Sunday, April 13, 2008

Living with Crohn's Disease - Crohn's Blog

Hey guys, have had a recent upswing in traffic here at the living with crohn's disease blog (livingwithcrohnsdisease.blogspot.com) and just wanted to welcome the new visitors. Feel free to comment or share your stories and advice about living with crohn's disease. Have a great weekend.

Also, have seen an increase in traffic in those looking for basic Crohn's Disease information and am hearing the question "What is Crohn's Disease?" Quick refresher for those folks:
An estimated 500,000 Americans have Crohn's disease, an inflammatory bowel disease (IBD) that causes chronic inflammation of the intestinal tract. Like ulcerative colitis, another common IBD, Crohn's disease can be both painful and debilitating and sometimes may lead to life-threatening complications.In my case, the disease is centralized near my terminal ilieum (near the colon). There's no known medical cure for Crohn's disease. However, therapies are available that may greatly reduce the signs and symptoms of Crohn's disease and even bring about a long-term remission. (When healthly I take about 16 pills a day, when in a flare up, I lose count.)

12 comments:

megasam said...

I recently discovered your blog. My husband has crohn's disease. He also has an auto immune arthritis and PSC. I have recently decided to look into trying to find others going through similar circumstances. My husband is starting to have some issues with the PSC and so I decided it was time to put some focus on doing research. I have found some very helpful information on your blog. I will continue to follow this site. Thank you.

Jaime

Jennifer said...

My son, who is now 21, was diagnosed with Crohns disease when he was 12. He had a bad few years, although he did have a faily mild case compared to most. The only thing that really helped was going on and off prednisone. After a few years, one of the times he weaned off prednisone, the symptoms never came back. He's been in remission for years now and he is not taking any medicine at all. Once during this time he went on prednisone again when he had a slight flare up.

I just wanted to write this to show that there is hope. Although there is no cure, remissions are definitely possible. Good luck. Please feel free to write if you have questions.

Anonymous said...

I've had CD for 14 years. I just failed Remicade started Humira, am coming out of a bad episode as a result of the Remicade failure.

Does anyone ave any experience with Humira?

Mr. Crohns said...

yeah, man. i was diagnosed 4 years ago. took my parents two years to believe that i didn't just have a stomach ache. slept 15 + hours a day. tried to go after college without insurance and ended up in the emergency room this past fall and almost died. haha... but now i'm just trying how to pay off loans and get some sort of back-up disability if this happens again and all that junk.

p.s. it's funny that both of our blogs have a chrohn's in them and are the same format.

-- ryan dewalt (mrcrohns.blogspot.com)

Melanie said...

Hi! I am 24 years old, live in Winter Park, FL and have just been diagnosed with Crohn's. Mine is in the terminal ileum, and I do not have any terrible symptoms yet, but my doctor has said it will probably get worse. I thought it would be a good idea to join a blog to hear info from other Crohn's patients. I've been taking Pentasa and Entocort for the past 12 days but have not seen any real improvement yet. My doctor is now suggesting that I try Remicade or Imuron (I don't know much about either). Since my symptoms are tolerable right now, do you think it's worth waiting until it gets worse before seeking other treatment?? Any suggestions on diet or other natural ways to help? Thanks!

m911girl said...

I am 61 years old and was diagnosed with Crohns a year ago. Tried the Pentasa for 2 months and the only thing it did was empty my wallet.
My son-in-law whom is a physican researched and found that 'Low Dose Naltrexone' helped patients with Crohns. Not only is it inexpensive it worked for me.I have been on it for 6 months and have not had any episodes.

http://autoimmunedisease.suite101.com/article.cfm/low_dose_naltrexone

Stargirl said...

I'm 27 and I was diagnosed six years ago; after the initial flare-up I was treated with Imuran (azathioprine) and it worked great for those six years. I'm just now getting better after another flare-up that didn't respond to anything; I needed surgery to remove 17 cm of my small bowel (+little bit of large). I can vouch for the Imuran working well for me; it's cheap, you only take a couple a day, and I experienced NO side effects. Good luck everybody! And thank you for this blog; when I started to get sick again it was good to read about others' experiences.

Anonymous said...

hello my name is chris i have been living with chrons for 8years now back in 2000 - 2004 were my worse times for my flare ups i was alergic to remicade pentasa and prednisone didin't work, i had a fiscula attached by my lower back wich required surgery , today after the surgery a a few years back today im feeling so so for a while i was in remission and there was nothing i coulden't do , but now im blessed to only have problems like anemia , to who ever is going through flare ups and a hard times hang in there its rough my case of chrons was pretty severe but with the help of good doctors im able to still be in remission.

Jennifer said...

As an accompaniment to your "What is Crohn's" description, your readers may want to check out MayoClinic.com's article on Crohn's Disease. It covers symptoms, causes, treatments -- essentially the A to Z on Crohn's Disease. (I have a friend with Crohn's and do some writing for Mayo Clinic... so have called upon this article from time to time.) Good luck to you all.

Jodie DeLay said...

Hi! I was doing a web search for Remicade and Humira and this site popped up. I'm 36 and have had Crohns for about 14 years. The first 8 were brutal and the last six have been pretty good - thanks in very large part to Remicade which continues to work well for me. My insurance has recently said it won't cover Remicade, only Humira so I'm preparing for battle. Anyway, its nice to see an active community of Crohn's people supporting each other. I have a blog at kodyandjodie.blogspot.com that I'm using to track my progress as I prepare to run the Napa to Sonoma half marathon and raise $5,000 for CCFA. If any of you are so inclined, stop by my site and share your thoughts - or your dollars! Thanks and good luck to you and your families as you deal with the IBD beast. Praying for a cure, Jodie DeLay

Anonymous said...

Hi, my 23 year old daughter has just been diagnosed with Crohn's and has been on 50 mgs of prednisone for the last 5 weeks. She still has pain and is losing weight, tummy bloated and painful joints.Very irritable. It is devasting to her and so hard for the whole familiy.
She will add Imurek starting this week and then in 3 months hopefully be weaned from the cortisone.

Any suggestions ?

Shelly Stuart said...

I suggest that everyone with Crohn's Disease should be tested for Celiac Disease. It involves a bloodtest and an upper endoscopy with biopsies. The treatment is a gluten-free diet. There are individuals with both Celiac and Crohn's Disease.
It makes sense to me that there is an association between Crohn's Disease and diet since the intestine is most exposed to potential food allergens. The discovering of zonulin's (a human protein) affect on increased intestinal permeability in Celiac Disease and possibly other autoimmune diseases (such as Crohn's) leads me to believe that food may be involved. Increased permeability increases exposure of macromolecules (ie.food allergens) to the immune system. I have Celiac Disease and my husband has Crohn's Disease. My husband and I both control our autoimmune diseases with diet. It isn't a cure, but a treatment. My husband lives drug and surgery free and his story is in my current blog post under the recommendation #10.
I wish you the best,
Shelly Stuart, RN.
www.celiacnurse.com

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