I am Michele Wilson from Simi Valley, California and I am a single mom. My seven year old son, Jovaan started having gastroenterologist intestinal problems when he was 4 months old. We were living in Florida when my son was first born and I remember my son would cry often, especially after I nursed him and I was told by his pediatrician that he had colic.
After one of Jovaan’s immunization is when I first noticed blood in my son’s stool. I called his pediatrician immediately and he assured me that the blood in his stool was not caused from his immunization. However, my son continued to have blood in his stool and was always fussy. For over a two month period I made several calls to my son’s pediatrician and made multiple trips to the doctor’s office regarding his condition when finally my son pediatrician referred me Pediatric GI Specialist in Orlando. His GI doctor in Orlando performed a biopsy and diagnosed my son as having colitis. He was treated with a seven day dose of steroids; however I did not see much of an improvement. Jovaan was also seen by an immunologist and he tested positive for several food allegories, so I learned how to control some of his symptoms through diet.
I can’t begin to tell you how many specialist my son had seen the first 5 years of his life. His doctors took multiple tests over the years. He was actually misdiagnosed for several years with having colitis. Every time I would take him to these doctors, I felt like I was never taken seriously. Majority of the time Jovvan’s blood test would come back positive with inflammation. Each time we would see a new doctor they would basically say the same thing. “We know there is something wrong but we just don’t know what it is.” My son had severe constipation: he would also rock back and forth all the time (now I know it was due to pain). One pediatrician prescribed MiraLAX daily which was really difficult for my son because it caused severe cramping and diarrhea since he was going to school at the time it was very difficult for him to control his bowels.
Jovaan also had a never ending appetite, he was hungry all the time yet he was not gaining weight (he weighed the same for almost 6 years). Jovaan would eat so much his stomach would get so impacted and bloated that I had to give him an enema to relieve him each experience was very traumatic for him.
Then my son began to see an Endocrinologist and was diagnose with Failure to Thrive at age three because he was not gaining weight or growing. He was so below the growth chart that he was also prescribed growth hormones, which have to be injected in the form of shots daily. The growth hormone has not been as effective as they should due to his underlying health problems.
On October 15, 2009, life stopped when Jovaan became chronically ill (he was six at the time) and he was rushed to UCLA Children’s Hospital which became our home for the next 5 months. I can’t even begin to describe the pain and suffering, Jovaan went through. After weeks of evasive testing so the doctor’s had to rule out everything else before they finally diagnosed with a rare medical disorder, called Chronic Intestinal Pseudo Obstruction Syndrome which has to do with the motility of the colon and the doctors said there is no cure for his condition at this time. There is also no specific test for Chronic Intestinal Pseudo Obstruction Syndrome that is why the doctor’s had to perform so many tests and took weeks to diagnose my son’s condition.
Chronic Intestinal Pseudo Obstruction Syndrome is a condition in which the intestines react as if there is a true mechanical obstruction or blockage. However, when tests are performed, no physical evidence of blockage is found. There is no unique sign or symptom that allows a positive diagnosis of the pseudo-obstruction. Symptoms of pseudo-obstruction vary in presentation and severity. The most common symptoms in children are nausea, vomiting, abdominal distention and pain, and constipation. Other symptoms include, diarrhea, early satiety (fullness), food aversion, and weight loss may also be present. Over time, pseudo-obstruction can cause bacterial infections, malnutrition, and muscle problems in other parts of the body. My son had all these symptoms. In November 2009, the day after Thanksgiving, Jovaan had his first surgery to temporary disconnect his colon and give him a loop ileostomy which is a surgical opening constructed by bringing the of small intestine (the ileum) out onto the surface of the skin.
The darkest moment of my life is when the doctors came in and told me that they wanted to perform another surgery and remove Jovaan’s colon, I really wanted to get a second opinion, but because of his condition was so rare there were only hand full of doctors in the country who specialized in this disorder and my son’s conditions was so acute that the doctor’s only gave me 24 hours to decide because they felt this was his only chance to have a quality life.
On February 19, 2010 the doctors performed another surgery on my six year old son Jovaan, and they removed his colon (a colectomy). My son now has an ileostomy bag. Due to his malnutrition, Jovaan has an IV line placed in his vein on the right side of his chest and is feed TPN (Intravenous Parenteral Nutrition) 10 hours a night. The first year was very challenging for my son and me because no matter how much I tried to keep his line cleaned from infections he was hospitalized eight times due to bacteria and fungus infection so far he’s had to have three line replacements.
Jovaan has not been able to attend school on a regular basis because of the chronic health issues associated with his condition.
I really feel that due to the lack of awareness in the medical field my son’s condition was not properly diagnosed. I truly believe if his condition was properly diagnosed in the early stages his condition would not have developed into its acute stage other treatment options for his condition could have been done. His colectomy could have been avoided.