# Investigating my IBS, how to find a way to live?



## Lexer (May 9, 2013)

*Phase 1*

*Me:* Male, 33 years old, BMI 24.

My stomach problems *started 2007* (when I was 26 years old) , at that time it just relapsed a couple of times a year and on usually lasted about 3-4 weeks.

*Symptoms:* Swollen stomach, pain(lv3) under the bellybutton, heartburn, diarrhea.
*Relapses:* 2-3 / year and lasts about 3-4 weeks

I went to the health center a couple of times and they did a feces test and a *colonoscopy *without any findings. I began to use the bulk medicine *inolaxol *that did help the pain.


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## Lexer (May 9, 2013)

*Phase 2*

When we was about to get our first child(2009) my stomach decided to take over my life. A time that should have been about joy become a very hard time for me to live.

*Symptoms:* Swollen stomach, pain(lv4) under bellybutton and left rib, heartburn, dizziness, nausea, diarrhea.
*Relapses:* more or less constant

I went to a new health center where I got the following examination: *colonoscopy *(my second), *gastroscopy*, *ultrasound*, *CT scan* and a couple of *feces and blood tests* yet with *no findings at all*.

I was labeled with IBS and the doctor prescribed a couple of *antidepressive*(Venlafaxin, Sertralin, tryptizol) and the only one that made any good difference at all was tryptizol. It was not the solution to all problems but it made it a bit better at around 20-30mg/day.


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## Lexer (May 9, 2013)

*Phase 3*

A couple of years went by and the problems just got worse. From being a vary social person I become more and more alone, I avoided social meetings as far as possible. I began to get chronic neck pain and that was not a good combination with my job/interest (programmer).

*Symtoms :* Pain(lv4), discomfort and swollen stomach, dizziness, nausea, neck pain.
*Relapses:* 2 weeks / month

I went on a *CBT *that of course did not solve any of the stomach problems but it did give me a different view on life. I started to try to make social meetings to work even if it was hard and this feelt like a good start.

Tryptozol gave at this point more side effects then positive effects so we *stopped antidepressives*.

I could not even go to a movie without worrying me to get so much pain that I had to leave.

I tried the *LCHF diet* in a couple of weeks with no relief.


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## Lexer (May 9, 2013)

*Phase 4*

A year went by and the problems did not want to fold. I got to a *gastro doctor* that prescribed me a lot of medications to test(in order): *Asacol *400ml(2x2/day 1 month), *Egazil*(0,2mg 2x2/day), *Omepraxol*(20 mg), *Primperan*(10mg at need), *Papaverin*(40mg 1-3 at need).

When on Asacol I got at the end *more intense pain* under the belly button (lv6) at times so I had to lay down a couple of hours. This was a *different level of pain* that I never had before.

A couple of weeks later I got more intense pai*n* now lvl8, *I have never had so much pain in my life*. I went to the ER but when I finally got a doctor (after 7 hours of incredible pain) the pain hade began to reduce. They suspected the appendicitis based on extra pain when pressing lower left stomach and on small elevated infection in blood. They wanted me to come back the next day but at this point most of the intense pain was gone and no elevated infection could be found. They thought that it was probably some kind of virus.

I was *sick-listed* for 2 weeks and this is when I started the *FODMAP *diet. The intense pain did come back once a week but around lvl 5-6.

*Symtoms :* constant Pain(lv4-8), discomfort and swollen stomach, dizziness, nausea, neck pain. More pain in stomach when lie on side
*Relapses:* Always but in more or less extent


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## Lexer (May 9, 2013)

*Phase 5*

I tested the low *FODMAP*(Chiken, Rice, Potato, Biff, clementine, banana) for 1 month, it was not easy but I had to try. This did tell me a couple of important things; *food was not the main problem* with my stomach (as I already suspected) and that I do *tolerate lactose and gluten*.

