Crohns and Food
What a difficult and confusing topic.  Crohn's disease is all about the digestive track.  And every professional advises that food does not cause Crohn's disease. With that said, food definitely correlates with everything about the disease.

The longer I live with the disease, the more complicated my relationship is with food. I am going to try to share my perspective on this topic, but please remember that everyone is unique in this disease.  One size does not fit all.  It is about trial and error which is frustrating but worth the effort.
 As I think about how to share my experiences (in hope of helping another) I suggest that you have to think about your food strategy in phases.  Phases in this disease include: "the Flare", deficiencies during a "Flare", Healing Phase, Remission phase, and then sadly, start all over again.

 The Flare
My strategy is to identify foods that are kind to my gut.  When I had my whole digestive track in place it was all about the avoidance of the pain of diarrhea while trying to maintain hydration and still try to maintain my weight.  Not easy!   The following website lists the top thirteen foods for Crohn's patients.  http://www.health.com/health/gallery/0,,20559874,00.html

Oatmeal and chicken soup with an electrolyte water have been my mainstay during flares.  But that's just me.  The key is to find out what works for you.

Deficiencies during a flare.
I have a wonderful internist who is very good about doing blood work to see what deficiencies I need to supplement.  A detailed site on diet and nutrition can be found at http://www.ccfa.org/resources/diet-and-nutrition.html

Identifying the deficiencies includes knowing what part of your gut is diseased and the nutritional
function that is lost when that area is not working properly.  Balancing deficiencies is critical to
preventing future problems, complications or even secondary disease.  (Because of medication side effects, I was diagnosed with Diabetes three years ago).

Top Ten Deficiencies
The following is a list of top ten vitamin or mineral deficiencies associated with Crohns. http://www.health.com/health/gallery/0,,20562810,00.html. What can be confusing is that different doctors and different professional websites can list different deficiencies.  My recommendation, find a good internist (along with your Gastro) who can be a detective for you.  Please do this with a doctors assistance. It's to dangerous to guess at this.

Here is an excerpt that shows researched common deficiencies related to Crohns.

The diets of most patients who have IBD are deficient in one or more vitamins or minerals. Vitamin D and vitamin K deficiencies are frequently found in those with Crohn’s disease, as 

well as deficiencies in iron, vitamin B6, carotene, vitamin B12, and albumin (protein). Patients with Crohn’s disease are usually under increased oxidative stress and have lower 
levels of antioxidant vitamins. Supplementation with vitamins C and E reduces oxidative stress. 

From the website. http://www.lef.org/PDFMaker/MakePDF.aspx?a=1&pdf=1&fn=LE-PAGEID-
113899&url=http://www.lef.org/Health-Wellness/LECMS/PrintVersionMagic.aspx?CmsID=113899

On my next post I will discuss other options being used including the GAPS diet.

My most important advice to you is be assertive on researching your illness and expecting the help and care you deserve.
 This is challenging and if you are too sick get someone like a family member to help you.  Sadly doctors don't know everything and it takes a "village" to support us.
Ask yourself:
What support do I need to put in place?
Does my doctor seem unwilling to help?  Find someone new or add on another professional in the area that is neede.  (Such as pain management, nutrition, stress relief, identifying nutritional deficiencies, mental health therapist, etc.).

Best wishes on your journey to wellness

Have you looked for different ways to try and cope with a chronic disease?
I thought I had tried it all!
Yoga, therapy, nutrition counseling, ...therapy, trying to find someone who would listen, trying to find someone who cared, more therapy, meditation, lots of self help books, blogs, websites, medical research papers, massage therapy, reikei, ....therapy, herbs, diets, more therapy and so forth.

I had gotten to the point where I believed that there really wasn't anything out there that could really help me cope let alone maintain wellness.

But, as I said in a previous post, my mother encouraged me to "hang in there, until something else comes along"
Well, I hung in there and last month I stumbled on a program called EFT, Emotional Freedom Technique or "tapping" for short.

What is it?

EFT Tapping is a Combination of Ancient Chinese Acupressure and Modern Psychology, to Improve Your Health, Wealth, Relationships, Level of Happiness, and Much More… 

EFT Tapping, a Combination of Ancient Chinese Acupressure and Modern Psychology, to Improve Your Health, Wealth, Relationships, Level of Happiness, and Much More… - See more at: http://www.thetappingsolution.com/#sthash.lJAjFNUY.dpuf

The website http://www.thetappingsolution.com/ is where they held a ten day "Summit" with a long list of well know self help "celebrities" like Norman Shealy, Dr. Wayne Dyer, Jack Canfield,  as speakers on this topic.

The Summit is over but the "knowledge" is still available.  This website can connect you to most everything about tapping including:

• What is tapping?
• Why does it work?
• How to tap
• Science/Research
• What the experts are saying
• Resources
• How to get started

I had an amazing ten days of filling my head with knowledge, being empowered to learn how to control or relieve pain, deal with the continuous emotions of dealing with an emotion, etc.
I have learned a new technique that is helping me cope.

