Crohn's Disease Relief

No We Can't

I ran into an interesting blog today called Healthy Bag of Politics.  Its written by a guy who happens to have an ileostomy who writes about living with Crohn's, Politics, and current events.

Check out this post, titled No We Can't which is a scathing critique of the "rah rah" you can do anything and overcome your disease promotion that we see so ofter from the CCFA and other organizations.  Meaning well, I am sure, I have been guilty of this myself in touting empowering stores and inspring people.  Well the fact is that some have a very severe form of their disease and they are not going to be QBing the Jacksonville Jaquars or mountain climbing!  In fact, even if I was 100% healthy I double I would be doing either of those things.

I do believe in the power of positive thinking, and being inspired by those who overcome great obstacles, but we need to understand that just because someone lives a normal or even rather reduced level of activity and lifestyle does not mean they are not working hard to overcome their obstacles.  We are all doing the very best we can with what we have at the time.

Are you an Empowered Patient?

A new book The Empowered Patient by Julia Hallisy is making waves in the patient advocacy community.  The book has some fantastic postive reviews on Amazon.com.  Its intended to give you hundreds of tips for navigating your way through the complex and sometimes baffling world of being a health care consumer.  Anyone who is a Crohn's or Ulcerative Colitis sufferer or is a Crohn's Disease Caregiver knows how hard it can be to get a proper diagnosis, a empathetic doctor, avoid billing mixups, and get the right treatment.  I think this book looks like it really could help.

Here is a National Public Radio interview with Juila Hallisy that you can listen to where she talks about her experience with medical mis-diagnosis that ultimately lead her to write the book.

 

One extra angel looking out for children with IBD?

The world of pediatric inflammatory bowel disease treatment has lost a valuable resource with the death of Dr. M. Susan Moyer last week.

According to the The Cincinnati Enquirer's obituary of Dr Moyer:

Dr. M. Susan Moyer, medical director of the Schubert-Martin Inflammatory Bowel Disease Center at Cincinnati Children's Hospital Medical Center, died May 14 at her Hyde Park home. She was 55...

In her career, Dr. Moyer focused on inflammatory bowel disease and complex nutrition problems related to gastrointestinal disease in children. Many of her presentations and articles focused on Crohn's disease and ulcerative colitis.

"Our profession has lost a star," said Dr. Mitchell Cohen, director of the Division of Gastroenterology, Hepatology and Nutrition at Cincinnati Children's Hospital. "She was held in high regard by colleagues and patients alike - both here in Cincinnati and throughout the nation.

I found Dr. Moyer's story to be very inspiring because she suffered herself from an incurable hereditary disease called Mafan Syndrome.  The very idea that someone who is fighting such a terrible disease every day becoming a doctor and working their whole life to help children suffering from Crohn's Disease, Ulcerative Colitis, and other gastrointestinal problems, is so inspiring to me.  Although I was never privileged to meet Dr. Moyer, I think all of us the the community have lost something with her death.

I wonder if there is now one extra angel looking out for children with IBD?

Free Sharps Disposal Unit from Humira

The manufacturers of Humira are offering a service to help properly dispose of your used Humira pens.  They provide the container and service to mail them into them when you are done.  Click the link below for more details.

http://www.myhumira.com/Disposal/Default.aspx

Humira is one of the newest Crohn's medications.  It is a biologic therapy that can be self-administered by the patient rather than having to be given via IV at a doctors office or hospital.

5 Famous and Inspiring People who happen to have Crohn's

5.  Actress Shannon Doherty.

4.  Pop Singer Anastacia.

3.  Theoren Fleury, retired NHL star hockey player.

2.  Mike McCready, guitarist of Pearl Jam.

1.  David Garrard, Quarterback of the Jacksonville Jaguars.

Chronic Style Blog

I stumbled upon a really cool blog the other day with a Crohn's Disease theme - Chronic Style.  I actually found this blog because it was one of the Google Ads showing up on "Marianne's Motifs," my personal blog.  I decided to check it out and boy am I glad I did - this is the "Stylish Guide to Living with a Chronic Illness."  Its about time someone put some style back into this darn disease, and Katie Clark is the one to do it.

"Chronic Style is a different way of looking at living with a long-term and debilitating illness. It's optimistic, educated, knowledgeable, intimate, informative, and stylish."

Check the site out - http://chronicstyle.blogspot.com.

Healing Well Forum

Crohn's Disease Resources - Healing Well Forum

The Healing Well website is an informative resource about a whole range of chronic illness.  Here is a quote from the site.

HealingWell.com features health articles, medical news, video webcasts, community message boards and chat rooms, clinical healthcare resources, email, newsletters, books and reviews, and resource link directories on a wide range of diseases, disorders and chronic illness. Health content is contributed by reputable health organizations, including the National Institutes of Health, Mediwire, e-HealthSource, and Healthology Inc.

There are forums for diseases and syndromes ranging from Breast Cancer, Lyme Disease, Ulcerative Colitis, Fibromyalgia, Migraines, etc.

As a Crohn's disease sufferer, one resource that I find very helpful is the web community on the Healing Well Crohn's Disease Forum. It can be very comforting to read other people's questions, answers, complaints, and experiences with dealing with their symptoms and lives.  Its been very informative, and I have learned that there is a huge range of symptoms and ways in which this disease presents itself for different people.   Each of us seems to have a different reaction to various foods, medicines, and treatments. 

What If...

This is an essay I wrote on the Healing Well forum in December 2007, and also posted on my personal blog Marianne's Motifs.  I am reposting it here, with a few edits for spelling and grammar.

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I was watching the episode of "The Practice" where they had a patient diagnosed with Crohns disease. No-one believed her symptoms were real, thought she had Münchhausen's syndrome, anorexia, etc.

It got me thinking about my own life. I was diagnosed with Crohns only in 2006 at 38 years old but I think I may have had the disease for a long time. In my high school and college years I had been diagnosed with depression and chronic fatigue syndrome. I was sent to the psychiatrist when no tests could show what was making me so tired and achey I could not get out of bed. Now - I am not sure that what I had was Crohns or only Crohns at that time because I did have some other symptoms such as swollen glands which are not supposed to be a symptom of Crohns.  I went through so much emotionally and physically. I always felt like I did not want to complain, and I think my stoicism and mental toughness hid the level of my suffering.

At the time I actually thought I was lazy and overly sensitive.   Now, I realize that I have been functioning on about 1/2 the level of what alot of strong healthy people are at! 

I wonder what if... I was diagnosed at that time when I was in college. I would have had better medications and ways to manage my illness. I would have saved myself alot of self-questioning and emotional turmoil. But at that same time, maybe not knowing and overcoming what I did was good for me in a way. I had to come to realizations about the limits of my own strength, and how sometimes there is no easy answer and you just have to tough through the hard times until things get better.

Well... if you made it this far thanks for reading this. Wishing all of you a happy and healthy holidays and New Year. ::::MWAH:::: kisses!

Free Book 100 Questions and Answers about Crohn's Disease and Ulcerative Colitis

Abbot laboratories is giving away an informative book about Crohn's Disease called 100 Questions and Answers about Crohn's Disease and Ulcerative Colitis.  Here is the link for the page to sign up to receive the free book from Abbot.

I ordered this book last year and read it from cover to cover.  It is a good book, although it is not very new and therefore does not cover some of the newest biologic treatments such as Humira.  But its still a great reference, especially for a family member who wants to know what its like for the person who has IBD.