I asked if the ramped up pain could be due to the medications that I have tried but the doctors was sure that this was not the problem and that it was "just" my IBS that was playing out.

*Symtoms :* Pain(lv4-6), discomfort and swollen stomach, dizziness, nausea, neck pain. More pain in stomach when lie on side, yellow diarrhea (probably from the FODMAP)
*Relapses:* Always but in more or less extent


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## Lexer (May 9, 2013)

*Phase 6*

I did not felt that my doctor was taking my case seriously, I could not believe that you can have *so much pain without any possible way to relief*. I began to dig even dipper on internet about stomach problem. I found out about: *feces transplant*, *Clostridium *and *Hypnoses *fitted for IBS.

I asked my doc about this and the feces transplant was *not for IBS* patients at this point. The *Clostridium test is not reliable* so he prescribed me *Flagyl*(type of antibiotics 400mg 1x2/day) and *Emgasan *250mg(2x2/day) for 10 days but this *did nothing* and the doc means that this proves that it's not Colostridium so no need to try *Rifaximin *that just been registered here in Sweden? The Emgasan gave me even more diarrhea so I stopped with this after a couple of days.

My Doc have set *me up with a Hypnoses* doc but im not sure if this is really the special kind of hypnoses that IBS demands. He has also *booked a new ultrasound* of the stomach.

*Symtoms :* Pain(lv4-6), discomfort and swollen stomach, dizziness, nausea, neck pain. More pain in stomach when lie on side, Pain in left leg.
*Relapses:* Always but in more or less extent


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## Lexer (May 9, 2013)

Phase 7

I have *never liked antidepressive*, If they helps stomach problems they will probably also affect you in other ways and they might not always be good. Im also vary sensitive to medications like this, but At this point I have so much pain that I have to try this.

I was prescribed *Cymbalta *60mg. Just 1 pill gave so* much bad side effects* after 8 hours that I was close to go to the ER. The doc said that this was the starting dose but I will *never *ever start an antidepressive on a lvl like this again!

The doc have been suggestion *Tryptizol *again and even if this is not solving all my problems it might help me to live to the *hypnoses *sessions.

At this point I have been at so many health center and hospital appointments and it seems that there is *nothing to do to relief my pain*. They are not prescribing any stronger painkillers for stomach then over the counter* Ibuprofen and Paracetamol* that none of them solves my pain at all. *Diklofenak *seem to help a bit but they are *dangerous *to take for both the stomach and the body.


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## Lexer (May 9, 2013)

Phase 8 (rearview mirror)

*Personality*

I have been look at the *timeline *of my life, what could have *triggered this kind of problems?* I know that When I was 15 years old I went to Italy with another family where I got homesickness and I suspect that this was the cause of my stomach pain that I got at this time. When home it was gone again. I also know that I had minor problems when doing important stuff in school and so on but this should be normal. I am really a vary sensitive person even if it doesn't show.

My stomach problems have* often(but not always)* been connected to *happenings *in my life and staying home have often solved alot of symtoms temporarily(*not anymore however*). This is a bit strange becouse I have always been *social *before the IBS. Now a simple meeting with a couple of friends that I look forward to could be a *big problem* becouse I know how *much pain* I probably will get.

I see how a baby could* affect your life a great deal*, especially when you are not feeling fully grownup yourself.

I have had high goals and demands for myself and pushed harder then I probably should the last 10 years of my life. I did always have my own projects that I felt should have been finished yesterday and so on. It's *possible that this have been a factor* in making my stomach so bad. I have now droped all of this extra work on my spare time and tries to lose some computer time. But after 2 month I can still not see any improvements in my stomach.

Im often *over analyzing things* and want to be 100% before making a choise never gamble, this could even be about buying cheap replacabel things lile internet cabels, ligts and so on.

I do almost *never feel stress as a problem *but it's fully possible that my *subconscious reacts much more?* At this point I do however not see much stress more than over my stomach problems. Yes me an my family do not really feel that we are living at the right place right now and there is discussion about yet another child.

