is that what you really prefer? And do you think cancer patents think much about how pretty they look to others? They are just grateful to have another day to fight, another day to have experiences, be with people they love. Having IBS is frustrating and hard. But it, in no way, compares to the horror of cancer. You really need some perspective.


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## peaches41 (Nov 26, 2008)

Wonderful post jlfc. You have got it spot on. As a cancer survivor I can so identify with what you have written. Some people have no idea.


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## Zeb (Jul 30, 2010)

Volatile, I am sorry to read about your problems and I have no doubt you're living a very frustrated life right now. But attitude is everything in life -- and it is something you really need to work on. Self-pity does nothing but complicate and compound your situation. Sure you're suffering and it all sucks but your self-pity and bad attitude about all of this is just adding one more thing to the fire that doesn't need to be there as well as does more harm than good to you. You may not be able to totally control your IBS condition but your attitude about it is something that's totally within your control. You can choose to pity yourself or you can choose to make the most of it. Most of your posts here are you just venting -- and that's a good thing. It gets a lot of the #### on your mind out of your system (pardon the pun). Try to see your life as "a glass half full, instead of half empty". As I say, I realize you're miserable, but you really don't want cancer. It's a thousand times worse than what you're going through right now. You think life is dishing out a bunch of #### on you (pun intended), then read about all the people out there that are much worse than you and you'll put a lot of what your saying into a different/better light.All the best to you.


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## volatile (Jun 20, 2005)

Thanks all!


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