Please read this Guest Post on IBS from my friend Nina

April is Irritable Bowel Syndrome Awareness Month.

Shawn was 10. On a family vacation in Mexico, he accidentally swallowed contaminated water while swimming in a chlorinated pool and became critically ill. He recovered, but soon developed IBS. Now an adult IBS advocate for many years, he says, “In those days, no one had a clue about IBS… Since the good doctors couldn't figure it out, I was sent for therapy and put on librium and told it was psychosomatic… I struggled for years through school… trying to explain to friends why I was in pain a lot and could not do things… My parents were very supportive and my mom is a nurse… However, … she could not help and I could see that in her eyes while I laid there in complete agony…”  After decades of searching for answers, Shawn was helped greatly by a gut-directed hypnotherapy home course, but IBS still remains. (excerpted with Shawn’s permission)

What IBS is

* IBS is the most common functional gastrointestinal disorder, affecting 10-20% of the population. That’s more common than diabetes.  “Functional” means it affects the function of the colon without showing obvious structural, organic or metabolic problems.  IBS is more common in women than men, but affects boys and girls equally.

*The hallmark symptoms of IBS are chronic or recurring abdominal pain or discomfort and changes in frequency and/or appearance of stools. Usually the pain or discomfort improves after a bowel movement. There may be other GI or non-GI symptoms that vary from person to person, but fever, bleeding or weight loss unrelated to eating less aren’t IBS symptoms.

*The causes of IBS are complex and incompletely understood, but research has established abnormalities in how the brain and digestive tract communicate, how the brain processes pain and how the colon moves. Many other factors are being actively studied. Some children have genetic relatives with IBS or a related chronic condition like fibromyalgia or chronic fatigue syndrome. Post-infectious IBS after illness or exposure to contaminated food or water is also a high risk, but many children and adults develop IBS with no known risk factors.

 *IBS is not the same thing as inflammatory bowel disease, food intolerances or allergies. It’s not life threatening and doesn’t increase the risk of cancer. It’s been found all over the world in every culture and ethnic group for generations and isn’t a modern fad or catchall label. While diet and stress may affect symptoms to varying extents for each individual, they don’t cause IBS.

If you think your child may have IBS:

*Please see a doctor. Many other conditions have some similar symptoms.

*Depending on your child’s symptoms, any family history of Crohn’s, colitis, celiac disease, etc, the doctor may order tests to rule out other conditions. However, there’s currently no test for IBS. The international diagnostic standard, called the Rome III criteria, is based on symptoms and is considered highly accurate if used correctly. IBS experts now discourage a lot of testing in most cases because it can be costly, time consuming, invasive, stressful and with IBS, all tests will be normal. The overwhelming odds are that a Rome III diagnosis is correct. If your doctor doesn’t know what Rome III is, find another doctor. A pediatric functional GI specialist is ideal, but they’re rare. A knowledgeable pediatrician or general gastroenterologist may be able to manage your child’s needs well.  Studies show that people with IBS tend to do better with health providers they trust to work with them and take their concerns seriously.

If your child has IBS

*Each person with IBS is different in symptoms, severity level and experiences. There are various conventional and scientifically-accepted complementary interventions that may help, such as diet, exercise, stress management, medication, gut-directed hypnotherapy, probiotics, and psychotherapy, but what helps one child or adult with IBS may not help another.  No doctor, adult with IBS or fellow parent can predict specifically what will help your child. Be prepared for trial and error. For some, this will be a short process, for others, a very long one.

*There’s currently no cure for IBS, despite hype from various sources. Some children and adults, fortunately, have mild or sporadic IBS symptoms. Most people, even with moderate or severe IBS, eventually find some things that decrease symptoms somewhat, but this may take a while. Each year, a small percentage of people becomes symptom-free, but again, nobody can predict exactly whom or how. Symptoms often return eventually, and most people with IBS are in it for the long haul. Educate yourself from reputable sources and choose wisely. There are many questionable entities simply out to separate families from their money, and many myths and misconceptions too.

*IBS is a hidden illness/disability. If you’re in the U.S. and your child is in school, consider a 504 plan for accommodations like unrestricted bathroom access, extended time or modified absence policies if needed. Other countries may have similar provisions. Support and advocate for your child. The pain, fatigue and other symptoms are real and not in his/her head. For some people with IBS, these can be intense and unrelenting or change from hour to hour or day to day. Help relatives, friends and teachers understand that your child isn’t faking, lazy or being picky about food. Encourage your child to do as much as he/she is able with your family and his/her peers. Many people with IBS isolate themselves because of feeling ill and fearing accidents or others’ reactions.  Some schools may suggest homeschooling rather than accommodate such an unpredictable condition. However, research evidence shows that confronting fears often helps decrease stress that may trigger symptoms in a vicious cycle.  Being matter of fact instead of viewing IBS as a shameful secret will prepare your child to deal more easily and independently with these challenges in the future.

