My name is Mary and I am an IBD mom, my daughter is 6 years old, smart, caring, and happy child whom has a terrible disease that can effect everything in her world. She was diagnosed with Inflammatory Bowel Disease at age of 3. This was a hard time for our family, we lost our house and were forced to short sell it to cut our losses. During the time we were transients Rowan started having symptoms of blood when she had a bowel movement. Shortly there after a diagnosis of Ulcerative Colitis came and we immediately started treatment; when that treatment failed we tried another treatment so on and so fourth until all treatments were exhausted. After many hospital stays and blood transfusions we had our first surgical consult to have her colon removed. On April 14th 2012 she had her Restorative Proctocolectomy/JPouch (man-made colon fashioned from small intestines) surgery. Thereafter she had 6 more major surgeries due to an obstruction, adhesions, hernia repair, stenosis, and a failed JPouch. We had her JPouch removed in December of 2013. She now has a permanent end ileostomy and the surgeon spared her rectum for a possible future JPouch, she will make this decision herself as an adult. We has had a second opinion at Cincinnati Children's and their Gastroenteritis believes she might have Crohn's Disease. They diagnosed a biliary stricture and she is suspect for early onset Primary Sclerosing Cholangitis a serious liver disease is progressive, but leads to liver failure, the need for a liver transplant, no treatments currently exist. The majority (80%) of people suffering from this disease have ulcerative colitis; it is such a rare disease only 5% of UC patients have it.
We have lots of hope that she has UC, not Crohns or PSC. Currently she doesn't take any oral medications and we are happy with this fact. She still has bleeding from the rectal stump which we treat with topical steroids. Though she has had her colon removed and some believe she is "cured." She still struggles with the need for surgery due to adhesions, dehydration, joint pain, skin issue, and a simple virus puts her in the hospital for weeks. This isn't my definition of a cure. Cutting out a major organ doesn't cure the disease, it just makes Ulcerative Colitis less bloody. Now after all she has went through her Gastrenterologist thinks she has Crohn's Disease.
We do not know what form of IBD she has beyond being "Indeterminate". If Crohn's Disease isn't an Auto-Immune disease and is an infection this sparks my determination to get the world on the right track. Preventing a future child's suffering and parents for feeling helpless as they watch their baby struggle for a normal life.
Amy Hermon-Taylor wrote -
We are a group of Crohnies whose mission is to raise funds to enable the Crohn's MAP Vaccine developed by Prof. John Hermon-Taylor (King's College London) to commence human trials. This Vaccine is targeted against the bacteria thought to cause Crohn's disease: Mycobacterium avium subspecies paratuberculosis (MAP). The vaccine is designed to treat Crohn's disease and has the potential to be a Crohn's cure! The project currently on-going at King's College London will provide a new simple accurate test for MAP in humans for use in the vaccine trial.
We are very grateful to Friends of Kings College London Association Inc for supporting this project.
Crohn's Disease is an aggressive form of inflammatory bowel disease affecting 1.2 million people in the USA. Numbers are increasing, especially in children. Symptoms include chronic abdominal pain, bloody diarrhoea and weight loss. Up to 80% of sufferers will need surgery at some point in their lifetime. There is currently no cure.
We want to help change that. If you are a Crohnie who wants to make a difference then join us -YOUR VACCINE NEEDS YOU!
Visit crohnsmapvaccine.com for more info.