Red Violin Battling SMA Syndrome

Posts by redviolin87


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Forum Topic Date Replies
New Members Reston, VA - NEWBIE! Sep 16 2009
05:57 (UTC)
4

Fellow Restonian here! Well, I'm away at UVA right now... but I grew up in Reston and love it to death :-)

Welcome to CC!

Health & Support Fellowship of IBS-Sufferers Aug 12 2009
10:26 (UTC)
5

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.

Health & Support Is it okay to take a multivitamin and a vitamin d supplement? Dec 17 2008
06:36 (UTC)
7

Be sure to check this with your doctor, but from my own experience I believe that if you have a true deficiency, then 1400 IUs should be fine.  I'm 21 but have osteoporosis (long story. . .  and no, it's not from an eating disorder!) so I've been prescribed a 50,000 IU Vitamin D supplement to take once a week for two months.  No, that's not a typo - it's actually 50,000 IUs!  And this is on top of the 800 in my daily multi-vitamin.  So, 1400 doesn't sound like too much for someone with low levels. (Most women over 50 are recommended 1200 IUs, vitamin-deficient or not.)  After a few months, however, you should get a blood test done to see if you're back to normal.  If so, you should return to the recommended 800-1000 total IUs per day (if you're under 50 years, 1200 if you're over), so you won't eventually overdose.

 

Hope this helps! :)

Health & Support Tales from the Georgetown Hospital Surgical Ward (and Beyond) Oct 20 2008
16:54 (UTC)

Thank you, healthynhappy!  Your prayers and encouragement mean a lot to me :)

The Lounge Look too young for my age Oct 02 2008
21:57 (UTC)
27

I'm recovering from a lifetime of Superior Mesenteric Artery Syndrome (never heard if it? See the Wikipedia article I wrote) which causes severe emaciation. I used to be 74 lbs (12.5 BMI), but now, nine months after a major surgery, I have battled my way up to 87 lbs (Improvement! But, I still have a long way to go...) I am 21 years old and 5'4.5".  Thanks to small-frame genetics and my gastrointestinal condition, I've always been the "littlest" kid in the class while growing up, and until today, I am frequently mistaken for being in my early teens.

That said, I had a conversation with the founder of my hometown himself at the City Festival in July that went something like this:


Him: How long have you been living here?

Me: My whole life.

Him: Wow. So, are you starting intermediate school this fall?

Me: Oh, um, I'm in college.

Him: ... What!?

Me: I'm 21.

Him: *Stares in shock* Goodness, you must've found the fountain of youth! Tell me where it is!

Haha!  A clever save, I must commend him. I can't even count the number of times I've been mistaken for a 12/13-year-old. And I'm almost twice that.  I'm not annoyed or angered at all, just amused. Laughing

Foods Pizza....please give me ideas :) Sep 09 2008
21:55 (UTC)

These are my homemade pizzas  :)

I'm actually trying to gain weight, but my various digestive disorders make regular pizza a no-no for me, so I also have to seek alternatives.

Health & Support Fellowship of IBS-Sufferers Aug 13 2008
14:19 (UTC)
18

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

Weight Gain "You're So Skinny... Jul 12 2008
23:31 (UTC)
156

I know this is the millionth time I've replied to this thread, but I had a conversation with the founder of my hometown himself at the City Festival this morning, and I thought it was worth sharing:

Him:  How long have you been living here?
Me: My whole life.
Him: Wow. So, are you starting intermediate school this fall?
Me: Oh, um, I'm in college.
Him: ... What!?
Me: I'm almost 21.
Him: *Stares in shock* Goodness, you must've found the fountain of youth! Tell me where it is!

Clever save, I must commend him! I can't even count the number of times I've been mistaken for a 12/13-year-old.  And I'm almost twice that.


Edit: To wistfulxthinking in the following post (#61): Haha, yes, I know he didn't mean to be hurtful, and I wasn't offended by this episode one bit.  Just amused Laughing

Weight Gain "You're So Skinny... Jul 05 2008
08:51 (UTC)
161
Hello all, it's the gal with SMA Syndrome again, with a few more (of far too many) episodes to rehash.

Now that it's summer and I can no longer hide myself under layers or long sleeves all the time, there has been a sharp increase in the frequency of . . . erm  . . . *interesting* comments. This past Tuesday evening at church, a complete stranger walked up to my brother after the sermon, when I was in the bathroom, and told him that she'd like to pray for his "anorexic friend."  She said she "recognizes THAT body type anywhere" after dealing with her own severely anorexic daughter.