*physics*

I have a* rear skin disease*(nothing to do with stomach) that have demanded me to *take antibiotics*(for example *heracillin*), its possible that this is the root to my problems but if so the *Flagyl* should have been making a diffrence of some kind?

My dad that got the same rear skin disease as me also got *ulcerative colitis*. My brother that also have the rear skin disease *do however not have any problems at all with stomach*.

I have tried diffrent *workout *a couple of times in periods but never seen any positive effect on my stomach.

*Other IBS Patients*

I see *a lot of IBS patients* that is helped by a new diet but I have *never ever been able to pin point any food that could cause problems* to my stomach. Yes I could get diarrhea from some kind of food but it was always easy to see from what and why.

I also see that *a lot of IBS patients have diarrhea(IBS-D)* and that this demands multiple toilet visits every day and I understand that this might couse big stress but I do not have this problem (yet) maby becouse of Inolaxol. Most of the time its enouth with one visit to the toilet a day.

The *problem with IBS* is that it includes more or less all problems with stomach that doctors can´t or do not care to find couse to. All thay know is that its not harmful. Some patient have a vary light version while some have a vary severe version(like me and probably most of you here). This makes it vary hard to explain to both doctors and friends. Usually thay just ends up to think that IBS is just a little disconfert in the stomach. I would be glad if they just removed the word IBS and replaced it with induvidual names based on the real symtoms.

*Conclution*

I feel like I have *tried everything there is* but with no real findings and my *IBS is only getting worse* this makes it hard to see *any point of life* sometimes.


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## arraywhite (Jun 26, 2013)

IBS is not the end of the world! I've had it all my life and have had tons of embarassing moments in school and in life. All my friends know about my problem and even my boyfriends.

I think a lot of people feel as down and annoyed as you with IBS, I know I do. But let's keep checking out this forum, maybe we can all find a cure.


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## Lexer (May 9, 2013)

arraywhite said:


> IBS is not the end of the world! I've had it all my life and have had tons of embarassing moments in school and in life. All my friends know about my problem and even my boyfriends.
> 
> I think a lot of people feel as down and annoyed as you with IBS, I know I do. But let's keep checking out this forum, maybe we can all find a cure.


Thanks, but don't forget that IBS is only a term of a group of problems. Its like saying I have a skin diseases, It does not really say how bad it is. The general term IBS do usually not mean seriously problems, most does not even need to see a doctor about it. I thought my posts would make it clear that I have a serious condition of IBS. If you really have as serious problems with your IBS as I have you should understand.


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## Kathleen M. (Nov 16, 1999)

How serious an illness is, and how severe you have it doesn't always equate to how miserable and how much "your life is over".

There are people with devastating illnesses that hugely limit what they can do, but they have an attitude and coping skills that mean they live very fulfilling and valuable lives. I'm often shocked by how much some people I know who have things that are generally much worse than even the most severe IBS are able to do.

Now it is true that a lot of healthy people do not understand how disruptive severe IBS can be, and even some people with mild issues may not realize it gets a lot worse.

Definitely give the hypnosis a go, if you haven't, but do ask if they are doing a protocol specific for IBS and if it is one that has data to back it up. Some of the mind body things do a tremendous amount for IBS pain (as it is in the nervous system, not the gut and doctors cannot at this time find which nerves of the 100 million nerves in the nervous system of the gut is the problem, it isn't that they have a great and wonderful test that would pinpoint exactly what is wrong with the Enteric Nervous System and would give you the perfect treatment but they just refuse to use it, we really have no way to test it well. There have been a few tests in research labs that show something is wrong, but not to the point where it is routine in the clinic to use these biomarkers of IBS or that they can give you a treatment specific to which thing is off in there).

The problem with just giving you powerful narcotics is that over time they may make the gut nerves much more sensitive to pain, so giving you a bit of relief now to cause much worse problems in a couple of years is not always something the doctors are willing to risk.

