Fellowship of IBS-Sufferers

Hello,

I am new to the C-C and thought I should start a group for fellow sufferers of Irritable Bowel Syndrome.  This is my first post.

Let us swap our IBS eating and survival tips, as well as our IBS horror stories, if you so dare ;)

So, whether you've got IBS-A, -C (like me), -D, or -P, please introduce yourself and let the discussion begin!

Everything You Need to Know About IBS (and Then Some)

by Red Violin

 * * *

Part I – DICTIONARY OF DIFFERENT TYPES

 

IBS-A :  "Alternates" - Swings back and forth between severe constipation and severe diarrhea.

IBS-C:  "Constipation" -  Rock-hard bowel movements less than twice a week. Severe bloating.  Pain after every meal.

IBS-D: "Diarrhea” - Liquid bowel movements more than twice a day. Getting "the runs" after nearly every meal, or after eating a "trigger food."

IBS-P: "Pain" - No predictable/detectable bowel-movement pattern (constipation or diarrhea), but considerable pain with each episode and/or meal.

 

Part II – BASIC INFO AND TESTING

 

If you've noticed that you feel particularly bad after eating a certain food, try cutting it out entirely for a week or so and see what happens.  Then, re-introduce it to test if that food really is the culprit.  If symptoms return, then you know you've hit the nail on the head.  If you're just plain unsure sure what's hurting you altogether, try eliminating the "traditional" IBS-triggers (dairy, caffeine, solid chocolate, carbonated drinks, rich cakes/pastries, sugar, anything too greasy/oily/high-fat, red meat, etc.)

Early satiety and abdominal pain after every meal is typical for IBS.  So, it is definitely a good idea to eat small, frequent meals instead of trying to force down three big ones.  If you are unable to tolerate volume, choose calorie-dense foods like nuts, dried fruit, beans, lentils, oats, granola, low-sugar protein bars, almond butter or peanut butter.  Liquid calories are also a great idea. Glucerna and Boost make delicious (and IBS-safe) vanilla and chocolate shakes. They are fortified with protien, calcium, and every vitamin you can think of, but have no added sugar or lactose, and very little fat and cocoa.  Perfectly IBS-safe, nutritious, and yummy!  (As an alternative, you could put soy-protien powder in lactose-free milk or fruit smoothies.) Try drinking these in-between meals, (or even as a dessert, since, with IBS, you can no longer eat "normal" desserts like ice cream, cookies, or cake.)

Unfortunately, receiving an "official" IBS-diagnosis from a doctor does not give you much more than if you were to diagnose yourself.  What I mean by that is, IBS is incurable. Chances are, a doctor will give you the same recommended treatment as you would give yourself:  For example, all my doctor told me upon diagnosing me with IBS-C was "Eat fibrous foods, aviod triggers, and take laxatives."  That's it.  Telling someone that have IBS is like telling a person with a sore back that they have Sore Back Syndrome.

However, even though medical science cannot cure you, it is still important to get an official diagnosis from a doctor in order to assure that your symptoms are not caused by another (more serious and/or treatable) digestive disorder or disease. (For me, it was Superior Mesenteric Artery Syndrome, which is FATAL without proper treatment! IMAGINE what would have happened if I didn't press forward and get tested properly!)  Another example: Many people who think they have IBS-D (which is not cancerous) could, in reality, have IBD.  The confusion exists because many of the traditional IBS symptoms mimic those of other conditions.

Unfortunately, there is no one "test" for IBS, because it is a functional disorder (not a disease) in which the intestines appear normal but do not function properly.  Basically, a "negative" result on every test = a diagnosis of IBS (it's a catch-all.)  Tests that you must have include: An endoscopy, colonoscopy (with biopsy), ultrasound, CAT scan, and blood-test.  ONLY if everything on all five tests come out "normal," then you know you have IBS.  YOU HAVE TO GET ALL OF THESE TESTS DONE BEFORE YOU CONSIDER YOURSELF TO HAVE IBS.