I was at the hospital on Thursday for my Lipase and Amylase Lab, and my mother in the waiting room was approached by a woman who asked her, "Why did you let your daughter get so bad?  You know, if she's is under eighteen, it's perfectly legal to force her into an inpatient clinic."

Yesterday, at my church's Independence Day party, the pastor (who doesn't have a clue about my medical situation) greeted me with a cheery, "My goodness, you're too skinny!  How about I give you some of my gut and you give me some skinny?" 

Today, I went shopping with my best friend's family. Her aunt burst with "jeez, girl, you're tinier than a model!" 

People can be real blunt and quick to judge sometimes.
Weight Gain Meidcal condition struggling PLEASE HELP I need advice Jun 15 2008
12:44 (UTC)

Tiffanybreak, I never thought I'd find another person who's going through something so similar as myself. Among many other conditions, I have Superior Mesenteric Artery Syndrome, a life-threatening disorder with a demographic of only about 0.013%.  At 20 years old and 5'4.5" tall, I used to be 74 lbs (12.5 BMI).  Now, three months after surgery, I have battled my way up to 81 lbs. (Improvement!)  I understand it all:  The scale-fear, food-fear, the broken-glass-in-the-belly sensation after every bite, the laundry list of forbidden foods, the constant stream of doctors and hospitals...

Feel free to message me anytime; I think we can definitely help each other out. You are not alone Wink

Weight Gain "You're So Skinny... May 26 2008
04:14 (UTC)
179
Good point, c8yleeca - people don't always think before they speak, no matter the intention behind the words!  It's unfortunate but true.

New story to add to my first post:  A couple of days ago, I stood on a body-fat percentage scale in my doctor's office and got an error message. (Apparently there wasn't enough to detect). Then I stood on a normal scale, and when the nurse saw my number, she kept pushing the reset button, thinking the scale was malfunctioning.  When I told her that was my real weight, she called me a "tall kid" (I'm an average-hight woman!) and asked me when I'm starting high school (I graduated in 2005). 
Weight Gain "You're So Skinny... Apr 30 2008
23:01 (UTC)
192
Wow, c8yleeca, you seem like such an earnest and sympathetic person  :)   It seems as though genuine willingness to look from the eyes of those on the other side of the fence is a rare attribute these days, so I seriously applaud you.  In general, I have not encountered much support from those around me in my struggles with being underweight, mainly because most people are automatically inclined to think that it's easy for anyone to gain.  My condition (SMA Syndrome) is so rare, it's existence is even controversial in the medical community... So, I guess it's understandable that many people are not willing to believe me when I tell them about it, assuming that I really must have an eating disorder instead (which I do not.  But, no offense to those who do - my heart goes out to you; goodness, there is so much stigma thrust upon you in society!)
Weight Gain "You're So Skinny... Apr 26 2008
11:57 (UTC)
195

I'm recovering from a lifetime of Superior Mesenteric Artery Syndrome (never heard if it? See the Wikipedia article I wrote) which causes severe emaciation. I used to be 74 lbs (12.5 BMI), but now, three months after surgery, I have battled my way up to 81 lbs (Improvement! But, I still have a long way to go...) I am 20 years old and 5'4.5".  Thanks to small-frame genetics and my gastrointestinal condition, I've always been the "littlest" kid in the class while growing up, and until today, I am frequently mistaken for being in my early teens.

That said, I have far too many of these "you're so skinny" incidents to list. (A lifetime of comments, literally...) I'll just rehash a few recent ones.

Last semester, after being weighed by a nurse at the Student Health Center, I was waiting for the doctor to come when she struck up some *casual* conversation . . . after a few minutes she asked me if I eat three meals a day, which I thought was odd of her to suddenly bring up, and I said yes, I do. And then, after a bit more "chat" she slipped in a strange question rather out-of-the-blue: "Do you purge after meals sometimes?" I was completely baffled because, at the time, I didn't even know what "purge" means, so I asked her. She said (rather uncomfortably) that purge means to vomit. So, I stared at her, horrified, and was like “What? No!”

A couple months ago, at bible study, the preacher called us to a special time of fasting throughout the week, skipping one meal a day for seven days. Then, after the meeting, when he was talking with the people at my table, he looked right over at me and said, in front of everyone, "You’re excused from the fast." I just kind of looked at him, too embarrassed/mortified to say anything in response. So he insisted, "Really, I don’t think it would be a good idea for you to do it. I mean it."