Do they have any clinics specializing in pain. They may not be any more likely to give you narcotic pain meds, but they may be able to find the thing that works for you.

I can understand you don't want to take antidepressants, especially if you tend to be sensitive, but sometimes they do help a lot.


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## Lexer (May 9, 2013)

Kathleen M. said:


> How serious an illness is, and how severe you have it doesn't always equate to how miserable and how much "your life is over".
> 
> There are people with devastating illnesses that hugely limit what they can do, but they have an attitude and coping skills that mean they live very fulfilling and valuable lives. I'm often shocked by how much some people I know who have things that are generally much worse than even the most severe IBS are able to do.
> 
> ...


How much problems you got with different type of pain is individual, something that one rates to lv 9 might be lv 4 to another. Also something that looks like hurting a lot might in reality feel vary little based on how the individual body is constructed, so pain is a vary hard(if even possible) thing to compare, all we can compare is how much problems each individual rates there pain and this is also what matters, don't you agree?

As I said, IBS is just a term of problems bound to stomach. The only thing we really know is that nothing have been found at Endoscopy, X-ray, blood and feces samples but we also know that some of these investigations is not 100% safe, sometimes patients have 4-5 endoscopy until the doctor finds any evidence.

Its still fully possible that you have problems with stomach fluids, nerve damage in stomach, damage in central nervsystem(like MS), food allergy, diverticulosis, unstable mind, extra sensitive subconscious(for stress), liver problems, appendicitis problems, kidney problems, temporary volvulus and so on. How much trubbel you are experiencing can only be measured by yourself, no one else have the exact same problem(IBS are not the same thing as IBS), same body, same mind, same subconsciouse and so on.


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## Lexer (May 9, 2013)

According to my doctor hypnosis has about the same chance to fix IBS problems as placebo got, around 40%. But I will try this out with a open mind.

I am right now beginning Tryptizol and its only in hope to get a bit less pain so its possible to live with it for a while longer. But Tryptizol is really only a treatment for a symptom like almost all other medicine doctors prescribes for "IBS".


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## Kathleen M. (Nov 16, 1999)

Depends on the study, some studies with some protocols it is more like 70% got better.

There is individual variation but some people with some objectively measurable severe symptoms that would have me give up are out there living incredibly rich and fulfilling lives. I don't think they are overcoming nothing at all and it is so much easier for them than everyone else.

Sure some people will rate pain differently. I'm not saying you don't have a lot of pain, but that even people with severe pain from things that everyone with it has severe pain (or severe disability) often do some pretty amazing things, so just because you have an illness doens't mean life can't have meaning and your life has no value and you will never do anything with it. There is always hope, but you don't have to believe that if you don't want to.

All the tests you have had test for OTHER illnesses (and we are pretty good at finding the other things that usually have more symptoms than IBS does). They cannot at this time test for what we KNOW is the problem with IBS. So if you really have IBS all the current tests in the clinic will find nothing. That doesn't mean that IBS does not exist or there is nothing broken in there. It is like going in a dark cave and saying the sun was destroyed because in the dark cave you can't see it. If you don't look where the problem is you won't see anything wrong.

What we can see of what is wrong with IBSers isn't ready to be done in the clinic by your doctor. Some things are found in research and maybe one day they will be able to do a test and prove to you that you ahve something wrong and that something wrong is IBS. The doctors aren't testing for things they can't test for. It isn't that they don't want to look, but they do not have the tools to see things.

We really don't have a good way to explore what is wrong with the enteric nervous system even if tests in research labs do indicate there are some problems with it.

You seem upset the doctors aren't testing for something where there are not tests they can do at this time. Like they were deliberately withholding some test that would give you an answer. There aren't tests for the various things we found in research labs to be going on, and we don't have specific treatments developed yet, but don't give up. Science is not over and done and there is nothing left to be understood.

