Myths of IBD


Today is World IBD Day.  Every year our community gets together to celebrate awareness and a ton of posts on blogs and social media pop up.  I am no exception to this and I have written a post in honor of the day.  I have been thinking about what to write about for awhile and I really couldn’t think of anything that I can just type up.  Of the topics in my head I want to do some research and take my time on the topic.  So, I came up with this one which many people have tackled and even I might have done it previously.

Below is my list of 10 big misconceptions and myths of IBD.  They are in no particular order.

1. IBS (Irritable Bowel Syndrome) and IBD (Inflammatory Bowel Disease ) are the same.

IBD vs IBS

I can not stress this enough.  IBD or Irritable Bowel Syndrome IS NOT the same as IBD or Inflammatory Bowel Disease.  IBD is a chronic illness with no cure.  According to the Mayo Clinic,

“Irritable bowel syndrome (IBS) is a common disorder that affects the large intestine (colon). Irritable bowel syndrome commonly causes cramping, abdominal pain, bloating, gas, diarrhea and constipation. IBS is a chronic condition that you will need to manage long term.

Even though signs and symptoms are uncomfortable, IBS — unlike ulcerative colitis and Crohn’s disease, which are forms of inflammatory bowel disease — doesn’t cause changes in bowel tissue or increase your risk of colorectal cancer.”

As for IBD, the Mayo Clinic says this,

“Inflammatory bowel disease (IBD) involves chronic inflammation of all or part of your digestive tract. IBD primarily includes ulcerative colitis and Crohn’s disease. Both usually involve severe diarrhea, pain, fatigue and weight loss. IBD can be debilitating and sometimes leads to life-threatening complications.”

2. Everyone with IBD will eventually have surgery.

surgery

This is a weird misconception.  I know when I was diagnosed, I was told that I would probably have at least one surgery in my life.  When I saw this myth, I was a little shocked.  Of course, if you think about it, not everyone has severe cases and have no issues or problems so of course they might never have surgery.  In my case, I have a mild case and have never suffered from issues like blockages or fistulas.  So, in theory, yes this is a myth.

However, in my opinion only, that is only kind of true.  I say this because of all the extraintestinal problems that come with Crohn’s Disease.  I may never have a reason to have surgery on my intestines.  However, I did have surgery to remove my gall bladder, of which the doctor said he had never seen a worse looking one.  The cause for my rotten gall bladder most likely was the Crohn’s.  So while I haven’t had surgery for my Crohn’s I have had surgery because of my Crohn’s.  Yes, it’s semantics but on the surface, it is still a myth.

With all of that said, according to the CCFA, and this is from 2010,

“About 23 to 45 percent of people with ulcerative colitis and up to 75 percent of people with Crohn’s disease will eventually require surgery. Some people with these conditions have the option to choose surgery, while for others, surgery is an absolute necessity due to complications of their disease.”

These aren’t great numbers and it is easy to see why people think that if you have IBD you will need surgery.  However, more than 1/2 the people with UC and 25% of people with CD WON’T need surgery and that makes this statement a myth.

3. With IBD, my life expectancy is worse.

Life

While it is easy to assume that this is true, there is no data to back it up.  I know many of us are connected via social media and are constantly seeing young people dying because of IBD.  I myself lost my father in law as a result of complications due to UC.  As with any disease, there are complications and exceptions.  Overall though, there is no real evidence to show that you can’t live a long life with IBD.

To best sum this all up I recommend reading an article found here, written by Amber Tresca.  The summery of it is this,

“Overall, the IBDs are not generally fatal conditions, but they are serious diseases. While death from IBD is uncommon, it is still important to seek treatment and develop an overall healthy lifestyle.”

4.  I can’t have children.

baby

I don’t need to do research to know this is a myth.  So many people with IBD have kids.  If you couldn’t have kids with IBD, there is a chance since it is hereditary that it would have died out.  However, the key word I just used is hereditary.  That means it gets passed down within your family.  That mean you have to have kids to pass it on which makes this one a big myth.

 

5. Obese people don’t get IBD.

Obese

I personally know that this one is a myth.  I know because I was not a skinny kid when I developed Crohn’s and to this day I am not skinny.  Size in a person doesn’t make a difference with IBD.  It doesn’t care if you are skinny, slightly overweight or obese.

Looking online for this myth I came across and interesting study that actually shows an increase in obesity due to Crohn’s which blows this myth out of the water.  It can be found here.

6. There is a cure.

Cure

Contrary to what many people think, there is no cure.  PERIOD!  Nothing, and I do mean nothing you do or take will completely remove IBD from your body.  Once you have it,  you will have it the rest of your life.

Now, with that said, there are many different ways to look at this.  First, with UC, many people will say if you get surgery and remove the disease portion of your colon, then you are cured.  While this is kind of true, you really are just replacing one problem with another.  If you remove the disease you most like are left with an ostomy and anyone with one knows, it isn’t a cure.  You can have your life back, but you just trade in one set of problems with another.