Depending on the type (-A, -C, -D . . . etc.) and your bowel's individual peculiarities, "the IBS diet" varies dramatically.  For example, people with IBS-C generally tend to avoid white-flour products because those are known to cause even more constipation.  Conversely, those with IBS-D deliberately eat refined flour for the purpose of hardening their stool.  Many with IBS have a wheat and "leafy green" intolerance; I, however, find that my particular case is not aggravated by those foods - quite the opposite (the fiber helps move my bowels).

So, all in all, composing your own, personalized IBS-diet is part guessing-game (eliminating and re-introducing foods to see what "triggers" you) and part research (of your specific type – ie. People with IBS-C tend to react poorly to refined flour and vice versa for type -D, etc.).

 

Part III – IBS CAUSES EARLY SATIETY AND MAY THUS TEMPT YOU TO EAT LESS AND LESS – WHY YOU SHOULDN'T GIVE IN TO THAT URGE, AND HOW IT NEARLY KILLED ME

IBS often makes you feel full fast.  This means simply intuitive eating may not work well anymore.  You will have to learn to eat when you are not hungry.  Because of your IBS, maybe eating only three slices of bread all day may make your stomach feel nice and satiated until tomorrow, but the truth is, your body is still hungry.  After going through literally the worst physical experience of my life due to pain-induced undereating, I cannot help but to want to warn you about the dangers of it. What I’ve been through, I wouldn't wish on my worst enemy.

Outside of my temporary hyper-metabolic mode endured by 70% of all patients recovering from severe malnourishment, my real burn rate is probably far less than yours since I have very little muscle and a porous bone structure (I am 79 lbs, small-framed, and have osteoporosis). According to my doctor, my body burns only 1300 a day, sedentary. 1200 of those calories go toward simply keeping my organs functioning and my blood flowing:

-The heart needs 144 cals just to keep pumping
-The kidney needs 144 cals just to keep filtering urea
-The liver needs 276 cals just to keep filtering toxins
-The brain needs 276 cals just to stay out of a coma
-The skeletal muscle needs 360 cals to keep its mass and not trigger osteoporosis

Cutting food intake because of IBS-induced premature satiety full puts your body in a state of alarm (often called "starvation mode"), in which it pushes to conserve every bite you eat rather than burn it. (Which is why you may feel like you have to eat little in order to maintain your weight, when in truth if you slowly begin eating more and more, your body will simply adjust to the higher intake). Without enough food, you may start feeling cold and tired as your body is forced to break down muscle and tissue to fuel its vitals. Undereating slows metabolism so that you need fewer calories to maintain a higher weight; as muscle tissue diminishes, your burn rate reduces. Depending on how long your metabolism stays slowed and how low your calorie intake goes, your body will begin to react in bad ways. (Trust me, I've felt them all. More about that later). Only if you start eating enough again will your body slowly raise your metabolic rate. Since the brain is metabolically very active (uses about 20 to 30% of a person's energy intake at rest) undereating will result in changes in mental functioning. Simply skipping a meal can hamper problem-solving ability, energy, motivation, mood and responsiveness, since the body responds to energy deprivation by first shutting or slowing down nonessential functions, then altering activity levels, hormonal levels, oxygen and nutrient transport, the body's ability to fight infection, and many other things that impact brain function. After a month of undereating (due to my SMA Syndrome and IBS), I still felt okay, sure. But after that, I went through a year constant apathy, sadness, and hopelessness. Four of those months made up my entire fall '07 semester at the University of Virginia. I can honestly say it was one of the worst times of my life.

Being underweight has caused its own set of problems, like osteoporosis (porous, brittle bones), coldness, bloating, constipation, exhaustion, muscle aches, mood swings (awful feelings of depression), leukopenia (low white blood cell count), amenorrhea (lack of menstruation), chest pain (from pressure on the aorta by the SM artery and the duodenum), hypotension (low blood pressure), and chronic hypothermia (constant body temperature of 95 degrees, since my body apparently thought it was in a famine and so it couldn't afford to burn more calories to reach a healthy temperature like 98).

My surgeon told me to my face that I was slowly dying of starvation.  He said that, according to the World Health Organization (the WHO), a body mass index (BMI) at about 16 is considered starvation. Under 15, you are at risk for cardiac arrest and other organ failures. A BMI under 18.5 is underweight, and above 24 is overweight. My BMI post-SMA Syndrome (at 74 lbs) was a 12.7. It's now almost a point higher since I'm nearing 80. People like me who are very lean can't afford to be starved by IBS or any other gastrointestinal condition, even for a short while.

