Crohn’s disease is an inflammatory bowel disease (IBD). It causes inflammation of the lining of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss, and malnutrition. Inflammation caused by Crohn’s disease can involve different areas of the digestive tract in different people.
On June 3, 2011, Coltyn Turner drowned in a lake while attending a Boy Scout Camp in his home state of Illinois. He was luckily saved by his brother, Skyler, and three other Boy scouts. He survived the incident, but the event triggered young Coltyn’s body to develop a severe autoimmune disorder known as Crohn’s Disease. We had no idea what Crohn’s was. Coltyn started taking Asacol, even though we weren’t 100% sure it was Crohn’s and was sent home, to be seen back at the doctor’s office three months later. So we started doing our research on Crohn’s to see what we were up against. Little did we know, that day would set us on a path of heartbreak, soul searching, anger and pure determination.
“I’d rather be illegally alive than legally dead.” ~ Coltyn Turner
Obtaining a Diagnosis:
Shortly after his drowning Coltyn got sick with a lot of stomach pain, frequent bathroom visits, fatigue, and vomiting. So we, of course, took him to the doctor. She ran a ton of tests, and it was determined that he had a bacterial infection from the lake water he ingested when he drowned. But a few of his tests came out abnormal. His Complete Blood Count (CBC) showed significant anemia, his C-reactive protein (CRP) and Erythrocyte Sedimentation Rate or SED rate (ESR) were significantly elevated indicating the possibility of inflammation and his Vitamin B-12 was low which can be an indication that the small intestines aren’t absorbing nutrients properly. The pediatrician suggested we see a Pediatric Gastroenterologist (GI). Between seeing the Pediatrician and getting to the GI, Coltyn quickly declined and was experiencing more pain and now bloody stools. So a visit to the ER was inevitable.
It was quickly determined that Coltyn needed many more tests including ultrasounds, EGD’s, Colonoscopies, X-rays, MRI’s and more blood tests. After a couple overnight stays in the hospital, all these tests performed, we finally got a partial diagnosis of Crohn’s Disease, a chronic inflammatory condition of the gastrointestinal tract and may affect any part from the mouth to the anus
(www.crohnscolitisfoundation.org). The GI said he was about 70 percent sure it was Crohn’s. Coltyn was given Asacol, similar to aspirin, and we were told to make an appointment to follow up in 6 months. WHAT? Was the physician 70 percent sure? This was not good enough. So we headed to the Mayo Clinic.
The Mayo Clinic ran many of the same tests, but there was one, a really important one, that they did very first. A Carbohydrate Breath Test (www.cdd.com.au) Carbohydrate malabsorption is the inability to absorb certain sugars like fructose, lactose, sucrose, and sorbitol in the gastrointestinal tract. Coltyn’s carbohydrate test was the highest in fructose; it was the highest the Mayo Clinic had recorded at that time. An overwhelming amount of patients who suffer from IBD also suffer from sugar malabsorption or intolerance.
After all the crazy tests the poor kid was put through AGAIN, we finally got a 100 percent diagnosis of Crohn’s Disease. And then the fight began. The medicines thrown at him had some of the scariest black box warnings I’d ever read. We will start with Remicade (Infliximab) because that’s when we realized Coltyn’s journey wasn’t going to be an easy one.
Remicade is a TNFa blocker (tumor necrosis factor alpha) or what we laymen call a “biological.” It’s commonly used in auto-immune disorders. It’s administered like Chemotherapy, in an IV infusion. Coltyn’s first infusion of Remicade took 6 hours and 4 hours after the infusion was finished, he was in severe abdominal pain and back in the ER. His doctor thought he perforated his colon while doing a colonoscopy but after further examination, that wasn’t it. So he was given Tylenol 3 with codeine for the pain and sent home. Finally after four more infusions within a nine-week period, lots of pain meds and Benadryl, blood work showed he was making antibodies to the medicine, he was showing signs of Rheumatoid Arthritis (RA) and Lupus which is a side effect from Remicade. Shortly after stopping the Remicade, Coltyn was officially diagnosed with RA and Lupus and serum sickness (www.remicade.com).
We tried Methotrexate next, and with only one shot Coltyn’s face swelled, and he was having profuse nosebleeds.
A few meds were given in between, but the next significant medication Coltyn was given was Humira (adalimumab) which I was completely against. Humira (www.humira.com) has a similar black box warning as Remicade. They are in the same family of TNFa blocker of biological medicines. Remicade is made with mouse DNA and Humira with human DNA. Coltyn responded well to Humira for quite a while. The damage it did to Coltyn mentally was heart-wrenching. Humira is administered by injection in the thighs or stomach, and Coltyn describes it like being stung by 100 wasps all at the same time. We used numbing medications and rubbed ice on the shot area to try to make it better but to no avail.
He’d scream so loud that his brother and sister would go upstairs before he got his shot, put headphones on to drown out his screams and just hold each other, while Tommy and I were holding Coltyn down because he’d fight us. Now getting shots or even a wasp or bee flying around triggers a mental breakdown.
