Crohn's Disease Relief

Webcast focuses on day to day coping with diet and nutrition for IBD

Check on another Crohn's and UC focused Webcast: IBD and Families: Disease Education and the Role of Nutrition,  sponsored by the Children’s Digestive Health and Nutrition Foundation and Shire Pharmaceuticals.

A panel of health care professionals will discuss key issues related to IBD, including symptoms and diagnosis, nutrition and tips for working with health care providers. Also, three families affected by IBD will share their personal experiences and provide tips on how to cope.

 To register for the Webcast: http://w.on24.com/r.htm?e=144260&s=1&k=7E2125F42E73C480FB17FF82289DCC2F.

So Much Bad Information Out There

I was just perusing http://www.whostalkin.com to see who was twittering or blogging about Crohn's.  I am really despairing of all the BAD information that is out there.  The most common I see is "buy this book and it will tell you how to CURE your Crohn's disease." There is no cure for Crohn's.

The second most popular BAD information I see out there is for the Crohn's Disease Diet.  There is just no such thing as ONE diet for Crohn's disease.  Some people are lactose intolerant, some cannot have wheat gluten, some cannot eat any fiber, some can tolerate fiber.  It totally depends on the person's own food allergies, level and type of Crohn's disease, and what their individual systems can tolerate.

Yes, in general a high fiber diet with nuts seeds and berries is very good for most people.  That doesn't generally include Crohn's and Ulcerative Colitis patients however, especially ones in a flare, or with strictures.

There are not particular herbs or dietary supplements that will cure Crohn's either, although people find relief from certain supplements.  (Most particularly acidophilous and other beneficial bacterias).

I get very angry when people put out bad information.  Especially when the bad information is located on article submission sites that pay for traffic, blogs hawking books and supplements, and especially those terrible "Cure your Crohn's disease" web sites that are all over the place.

It is bad enough to have a crappy disease like Crohn's witout having to listen to people try to tell you false information in their quest to make a dollar, promote their certain lifestyle, or even just out of pure ignorance.

Learn More About Crohn's With Webcasts

In the last two days I received two press releases about Crohn's Disease related webcasts.  One is being sponsored by the CCFA and the other by Patient Power.  Here is more information about these webcasts where you can learn about some of the cutting edge Crohn's research and treatments being done today.

National Expert Addresses Inflammatory Bowel Disease Risks and Treatments During Crohn’s & Colitis Foundation Interactive Teleconference/Webcast

June 9

Dial-in from any phone to hear the presentation and participate in an interactive question-and-answer session, or log on to any computer to hear the presentation, see the program slides and submit questions.

Registration is available at no cost to participants via an online portal at www.ccfa.org/webcasts/risksandbenefits and by phone at 877-547-5641, ext. 312.

 

The Crohn's & Colitis Foundation is hosting an interactive educational teleconference/webcast, supported by an educational grant by UCB. Balancing the Risks and Benefits of Treatment for Inflammatory Bowel Diseases has been developed to meet the needs of patients seeking answers to questions regarding treatment.

·        What are the side effects of IBD medications?

·        When should surgery be considered?

·        How can I decide on the treatment that is right for me?

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Patient Power Webcast:

Leading-Edge Inflammatory Bowel Disease Therapy

8:00 pm Eastern (5:00 pm Pacific) on May 26th 2009

This will feature Dr. Terrence Barrett from Northwestern Memorial Hospital, discussing state-of-the-art management of inflammatory bowel disease. Learn when the top-down therapy approach, the early intervention of intensive therapies, can be appropriate for the management of Crohn’s disease. Non-surgical treatments will be highlighted, including how dietary management can enhance therapy. Cancer prevention and early detection also will be discussed.

Track the Progress of the IBD Bill

Here is a great page for keeping track of the status of the new proposed legislation to improve research and awareness for IBD.

Open Congress page for the Inflammatory Bowel Disease Research and Awareness Act S.981

Scroll back a post to read more about how you can contact your local representatives to help promote this great legislation.

It's time to write your local Congressman and Senator

I just received word from the CCFA (Crohn's and Colitis Foundation of America) that there is new legislation in the US House of Representatives and Senate that would increase research and awareness for Inflammatory Bowel Diseases such as Crohn's and Ulcerative Colitis. 

I just sent a note to my Congressman telling him about the bill and how it is important to his constituents.  I ask you to do the same.

Write Your Representative - Via the US House Web Site.  The bills are H.R. 2275 (House bill number) and S. 981 (Senate bill number).

Here is more information from the CCFA.

We need your help to advocate for passage of the IBD Research and Awareness Act and to address the needs of the 1.4 million Americans with IBD.

This crucial legislation builds upon similar legislation from the 110th Congress, and would:

• Express the Sense of Congress that the National Institute of Diabetes and Digestive and Kidney Disease at NIH should expand research on IBD.
• Authorize for five years an IBD Epidemiology Program at the Centers for Disease Control and Prevention (CDC).
• Authorize the establishment of a Pediatric IBD Patient Registry at the CDC.
• Authorize the establishment of an IBD Awareness Program at the CDC.

Please contact your legislators now and ask them to cosponsor H.R. 2275 (House bill number) and S. 981 (Senate bill number). In just a few sentences, you can share your personal story and show how important this legislation is to you.