I was at a birthday party a few weeks ago and I decided to wear a skirt for the first time in a long time. One of my guy-friends actually walked up to me, looked at my legs, and started telling me that his sister's health is so bad right now and that she can no longer keep up with her job because she is tired all the time. So, I give him my condolences and such, then I ask him what is making his sister sick. He gets all serious and quiet, and says, "She's anorexic." Then, there is this long pause, and he adds (glancing at my legs again): "I've been meaning to ask you . . . are you suffering from an eating disorder too? 'Cause I notice you are really, really thin." I just kind of looked at him for a while, not sure where to start. I didn't really want to go on a tirade about my weird condition, so I just told him I had a syndrome that causes emaciation, but I had surgery for that and am now recovering. Not sure if he believes me.

I think I'll be sticking to long-pants and long-sleeved shirts from now on.

Young Calorie Counters Size Zeros: what are your stats? Apr 22 2008
02:23 (UTC)
14
I'm recovering from a lifetime of Superior Mesenteric Artery Syndrome (never heard if it? See the Wikipedia article I wrote) which causes severe emaciation. I used to be 74 lbs (12.7 BMI), but now, three months after surgery, I have battled my way up to 81~82 lbs (Improvement! But, I still have a long way to go...) I am 20 years old, 5'4.5" and wear 00 - 0 pants in juniors (loose fit). As for t-shirts, XS in juniors is a tad large, but a youth small usually fits... :(

~RedViolin87

PS. To fyz: That's a beautiful dress!  I hope you find it :)
Health & Support Endoscopy/colonoscopy Jan 28 2008
07:59 (UTC)
10
I had an upper endoscopy in December (a lovely Christmas present, heh.)  Don't sweat the prep or the actual procedures - just follow ser25's advice above and you'll be fine. The toughest part for me was what came after the procedures.  My esophagus was so sore from the endoscope, I was eating applesauce and yogurt for a week.  (Anything else went down like broken glass and sandpaper.)  Not to worry, though - once this discomfort vanishes, it won't come back.

Good luck! :)
Health & Support Can you lose weight with Crohn's Disease or Irritable Bowel Syndrome?? Jan 28 2008
07:47 (UTC)
19
Original Post by berrywrap12:

 If you are in severe pain everytime you eat, you stop eating.

 This is true to the letter.  I'm having an extremely difficult time gaining (desperately-needed) weight because my Superior Mesenteric Artery (SMA) Syndrome and IBS make every bite hit my stomach like broken glass.  I wish someone would invent a food pill that I could just take 3 times a day.  Until my duodenojejunostomy (a type of open surgery used to treat SMA, not IBS) this Thursday, I have to stick to an all-liquid diet.  I put everything and anything in the blender, whether it's bananas or chicken.  It's the only way food can enter my stomach without making me want to cry.

In any case, I'd like to invite anyone here struggling with IBS to visit this forum.  It offers a wealth of information and Q&A's from other C-C users who have experience with various intestinal disorders and diseases.

Godspeed to everyone battling these horrible conditions – just remember, you are stronger than it!

~Red

P.S.  If you've never heard of SMA Syndrome before, it's because it has a demographic of only about 0.013%.  If you are curious, check out the Wikipedia Encycopedia Article that I authored and provided the diagrams and photos for. 

The Lounge Calling all Artists Dec 06 2007
22:37 (UTC)
57
Clairelaine, your work is amazing!

http://myotaku.com/users/FireAndIce

^ About my novel series (includes info on my writing and links to concept art by myself and others). :)
Health & Support Fellowship of IBS-Sufferers Dec 04 2007
01:26 (UTC)
27
Another good site, created by the International Foundation for Functional Gastrointestinal Disorders: http://www.aboutibs.org/  
Health & Support Fellowship of IBS-Sufferers Dec 04 2007
00:53 (UTC)
29
Adrenabeana: Like the college student that I am, I must recommend Wikipedia:

http://en.wikipedia.org/wiki/Irritable_bowel_ syndrome

I find this site to be a good starting place for research on any topic, as it provides a breadth of foundational knowledge.  (Don't cite it as a primary source for term papers, though - professors will get you! They say Wikipedia is for "self-edification," not formal research.) ;)
Health & Support Fellowship of IBS-Sufferers Dec 02 2007
23:25 (UTC)
31
Hello adrenabeana, welcome to the "Fellowship"!  I have also experienced a lifetime of digestive problems, so I hope I can be of some help to you.

