crohn's disease of the esophagus

I have had esophogeal crohn's for a few years and am looking for others that also have it. I am looking for advice on diet and managing symptoms etc.

Comments for crohn's disease of the esophagus

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crohn's disease of the esophagus NEW
by: Lydia D.


Unfortunately, you are a very rare case and the first person I have met with (diagnosed) Crohn's of the oesophagus.

I suggest, if you haven't done it already, that you search at PubMed for papers to discuss with your doctors: http://www.ncbi.nlm.nih.gov/pubmed/11383583

www.medscape.com is also a good resource for specialist medical information (hassle-free log-in required - no strings attached).

I would also refer you to your country's clinical guidelines for the management of Crohn's/IBD.

It would also be worth keeping a patient food/mood/symptom/medication/supplement diary. This will help you better monitor your health and help you to communicate with your doctors. I refer you to the following:
http://beyondibd.com/blog/treatment/how-keeping-a-diary-can-improve-your-health/

CDAI Crohn's daily activity index
http://www.ibdjohn.com/cdai/

Bristol Stool Scale
http://en.wikipedia.org/wiki/Bristol_Stool_Scale

The comparative pain scale (no pain 0, 10 excrutiating pain)
http://www.tipna.org/info/documents/ComparativePainScale.htm

Learn how to communicate with your doctors
http://ibdcrohns.about.com/od/diagnostictesting/a/15minutes.htm

Other than that I suspect that diet is particularly important in your case - soft, well-chewed foods, etc. You might have to sip Ensure or equivalent in order to get some nutrition down you. I suggest that you discuss your diet with a nutritionist.

Sorry, that I can't help you more.

All the best,

Lydia D.

Esophagus Crohn's? NEW
by: Peter Bray

Crohn's is systemic, it can occur anywhere in the system, presumably where acidity/alkalinity is best to nurture MAP, Mycobacterium avium paratuberculosis
from Johne's Disease-infected dairy cows...whose pathogens are NOT killed by pasteurization...have you been diagnosed by a real gastroenterologist?

E-mail me at PetrBray@AOL.com and I will send you what I know, my daughter Cathy, 44 died on 2/24/12 after fighting Crohn's for 24 years--I will send you what I know--same goes for any Crohn's patient on the planet, Join our "WAR on Crohn's Disease."

PetrBray@AOL.com

Benicia, CA USA

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