Did you know that between 9%-23% of people around the world suffer from irritable bowel syndrome (IBS)? However, many remain undiagnosed and just aren’t aware “that their symptoms indicate a medically recognized disorder.”[1] April is IBS Awareness Month and the International Foundation for Functional Gastrointestinal Disorders (IFFGD) is working to get information out to the public and advance research.

There are some easy things you can do to get involved in your community or even right from your home. Here are just a few of the ways you can help the IFFGD get the message out and help raise awareness.

• Share their press release on veterans with IBS
• Use their ready-made template to write a letter to the editor
• Tell your legislator why this is important
• Share the IBS awareness posters with your communities and social networks
• Become part of the Digestive Health Alliance

If you’re living with IBS, find others just like you in our growing community of almost 3,000 IBS patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.

You may have heard of inflammatory bowel disease (IBD), but have you heard of microscopic colitis?  One of several conditions under the IBD umbrella, this chronic, inflammatory disorder of the colon (aka the large intestine) can cause watery diarrhea and abdominal pain.  It gets its name from the fact that microscopic examination of the intestinal tissue is required to diagnose it.

While less severe than other forms of IBD, microscopic colitis can cause considerable discomfort.  Combine that with the stress, long hours and unpredictability of holiday travel, and you can imagine the challenges.  What do our 24 members with microscopic colitis (80% of whom are female) have to say about this annual ordeal?  Here is a sampling of their stories and advice:

• “Yes, only people with colitis know how important a bathroom is!  I am so glad to have found others with this problem.  When I talk about it, nobody knows what it is. I have to ride to Chicago at the end of this month, and it is a five-hour drive.  It makes me so nervous to be in the car for that long. I am already stressing over it. Thank goodness it is my son taking me there so I can say pull over fast.”

• “I reduced my caffeine (coffee), that seems to help somewhat, but I have flare ups.  I also have bladder issues.  I also had colitis for quite a long time before being diagnosed.  About the bathroom thing, I know all the bathrooms en route too, and I sleep closest to the bathroom. (Actually when were looking for a house, that was a requirement for me to have a toilet/bathroom next to me.)”

• “There is a gas station, convenience store, or restaurant at almost every exit. If you explain why you need to use their bathroom, they usually let you. My GI specialist also has me on Colestipol, which is much better than the Imodium-type drugs. The Colestipol I only have to take twice a day, and it is much more effective. I can usually avoid eating anything before leaving, and usually don’t have a problem with trips that long.”

For those with microscopic colitis or other forms of IBD, going to grandmother’s house for the holidays can be quite a different story.  Fortunately, you’re not alone.  At PatientsLikeMe, we have 27 patients who report IBD, and more than 4,400 members subscribed to our Intestinal and Digestive Health Forum.  Need a little support this holiday season?  Log on to PatientsLikeMe to share and learn with those who can truly relate.

Is InflammaCORE helpful in reducing a chronic inflammatory burden?  Can it alleviate bowel irritability?  Find out just that by sharing your experiences with other patients at PatientsLikeMe and learning what they have to say about this nutritional supplement.

A protein powder drink mix, InflammaCORE is marketed as a potent way to support your gastrointestinal, cardiovascular and immune health.  It contains 19 grams of naturally complete brown rice protein, 4 grams of fiber and Omega 3’s derived from Flaxseed.  In addition, InflammaCORE offers high-potency phytonutrients, including Turmeric, Guercetin and Green Tea, which have been shown to reduce inflammatory markers.  Other ingredients include L-Glutamine and Glycine to promote tissue repair as well as Vitamin D and Arabinogalactan for proper immune function.

At PatientsLikeMe, where more than 125,000 patients are sharing their experiences with all types of treatments including prescription drugs, over-the-counter drugs and supplements, one patient currently reports taking InflammaCORE for bowel irritability.  What can we learn from her experience?  In her in-depth treatment evaluation, she rates the effectiveness as “Major,” and the side effects as “None.”  Her daily dosage is “8 tbsp daily,” while her monthly cost is “$50-99.”

Here’s what else she reports in the freeform section of her evaluation:

“This course of treatment relieved a long history of IBS symptoms and chronic constipation. As of a year later, the symptoms have not recurred. I credit InflammaCORE with resolving this condition and I couldn’t be happier with the product.”

JOIN PATIENTSLIKEME TODAY

What about you?  Have you taken InflammaCORE or another dietary supplement to address irritable bowel or systemic inflammation?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

“When you have a child with special needs, you really start to feel like you’re constantly the squeaky wheel as you advocate for your child. After a while, you start to wonder…’is it me?’ But I’ve already found several other parent advocates who are going through the same thing.”