Most treatments for most diseases merely treat the symptoms and do not completely and totally restore you to perfect health. Even when they can cure things a lot of times the treatment causes enough damage that you are never the same.


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## Lexer (May 9, 2013)

Kathleen M. said:


> ....


Lets just leave the question of "worth living or not" to each individual. We have all our own limits for pain and mental stress, there will always be induviduals that impresses while there are others that give up alot easier, you can´t really blame any of them if you havent tried there life.

You are still refering to IBS as 1 illness but we all know that IBS is just a term for any problems that is related to the stomach and that lasts at least 30 days. If you push your doctor you will in most cases get a more detailed investigation like endoscopy, x-ray, ultrasound but if thay dont find anything(like IBD) you will get the IBS label for sure.

When you have the IBS label you will not get any more investigations, instead you will get diffrent medications to treat symtoms that you have.

If you ask doctors what IBS is thay will say things like the intestine is more sensitive and that the motor function of the intestine is not working properly. Thay could also say that the nerv filter between the intestine and the brain is not as fine as it should have been. The rekommendation (becide the medications) will be eating healthy, eating small portions, exercise, avoit food you get worse on, maybe they even send you to a dietician. Finnaly thay say that it usually last about 5-6 years.

I expect a lot more from a Gastro specialist that got about 5-10 years of studies + some years of practice. Why not check intestinal flora, parasites, neurology(for example MS), H-pylori, Clostridium, feces transplant, measurement small intestine pressure, antibiotics(like Rifaximin), mushrooms and so on. Yes I have search on internet a lot but there is probably more thinkgs to check but im no Gastro sepcialist with a degree.

There will never be a treatment for IBS becouse that would be like saying that we have a cure for skin diseases. Yes you can read on internet about a lucky few that have solved there "IBS" but this treaments is always specific for the induvidual in question, maby its about a bacteria, maby its about food allergy and so on.

Im sorry if some of my posts seems a bit agressive but im really tired of this IBS label. It also feels strange when I can google alot of possible reasons to stomach problems but a trained doctor do not comes up with these suggestions, instead I have to suggest them my self?


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## Kathleen M. (Nov 16, 1999)

Well I spent months not being able to walk more than a few feet without doubling over in screaming hot pain and could not pick up anything more than 5 pounds because of even more screaming pain.

So I know how hopeless things can look.

I also know they can get a lot better and I'm glad I didn't just off myself as soon as the going got tough. I hope you find something that works for you. For me knowing that people can overcome incredible amounts of pain and devastating disabilities actually inspires me.

Maybe in your country IBS is misdiagnosed. But here you have to have at least 6 weeks over the last 6 months with 2 of 3 very specific symptoms. Not just any old symptoms and none of them have to do with the stomach (now functional dyspepsia is same but with stomach symptoms rather than issues with pain that goes along with changes in stool consistency and frequency).

There are a number of functional GI illnesses and some doctors do lump them all together.

IBS is a very specific functional GI illness and when you do research studies on people who meet that criteria they have way more in common than you would think if you decided for yourself that IBS is just a grab bag or random diseases.

With EVERY illness once they have run the standard tests, made the diagnosis, they treat the symptoms. It is what doctors do for everything. For a few illnesses that are typically self-limiting anyway they can cure them faster and more reliably than your body does it by itself, but for most things there is no one fix and it is healed and perfect, most of what doctors do is treat symptoms or cut the bad stuff out. Most chronic illnesses are managed, not cured. So IBS isn't that different from having diabetes. They treat the symptoms, try to control the complications, but they can't fix what is wrong with you.

The tests we have for nerve problems for IBS are NOT yet consistent enough for use in medical tests. The biomarkers are used in research and there was a test for awhile, but you know what it told you, you had IBS and you got the same exact medications as you would without the test. I think that is why they aren't doing it in the US anymore, it didn't really do enough to change treatment so didn't get used enough, and wasn't worth the cost.