 

 

 PART IV – HOW DO I KNOW IF MY IBS IS STARVING ME?

 

The symptoms that I mentioned above (osteoporosis, leukopenia, amenorrhea, chronic hypothermia, etc.) only start to appear if your starvation is advanced. Hopefully, you will never reach that phase.

 Here are a list of symptoms of the earlier stages of undereating:

 Constipation: If nothing goes in, nothing can come out. When I was eating only 1000 or so calories a day, the most I ever pooped was once a week.

Pains in the chest, ribs, sides, lower back: When deprived of food, the body begins to burn fat and muscle at the same rate. If you are already lean, so your body may feel compelled to start atrophying organs (which are muscles) right away, as did mine.

Headaches / difficulty staying awake: The only type of calorie the brain can use is a carbohydrate. It can't use protein or fat (which are the types of molecules your body stores as energy). If there are no carbohydrates to spare (ie. low blood sugar caused by recent undereating) it will ache and want to shut down, since it cannot easily use the fat or muscle stored on your body (only the carbs you've recently eaten).

Cramping / bloating: If there is no food in your gut (and thus no stool in your intestines), all that space can be filled with air instead. Cramps and constipation go hand-in-hand.

General sense of weakness and fatigue:  If you put no fuel in the car, the car won't start. When I was undereating, I could hardly walk down the street without literally feeling like I was going to faint. I would actually sit down on curb to take breaks on the way to class.

Lying awake in bed with a panic-stricken heartbeat (This symptom is a little more advanced than the others): While you sleep, that is the time your body uses digested food to repair muscles and "refresh" yourself. This may sound odd, but when you don't give your body enough to properly conduct its nighttime repairs, it refuses to let you sleep in the hopes that you will eat something more before going to bed. It's a basic survival instinct. Low blood sugar is often the culprit for insomnia and heart palpitations.

 

* * *

 

I hope this helps, everyone! :)

~Red Violin

This is the most informative post I have ever seen on the subject. Thank you! Maybe it would be good as a new thread.

I'm so glad you've got things figured out. The osteoporosis thing is awful. If you want to talk, e-mail me.

Signs of IBD (often initially misdiagnosed as IBS) that do NOT occur in IBS: waking in the night for an urgent BM, extremely frequent BMs and/or urgency, blood or puss in the stool (not to be confused with mucus, which is sometimes seen in IBS AND IBD), and rapid weight loss (like 20 lbs in 10 days).

I just started CC and am also new to having IBS (-D and -P, though not constant thank goodness).  I found this wonderful website for IBS sufferers that has information as well as a really awesome forum/message board with tons of great advice, hope it helps!

 

http://www.ibsgroup.org

 

Hi there, I was really glad to find this as I was just diagnosed myself a week ago. They were a bit confused on mine because I kept gaining weight then losing it within two days and then I'd gain it back again :(. My ibs is definetly ibs-d dominant.

They gave me some pills, Symax duo tab and it seems to be working pretty well, though I just had an attack about an hour ago (still have pains).

 

But I don't want to be a pill-popper so I've decided to go and try a new life-style diet.

 

 

So it's nice to know there are others out there. It's hard to talk with people about this.

 

-Roz

Hi, I was diagnosed with suspected IBS a few months ago following a number of digestive problems and told it may or may not have been triggered by severe appendicitis I had had and the subsequent operation. There was some hope that it might settle down once I had fully recovered from the operation but it hasn't so there were further appointments etc and I got diagnosed and given medication to take before each meal.  I also suffer from problems with acid so a combination of an anti-spasmodic before each meal and gaviscon/remegel after seems to be just about doing the trick.  But I'm ridiculously bad with tablets so I keep forgetting and not exactly getting into a routine! 

Long term I would like to figure out what my triggers are and change my diets/habits rather than relying on pills so I suppose sooner or later I will have to try and start the process of elimination.

One thing that I have found hardest is how patronising people can be about it.  It's such a sensitive subject to talk about that I don't want to say 'Sorry I'm late to work, I've been unable to move from the loo since breakfast' but if you say 'IBS' it seems to have 'Oh is that all' effect.  As everyone hereknows, it's not all!