*Moderate or severe IBS can affect the entire family. Seek help for your child, yourself or other family members if needed. Unfortunately, local support groups are rare, but there are reputable resources that may be able to help. If not, be proactive and consider starting a group. While research and social supports for IBS have a long way to go, there’s a pending bill in Congress for functional GI disorders and the beginnings of grassroots advocacy that’s historically been scant in the IBS community. We welcome you to join us and accelerate better circumstances for all children and adults with IBS.

 

 

Nina and Shawn, both adults with IBS, run IBS Impact (http://www.ibsimpact.com/), a grassroots advocacy and awareness-focused website, blog and discussion group with original content and links to reputable resources in 6 countries.

18 thoughts on “Please read this Guest Post on IBS from my friend Nina”

  1. Interesting. I’ve just started taking oil of oregano. My acupuncturist/naturopath suggested it, because I have some food intolerances and wanted to get my gut in order again.From what I’ve read about it, it is a possible treatment for IBS. Please read about it yourself, since I’m just learning, but it does seem to be a good multi-use herb.

  2. We’ve been following the GAPS (gut and psychology syndrome) diet for our daughter’s digestive (and sudden spectrum/behavioral) issues. I don’t claim to be an expert or anything, but it is intended to heal the gut and has helped us tremendously. It is a major lifestyle change and is difficult at first. http://gaps.me/

  3. Only slightly off-topic, but I was thinking I maybe had a mild form of IBS for several years until I was diagnosed and treated with laparoscopy for severe endometriosis. I had several attachments around my bowels, and having them surgically treated helped tremendously. IBS is, indeed, very difficult to treat and/or diagnose.

  4. Thank you. I had not heard of the Rome III test. Off to research as my daughter has gut pain, and while we are investigating crohn’s (family history) and sensory issues causing dietary issues, we are concerned about this too.

  5. I came down with something that seemed like IBS while serving in the Peace Corps–at least that’s what I got diagnosed with after I completed my service and was back in the States. In reality, I think I had a temporary irritation from some kind of parasite that was either gone by the time I was tested or they didn’t know what they were looking for. As a high-fiber diet (vegetarian) person, the GI’s diagnosis and recommendation to just eat more fiber and take Metamucil to control IBS was very frustrating. Instead, my guts seem to recover over the following 2 years, with bouts getting farther apart, and the past 10 years now I’ve been back to normal. Thank goodness! It was really intense while it lasted! I don’t doubt that IBS exists, but I do think that a correct diagnosis is very tricky when it’s entirely symptoms-based and a number of things can present in the same way. I don’t quite understand how this diagnosis is “not a catch-all” for GI disorders that present similarly in people who are structurally typical? Perhaps those with more expertise than I can explain.

  6. Thank you for this insightful article. IBS symtoms can linger even after a GI infection has been treated – then the diagnosis turns to IBS because tests don’t show anything else – Rome criteria are now used, and there is also a strong brain-gut component to the disorder. Having suffered with IBS for many years, I now speak with both parents of children with IBS as well as adult IBS sufferers as a patient support associate and advocate and thanks to the suggestion of Shawn to try clinical hypnotherapy when all else failed for me. Many people have been able to greatly reduce or eliminate their IBS symptoms with the IBS Audio Program 100 for Adults and Teens and the IBS Audio Program 60 for Children and we do have pediatric gastroenterologists who refer children to us – most of these patients are resistant to medical care, medications, diets, etc, or do this alongside physician’s care. I would be happy to answer any questions 877-898-2539 as I speak with many IBS sufferers. Check out the IBS and Children page on ibsimpact.com for more information as well as http://www.healthyaudio.com/content/ibs_children?r=Ni9VPZFD . We have had one child who missed two years of school who did this protocol and was able to return to school with no IBS – she now is an adult and IBS-free. I spoke with another mom who has a daughter who missed months out of the year, and she was able to return and even go to summer camp – IBS free – after using the clinical hypnotherapy program. There IS hope for IBS sufferers! 🙂

  7. Thanks for this. I’ve had IBS as long as I can remember. It’s been disabling and embarrassing, and not really something I could do much about except lots of fiber and striving to be more “Zen”-ha! A joke for someone with anxiety disorder. It’s definitely linked to that. . .Now it’s becoming clear my 4yo DS who has a lot of my personality qualities has it. I may have to try that hypnosis thing with him when he’s old enough. I just feel such dread for him, knowing how it is to have it since childhood, and cringing one’s way through middle- and high-school.
    We’re trying fiber and emotional coaching at this point to help him. Any ideas what else to do to help him at this young age?

