Crohn's Disease Relief

Health Benefits of Knitting and Crochet and other hobbies

I just read an interesting article on Suite101 on the Health Benefits of Knitting and Crochet.  I recently started a new hobby of loom knitting and I can attest that I find it very relaxing.  Knitting or crochet type hobbies are handy for IBD patients who have to spend time waiting in doctor's waiting rooms, too!  If you work on a small portable project like an easy loom knit hat or something, you can bring it with you and stitch away while you wait.  I mean really - those stale magazines get kind of boring after a while.

If someone is home convalescing, or perhaps in the hospital, they need a really easy hobby that can be a little bit mindless and put them in a zen state of meditation and relaxation. 

Here are some ideas of crafts and hobbies that might be good for someone recovering from a Crohn's flare:

1. Sudoku, crosswords, wordsearches or other puzzles
2. Plastic canvas craft kit
3. Knifty Knitter hat loom kit and some Red Heart acrylic yarn

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.  :-)

Finally - A greeting card just for people with IBS

A while back I came across a very funny and crass blog blog called Dirty Shanks.  Its what you would get if you crossed Martha Stewart with Kathy Griffin - she makes gorgeous home made greeting cards, but they are all totally offensive and rude.

After writing up the site in my personal blog Marianne's Motifs, the site owner made me my own personal card.  I asked her to do an Irritable Bowel Disease or Irritable Bowel Syndrome Greeting Card.  After all, we have the sexiest set of symptoms around town and we deserve not only our own stamp, but our own card too.

So here it is!

'cause sometimes you've just gotta laugh

Check out this hysterical fake drug ad from Cracked.com - Greatest Medication Side Effect Ever.

Caution - Your Herpes may cause Armageddon!

Bone Marrow Stem Cell study shows some promise in ibd in mice

I am very interestingly following news reports about studies being done on using various types of stem cells to treat inflammatory bowel diseases such as Crohn's.  Today I saw this news brief from EurekaAlert which describes a study at Massachusetts General Hospital Center for Engineering in Medicine where they injected mesenchymal stem cells (MSCs) into the perineum of the mice.

Because I am not a science writer, let me quote a bit from the news brief:

"Our findings suggest that MSC therapy could become a useful treatment for inflammatory bowel disease," says Biju Parekkadan, PhD, of the Center for Engineering in Medicine, the paper's lead author. "Several previous studies have observed these cells' ability to inhibit specific subsets of T cells and relieve symptoms in particular autoimmune disorders. But this is the first demonstration of their ability to suppress a broad-based autoimmune reaction and protect gastrointestinal tissue."

Autoimmune disease occurs when the immune system loses control over lymphocytes (white blood cells) that attack an individual's own tissues. Treatments for these diseases – more than 80 conditions, ranging from type 1 diabetes to rheumatoid arthritis to gastrointestinal disorders like Crohn's disease – are primarily directed against symptoms; and even those that target the immune system do not completely suppress the out-of-control response. Found in the bone marrow, MSCs give rise to tissues supporting blood cell development and secrete factors that can modulate several immune system activities. Their use has recently received FDA approval to treat severe graft-versus-host disease in children.

Of course the problem is that the long term effects of Stem Cell Treatment on humans is not known yet.

Martin Yarmush, MD, PhD, director of the MGH Center for Engineering in Medicine and senior author of the study is quoted as saying "Before we can think about testing this approach in patients, we need to know more about long-term effects of MSC infusion – including immunosuppressive effects."

I imagine that it will be the job of the severely ill amongst us to join medical studies to test stem cell treatments in people.  Then we can monitor their progress and make sure there are not unpalatable extra side effects of the treatments.  I imagine they are concerned that the extra stem cells effect the immune system in other ways; cancer is something we all want to avoid for example.  I also do not want to grow a third leg.  (Ok, little starfish humor there...)

Too many scammers out there

I am so wary of people who say "I cured my Crohn's disease with XYZ product and you can too, just buy this product..."

The latest I've seen is someone selling this book - which I think is a very sound book I just don't like the way they are marketing it on their web site. (Which I am NOT going to link to cause I don't even feel like giving them a link. So there)

Just because you had a colonoscopy that showed no signs of Crohn's disease  does not mean you are cured, just in remission.  You might never get another flare up, but you might.  It just means they didn't see any signs.  I had a pill endoscopy that showed no signs of Crohn's and had a flare up a few months later.  Be real people.  The disease can also be in different parts of your digestive tract and body so if its NOT in your colon it could be in the small intestine, etc.  Whatever.  I hate people who make promises that are not able to be kept. 

This is supposed to be a good book however, the "What to Eat with IBD."  If you want to buy it and learn about "The Crohn's Diet" buy it from my link and I will make 10 cents and I won't lie to you about this nasty disease.  Guess what? There is no cure YET.  Let's give some money to the CCFA so we can pay for research to find a cure instead of trying to scam each other out of 10 cents on a book sale.

Campaigning for a Crohn's Commemorative Postage Stamp

In a twist of irony, I can remember listening to a National Public Radio segment about Gideon Sofer and his campaign to get the US Postal Service to print a stamp to promote awareness of Crohn's disease a few months BEFORE I was diagnosed with the disease myself.

I do think I've had Crohn's a lot longer than that, but I was only diagnosed in 2006.  I remember listening to him talk on the NPR interview and thinking, "yeah...lets do a stamp for the Inflammatory Bowel Disease!"

Gideon is in the news this week as he prepares to go to Capitol Hill (wearing his IV backpack for hydration) to campaign for his stamp.  After 9 years of working on this cause Gideon has come one big step closer: U.S. Rep. Frank Pallone Jr. (D- 6th Dist.) introduced a bill last month in Congress that would designate a stamp dedicated to Crohn's disease.

For more information see this article in the NJ Star-Ledger.

"Crohnology" of Advances in the treatment of Crohn's Disease

Today my google alart for crohn's disease brought me to this interesting blog called Crohnology.  It covers news about treatments and studies for treatments of Crohn's disease.  If you are trying to stay up to date on how each drug treatment is faring in trials, studies of what's next for biologic treatments after anti-TNF, or how the drug that treats MAP infection fared in trials, this blog is a good place to visit.

Coping With Crohn's Blog

I "met" the blogger known as "MommaMuse" when I signed up for EntreCard and she was the first person to explain how that blogging community works.  She and I both share a few interests, crafting, blogging, and we discovered upon chatting that we both had Crohn's.

She's now got a new blog called Coping With Crohn's and she is very descriptively (and with a bit of dry wit) writing about her personal experience with this disease.  Right now she is healing up from surgery on an abcess.  Go on and give her site a visit and leave her a nice comment.  :-)  Anyone who had a shot in the butt-ox like that deserves some nice comments.