I do not know if you will take comfort in this, but 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, doctors do not have the answer to our problem.  IBS is incurable. Chances are, he or she 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.  So, I'm basically on my own in handling my condition.  In another forum, I read the following comment from an IBS-sufferer: "Telling someone that have IBS is like telling a person with a sore back that they have Sore Back Syndrome. It doesn't help."  I wholeheartedly agree with this.

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 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 my doctor recommended for me include: An endoscopy, colonoscopy (with biopsy), ultrasound, CAT scan, and blood-test.  If everything on all five tests come out "normal," then I know I have IBS.

Until then: What kind of IBS do you think you have?  (-A, -C, -D . . . etc.)  Depending on the type (and on peculiarities of the individual sufferer), "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.).

Hope this helps :)

Health & Support Fellowship of IBS-Sufferers Dec 01 2007
22:03 (UTC)
33
Awesome news, red_herring!  That is very encouraging to hear.

To everyone who is unsure if they have IBS: I second red_herring's suggestion to give "the diet" a try.  Basically, 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.)

Odalisque:  You're welcome!  Glad we could help :)  To answer your questions: Yes, it is definitely a good idea to eat small, frequent meals instead of trying to force down three big ones.  If you need to gain weight but are unable to tolerate volume (like me), 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 that are only 8 ounces but a whopping 200 calories each. 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!)

Cathys276: I do experience all the same symptoms as you (especially bloating) but I have not tried any medicines as of yet.  Instead, I just cut out foods that I know are my particular "triggers."


Keep the questions, suggestions, and updates coming, everyone :) 
Foods Umpteenth Oatmeal Question Dec 01 2007
06:27 (UTC)
My advance apology for writing such a long story!  I just ate oatmeal for the first time in my life today, so, in my enthusiasm, I got a bit carried away with typing my tale (below).  Feel free to skip to the bolded part at the bottom of my reply for my (strange, yet simple and savory) oatmeal serving suggestion, if you like :)

* * *

First off, my condolences to you, gabita, regarding the food shortages!  I am North American – living in the land of abundance and (over)indulgence, to say the least – so I will not pretend to know how it feels to be in your position.  However, I do happen to be a college student with (very) limited funds, living in a dorm with no kitchen access, and inflicted with Superior Mesentric Artery Syndrome and a rather extreme case of Irritable Bowel Syndrome (which, among many things, involves an intolerance of red meat, dairy, caffeine, solid chocolate, carbonated drinks, white flour products, rich cakes/pastries, sugar, anything too greasy/oily/high-fat or tinned/preserved, most highly-processed foods. . . the list goes on.)  So, though I don't know what it's like to live in a country with scant resources, I am familiar with food-related limitations.  Specifically, I know what it feels like to cope with a shortage of cash, restricted transportation to grocery stores, a strict laundry-list of "off limits" foods, and (last, but certainly not least) a lack of kitchen access which renders me unable to prepare a meal that requires anything more than a styrofoam cup and a microwave.

My Tale Begins:

Almost everyday, I log onto the C-C and spot forums in which (literally) dozens of posters sing praises to the heavenly breakfast item that is oatmeal.  And, at the time, I had never even consumed a spoonful of the stuff in my entire life!  The more I read, the more determined I became to try some.  I figured that any food that's cheap, available in an on-campus store (only a 20-min walk from my dorm!), composed of ingredients that do not trigger my IBS and SMA symptoms (in fact, foods with a slushy texture are particularly easy for me to digest), and only requires a cup of tap-water and a minute in the microwave to prepare is more than perfect for me.  I had not eaten a hot meal since visiting home for Thanksgiving, so the idea of a piping bowl of anything had a lot of appeal.

So after my classes were over this afternoon, ready for a hearty (and hot!) snack, I hiked to the on-campus snack shop and bought my first-ever box of Quaker Oats Instant Oatmeal (Regular Flavor).  It was the only kind available, packaged in sets of twelve.  As I carried it to the check-out, I really hoped that I would like it, because if I didn't, I would be stuck with a dozen packets and a waste of $5!