IBSers do not have the same kinds of neurological problems that you see in MS, like paralysis, loss of control over limbs, profound weakness, so those tests will be NORMAL in IBSers because again you are not testing for something that is wrong in IBS, Not all nerve problems are identical.

I got my treatment in a clinical study. I know it worked for 70% of the people in my treatment arm and the drug tried in the other arm did about the same once you checked to see who actually got an effective amount in, so I think it is more than just me. Really there are researchers out there working for effective treatments, just it doesn't get as much attention as things like pediatric brain cancer, so it may take awhile. But they learn a lot about IBS every single year. They haven't decided to never, ever try to find out what may work and decided we will never, ever have any treatments or anything like that. Some people are working very hard on the problem. But like I said more money goes to things like pediatric brain cancer, or things such as that. We get some, just not as much as the things that kill people.

Doctor's only deal with evidence based medicine. Dr. Google includes all alternative theories of reality and all kinds of psuedo-science. Doctors are not trained to believe in or use psuedo-science or other theories of reality to base treatments or diagnosis on. If you want evidence-based medicine go to a trained doctor. If you want something else you need to go to some other kind of healing practitioner.

But I should give up trying to give you hope, it sounds like you don't want me to try. So this will be my last response. I do hope you find some hope and find something worth living for, but I'm not going to try to be the one to give that to you anymore.


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## Lexer (May 9, 2013)

Kathleen M. said:


> ...


Thanks, I appreciate your input!

I never wanted this thread to be about what doctors do or not do. All I look for is suggestions on how I could proceed with the stomach investigation, maybe there is something me and my doctor have missed, maybe here is more patients with the same problems as me? Or maybe another patient could have some help from my history.


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## Kathleen M. (Nov 16, 1999)

I'm sorry if my attempts to explain what I thought of your situation were not what you wanted.

You have really been through the diagnostic wringer from an evidence-based trained MD perspective and even gotten some medications not normally used for IBS but tried just on the off chance may it might work even though we have no reason to think it will. Pretty much everything Dr. Google will spit out that you have not had is not anything ready for the clinic (either not reality based, highly experimental and the studies on it are for other disorders, or something only a non-evidence based healing practitioner will do).

Asking doctors to do things outside of their training and scope of practice is kinda like asking a pig to tap dance. Everyone who asks their scientific evidence based doctor about a non-scientific hypothetical treatment basically gets the same response you did, even when it is for any other disease in the world. It isn't just IBS that gets this.

I'd try the hypnotherapy, I've seen it work for a lot of people here and several of the studies are showing that is much better than placebo, but sounds like you weren't going to go.


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## Lexer (May 9, 2013)

I understand, but why is feces cultivation test not a option? Why could not fungus be my problem?

I will of course try the hynotherapy, Im open to all suggestions at this point.


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## Kathleen M. (Nov 16, 1999)

A very small percentage of the bacteria in the feces are able to be cultured in the lab. They have done some investigation with PCR where you look at the DNA, but we really don't know, yet, of the thousands of species that live in there which ones you really need, and which ones cause what problem and what balance of different kinds is the best or if differnet people with different issues have problems only with certain combinations even if those don't bother people who don't have IBS, etc.

Much is not known, and even of what we do know there isnt' much we can do as a planned treatment. I mean we could do fecal transplant after fecal transplant hoping we find the right combination for you, but we don't know enough about the interaction between the host and the bacteria to just do it randomly hoping we don't make things worse. We know sometimes when someone recolonizes from the healthy people in their environment they get a combination that seems to be more problematic than the one they had before we cleaned them out. So I don't know that just because it doesn't bother a healthy person it won't make you worse.

Now to get rid of a pathogen that might kill you it is worth the risk of getting a slightly more gassy set of bacteria in there.