Then there are the medicines that can mimic a cure.  There is good results with medicinal marijuana in putting IBD into remission.  LDN has been working great for me and others.  Some of us can go many years without a symptom and think that we are cured.  However, you are only in remission.  Your disease is inactive, but it is still there.

Of course, the real reason that you aren’t cured, even with an operation is, to put it simply, it is in your DNA.  The disease is part of you.  You might remove the active disease with surgery, but the disease is still part of your body.  Years ago it was found to be genetic, which means it is part of your genes.

 

7. A special diet will cure me.

Diet

Again, there is no cure.  There is remission, but no cure.

So, with that said, there are diets that can help many people.  Because IBD effects our guts, it makes sense that we will have problems with digestion.  First, many IBDers become lactose intolerant.  This is one of the first changes that seems to happen to many of us.  Next comes a variety of issues.  For some of us, it is a wheat intolerance.  For others, it is a protein intolerance.  Still others can’t digest solid food at all.  It all depends on the severity of  the disease and where in your body the disease is located.

Because of these issues, many IBDers are on special diets and they vary greatly.  There is the SCD diet which stand for Specific Carbohydrate Diet and more info on it can be found here.  To take that one further, there is the low Fodmap diet which again deals with carbs but this is focused more on helping people with IBS.  Many people are gluten free and stay away from wheat products.  The list can go on and on.

If we talk about diet, we must also talk about vitamins.  Because of our restrictions, we need to make sure we also take in enough vitamins and minerals.  Most IBDers will take some sort of nutrition supplement, whether it is liquid like Ensure or in the form of pills like multivitamins.  Some of us even have to go to the doctor to get shots of Iron or Vitamin B.

8. My age/race/ethnicity mean I can’t have IBD.

ethnicity

When I saw this one, I almost laughed.  I never thought that someone couldn’t get IBD because of an ethnicity or age.  I did find this doing some research though and thought it was interesting.  It is from The National Center of Biotechnology Information,

“We found that African Americans and whites predominantly had CD, whereas Mexican Americans predominantly had UC. There was no difference between African Americans and Mexican Americans when separately compared to whites in terms of intestinal manifestations of CD and UC, respectively. However, African Americans with CD had a significantly higher incidence of IBD-associated arthritis and ophthalmological manifestations, notably uveitis, compared to whites with CD. Among UC patients, in comparison to the Mexican Americans, whites had significantly higher incidences of joint symptoms and osteoporosis. Whites had a stronger family history of IBD and colorectal carcinoma compared to the other ethnic groups. p-ANCA served as a sensitive marker for UC among Mexican Americans. All the Mexican Americans with UC tested had positive p-ANCA compared to only 40% of whites.”

9. IBD is caused by stress.

stress

Right now no one knows just what causes IBD.  There seem to be many factors that are involved, such as genetics and environment.  Stress however can be a trigger for flares.  According to the CCFA,

“People with inflammatory bowel disease (IBD) commonly believe that stress can trigger their symptoms, and a new study suggests they may be right.

Canadian researchers found that among 552 patients with Crohn’s disease or ulcerative colitis followed for a year, the risk of a symptom flare-up increased when patients were feeling particularly stressed.

The findings, reported online April 6th (2010) in the American Journal of Gastroenterology, lend support to what many people with IBD have believed to be true. Studies show that many people with IBD feel that stress worsens their symptoms, but there has been relatively little scientific evidence of that.”

10. I can stop treatment when in remission.

treatment

To put this bluntly, since you are never cured of the disease, you should never stop treatment.  No matte how well you feel and how long you are in remission, you should always take your meds.  Many medications are made to be taken while you are in remission and it is because of them that you are in remission.  Not only can going off treatment bring on a flare but it can help your body build up a resistance to the medication.

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IBD, Transgenders and the Bathroom Laws


With all this talk about transgender people using bathrooms I can’t help but think just how crazy this all is.  We have so many problems in this world and this is what people are wasting their time fighting about.  The more I hear about it the madder I get because truthfully, I don’t care.  If a person feels like they were born the wrong gender and they are trying to correct it, why should we stop them?

Then I really started thinking about this and how it relates to IBD.  I am sure many of you with IBD have been in this situation and will relate.  You go into a restaurant or store and they have gender specific bathrooms but they are single use.  Your gender is taken and you have to go now.  There is no holding it.  So what do you do, you go into the other gender’s bathroom.  Many times we don’t think about it, we just do it.  We don’t care because it is that or we are shitting our pants.

Now, times are changing and certain states are passing laws that say  you are not allowed to use the other gender’s bathroom.  This is aimed at keeping trans gender people who haven’t had the reassignment surgery from using the inappropriate (in the government’s eye, not mine) bathroom.  But really, with these laws, we are all affected also.