Anyway, that's my rant .  I'm Donna and I'm definitely an IBS-D although I do suffer bad cramps and pains at times too.  The D is more consistent than the A so I assume the cramps are triggered by particular foods etc?  I've got a lot of figuring out to do.  Great to meet you all anyway x

Oh one other thing I just thought.  Since my op and the problems and the diagnosis I seem to be losing my shape (not gaining weight, just getting a little flabbier).  At first I put it down to not exercising very much because of the op but that was months ago and I'm still feeling a bit 'squishy'.  I've never worried too much about diet because I seemed to keep the weight off but now I'm watching what I eat a lot more because I just feel so stodgy all the time.  Could this change be part of the IBS?  Or is that wishful thinking and my luck with eating what I want has run out?

So many questions...

Hi everyone... I've had IBS-A for about 5 years, since I was 12 and we went through everything to findout what it was, even did gluten free diets and tons of medical tests. I have finally figured out something that sort've works for me most of the time...

I also have GERD... I take nexium or double prilosec for that

Breakfast- Decaf green tea, oatmeal or oatbran with "mushy fruit" like bannana, papaya, mango, mellon, etc... strawberries are also usually fine... Peanut butter, and my newest discovery:chia seeds! they don't upset me!

Lunch- Baby spinach salad with turkey and lowfat dressing (hummus mixed with lite italian, or something of that sort) , cooked (grilled) mushrooms and sundried tomatos,    Clif kids bar, Not the pb one... and a piece of less mushy, but still kind've mushy fruit- aka mellon, pineapple, apple w.o skin, or strawberries

Snack- hummus (low fat made with chickpeas and grilled artichokes, garlic and spices, SOME tahini) on triscuts with tomatoe paste

PB2 powdered peanut butter mixed with soy pudding or soy yougurt, layered with a mild cereal- oat baced work best, not too high in fiber, not corn based...

Dinner- lean protein (salmon, tilapia, perch, swai, chicken breast, turkey breast, occasionally pork tenderloin) with lots of fresh herbs, wilted baby spinach and potaoto or sweet potato either steamed, boiled, or baked

Desert- SMALL! 1/4 c. pudding with a few black berries

Its really been working for the past couple weeks. Mine is super stress induced.

 I'm a runner... I get sick durring before and after practice sometimes. It's awful! I don't know what to do... Immodium causes C... Sometimes durring a race I come close to sprinting off the track to a bathroom.

Ahh! The gastro doc said to try pepto bismol b4 races...

Good luck to everyone... PS- tea ideas? Chamamile is blahhh,, I eat it if I have to, peppermint upsets The GERD. What else is calming?

Hi all....I've got myself ISB -D and -P of course! Diagosed a year or two ago...I've always had a slightly more sensitive stomach than usual BUT after getting salmonella overseas, things never quite righted themselves so I was diagnosed with 'post-infection IBS.'

For a long time I suffered with it quite a lot - lot of pain, couldn't eat certain kinds of food etc. But after a couple of years I now live without too much trouble and it only bothers me occasionally. I know what to avoid (for me, dairy is a major trigger) but sometimes I do get caught out with the occasional 'flare-ups'.

I'm grateful I don't have it any worse though, my brother has ulcerative colitis....not fun :(

I B S is awful! i find it so frustrating that there is no scientific reason for it, yet it effects me everyday.

 

I have found triggers to be: garlic, onion, raw fruits, raw vege, fatty food, artificial sweetners and general over-indulgance. Also stress! and unfortunately alcohol :(

 

Ive been trying taking pro-biotics and peppermint oil capsules, but havent noticed it helping that much.

Im in medical school, and the other day we were learning about "channelopathies" in physiology. apparently research is being done into if IBS is an example of a common channelopathy- whereby our gut is basically over-excitable. I thought it was an interesting idea, and might do some literature searches. If that is the problem, maybe we can find a solution :)

Heh there,

I've recently been diagnosed with IBS too, after a year of suffering..grrrr.

I'm in recovery from anorexia at the moment, so you can imagine how PAINFUL my IBS gets when I have to re-introduce fats and triggering-foods?