Fungi generally are kept in control by the enormous numbers of bacteria and it seems at least in part by our immune system becuase the only scientifically accepted fungi overgrowth in the intestines usually is only in people with severely compromised immune systems. We just normally are not the best hosts, but there are a few that do OK in there and a few that are beneficial and are even given as a probitoic. So it isn't all fungi are bad, either. Just they looked for candida in IBSers back a couple of decades ago when they first started thinking it must be the problem. They didn't find anything back then, and nothing much has come along scientifically to make us go all those alternative medicine people's thought that candida is the source of every single disease on the planet and every symptom any human has ever had might have some merit.

Again, you want something Dr. Google coughs up you gotta go to the same kind of person proposing that as the reason. Read something from a naturopath you probably need to see a naturopath, same with chiropractors and all the other types of professionals who claim they cure IBS when your physician won't.


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## Lexer (May 9, 2013)

Yes I understand that doctors usually only do what thay are taught(or less) to do, there is doctors that goes the extra mile but is risky as you say.

*But!* Its not impossible that I have Clostridium, no test have been made, Flagyl could make the symtoms better of Clostridium but its no a rule. There is many patients that needs other medications or even feces transplant to get better. So why not check for this Clostridium?

I have talked to my regions infection unit and they said that when a patient have problems with stomach(like me) thay always take a feces cultivation to rule out the most comon problems(that they can treat) like salmonella, Clostridium, parasites and so on. Some times thay need to do more then one cultivation to finde any evedence (as with endoscopy). This have never been done on me, why?

It is also not uncomon that doctors gives there patients medicin like rifaximin(about 40% success) to see if it can balance the bacteria flora. Yes most doctors do not know what bacteria to kille and let live but rifaximin have been working on some "IBS" patients. When I got to try Flagyl it was pritty mach a wild guess, it could have done a diffrence,

I agree that its not likely that I have problems with fangus BUT there is a possibility.

You say alot of things, that this is not possible and that is not possible, where do you get all your information from? Are you gastro specialist? Or do you have any links to fresh studies about things like this?

You seem to be vary active on this forum and at this point you shoule be well aware of that when a person have problems like me(like most here) there will be a constant search for a solution. We already know that it will not be a obvious solution and this forces us to also try things that is less likely to solve the problem but that do have a small chance of doing so. You want to avoid ending up with the comment "You will have to learn to live with this", that will really take the last breath out of you.


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## Kathleen M. (Nov 16, 1999)

Oh, you meant routine stool testing, that I think should be done, but we have alternative medicine testing clinic here that do mreo than the usual check for pathogens.

Now C. diff usually causes severe diarrhea, often bloody diarrhea more than pain, so I don't know if you match the criteria for testing, but a standard test for standard pathogens seems reasonable to me.

Rifamaxin is used for SIBO (as well as some food poisonings and again that diarrhea is usually much more sever than you see in IBS, usually for the diarrhea so bad you end up in hospital for IV fluids, mostly they let food poisoning run it's course as you can CAUSE C.diff by overtreating with antibiotics when you don't need them, espeically when the GI flora is already getting messed with by severe unrelenting watery diarrhea).

SIBO treatment is not about balancing the bacteria, it is about flushing out the bacteria living in the small intestine that should not be there. Typically they come back in 1-6 months and each round of antibitics is less effective than the one before.

I'm a scientist, I read a lot of research as well as have a lot of training (Ph.D. in biology with a concentration in toxicology). I often go to the research papers and dissect what really is going on, not just the headlines that get in the regular press. So basically I'm going off the same evidence the doctors go by, and I also know at what stage some of the research is.

I will conclude with some people the surrending to the fact they have an illness can be the first stage in personal healing (even if they don't get rid of the disorder). The constant battle of finding rarer and rarer other reasons for the illness and getting test after test after more and more invasivie tests and never ever believing anything the doctors say about what is wrong, typically, in my experience, and the data, tends to just make a lot of symptoms much worse.