I went to my dorm, and, following the instructions on the box, I poured one packet and 2/3 cup of tap water into a styrofoam cup and popped it in the microwave for two minutes.  The stuff wound up overflowing and sliming-up the entire shelf, causing me to spend the next five minutes or so mopping it with paper-towels and hand-soap from the dorm bathroom.

After I was finished cleaning up the mess, I took the remains of my precious cup and had my very first spoonful of oatmeal.  It was disgusting.  It was so bland, it was almost bitter (if that makes any sense.)  I was disappointed, but, since I never waste food, I force-fed myself the entire cup.  Needless to say, it filled me until my next meal.  So, though it tasted horrible, the oatmeal did it's job in the end: I was no longer hungry, and I could continue to go about my day.  (After all, thanks to my IBS and SMA, I had already begun to think of food purely as medicine rather than something to be enjoyed.  So, though I did not like the oatmeal's taste, I tried to be content with this thought: At least it filled me without causing any stomach-pain!)

Later that afternoon, I spoke with a good friend of mine about my disappointing oatmeal experience, lamenting about the 11 packets I would have to choke down sometime during these final weeks of the semester.  She looked at me blankly and said, "You ate unflavored oatmeal?  If you're going to buy the plain kind, you'll have to put something in it!"  I blinked repeatedly, digesting her words.  My oatmeal was plain and unaccompanied.  It was like eating a sandwich composed entirely of bread, with nothing between the slices.  No wonder it tasted dull! For someone triple-majoring at a premier university, I sure was slow.

So, that evening, hauled up in my room (studying for finals), dinnertime rolled around and I eyed the box of oatmeal on my shelf with determination.  I did not want to wait until the following morning to try again.  Who cared if oatmeal was a "breakfast food"?  I'd already had a cup as an afternoon snack that day, so I figured I could incorporate some as part of my dinner, too.

My first thought was: I needed to "dress it" with something.  Something my IBS and SMA could tolerate (that eliminates all the staples, like honey, brown sugar, maple syrup, butter, milk or yogurt); something that was cheap (that eliminates nuts and dried fruit); and, preferably, something that I already had in my room, since I really did not want to go on another hike to any campus shops so late at night.  I opened my stores and surveyed my options:  Raw broccoli, cherry tomatoes, and a shaker of Lime-Pepper (a type of seasoning composed of salt, black pepper and lime-powder). That was it.

So, this is what I ended up using (Simple, quick, and very modest with ingredients):

- 1 packet of Quaker Oats Instant Oatmeal (Regular Flavor) prepared with 2/3 cup water in microwave

- 1/2 cup of cherry tomatoes, diced (added after microwaving)

- A sprinkle of lime-pepper
 


More Suggestions: You can substitute the lime-pepper with other seasonings (or just plain salt and/or black pepper).  Try throwing in salsa, black beans, and/or any other chopped veggies (raw or cooked).  If you have access to meat/poultry, chop some in,&nb sp;or even toss in a scoop of ground meat.  Basically, I think any recipe that uses rice can be replaced with oatmeal. (Oatmeal is more filling.)  After all, there is no concrete rule that states that oatmeal must be a sweet breakfast food.

*Total calories for one serving of the above recipe (bolded): 113  (100 for the oatmeal, 13 for the tomatoes, 0 for the lime-pepper). I am not cutting calories because I am trying to gain weight, but for those of you who are dieting, I am sure this low number carries a strong appeal!

The end-product was amazing. I had a warm, savory dinner:  Zesty, piping-hot oatmeal with a dash of cool, crunchy tomato.  A perfect balance of textures, flavors and temperatures.


And so concludes my Oatmeal Chronicle :)



Health & Support Fellowship of IBS-Sufferers Nov 15 2007
06:13 (UTC)
37
ser25: Excellent information! Thank you for sharing; that's exactly why I created this group.

japan_nz:  Your story proves that there indeed is light at the end of the IBS-tunnel :)
Health & Support Fellowship of IBS-Sufferers Nov 13 2007
21:11 (UTC)
46
Sure thing! We IBS-sufferers have to support each other :)

... Oh, that banana "ice cream" idea sounds wonderful; I will definitely try it!
Health & Support Fellowship of IBS-Sufferers Nov 13 2007
05:50 (UTC)
48
Red_ herring:  Yes, it certainly sounds like you have IBS.  Fat intolerance, gas, erratic bowel movements, changes in stool color/frequency/consistency, the vanishing and reappearance of symptoms (some people even go through entire months without symptoms), and negative test results for other diseases -  All of these are classic characteristics of IBS (though, as ser25 stated, IBS is different for everyone, so I am using the term "classic" very broadly here.)