- Autism Caregiver

It’s Autism Awareness Month as well as IBS Awareness Month! Now that PatientsLikeMe has opened its doors to any patient with any condition, it’s amazing to see how many patients have joined our site in such a little amount of time. As we continue to add new members and conditions daily, helping us to expand beyond our recent milestone of over 100,000 members, here are some facts about autism and irritable bowel syndrome (IBS) from our members.

Autism

Membership

• PatientsLikeMe already has over 100 members with autism, even though autism patients and caregivers could only join PatientsLikeMe starting at the beginning of April.

What are the top treatments?

• Autism patients are using more than 150 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, lifestyle modifications, therapies, etc.
• The top lifestyle modification reported by our autism patients is Applied Behavioral Analysis, while Adapted Physical Education is the number one exercise cited.
• The most widely used prescription drugs reported by our autism patients are Levetiracetam (Keppra), Lamotrigine (Lamictal) and Albuterol.

What are the major symptoms?

• For more than 55 patient members, “Anxious Mood” was their first symptom of autism.
• The five most common primary symptoms reported include: Anxious Mood, Depressed Mood, Fatigue, Impaired Communication Skills and Insomnia.

IBS

Membership

• PatientsLikeMe already has over 270 patients with IBS, even though, like autism, IBS patients could only join PatientsLikeMe starting at the beginning of April.

What are the top treatments?

• IBS patients are using more than 600 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, lifestyle modifications, therapies, etc.
• The top lifestyle modification reported by our IBS patients is Rest, while Stretching is the number one exercise cited.
• The most widely used prescription drugs reported by IBS patients are Duloxetine (Cymbalta), Pregabalin (Lyrica) and Tramadol (Ultram).

What are the major symptoms?

• For more than 55 patient members, “Abdominal Bloating” was their first symptom of IBS.
• The five most common primary symptoms reported include: Abdominal Bloating, Abdominal Cramps, Anxious Mood, Constipation and Depressed Mood.

Are you on a lectin-free diet?  Trade notes on this dietary intervention at PatientsLikeMe, where more than 120,000 patients are sharing their experiences with treatments, supplements, lifestyle modifications and more.

But first, let’s talk about lectins, which are sugar-binding proteins that mimic insulin. Lectins bind to carbohydrates and various proteins, causing inflammation. As a result, they have been linked with autoimmune disorders such as IBS, Crohn’s disease and fibromyalgia.  To help fight this inflammatory process, a lectin-free diet restricts certain things like grains, nightshades (i.e. peppers, tomatoes, potatoes), legumes (i.e. beans) and some starches.  While most foods contain some amount of lectins, these food groups are considered the “worst offenders.”

What kinds of data points can you share about a lectin-free diet at PatientsLikeMe?  Thanks to our unique data-sharing platform, you can share detailed information on this diet’s effectiveness, side effects, cost and more.  You can also offer freeform tips and advice to others considering the diet and report what health condition(s) you are attempting to treat.   Whether you’ve found a lectin-free diet helpful in controlling inflammation or you’ve discontinued it for various reasons, your story will provide valuable insight to those who are searching for answers.

JOIN PATIENTSLIKEME TODAY

Have you tried a lectin-free diet?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

At PatientsLikeMe, where more than 115,000 patients are sharing their experiences with prescription drugs, supplements and more, 20 patients report taking the probiotic AccuFlora while zero patients report experiencing AccuFlora side effects.  In addition, zero patients report discontinuing the supplement as a result of AccuFlora side effects.  The seven patients who have stopped taking AccuFlora list reasons such as expense or “it didn’t seem to work.”  (See the AccuFlora treatment report for more details.)

What exactly is a probiotic?  Falling within the realm of complementary and alternative medicine (CAM), a probiotic is an over-the-counter dietary supplement containing a form of “friendly bacteria” that may aid digestion, inhibit potentially harmful bacteria and support the intestinal tract.  In the case of AccuFlora, the live microorganism or “good bacteria” used is acidophilus, one of several bacteria used in the production of yogurt. 124 patients report taking some type or brand of acidophilus at PatientsLikeMe, and the only reported side effect amongst all of them is acid reflux (1 patient).

Now that we’ve addressed AccuFlora side effects, what else do patients have to say about this brand of probiotic?  Among other reasons, patients report taking AccuFlora for general health, bowel problems, diarrhea and irritable bowel syndrome (IBS).  The most commonly reported dosage is “daily,” the most commonly reported duration is “2 years or more,” and the most commonly reported cost is “under $25.”  From the four patient evaluations submitted for AccuFlora, we can also see that all four patients ranked the supplement as “moderate” or “major” in its effectiveness.

JOIN PATIENTSLIKEME TODAY

Have you taken AccuFlora – or experienced AccuFlora side effects?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.