Helpful hint:  There are lots of free videos that teach you how to use this technique for yourself.   (see my resource page for websites on EFT)
Videos on using EFT and every topic of physical and emotional issues:
 Getting Started:http://eft.mercola.com/
 "Coping with Anger" http://www.youtube.com/watch?v=VuEIqI82mwA&feature=youtu.be

Ebook - free
     Transform Your Emotions with Energy Tapping (EFT) http://www.thrivingnow.com/tapping/

I have to tell you, returning to this blog is hard.  It stirs up such emotion, fears and anxiety.  Emotion in recalling the past, fears of what I may face in the future and anxiety in trying to control the uncontrollable.

So with that said, what do you do with all that "stuff" in your head.

I have tried every thing I could to deal with the stress and fears of living with Crohn's disease.

• Denial - only lasts so long when you gut hurts
• Anger - keeps coming back no matter how I work on it
• Stifling - probably what makes my gut hurt more
• Isolation - the pity party that says "nobody understands"
• Negotiating - trying to find someone who cares and can give me hope.  "God please let me get well and I will ________(fill in the blank) or I will do yoga three times a week, not take out my frustration on my loved ones if only _______ (fill in the blank)
• Acceptance - well it's really more like resignation that this is my reality after dealing with it for 25+ years.  And I am still here!
• Hoping for Hope - searching for a new medication, trial, doctor, break through, anything
• Hope - being well enough to think and function again

 And the cycle starts over and over again.



Sound familiar?

So, I am now starting a phase of Hope - Yeah for me.  The brain fog is lifting; my anemia/blood work is back to normal; my muscle fatigue doesn't show up until 15-30 minutes after doing housework; and lots and lots of rest.

Okay, okay, so I am a work in progress.....

Next post - I am hopeful about an acupressure technique called EFT, Emotional Freedom Therapy.
Sounds good doesn't it!

Well, I thought I had abandoned this blog.  When a person is in survival mode it's hard to imagine interacting with the outside world.  I defaulted to my disease and the stresses of life and went into "reserve" mode.  That's just part of the journey of a chronic illness.  I have borrowed a phrase from a friend and call it "cocooning".  She used the phrase to identify a period when she needed to withdraw, refresh and transform.  With a chronic disease like Crohn's it's more dire than that.  It's a time to hunker down and try to preserve yourself.   I am sure you all have had to go there.

For the remainder of 2011, it was a battle to fight the disease, the side effects of trying to find a medication that I would respond to and the long recovery back to functioning health.
On top of that came a job change for my husband, a move across the state and many other life stressors to numerous to mention.  A new life can be exciting, but it is stressful no matter what you do to ease the transition.  (And over and over again, we "crohnies" see on IBD medical websites that we need to work on reducing stress.  Ha!!). So I have been in a looonnngg phase of cocooning. I sure hoped the butterfly would appear and was worth it!!

After the move, I sought a new gastroenterologist.  You would think that would be easy.  But nooooo.  I thought all gastro's treated Crohns.  But after going through a young doctor (who didn't know how to run his practice well), having a bad flare with no medical help,  to totally being rejected by another doctor, I have finally found the right one.  It only took a year and a half and another major flare up.  Aaarrrgghhh!!  (The doctor who rejected me just wanted to throw cortisoids at my problem, wouldn't listen to my 25 years of experience, and he finally said, I can't treat you if you won't follow my advice, i.e. take the drugs and shut up.  He finally said in anger, "well, if you had hepatitis C, I am an expert in that".  (He really said that, I kid you not!).   I left that office with little hope.  I won't even go into the battles of dealing with health insurance on top of all that.

So what's the "pearl" here?  Well, I am more of a realist these days so glad when I even find a pretty piece of polished beach glass.  So here is the beach glass: you can try and surround yourself with support, good people, friends and family but in the end, we are alone with this disease.  Or at least we feel that way.  But no matter how long it takes, please don't give up hope on hope.  Yes, keep believing that "hope is on it's way".  My mother, who was a wonderful person and nurse, said: "Hang in there.  The next medication or treatment or break through is coming".  And she was right.

Now that I am on the mend again, I want to reach out and share, commiserate and encourage my fellow "crohnies" and other IBD sufferers.
I have finally found a doctor who "gets" me.  There's no rolling of the eyes, nor cutting me off in mid sentence, and he actually listens to me.  He has gotten me back on track with recovering from a huge flare up (July through January) and I have hope again.
Hope that I might get stable enough to enjoy life a little.
Hope that I am actually starting to come out of my "brain fog" and can retrieve the knowledge and brain power that I thought was lost to the disease.
Hope that as winter passes and spring is starting to "peek around the corner, that I might have another chance at blossoming too!