After about six months of Humira, the inevitable happened. Coltyn started getting sick again. He was never in remission with any of these medications. He was always in the bathroom either suffering from diarrhea and constipation or vomiting. It just never stopped. He went camping Oasis for a week, a camp for kids suffering from IBD and not one of them had an immune system. Well, who do you think comes home sicker than he left? Yep. Coltyn. The lymph nodes in his neck were about the size of golf balls. So off to the ER we go.
The first diagnosis was strep. The next was pneumonia. The one after that, tuberculosis (TB). That was a nightmare. (www.Coltynscrue.org). After many months of searching for the right tuberculosis type and botched surgery, Coltyn didn’t have TB after all. Now they thought it was Hepatosplenic T-cell Lymphoma. Quoting the official Humira website, “This type of cancer often results in death.” WHAT?!
OK… Enough was enough. We were determined to find an alternative to these nasty pharmaceuticals that were threatening the life of my kid. By this time, Coltyn had been off Humira for six months, and he was deteriorating fast.
Coltyn was dying; he was grossly underweight and so weak he was in a wheelchair; he spent most of his days in the bathroom and nights sleeping there. He did his homework in the bathroom! He looked like a vampire. His hair was getting thinner, and the circles around his eyes were getting darker.
So I took matters into my own hands and started researching “alternative” medicines, when I came across a study from Israel (www.Coltynscrue.org) that stated, “…a short course (8 weeks) of THC-rich cannabis produced significant clinical, steroid-free benefits to 10 of 11 patients with active Crohn’s disease, compared with placebo, without side effects.” Wait… WHAT? Marijuana? Can marijuana be used to treat Crohn’s? WITHOUT SIDE EFFECTS??? Coltyn is going to Colorado!
Adding Cannabis as a Treatment Option:
On March 4, 2014, just four days after Coltyn’s 14th birthday, Tommy drove Coltyn to Colorado to search for a miracle. We became Cannabis Refugees.
We were so lost. Not only did we know nothing about cannabis, but Coltyn was also so frail that we didn’t know if he could make the trip without a hospital visit or even at all. But it was our only hope. And we had to try. Because the worst thing that could happen is that it wouldn’t work. So what if he got high! He was high on Morphine and OxyCotin all the time. Was I scared that his brain or liver would be damaged? Not any more than on pharmaceuticals!
It took three weeks to find a consistent supply of cannabis oil. Until then, Tommy would go to a recreational dispensary, buy strains of just flower products(Cannatonic, Sour Tsunami, AC/DC or Harlequin) and made brownies. Just on the brownies, Coltyn’s life blossomed. He was growing and gaining weight. He was out of the wheelchair.
But it wasn’t easy. There was no consistent supply of products nor was it tested appropriately. In Colorado, Medical Cannabis is NOT tested where Recreational Cannabis IS tested. It should all be tested yet the laws have not caught up to the science.
No one we were in contact with knew how to dose Coltyn. All the people who used cannabis for Crohn’s were adults who smoked. We quickly called the Marijuana Enforcement Division in Colorado to ask if they knew of any other pediatric patients using cannabis for Crohn’s and if so could they give me the name of the recommending Doctor.
But Coltyn was the first and at that time, the only. So the trial and error began. I spent hours on the internet talking to other adults who used cannabis and always got the same answer, “start low and go slow” and don’t get him high.
So we started with a 20:1 CBD to THC ratio and quickly realized he needed more THC, so we gave him edibles because we knew infused brownies worked and slowly integrated the THC into the oils until we found that 15 milligrams of CBD and 15 milligrams of THC (1:1 ratio), 4 times a day in a vegan capsule, was his magic ratio.
Results with Cannabis Use:
Seven months into Coltyn’s Cannabis treatments, he had a colonoscopy done. He was in complete remission. No active Crohn’s disease. It’s been over three years. Of healthy, worriless teenage years. Coltyn is back to normal. Normal is SO GOOD! We continue to learn about cannabis and share other stories of kids using cannabis for Crohn’s with the same crazy results as Coltyn. Remission!
Coltyn travels the country spreading awareness and educating people about the benefits of cannabis for Crohn’s disease, RA, and Lupus. He recently traveled to Washington D.C. to talk to federal legislators about his story and encourage them to vote for beneficial cannabis reform. He was also part of a published study on Crohn’s Disease and Cannabis that was done in Colorado. Today, because of our choice of incorporating cannabis into his healthcare plan, Coltyn is healthy using cannabinoid therapeutics daily, actively working toward his eagle scout, hiking & laughing with his siblings, and speaks on a National level regarding cannabis policy and patients’ rights.
Leaving our home state and moving 14 hours away hasn’t been the easiest on our family. Being away from the people Tommy and I grew up with, our family and friends, our gymnastics school and the small town safety of “home” is hard. But Tommy, Skyler, Ryleigh and I would do it all over again in a nanosecond if it meant that Coltyn would be healthy.
Cannabis saved Coltyn’s life.
http://www.cghjournal.org www.remicade.com www.humira.com