I'm not sure what 'grade' it is, but triggering foods are things like,

Aspartame
red meat
Pineapples (even tho i LOVE them grrrrr)
Carrots (sometimes)
eating a lot of fruit or veg in the day, eating fruit late at night...

 and anything high in fat really!

I've been prescribed 'mebeverine' which do do the trick, when i remember to take them  oops!

Nice to see others have the same problems!!!

 

i thinjk endoscopy refers to colonoscopy, i did 4 ultrasound, one of them included the abdomen other 3 were of the pelvis with a ca125, i got an ultrasound of the stomach (in brief it showed good results) although the ultrasound were meant for gallbladder, breast and rest of the abdomen, i had all blood tests done but nothing was found.....ibs is accompanied by tiredness the day after an attack and functional muscle pain, i suffer from tension headache too which is why i am often tired. i read early satiety is ibs related, before ibs i used to eat a lot, i haven't lost weight since the onset of ibs, maybe the fear of bloating made me eating less food which in turn resulted  later early sitiety

I am (almost) 40 and have had IBS for 5 years (that I remember.) I self-diagnosed several years ago, and went to a doctor who didn't really care. He wrote me an Rx and said goodbye! I did alot of reading and found out about fiber helping to regulate. I'm not sure which IBS I have. After every meal my stomach would turn into, what I like to call a human pinball machine. I would describe it as being able to feel my food go thru EVERY section of my intestine! And I would have the urge to go for several hours. Almost like I was about to have diahrrea. But nothing would happen. Then, a couple of times a month, my stomach would swell up as if I were 9 months pregnant. The cramps were so bad! It hurt to sit or stand up straight.  Which, of course, was not good for my work attendance.

Finally went to a gastro doctor. He tested me for celac's and other things. And finally agreed it was IBS. I "think" I've figured out my trigger foods: anything carbonated, chocolate or anything with lots of sugar, greasy foods, and red meat. To combat this on a daily basis, I take fiber with every meal. Unless it's a bland salad, I take fiber. I am never without it!  It has truly helped. I rarely have an episode now, unless I get careless eating trigger foods and forget the fiber.

I also take an antidepressant: Celexa. It has also helped.

need an answer: i am wondering, is absence of stool, a symptom of ibs?, doctors tell me it is a severe type of ibs, or just a lazy colon if nothing is found in the tests done! in ibs i read that bowel movements are very infrequent (ibs c) and people often do strain in order to have a bm or eliminate stool, and eliminate mucus instead of stool, so it can be ibs right? i had abdominal ultrasound scan , and a colonoscopy and several blood tests done....they told me all is in my head...since then i went to other doctors and showed the tests i done with that gi doctor, andthey agree with him, so can ibs be that severe as to have to use laxatives in order to eliminate some stool? i feel my waist exploding is this due to fecal backup? this has been occuring lately, because i stopped taking my stool softener but i don't want any meds to be able to loo!!! i hate to take meds when a problem can be solved? also : can laxative still help you to go when you are obstructed? and does bowel obstruction brings pain with it? i have just bloating not really pain (severe pain i mean) ... i don't think in bowel obstruction you can handle pain but not sure....i know that if pain is severe it can interrupt a good night sleep...! which it doesn't for me!

i hope to get a reply soon

Cortex_toom:  Absence of stool can definitely be a symptom of IBS.  If you remain constipated even though you: 1) take every diagnostic test the doctor could possibly order and they all come out negative (IBS is a diagnosis of exclusion), and 2) if you are eating enough calories to be healthy, whether maintaining or trying to loose weight (because any degree of starvation can cause constipation)...  than IBS-C is indeed a likely candidate.

Hi everyone,

 

 

I have been diagnosed with IBS since 3 months now, my problem is that one month before that I took too much courses of antibiotics, the bacteria is gone away now but the pain is not, I’de love to hear about how did it start with you.

 

For me it is mostly a pain issue, I have small occurrences of constipation and diarrhea but very often and will not last more than a day or two but the pain is constant and not going away day and night.  In the beginning this was causing me feeling ill and unable to be focused this also gone away but the pain my main issue is not going.