We are twins on many levels!  Mine also started as fat intolerance. (If you want dairy, definitely go for fat/sugar free). I am also trying to gain weight on a low-fat, high-calorie diet.  And I'm also living at a university, eating in dining halls (which makes managing IBS quite difficult!)  Oh, and we both have usernames that start with "red"  ;)

My university provides only a few options that work with my IBS diet.  The result is, I pretty much eat the same foods every single day.  (Luckily, I don't get bored easily; though I know most people would become frustrated with repetition.)  In one dining hall, boca burgers are available upon special request (which helps me get protein [not to mention an IBS-essiential: loads of fiber!] while avoiding meat. Obviously, most non-meat sources of protien like nuts, soy and [non-fried] fish wouldn't be available at a cheap-o university dining hall.)  The "bread counter" and the salad bar are always open (my case of IBS does not involve an intolerance of leafy greens or wheat, unlike many.)  Needless to say, I live off of salad, bocas, and wheat bread. Oh, and bananas. (That's about the surgeriest thing I can tolerate.  Bananas are my ultimate dessert, my "major treat" when I get a sweet-tooth . . . Pathetic, I know.  To other people, bananas are a "healthy snack" while "dessert" is something more along the lines of cake, cookies, or ice cream).

Because it is impossible for me to vary my diet at the current time (it varies far more when I am living at home, not at university), I make sure to take a multi-vitamin.  That way, I compensate for anything I may be missing. Also, if you are underweight to the point of missing your period (I'm not saying you are, but thought I should mention this in case), be sure to take calcium+D supplements (especially if your IBS-caused-dairy-intolerance discourages you from drinking milk and eating cheese).  No period = low estrogen production = lack of calcium absorption = you need as much calcium as a post-menopausal woman!

Denise07: Yes, your case also sounds like IBS.  IBS symptoms are known to be triggered by stress.  I would definitely see a doctor and start getting tested.  (Basically, a "negative" result on every test = IBS.  As ser25 stated, it's a catch-all disorder).
Health & Support Fellowship of IBS-Sufferers Nov 12 2007
03:41 (UTC)
53
I think -P is a factor in any kind of IBS, lol.  We all could probably agree that there's no such thing as IBS without some sort of pain involved!
Foods DescribeYour Dream Days Menu Nov 12 2007
03:32 (UTC)
109
My IBS and SMA Syndrome are extremely severe.  This means my symptom-triggering-food list is so long, I'm hardly "allowed" to eat anything oilier or more sugary than a leaf of lettuce.   So, for me, this "dream menu" has nothing to do with weight (because I need and want to gain weight, to recover the damage done by my various stomach/intestinal problems).  Instead, this is my "If I Didn't Have IBS and SMA Menu"!  

Breakfast: 

  • French toast or a blueberry muffin (normally, the eggs and oil would slaughter my stomach, plus any refined/white-flour products would constipate me for a week)
  • An iced, dark-chocolate-peppermint latte from Starbucks or a glass of chocolate milk (chocolate, milk and caffeine are all serious symptom-triggers).
  • Hash browns (again, the oil would get me)
Snack:

  • Munster or brie cheese (how I miss dairy!)
Lunch:

  • Chinese food: Particularly sesame chicken (yikes, oil), white rice (the king of constipation!), or, even better - fried white rice (a double whammy!)
  • Sparkling cider (carbonated drinks are a big bloatation-trigger)
Snack 2:

  • Chocolate-peanut-butter ice cream with chocolate chips, hot chocolate syrup and a banana (there goes the chocolate and dairy again!)
Dinner:

  • A steak Chipotle burrito with extra cheese. (Red meat, white flour products, dairy, AND spice in ONE food-item . . . This burrito would be a delicious way for me commit suicide)
Dessert:

  • A slice of pumpkin pie with whipped cream (last time I had this--which was last week, when a professor of mine brought some to class--the sugar made me feel SO bloated and sick, I wanted to explode/cry.  I couldn't eat for the rest of the day, literally.)
Aaaaand, because I would be totally free of IBS and SMA, I would be able to eat each of my meals in one sitting like a normal human being, instead of having to break them into something like 8 tiny meals to avoid feeling like I swallowed a bomb.
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