  8. In our case it is Fructose Malabsorption, but it looks very much like IBS (FM is often misdiagnosed as IBS, and they can and do often co-occur).For the detailed story on how awful it was before we figured it out: http://hedra.typepad.com/hands_full_of_rocks/2008/10/how-it-all-bega.html
    Basically, three of four of my kids absorb fructose poorly. That means they get either IBS symptoms or chronic constipation (differs by child), and a slew of behavioral impacts due to the fact that gut fermentation (which may show mainly as looser stools or constipation and not necessarily as gassiness) blocks tryptophan absorption, and without tryptophan, your body can’t make seratonin or melatonin and a bunch of other neurotransmitters.
    What happens when people don’t absorb tryptophan? Researchers use tryptophan blockers to test this, and it results in selfish, short-sighted, short-tempered behavior. People go for small near-term gains over bigger long-term payouts, are more likely to choose self over others, lose impulse control… er, anyone see that in their kids now and then? Even a normal absorber hitting overload will get those symptoms. Apples, pears, pit fruits, onion, garlic, wheat and many whole grains, and a lot of vegetables are hell for my kids. Because it is about improving absorption, it isn’t about full avoidance (thankfully) – they can eat small amounts, with the right balance of sugars (you need glucose present in order to absorb fructose, so they avoid foods that have more fructose than glucose, or take glucose – in the form of smarties – with other foods).
    The causes are as poorly understood as with IBS, but gut insult from viral or bacterial infection can trigger it, and many people seem to develop it after antibiotics (there are some cases that may be biota-imbalance related)… so many triggers, just like IBS. If you have IBS with sensitivity to onions, apples, pears, etc., you may have either FM misdiagnosed or both IBS and FM together. A low-FODMAP diet is now commonly recommended for both, because it reduces the burden of low-absorption sugars and polyols on the gut. IBS Free at Last (cookbook) has a lot of low-FODMAP recipes. My online support group (fructose malabsorption australia at yahoo groups) also has a lot of interesting stuff going on (pretty sizable group at this point, global – ‘australia’ is because Monash Univeristy in Australia is the major global research center for FM, and is miles ahead of everyone else both in testing foods for fructose/glucose/polyol content, and in identifying management options).
    Anyway, we’ve been through the behavioral and personal hell of this one. Watching my child curled up in the bathroom when he really wants to go riding Sucks Rocks. In our case, it is likely genes for low absorption plus connective tissue issues (makes GI disorders more likely/more severe). But that isn’t the only cause. And for more fun, half of people with FM have no GI symptoms at all, only the behavioral ones. Whee?
    Good luck anyone who has this going on…

  9. I think my post didn’t make it in somehow. Here it is again:I suffered from IBS for a lot of years and my symptoms have only abated by going gluten and sugar-free. Both gluten and sugar cause inflammation in the body and can contribute to “leaky gut” syndrome. It’s not difficult to follow a gluten-free diet, and you can eliminate it for 2-3 weeks to see if it makes a difference for you. You can still eat all fruits, all veggies, all proteins, plus potatoes, corn, rice and some grains like quinoa.

  10. I have noticed chronic but not severe GI issues with my almost 5-year-old since she was one. May I ask those who know more about IBS and fructose malabsorption if the stomachache goes away with Zantac? She had stomachaches every day for several weeks, the doctor suggested Zantac, and the aches stopped the next day. However, there are other things (poop looks different every time, dairy makes poop loose, etc.), so this one incident is just part of the picture. Thank you in advance for helping me understand if the Zantac is a clue to what’s going on.