What this means is if someone sees you coming out of the wrong bathroom in say North Carolina, you can face a fine or being arrested.  All because you had to do something that is totally normal and natural.

So what does this mean to you.  It means it is time for us to start speaking up for civil rights, not just for us or trans gender people, but for everyone.  When a law is passed, it doesn’t just affect the people it is made for.  There are always other people affected.  Now, with the bathroom laws in the spotlight, the IBD is becoming affected even though we aren’t being attacked.

Whether you believe in people being transgender or not (that is another debate for another time), we have to start speaking up for our community.  Of course the easiest way to speak up is to write your senators and let them know to leave the bathrooms alone.  As for the states that already have these laws in place, you can boycott them.  Don’t visit the states.  Don’t buy anything made in those states.  And spread the word online.

Hopefully one day we can live in a world that is tolerant of everyone.  Personally I am just tired of all the fighting and intolerance.

bathroom

Meet Dr. Frank J Sileo


In an effort to switch things up and get you, my readers, more involved, I have brought in a great person to hopefully shake things up here.

I want to introduce Dr. Frank J Sileo.

Frank

Dr. Frank J. Sileo is a New Jersey licensed psychologist and is the Founder and Executive Director of The Center for Psychological Enhancement, LLC located in Ridgewood, New Jersey.  He works with children, adolescents and adults. He received his Doctorate in psychology from Fordham University in New York City. He received his Master of Science degree from Fordham University and his Bachelor’s degree from Iona College in New Rochelle, New York. Dr. Sileo has been in private practice in Ridgewood, New Jersey since 1995. Since 2010, Dr. Sileo has been consistently voted one of New Jersey’s Favorite Kids’ Docs by readers of New Jersey Family magazine.

Dr. Sileo is an award winning author and an active public speaker. He is the author of five, soon to be seven children’s picture books: Toilet Paper Flowers: A Story for Children about Crohn’s Disease, Hold the Cheese Please! A Story for Children about Lactose Intolerance, Bug Bites and Campfires: A Story for Kids about Homesickness, Sally Sore Loser: A Story about Winning and Losing and Don’t Put Yourself Down in Circus Town:  A Story about Self-Confidence. Sally Sore Loser is the recipient of the Gold Medal Award from the prestigious Mom’s Choice Award.  His sixth children’s book, to be released in February 2017 is on teaching mindfulness to kids.  His seventh children’s book on a type of bullying will be released in the fall of 2017. He has written extensive general interest articles and has been quoted numerous times in various local and national newspapers, magazines, podcasts, websites, radio and television.

Dr. Sileo will be posting on here from time to time.  You may be wondering what makes him qualified to talk to you about IBD.  Well, that is easy to answer.  He is a Crohnie.  He has also on the board of CCFA in NJ and nationally. He speaks across the country for CCFA on the psychological effects of IBD on patients and caregivers.

Let’s welcome Dr Frank Sileo aboard and feel free to leave a comment if you want him to discuss anything specific.

Juicing – Good or Bad


Juicing

This morning I was looking at Twitter and I saw a tweet that said that juicing really isn’t good for you and lead me to this article.  I know many an IBD that swear to juicing so of course I had to take a look.

Of course like most click baits these days, the article wasn’t quite what was being described.  It goes on to say that juicing as a form of detoxing the body doesn’t really work.  Of course, this isn’t news to me because if you know anything about nutrition, fruits and vegetables while good for you, can actually be harmful in large quantities.  There is the sugar contents and carbs.  I very rarely touch any juice as it also doesn’t have as much vitamins or fiber then if you eat the actual fruit since most of the nutritional elements are in the skin and the skin a lot of times doesn’t make it into the juice.

The reason behind this post is because when I first saw the whole good or bad, I thought right away to all of my IBDers that juice and to them it is a life saver.  Many people can’t tolerate or digest whole foods.  Juicing is a big way for many of us with digestive issues to get our calories and vitamins.  Of course, those needing this make their own juice and usually will have the skin as apposed to the commercial juices that don’t have them.

I actually got angry over the tweet because it should have been said differently.  To just say it isn’t good is very misleading.  The tweet didn’t mention detoxing.  If it did, I would have ignored it.  Instead, it was something just put on the surface which will somehow eventually be taken out of context.  And then, this will lead to people thinking less of those of you that juice for your health.  And also, if you look really fast at the article, which I just did, the first thing you see is Juicing is Officially Dead.  Well, not for my IBDers, I can tell you that.

The one good thing that they do say in the article is this, and it comes at the very end,

Juice still has its benefits. Juice squeezed from fresh fruits and vegetables is more nutritious than sugary, whipped-cream-topped Frappuccinos. It’s also a convenient way to consume healthy foods on-the-go: I wouldn’t gnaw on a carrot or a beet on my morning commute to work, but I’d certainly sip them through a straw.”

So how many of you juice?  What has been your experience with it?  Why do you juice and what is your favorite recipe?  I would love to hear from you and hear about your experience.

juice