CRAFT
What: Craft, a craft cocktail contest, is the Crohn’s and Colitis Foundation’s inaugural fundraising event in Fort Worth. Craft will feature mixologists from area restaurants and bars competing to make the Best Cocktail in Cowtown. The event will also feature catered food, silent and live auctions, live music and a People’s Choice Award.
When: April 27, 6 p.m.
Where: Mopac Event Center
1615 Rogers Road
Fort Worth 76107
The Foundation’s mission is to support research to find a cure and to improve the quality of life for children and adults affected by inflammatory bowel diseases.
For more information:
bit.ly/Craft2017
972-386-0607 Ext. 1
jleech@crohnscolitisfoundation.org
Texas Rangers’ relief pitcher Jake Diekman says he can’t wait to get back on the mound to face a major league hitter, and he plans to do exactly that by All-Star break time in mid-July.
“I feel like I could pitch with an ostomy, but we are going to have the three-step revision,” Diekman said one month after his entire colon was removed in surgery Jan. 25 at the Mayo Clinic.
“I’m doing really well. If this were permanent, I could pitch tomorrow. So far, I’ve felt unbelievable … perfect,” Diekman says in a Facebook Live video chat that he and his fiancée, Amanda Soltero, produced for the Crohn’s and Colitis Foundation.
“No colon, still rollin’” is Diekman’s mantra since joining more than 750,000 Americans who have an ostomy right now.
An ostomy is a surgical opening in the abdomen that connects an organ to a bag worn on the outside of the body. Diekman had a second surgery scheduled for April 12 to construct a “J-pouch” inside his abdomen from his own small intestine, then a third surgery planned for mid-June “to reconnect everything.”
An irreverent spokesman with a wry sense of humor, he lifts his “Gut it Out” T-shirt four times during the video chat to show off his ostomy bag.
“It’s right there, just hanging out,” Diekman says, pointing at the bag at one point in the video.
The Crohn’s and Colitis Foundation turned their Facebook page over to him and Soltero to answer questions live from baseball fans, fellow patients and patients’ families and friends.
“We’re here to answer anything,” says Diekman, 30.
“Yes, nothing is off limits,” Soltero adds before the two of them start answering questions openly and honestly about severe diarrhea, fatigue, trigger foods that make him feel terrible, the back-breaking pain he suffered for the last five years before his colon was removed, the night his ostomy bag filled with gas and “blew up” while they were sleeping, and how his teammates and coaches all wanted to hear his bag make noises at breakfast during spring training camp at Surprise, Arizona.
“I was diagnosed [with ulcerative colitis] when I was, like, 10. We thought it was water poisoning for, like, two or three weeks,” Diekman says, reassuring young patients watching the two-way video cast that he, too, suffered growth delays and weight loss, including 20 pounds twice just since Thanksgiving.
“In my teens, I was a bean pole. I just couldn’t keep anything down, ever … I was extremely short. Then over my [high school] senior summer I grew six inches,” said Diekman, now a lanky 6-foot-4-inches tall and edging back up to his normal 201 pounds.
One in every 200 people in the United States, 1.6 million Americans, has inflammatory bowel disease, including Crohn’s disease, which attacks the entire digestive track – “from gum to bum” – and ulcerative colitis, which destroys the colon.
“There’s a huge community out there that’s gone through it, but nobody knows about it because nobody talks about it. It’s a hidden disease,” Diekman said. “I’m surprised at the attention I have gotten. … The second I started being super open about this, people started saying, ‘I don’t know anything about it’ … I’ve had so many people reach out to me.”
Teammates and coaches have all been supportive, and strangers have sent messages telling him what has helped them so he can try their advice.
Diekman is not taking any medication now but said he drinks a lot of water and Gatorade to keep from becoming dehydrated and eats lots of pizza, pasta, rice and mashed potatoes.
Diekman’s message is directed toward children because some 80,000 U.S. children under 20 are affected by the disease, and it can be especially tough on them emotionally, physically, psychologically and socially, according to the Crohn’s and Colitis Foundation.
More than 300 children are currently under various medical and surgical treatments at Cook Children’s Medical Center in Fort Worth, said Dr. Nick Ogunmola, medical director of gastroenterology.
“We have a higher index of suspicion now [when a child comes in with symptoms], and we are definitely treating more and more children, especially teenagers 11 to 17,” Ogunmola told the Fort Worth Business Press. “We know there are genetic and environmental components – the Western diet is part of it – and we know it’s a life-long thing. It’s an autoimmune disease. The immune system starts attacking the intestines, causing severe inflammation of the bowel wall.”
Cook is participating in several research programs including a 21-year study, “Improved Care, Now,” to determine the best treatments and combinations of treatments for long-term relief of symptoms and to learn which biologics (certain genetically engineered drugs) might cause harm if taken over many years, Ogunmola said.
“If a 5-year-old develops Crohn’s, he could be taking these biologics for 85 years so we need to learn if there are any long-term problems with them,” Ogunmola said. “And we know that three out of four of these children will require surgery at some point so we continue to develop much less invasive surgery, much better treatment options.”
Inflammatory bowel disease (IBD) can have profound effects on a child but there are “fantastic IBD resources to help,” Ogunmola said.
One such resource is Camp Oasis. The Crohn’s and Colitis Foundation sponsors the week-long summer camp exclusively for children from the North Texas area with Crohn’s disease and colitis.
Some 85 campers, 30 counselors and 15 medical staff members attend camp each year, said Kate Jennings, clinical therapist for the gastroenterology department at Cook Children’s and lead mental health specialist for Camp Oasis.
“Camp is important because it’s an opportunity for the kids to just be kids. They aren’t worried about missing school for infusions, early dismissals for doctors’ appointments or what their friends will think when they have to sit out a soccer game because they feel crummy. They get to worry about important things, like which to do first, ‘The Blob’ or the zipline,” Jennings said.
Some 50 percent of children with IBD report being unable to play with school and neighborhood friends because of their disease, Jennings noted.
“Fifty percent! That’s insane. No wonder they are more likely to develop depression,” she pointed out. “At Camp Oasis they can relate to each other on a whole different level. Our campers become family to one another. Many of these kids only see each other this one time a year, but the bond they have is incredible. It’s like all of their worries about flares, scheduling, bullying – it all disappears for a week.”
Jennings is chairman of Craft, the Crohn’s and Colitis Foundation’s inaugural fundraising event in Fort Worth. Craft is a craft cocktail contest April 27 at Mopac Event Center featuring mixologists from area restaurants and bars competing to make the Best Cocktail in Cowtown.
The event will also feature food, silent and live auctions, live music and a People’s Choice Award.
The foundation’s mission is to support research to find a cure and to improve the quality of life for children and adults affected by inflammatory bowel diseases.
For more information or to purchase tickets, go to bit.ly/Craft2017.
Claim her (as opposed to disclaimer): Kate Jennings is Carolyn Poirot’s daughter.