  11. This is Nina, the guest blogger. Thanks to those who have taken the time to read and comment. I’ll try to respond to some of the questions and comments. Disclaimer: I’m not a medical professional. I’m an educated layperson with IBS who has experienced most of the existing conventional and reputable complementary treatment interventions, and several of us involved with IBS Impact have interacted with others with IBS as well as leading professionals in the field for years. We try very hard to provide scientifically accurate, current information from researchers and clinicians who specialize in IBS, as well as to report our own experiences as people with IBS and families and to discourage unsubstantiated information, but readers need to consult their own doctors, educate themselves and make their own decisions.Actually, diagnosis of IBS shouldn’t be difficult if the doctor follows the Rome criteria, which has been in existence for about 20 years. We’re currently on Rome III, Rome IV is in development and expected to be the new standard in several years. It is not a test. It’s a list of symptoms and guidelines for how doctors should distinguish IBS from something else, who needs tests for something else and who doesn’t, developed by IBS experts in many countries. Functional GI specialists consider it about 98% accurate if used correctly. Unfortunately, research out of UCLA a couple of years ago shows that general gastroenterologists, primary care doctors and nurse practioners in local communities are much less likely to use it than functional GI specialists, leading to unnecessary tests and outdated advice for many people. The science of IBS has a long way to go, but it’s advanced a lot in 20 years. Not all medical professionals have caught up.
    To answer Anon’s question about why it’s no longer considered a catchall diagnosis, yes, many disorders have some similar symptoms, but even similar ones tend to present in different patterns and in different combinations for each disorder, and experienced doctors know that there are different risk factors and demographic groups that are more statistically likely for each disorder. For example, if there’s significant bleeding, which doesn’t happen in IBS, and a family history of inflammatory bowel disease, it’s probably inflammatory bowel disease. If the person reports symptoms from eating X and they go away when he/she stops eating X, then it’s probably a food intolerance. Even for those people with IBS who appear to be helped by diet– some of us are not at all– removing a trigger food is unlikely to be foolproof or resolve symptoms completely. Colon cancer is statistically unlikely in a child or an adult younger than middle age, whereas if there is a recent GI illness, pain that may change in intensity or location, during the course of a day or on different days, stools that are always different in appearance or frequency or the sensations that the person has, that looks a lot like post-infectious IBS. Structural or organic problems will also show up on tests. IBS won’t. Not that there aren’t various things that are wrong in IBS; research has found more overlap in functional and organic GI disorders than previously believed, but science has not yet reached the point that usable tests for IBS can be developed. Of the usual possibilities, IBS is much, much more common– conservatively at least 30 million people in the U.S. alone, by some estimates, close to 60 million. On the other hand, celiac is estimated at about 3 million, all types of inflammatory bowel disease at 1.4 million, colon cancer at about 100,000 new cases a year. Primary care physicians and gastroenterologists see a lot of IBS and as I said in the post, odds are overwhelming that a Rome III diagnosis is correct.
    From the way you describe your own experience, Anon, it’s very possible that you did have post-infectious IBS. The parasites would have been gone after a time, but would have damaged the long-term functioning of the digestive tract, as occurred in Shawn’s situation. Post-infectious IBS appears to have somewhat of a better prognosis for eventually becoming symptom free than IBS in general, and I’m glad that happened to you, but research shows that it can take several years and doesn’t happen to everybody.
    Responding to Lynette’s comment, yes, endometriosis can cause some bowel issues. It’s also considered one of several commonly overlapping conditions with IBS, meaning that a woman with IBS has a statistically higher chance of also having endometriosis and vice versa. There may be some common mechanisms to both disorders, for which research is ongoing, but they are not the same disorder.
    We have articles about diagnosis and non-GI symptoms/overlapping conditions on the IBS Impact website.

  12. Separate post on treatment issues. As Marilyn posted, gut-directed hypnotherapy has been very helpful, to varying extents, to many of us, though as with specific IBS treatment, everyone’s mileage varies and it doesn’t work for everyone. Even though it’s a complementary treatment that sounds a bit out there, there’s good academic research that shows that it does often work. Understanding how it works is still evolving.As Hedra posted, the Australians pioneered the low FODMAP approach, which is relatively new, and it’s one diet that has had some encouraging peer-reviewed evidence in the international research community. Again, it seems to help some people with IBS and not others, depending on the person’s particular IBS symptoms. The thing about IBS is that there are all sorts of sources and people with IBS who swear by this or that diet, but it’s very individual. Some people say they got better eating X and other people say they cannot eat X under any circumstances. Some people say remove Y from your diet, and others remove it or several foods with absolutely no change.
    “Leaky gut” as mentioned by Meggiemoo is an alternative, not conventional diagnosis. There’s no scientific basis for a connection to Rome criteria IBS (as opposed to loose usage by those who say it is a catchall diagnosis) recognized by functional GI researchers at this time. According to them, diet, in itself, does not cause IBS. Diet may or may not influence symptoms once one has IBS. IBS also does not cause overt gut inflammation. There is some research evidence for non-overt inflammation in the post-infectious IBS subset, but the usual GI antinflammatories weren’t effective. If going sugar-free and gluten-free helped symptoms abate, that’s wonderful and I am glad for you, but anyone with similar symptoms who wants to try the approach should be aware that it is alternative rather than proven by conventional scientific means.
    Similarly, functional GI researchers still are not sure about the effectiveness of acupuncture. I happen to have been helped by it, using highly qualified practitioners previously associated with the integrative medicine units of two internationally known teaching hospitals, but it took a long time, it was not a panacea and I knew that going in. Again, mileage will vary.
    I’m not aware of any benefit from oil of oregano, either from professionals or other people with IBS throughout the English speaking world. This is the first time I have seen it mentioned. It probably won’t harm, but it’s not likely to help either. I understand the desperation, at times, to try anything on the off chance that it may work, but this impulse often leads people with IBS, including myself at one point, to invest a lot of time and money in this or that, only to be disappointed. Choose wisely.
    Tara, has your child’s doctor diagnosed IBS? Stools that are always different are very typical of IBS. Worsening with dairy may be lactose intolerance (separate condition that may or may not coexist with IBS) or just the fat content triggering symptoms, if it is IBS. As for Zantac, this is a medication for GERD or ulcers, and GERD often overlaps with IBS. There may be a connection in that it resolved your child’s pain, but I don’t have enough scientific familiarity with that to comment. Since IBS frequently fluctuates and changes by nature, if your child does have IBS, it could just be a coincidence. If your child’s doctor cannot explain it, you might consider attending one of the free, public online chats held by the University of North Carolina Center for Functional GI and Motility Disorders and asking one of the experts. We link them often on our website and blog.
    I hope my comments help readers.