 

Ive been through many many tests.

 

1. Stool analysis and cultures (Many Times) - Negative
2. Occult blood (many times). Negative
3. Endoscopy (upper and lower). All okay except for the stomach and duodenal where I hade duodenal ulcer. but the doctor says this has already healed.
4. Barium meal and follow through.
5. Urine analysis and culture. - Negative 
6. Blood tests and culture. - Negative

 

So what about the coming life, before this event I really had a very good digestive system. And is there any other tests I should do please help I feel like I lost my life I can not be happy about anything I delayed many important and promising events because of this bad thing, I bought many things on the net that says cure in 35 days and so but they are BS.

 

What is the best in controlling the pain, any idea?

 

 

Hi Jawadnimri, welcome to the club. Are you saying that antibiotics for some unrelated infection caused your IBS, or that antibiotics were used to treat it?

Unfortunately, three months is not a very long time to learn what makes you feel worse or better. There is no quick fix and it could take you many more months to figure out what works for you.

A lot of people with IBS really have other conditions that aren't yet diagnosed. Some suffer for years before finding out it's really something else, like colitis or Crohn's. The tests you had were to look for these other diseases, but the tests aren't foolproof and you'll probably have many of them repeated.

Experiment with the foods you eat. Research how to do a proper elimination diet. Cutting out a single food for a day or two is not enough to learn what triggers your symptoms. Common triggers are raw vegetables, dairy products, and high-fat foods.

Internet cures. Those people are sharks. They know that we're in pain and we'll spend any amout of money to make it go away, and they're taking advantage. If treating IBS was that easy, word would spread very fast. All they are selling is false hope and ultimately disappointment. It's depressing that those kinds of people exist. *grumble*

My family spent thousands on alternative therapies trying to make me well. Personally, I started getting sick at puberty and was tested, tested, tested, and treated for IBS for about ten years before finding out it's not IBS.

I understand that this is disrupting your life and makes pleasure seem impossible. All you can do is keep pestering your doctor(s) or get a new one. For pain, try anything that's safe for you - pharmacy stuff, acupuncture, massage, elimination of trigger foods from your diet, or meditation. Some people get prescriptions for neurogenic pain killers, special medications that make your brain "forget" to pick up pain signals from the gut. These and many others tend to be constipating, so it's definitely something to work out with the help of your doctor.

I sincerly hope that you find relief soon. Bitching about it with other sufferers helps, too. :)

I would have to agree with ser25, just be careful with the acupuncture, I did a chinese version i think and i was throwing up for days after! I have had IBS for 4yrs now but mine is more extreme. See i start puking uncontrollably and it will last for days. I can even puke water up! (Sorry tmi) Mine is definitely stress related so watching my stress is the best thing, the next is not eating red meat or pork. I gave that stuff up when i was diagnosed. I now only take my pills when i eat meat. My Husband wants me to take them 3 times a day like the dr says to, but i just hate taking all of those pills! We are in the process of TTC. So i am wondering how many of you have IBS while trying to get pregnant? Does it effect anything? How can you eat more once you get pregnant with the lack of appetite? My dr says i can still take the pills he ahs me on but i really want to go as natural as possible!! Any suggestions, or even stories you have been through whill trying??

The 'IBS diet' is talked about on here - does anyone have a good lik to an example that they can pls post? Thanks!

j_whitney, I wish you the best with TTC! Pills suck, for sure.

eringo2, the IBS diet is an individual thing. Everyone is different. Some people have problems with meat, others do best with lots of protein. There is no single IBS diet that works for everyone.

Basic elimination diet: make a list of foods you suspect are linked to your symptoms. These might include dairy, nuts, raw vegetables, refined sugar, eggs, wheat, cured meats, yeast, whatever. Next, cut them completely from your diet, one at a time for two weeks each. Read food labels carefully to make sure it's not hidden in the foods you're buying. Keep a journal of how you feel, what symptoms you have. For example, "day four without dairy, feeling more crampy than yesterday but also more energetic".

This is only one method, and it's best to design an elimination diet with your doctor. I didn't find it all that useful because my condition is mostly unrelated to what I eat, but a lot of people with IBS can narrow down their triggers to some extent with this method. Good luck!