I've been through a couple of struggles with a couple of hard to diagnose things and I'll tell you getting yet another test result as "totally normal" never, ever made things better. Now for one we had one more test to do and that found something (but it was a logical routine matter), for the other we decided that since the only treatments that were available are safe and they seem to do me some good, doing an invasive and painful test isn't really needed.

So please don't suggest I have no idea what being sick every fricking day of one's life is like. I post a lot here to try to help people. For what it is worth, even though my IBS is better, I will NEVER be well, I will NEVER have the energy other people have, i have NEVER been well, so sorry if I had to learn to live and thrive and create a life worth living despite my problems. Now I'm a lot less sick that other people, but I am not, nor ever will, be in perfect health and full vitality. I didn't even get to do that as a child. I never have had full vital health and I never will.

I'm sorry you had your health taken from you, but don't assume no one can possibly understand what is it like to never have a good day in one's entire life.


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## Kathleen M. (Nov 16, 1999)

And with that I really am out of this thread, and probably wil not respond to you again. I really don't need to get this riled up because of how someone questioning why I would have knowledge after decades of study or what my motivations for posting are.

I really don't have that kind of energy and need to spend what vitality I do have in more productive and positive things. You can choose what you choose, and I hope you don't decide to kill yourself over this as you can live a fulfilling life, even if you aren't in good health ever again.


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## Lexer (May 9, 2013)

I have now been on another ultrasound and they found fatty Liver this time. This is a bit strange becouse I only drink about 3 beers a year and im not overweight.

I have tried allot of medications but they have all been temporarily (2-4 weeks), the only medication I have taken under long time(1 year) is Tryptizol.

Kan the fatty liver have something to do with my IBS?


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## Bet Sobon (Jul 2, 2013)

Hi Lexer, First of all, I am sorry for what you are going through. I know how tough it is.

Even though you don't think that food is causing your problems, it likely is. If your brother and father have skin issues and ulcerative colitis says that all of these issues are likely auto-immune issues. I had IBS for decades before I found out what I was eating was causing the problems.

At this point, your system is so damaged that no drug is really going to help. You have to heal your gut. All the meds and the antibiotic have likely destroyed any healthy gut flora you had. You have to build that back up.

Start from scratch, the SCD diet is just chicken broth you make yourself and pureed carrots. Then you slowly add foods back in. It sounds difficult to do, but you want to be healthy, don't you? You may think that foods like gluten are not causing your problems, but they likely are or are a big contributor. Gluten has been identified as a main culprit in IBS and UC and Chrons flares. Also, gluten and all grains are FODMAPS. If you are sensitive to FODMAPS, you are probably sensitive to gluten.

I know it's hard, you have been through so much. But there is light at the end of the tunnel. If you see 'my story' I just found the answer after suffering for 40 years. I do take anti-anxiety meds (Zoloft and Trazedone) which help. You just have to find the right one that doesn't add to your issues.

Here are two pages I follow with a lot of good advice:

http://chriskresser.com/

http://scdlifestyle.com/


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## Lexer (May 9, 2013)

Thanks Bet Sobon, I hag also been recomended GAPS and SCD diet. I will not do any of that right now, but maby after the vacation. Food can´t be totally ruled out but its strange that I can´t see a clear source maby my stomac only like a vary samll part of the food.

I have now talked to my gastro doctor and he said that what thay found was a vary light fattyliver and this is nothing that I should think about becouse ultrasound is a unreliable way to diagnos fattyliver in (something about compareing colors of two organs).

I suggested a feces cultivation again and he did still not understand why this not was done already. But he also said that I did not thought that it would give anything becouse I have hade my problems so long. If anything would show it would be parasites. Most of the things that is found with a cultivation can´t be treated and are self healing. He will send a order on it anyway.

Hi also said that I will probably not get any hypnosis becouse the unit where he works do not believe in it as a Treatment for IBS. I have contacted another unit in this region where thay always sends there IBS patients to this kind of treatment, we will se how this plays out.


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