Here is what I wrote:

Dear Congressman Price,

I would like to write to about the H.R. 2275 bill which will increase and expand research for IBD diseases which are Crohn's Disease and Ulcerative Colitis.  Many of your constituents suffer from these two terrible diseases, including me.  I write the web site crohnsdiseaserelief.com and write about how the disease has effected my life.  There are many people who have Crohn's worse than I do, and I really feel for them, especially children and teens with this rather embarrassing disease.  We need to get over the embarrassment factor and find a cure!  I do not like having an incurable disease - lets find a cure already.  :-)

Thanks for listening and representing the great state of Georgia.

Marianne

Living With Crohn's Disease

If you have just been diagnosed with Crohn's or even if have had it a long time, you probably have a lot of questions.  There are many books on the subject (see the Amazon.com ferris wheel below for some great books) but I think the best way to learn about living with Crohn’s Disease is to join a support group or web forum.  My favorite web forum is the Crohn's Forum at Healing well.  But there are many others out there too.  Many people like to find a support group in their area.  I personally think a web forum is great especially when you don’t have a lot of extra time and energy to run around town.

Plus my guess is that newly diagnosed Crohnies are probably really sick when they get their diagnosis and that makes it hard to get to a support group.  So the online support groups and great because you can check in for a short period of time each day when you are feeling good enough to be at the computer, and you don’t even have to get out of your pajamas.

Some of the best techniques I have for managing Crohn's pain have come from reading what helps other people.  For example, have you tried putting a heating pad on your abdomen?  It helps me when I get the aching or stabbing abdominal pain.  I knew a heating pad could help a sore back, etc. but I had not thought of it for abdominal pain.

Keeping a Pain Diary

For me, one of the worst symptoms of Crohn's Disease in pain.  I get joint pain, all over body pain, and stabbing abdominal pain.  While I am busy during the day I usually forget about the pain, but at night when I am wining down and getting ready to sleep it seems to magnify.

I read a very helpful article on Health.com about keeping a pain diary.  I haven't done this officially and think it could be worthwhile to see if any particular activities or foods effect my Crohn's Disease pain.

They even gave out a link to a pain notebook you can print and fill in as well as a list of what subjects to record in your pain diary.

"The not-for-profit American Pain Foundation has an excellent pain notebook that you can download for free. Also check out our print-and-carry list of what to keep in your pain diary."

Stem Cell Research key issue in US Presidential Election

Watching the US Vice Presidential debate last night I could not help but wish the moderator has asked the candidates about their position on supporting stem cell research.  Palin is against all embryonic stem cell research, however all three of the other candidates support it. (Obama/Biden both and McCain as well)  The official Republican Party platform opposes embryonic stem cell research so in that issue McCain deviates from the party position.  Howeve his choice of running mate makes it clear that he is willing to compromise on this issue to try to reconnect with the religious right element of the party.

Here is an interesting article on the subject: How Stem Cell Debate is Energizing the Democratic Ticket from the NY Times.

Of course it is quite obvious from reading about current studies being carried out that stem cell research and treatments are directly applicable to Crohn's Disease.  For those of us suffering from this disease stem cell research is a beacon of hope.  When you are walking around with a disease with no cure (YET) you really don't want to hear that we lack the ability to keep working on the problem.

One good thing about stem cell research is that even with the ban on embryonic research, testing and research is still going on using adult stem cells.  One of the new uses for stem cell treatment for Crohn's actually uses the patiests own stem cells to do an immune system transplant or "reboot" using chemotherapy and radiation treatments followed by re-injecting the patients own pre-harvested stem cells back into their body. 

I certainly understand that medical ethics and differing religious opinions necessitate that we consider carefully before we experiment using embryos and cell portions of embryonic origin.  However, GW Bush's no consideration for any flexibility in working with resources that we already have is not the right decision either.  There needs to be national debate on the subject and medical ethics review boards can make proper determinations on the merit of lines of study on an individual basis.

There can be a middle ground in the politics and ethics of stem cell research, and if we find that middle ground we can save lives and improve the quality of life for many people. 

Advocacy for Patients with Chronic Illness

Via Bill Robertson's Crohn's Disease, Ulcerative Colitis, & Inflammatory Bowel Disease pages I have come across some great resources for being an empowered patient.  And believe me, we ALL need to be empowered patients - whether we are IBD sufferers or even just friends or family of IBD folks.

"Know Your Rights: A Handbook for Patients with Chronic Illness"  - includes information on medical records, Social Security Disability Income, FMLA, etc. from Advocacy for Patients with Chronic Illness.

CDAI Calculator - You can use this index to track the activity level of your disease.
Crohn's Disease Activity Index (CDAI) calculator

Very Nice Book Review

On the Webgrits blog I came across a very well written and informative review of the book What to Eat With IBD. This is the first time I have read a review that gave solid details of what kid of information you can expect to find in the book and why it would be worth reading.  I decided that I am going to pick it up.  As soon as Amazon pays their associates next time I should have my first "paycheck" from them - a $10 gift certificate.  I plan to use it on this book.

Yeah, I realize that is a bit of a pitiful payout from being an Amazon Associate since April, but hey, I do have a day job.  I am doing this blog to help people and have fun, not expecting to get a villa in Italy out of it.  The only reason I even have a $10 gift cert. coming is that my Dad buys his Opera DVDs and CDs from my "search Amazon" search box.  Boy, I love my Dad.  :-)