Crohn's Disease is a chronic inflammatory bowel disease.
|Stop Smoking||Smoking can worsen the symptoms of chron's disease|
|C||It is crucial for individuals with Cushing’s syndrome to not push themselves too hard physically, eat healthily, and monitor their mental health. Cognitive issues resulting from Cushing’s syndrome may improve through mental exercises such as Sudoku. Pain can be alleviated with low-impact exercise, hot baths, and massages.|
If anyone has pictures they would like to share on the Foundation website or share their story please email me @ stopcaidnow.com Lisa Moreno-Dickinson CEO/President for Stop Childhood Auto Inflammatory Diseases www.stopcaidnow.com
Hey guys, My names Tom Stewart the founder of www.ourcrohns.com I have Crohn's myself so I understand to some extent the daily problems people can and do face. The goal of the site is to act as one massive community driven blog with as many authors as possible all speaking about their specific experiences with IBD. Crohn’s, Colitis and all other IBD related problems are mainly anti-social in their very nature. So whats better than trying to combat these issues by starting up a new community driven website where people will be able to contact each other and discusses the problems only people with IBD disease can really understand. What I'm trying to do with www.ourcrohns.com is get people to come and blog on their experiences with Crohn's and Colitis. OurCrohns.com has been designed to help people communicate with other people in simlar situations, and to allow people to tell their personal stories. But for all of this to happen we need people to join the blogging team! User accounts will be set-up by myself upon request and I’ll personally show people how to use wordpress to publish articles to the website. If you would like to contact me directly then please use the contact form on our contact page, which can be found at www.ourchrons.com/contact Also if you use MSN add me email@example.com If you have any questions then please fire away (p.s. the site is still under development, but the blog homepage is ready to roll!) Thanks, Tom.
I have not tried it because my symptoms were cured with the Specific Carbohydrate Diet, but many people in that diet group that I belong to take it and swear by it. They have great success, no pain and lots of energy.
Sorry, we have not. My 14yo son is on Imuran and has been in remission for two years now.
Hello! Has anyone had success with Low Dose Naltrexone?
I replied to you on the AS community, I have all the same auto-immune diseases your daughter has plus PG and I have been symptom free for a year by using the Specific Carbohydrate Diet, please google it. I currently take no medications except thyroid hormone for autoimmune thryoiditis and vitamin D3. I use 3 probiotics every day as well. This diet is a true miracle.
Methotrexate injections once a week work beautifully for my husband. He takes about 8 Asacols a day and no steroids of any kind. His last colonoscopy was clear. A high blood pressure drug Hydrochlorot seems to be keeping any clotting at bay with him. He did suffer from Restless leg syndrome, but, Mirapex stopped it immediately. Some doctors say that Mirapex can be used for fibromyalgia-they don't know why it works, but, sometimes it does. Good luck.
Six months ago my daughter (then 16) was hospitalized with a massive blood clot extending from her stomach to the ankle of her left leg. At the same time she developed a sudden allergy to NSAIDS. After many doctors and many tests, she was diagnosed with Spondyloarthritis, specifically enteropathic arthritis with associated inflammatory bowel disease (IBD). As she matures, the IBD could become Crohn’s or ulcerative colitis. Currently the arthritis inflammation is mostly in her spine, chest and ribs while the IBD is localized to her small intestines (only cramps and pain). She also suffers from vein damage in her left leg and tendentious in her right leg (a symptom). To add to the lovely list of ailments, most recently she was also diagnosed with Fibromyalgia. All of this is pretty overwhelming and seems very unbelievable. She sees four different specialists with four different drug treatments. Her drug treatment for the arthritis seems to finally be working (injection Methotrexate) and controlled exercise is helping with the Fibromyalgia. However she is still greatly suffering from the IBD. Her current treatment is 3X daily Belladonna phenobarb. Doesn’t seem to work. She also has developed allergies to nuts and dairy (which she never had until now). I am interested in learning what similar stories other have and what they found has worked them. It feels like the doctors just guess at treatment and we are trying one thing after another only to get limited results. I need my daughter to get her life back by controlling this rather than it controlling her. Any suggestions for alternative medicine is also appreciated.
In this Stem Cell Blog, there has been a high level of success with Adult Stem Cell Therapy. You can read what Dr. Margolis says at: http://donmargolis.com/blog/2009/02/stem-cell-research-crohns-disease-adult-stem-cells/. There are products with AFA, a natural botanical, that can increase the release of Adult Stems Cells, so we can essentially heal ourselves, without invasive procedures.
Just want to let people know of a service that is now available. Physicians for Patients is a group of doctors dedicated to helping people online in a way to help with high health care costs. People living with Crohn's Disease can ask questions at: http://crohns.physiciansforpatients.com/ You can just click on the questions tab and ask. Patients, family, and supporters of those with health conditions (including Crohns) can ask a dedicated board certified physician specialist any questions they may have. (everything is free) The idea is to give a resource for people that need alternative opinions, information, have limited access to health care (either uninsured or simply can't afford it). This way it is easier for a smaller number of physicians to help a larger number of people. If you know of anyone that might benefit from this resource, please pass this information forward. Thx! Phoebe
|Paratuberculosis Awareness & Research Association (PARA)||
Paratuberculosis Awareness & Research Association (PARA) is an organization of Crohn's disease patients, their families and others who are concerned about the relationship between MAP (Mycobacterium avium subspecies paratuberculosis) and Crohn's disease.
|Crohn's & Colitis Foundation||
The Crohn's and Colitis Foundation of America is a non-profit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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