  13. Also, stomach ache is not unusual with FM. There are two tests for FM, non-invasive. One is a breath test, where they give a fructose dose and then measure the amount of hydrogen and methane (preferably both, many tests still only check hydrogen) breathed out over a span of time (at individual points in time). Fermentation creates either hydrogen or methane (depending on your gut flora), which is absorbed to bloodstream and excreted by exhalation (cool stuff our bodies do!).1 in 10 people who are actually positive will test negative on the test for unknown reasons. If the test is positive, you just get to switch diets then and find your own (or child’s) level of tolerance (which is, like IBS management, incredibly individual). If you test negative, then a four day to six week trial of low FODMAP is recommended, to see if that helps. If it helps, that is considered diagnostic as well.
    Zantac helps for a small number of people in my experience, but changing the diet solves/resolves. If there were a magic pill that we could use to make it all better, I would buy it. There is an enzyme available (only in Germany) that converts fructose to glucose, but the impact for many kids is a huge sugar rush instead (like a candy binge). Not really worth it for most. There are mixed enzymes (digest spectrum gold is the most popular) that help break down a variety of poorly absorbed sugars, which just takes the overall impact down to a dull roar (we use these, and they help one child immensely, one child somewhat, and one child only with high doses… so again, variable results!). Baselining the diet is really the best option. A four day low-FODMAP trial usually gives a good picture for parents, since behavior tends to ‘click over’ on day four.
    I also have two kids with early onset lactose intolerance along with FM (the combination is noted for growth impact, similar to having undiagnosed celiac can impact growth, though it isn’t 1 to 1). So it is entirely possible to have lactose intolerance early on (Miss M had severe lactose intolerance even while she was still breastfed, which meant she would have cramps and diarrhea 20 minutes after nursing. WAAHHHH! Mr B had the 24-hour-delay version of LI, where he didn’t have a lot of gastric noise, cramping, or diarrhea right off, but general malaise and loose stools a day later. more joy.).
    We ended up at a major pediatric hospital to get answers. I recommend going to a major center, they’re faster, and usually better (our local children’s hospital GI dept was horrible).
    My concern with Zantac (and I have a fourth child with GERD, so I am not opposed to using reflux meds!) is the impact on absorption of vitamins, and the increased risk of infections. Stomach acid has a non-digestion purpose, and it is a valuable one. It kills viruses entering the GI tract. We also had to boost vitamin B intake for the child with GERD, because it digests weakly from food without stomach acid. It may be worth a trial of Zantac to see if it will help, but I would advise a trial of diet changes first. Go lactose free and see what happens, too – the delayed version tends to have extended impact, and masked the obvious 1:1 symptoms for FM in our kids.

  14. I have suffered from IBS for 25 years, ever since suffering amoebic dysentery in college. I might have a genetic component, as well, as my mom suffered from “spastic colon.”I find my symptoms disappear with a Paleo diet – grain-free, low carb, low fruit, low dairy. As others have noted, I can eat a little of some things with no effect, but a lot of those things will bring on pain and GI distress. Before I figured out the dietary component, I suffered a lot of embarrassment for my constant gassiness 🙁
    I would encourage those with IBS or IBS-like symptoms to look into the possibility of Small Intestinal Bacterial Overgrowth (SIBO). There is info available at siboinfo.com

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