Crohn's Disease Relief

Today is World IBD Awareness Day

Today is World IBS Day.  Post to Facebook, Twitter or just tell your friends. The Twitter hash tag we want to get trending is #WorldIBDDay. Worldwide, five million people live with Crohn’s disease and ulcerative colitis, conditions known as inflammatory bowel disease. 

Let's get more awareness!

Here's a great way - the company that makes GoodBelly probiotic juices is donating $1 to the CCFA (Crohns and Colitis Foundation of America) for every share on Facebook or Twitter.  They have a little program so all you have to do is a few of mouse clicks.

 

 

The Purple Dress Project

One Girl...One Dress...One Month

via www.purpledressproject.com

Ashley Hasty was diagnosed with Crohn’s disease about a year ago. Since she is a Textile and Apparel Management Phd student, and fashion blogger on www.ahastylife.com, she has decided to use her situation to bring awareness about Crohn's and raise money for the CCFA.

April is Crohn’s Disease Awareness Month. Ashley Hasty will wear the same purple dress each day this month to raise money and awareness for Crohn's. It may not be the world's most glamorous disease, but it's not like we got to pick it! At least the dress is gorgeous.

 

Flaring

I'm just popping in to say "sorry for the quiet around here."  I've been flaring really bad for about two weeks and not had a lot of extra energy for blogging.

I had strep throat and that has seemed to trigger a a long 15 day long migraine and a Crohn's flare to go along with it.  At this point I have given up on all the migraine meds and pain killers to try to stop any rebound headaches.  Basically I am just suffering through it with heating packs and quiet.

I have a weeks vacation from work coming up June 18th so I just have to hang in there until then.  Thank God for my husband who does everything for us except the part where I have to go to work.

Wishing you all calm tummies and happy days.

Can't Eat or Drink, But He Sure Can Write

I just read a blog post by Roger Ebert that really moved me.  Since some Crohn's patients will be on feeding tubes or TPN I think this might be an interesting read.  Roger talks about how what he misses most is not so much the actual eating but more more the social aspect of meals.

He also writes about how as he lost the ability to eat and drink certain memories became very vivid.  Roger's post has a lot of of pathos, and made me think about appreciating things in life.

I posted a comment - that he might not be able to eat, drink, or talk, but he sure can write.

Press Lambasts Politician with Crohn's

Only in the Midwest: His Heart Was In It, His Ass Was Not : FamousDC

I think the way Steve Rose's dropping out of the Kansas Congressional race has been covered has been rude and insensitive. If Mr. Rose was dropping out of the race due to heart problems, cancer, or some "classy enough" disease I don't think he would be treated in the same callous way in the press.

Because he suffers from Inflammatory Bowel Disease it's open season to pick on his press release. Believe me, if they wanted TMI I am sure any person with IBD could give them a lot more than Mr. Rose did.. Saying you lost weight and blood is pretty tame, you know. How squeamish are these reporters? Man (or woman) up - this is part of life.

Dr. Andrew Weil: Fear, Greed and X-Rays

Fear and greed are potent motivators. When both of these forces push in the same direction, virtually no human being can resist. And doctors -- despite many expectations to the contrary -- are human beings.

via www.huffingtonpost.com

An interesting article by Dr. Andrew Weil where he discussed over-use of diagnostic tests. There is a quote from an ER doctor who talks about doctors taking patients with ridiculous complains and treating them as serious as a heart attack because they are afraid of a lawsuit.

"Incredibly expensive, unnecessary, and potentially harmful X-ray scans are ordered with gay abandon on all patients to make sure that 'nothing is missed' that a lawyer might later use against the ER. Patients with the most ridiculous complaints are admitted to the CCU [critical care unit] just to make sure that an MI [myocardial infarction, a.k.a. heart attack] is not missed. I would guess that $10,000 dollars per day or more of wasted X-ray radiation studies occur in our ER everyday. Multiply this times 365 and times the thousands of ERs in the country and you come up with billions and billions of dollars of pure waste in our system."

Well... as a patient who remained undiagnosed for many years, and was generally not taken very seriously by the medical teams checking me out, I am a little bit saddened by this viewpoint. I am sure that there are many people who abuse the emergency care system. One of the reasons for this is that if people don't have any health insurance they probably lack a primary care doctor and tend to make more ER visits that are probably unneeded. People without insurance are also more likely to try to ignore problems until they become serious, costing more money for the system in the long run than if someone just paid for them to go to the doctor and fix problems before they require emergency care.

After reading news stories about patients literally keeling over dead in the emergency room waiting area having not been treated in time, I kind of wish doctors would treat everyone like they are important, whatever ridiculous complaint they come in with.

As for unnecessary tests, that is an interesting topic for Crohn's disease sufferers as well, as we have many radiological tests performed such as CAT scans and small bowel follow-troughs. We do worry about the cancer causing effects that might be encountered after a lifetime of these tests. On the other hand, a large percentage of Crohn's patients end up having surgery, dangerous complications, malnutrition, and all the pain and misery that goes along with this disease. I guess most of us feel that the risks of the tests are part of the devils bargain we make with the health care system.

Personally, I wonder if my Crohn's might have been diagnosed years earlier if I had been given a colonoscopy or CAT scan at the right time. I don't blame anyone for that lack - I certainly had many tests, but my symptoms presented differently back them and no one thought of an IBD type of issue.

I guess outrage over unnecessary medical tests just seems, well... unnecessary to me. And anyone who has had to argue with their insurance company who stalled about paying for a needed test knows that it is not only in government medical plans that expensive tests are rationed.

Health care is full of grey areas and it's no wonder that Americans are having a hard time making sense of the current proposals. It seems like everyone has a subjective viewpoint. I have the viewpoint of someone with a chronic illness. Dr. Weill has the viewpoint of someone who sells books based on naturopathic and preventative health. An ER doctor has the viewpoint of an overworked, over-sued, and under-appreciated soldier on the front lines of the health care system. It is only by listening to each other and our unique viewpoints that we can come to a consensus that can work for, if not everyone, most of us.

Crohn's Disease Support Forums

I've been a member of the Healing Well Crohn's Disease Forum since I came home from the hospital with my diagnosis in 2006.  I find it very comforting to know i am not in this alone and that there are other people going through similar and in many cases even much worse conditions than me.  When I read about folks going through the really hard times I realize that I am doing pretty good and feel a little more lucky.  I also use their experiences and information about things that might come down the path for me in the future.  Forewarned is forearmed, as they say. And if I can answer a newbie's questions I feel like I am being helpful and that makes me feel good.  Hey, that's why I created this site.

Here is a short list of some forums that you may want to check out and see if any are a good fit for you.

New CCFA Community

Healing Well Forum

Crohn's Sanity

Live Journal Community Crohn's Patients

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.