Crohn's Disease Relief

Fantastic UC Themed Song by Jordan Sweeney

You simply must listen to this song!  It's by musician Jordan Sweeney and its tearing up the charts on YouTube.  The song is about his experience with Ulcerative Colitis and it is not only a great medium for awareness, is a just plain awesome song.

According to this Ventura County Star article about Sweeney he had to drop out of the bad Skywalker due to not being able to withstand the rigors of touring with UC.  His video has been viewed over 1,600 times.

Rock on, Jordan. I think you're not alone with that "burning" sensation.

5 Biggest Controversies and Mysteries related to Crohn's Disease

If you take an incurable illness, especially one that causes pain and suffering amongst its victims, you have an environment ripe for quackery, fraud, false hopes, controversy, scams, snake oil, and fear mongering.  On the flip side, traditional western medicine is notoriously slow at accepting alternative treatments, has the possibility of understating risks involved with drug therapies and diagnostic testing, and is funded by drug companies that are quite frankly in business to make a profit.  Somewhere in the middle of all this lies the truth.  As Fox Mulder of the X-Files would say, "The Truth is Out There." 

Crohn's Disease researchers are working on some fantastic new studies right now that promise greater understanding of this mystery illness, better treatments, and better diagnostic testing.  There are also studies being done on diet, and other factors relating to living with IBD.

For today's post I am going to list the 5 biggest mysteries and controversies swirling around the subject of Crohn's disease.  I don't have any answers, I am just presenting the topics.

1.  Is Crohn's disease caused by or related to Mycobacterium avium, supspecies paratuberculosis (MAP) bacteria sometimes found in cow's milk?

2.  Can the inexpensive drug called "Low Dose Naltrexone" help Crohn's sufferers?  What about Aloe?  Bee propolis?  Holy tea? 

3.  Why is Crohn's disease more prevalent in developed countries?  Could this be related to the lack of bacteria in the environment, different diet, genetic differences, etc.?

4.  What will the role of stem cells be in treating Crohn's disease in the future?  What are the ethical and political ramifications of funding for stem cell research?

5.  Do Crohn's patient's receive too may CAT scans and other nuclear medicine based diagnostic tests?  Will the amount of radiation over the lifetime become dangerous?

Take the Crohn's Disease Medication Quiz

The IBD section at Health Central has an interesting "Crohn's Disease Medication Quiz."  I got one wrong!  See if you can beat me.

Click here to take the Quiz.

About.Com's IBD and Crohn's Pages

The About.com section on IBD and more specifically Crohn's disease has a lot of good basic information that is worth taking a few minutes to check out.

The main link for the the About.com Inflammatory Bowel Disease section covers Ulcerative Colitis, Crohn's and even some information on IBS.  The Crohn's subsection has some great articles as well.

Crohn's Disease Freqently Asked Questions

Top Things You Should Know About Crohn's Disease

Types of Crohn's Disease

SurvivorshipAtoZ

SurvivorshipAtoZ is a website dedicated to resources you need after a life changing diagnosis such as Cancer or HIV.  These resources are also applicable to any sort of survivable diagnosis such as Crohn's disease and Ulcerative Colitis like we discuss on this blog.

Some of the topics covered on include sources to get health insurance when you have a history of a serious health condition, how to obtain government and other disability benefits when appropriate, the Family Medical and Leave Act, and even topics such as Children, Depression, and what to do when you can't afford Medication.  This site looks like it can be an invaluable resource for us as empowered patients.

And now for something completely different...

Sometimes you just have to laugh.  Here is a funny LOL Cat picture from Icanhascheezburger.com.

more cat

Tummy Troubles Blog

The Tummy Troubles Blog has the subtitle "An ulcerative colitis err make that Crohn's story...with graphic tummy troubles in places..."  It is a very well written blog with a political and personal touch to it.  I just spent some time reading through the posts from the past year and was so interested, I kept hitting "Older" over and over again to keep reading.

I heartily recommend this blog for both keeping up to date on the what's going on in the Crohn's Blogoshpere and also getting to know this unique voice. Plus, its the home of the Pee Color Chart. I mean really, how can you resist the Google-liciousness of that!

Crohn's Disease Diet

I've heard anecdotal stories that people with Crohn's Disease have gotten relief from their symptoms by following various special diets.  However, from my research I have learned that there is no "one correct" Crohn's Disease diet.  What may work for one person may not work for another.  Some Crohn's sufferers also have Lactose Intolerance and cannot have milk and dairy products.  Personally, dairy products do not seem to bother my Crohn's Disease, and in fact, when I am not feeling well I typically eat cereal with milk, rice pudding, and other such bland foods. Other's with Crohn's may also have Celiac disease and not be able to eat any wheat gluten.

Some patients, especially when in a flare, are advised to go on a low residue diet, avoiding excess fiber, nuts, seeds, etc.  Then other people go on diets such as the Specific Carbohydrate Diet, or Paleo Diet, that are rather high in fiber, and find that those diets help them a lot.  What an interesting idea - to eat like a cave dweller!

I think that the key is to work with your doctor and try things to find what works for you and avoid foods that seem to cause flares.  For example, I have learned through experience that chocolate seems to irritate my digestive system and if I eat too much I will end up with bad heartburn and throwing up in the middle of the night.  Therefore I avoid it or eat a teeny tiny bite just to taste early in the day.  I am trying to eat more and more healthy foods and less and less processed foods. I also am careful to cook my veggies a lot so they are very soft and not tough and fibrous. However, I am just not ready to start eliminating lots of types of foods from my diet.

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