Athletes with Crohn's Disease

It has been a while since I have posted and wioo start posting my own experiences again. In the meantime, its also been a while since I posted a list of athletes (past and present) who live with Crohn's Disease. So here you go:

David Garrard - Retired NFL Quarterback - Garrard suffers from Crohn's disease and has appeared in television commercials regarding treating the illness. He has spoken to children at the Painted Turtle Camp, a camp for children with disorders about living with Crohn's disease.

Carrie Johnson - Olympic Kayaking

George "The Animal" Steele - Wrestler - Maybe he got it from eating the turnbuckles

James Morrison - British Golfer

Kevin Dineen  and Theo Fleury - NHL Hockey Players with Crohn's (Thank god for pads)

Matt Light - NFL Football with Crohn's Disease - Go Patriots! The three-time Super Bowl champion had surgery to remove more than a foot of his intestine. Now retired from football, the athlete shares his story with others to raise awareness and educate the public about Crohn's disease.

David Garrard - Crohn's Disease Hero!

No matter how this football game ends, David Garrard is doing an awesome job. Through 3 quarters, David Garrard has 3 touchdown passes and 0 interceptions to Peyton Mannings 3 and 1. My favorite athlete with crohn's disease is having a monster night and after 3 is leading his Jacksonville Jaguars to a potential victory over the Colts. Not bad for a fellow Chronie!

Does Brock Lesner have Crohn's Disease or Colitis

Does Brock Lesner have Crohn's Disease? Dana White announced that Brock Lesnar has a potentially career-ending illness. White didn't name the illness, except to quiet unfounded speculation by saying it isn't cancer or AIDS and that it is an "intestinal disorder" that requires "major surgery." We do know that UFC fighter Drew McFedries has fought with and fought against Crohn's for many years (see my blog post)


This, of course, has fans speculating about what the mystery illness could be. So far, the best guess appears to be Colitis or Crohn's Disease. Stay tuned, if Brock Lesner is confirmed to have Crohn's I will get the scoop.

Stress, Life Work and Crohn's

So my Crohn's has actually been doing a bit better lately, but I still deal with stress related flare ups. Stressing over finances, work and life in general aren't good for Crohn's Disease. Combine the fact that I have been away from my wife 5 days a week since we got married and it makes for some rough days. Lately the pain has been pretty intense, but a lot of things feel like they are turning the corner. Work looks like it will take off soon and Sarah will be here full time. WOOOHOOO!!!

Here is to Beach Life!

My Quick Crohn's Disease Update

Haven't really talked about my Crohn's in a while. My life has been nuts lately. I've been under a ton of financial stress, and dealing with my past relationships...well one of them anyways. An utter nightmare that I am so glad to have behind me. No idea how I made it through the past 9 months without a major Crohn's flareup.

Now I am dealing with getting a new company off the ground, all while trying to keep my house and pay my unworldy, huge child support payments. Fortunately I have found someone that gives me so much support, I wonder how I even deserve it.

Anyways, I am pretty much not on any medication right now. Supposed to be on Entocort, but I never really got its started. I've been leading a healthier lifestyle, and the overall hapiness negates the "small stuff" stress. I still deal with cramping and all the other fun stuff, but it seems more manageable. Maybe the Prochymal did help?!

I've gotten alot of very inspirational emails and comments from my fellow chronies. You guys amaze me....your Crohn's Disease makes mine look like a hangnail, but you remain positive. Keep your head up guys. God has a plan for us all. Keep fighting, and continue to inspire those around you.

Ayr United Scottish Soccer Player (David Gillies) from Battles Crohn's

Being a soccer player with Crohn's Disease myself, I can appreciate the story of David Gillies, below. It is hard enough watching playing local co-ed soccer with stomach cramps, dehydration, malnourishment, lack of iron, etc...So I have allot of respect for professional atletes with Crohn's disease. Most of my followers know that based on my man-crush on David Garrard. Other Athletes with Crohn's - Obby Khan, Tairia Flowers, Carrie Johnson, Theo Fleury, Shane Corson.

Ayr Utd star David Gillies' battle to beat pain of Crohn's Disease
By Maria Croce, Daily Record

AYR United striker David Gillies was warned he might never play football again after being diagnosed with bowel disease Crohn's. But he vowed to prove doctors wrong and now he wants to inspire other sufferers to follow their dreams rather than give in to the condition.

David, 25, and girlfriend Leanne Robbie, 23, live in Ayr with their four-year-old son Brandon.
They're expecting another child and have much to celebrate now David's fit again. But last year it was a different story with David facing the prospect of losing his footballing career just as it was about to take off.

Last June he began suffering crippling cramps in his stomach. "It felt like a really sharp pain - like a knife being twisted in my stomach," he said. "It would last a couple of seconds and take my breath away. Sometimes it would happen when I was training - but it was most days."
But he battled through his football training while doctors were baffled by his condition.
"It took forever to find out what was wrong with me," explained David.

"Doctors said it went against me because I was so fit and played football - that made it difficult to diagnose because I continued to train even though I was in pain.

"I pushed myself through. And when I went to the doctor they'd say, 'On a scale of one to 10, what's the pain like?' And I'd say, '10'. But he'd look at my notes and say, 'It can't be a10 because you're training every day'. When you play sports you just get used to playing with injuries. I was enjoying it so I kept doing it and tried to ignore the pain.

"I can remember the day it started in June. One evening I just threw up at home but I felt fine the next day and went training. "I was with Airdrie and although I trained fine, I started getting stomach cramps and could hear my stomach gurgling. I thought it was because I'd changed my diet and started eating more healthily.

"But then four weeks into the season it got worse. I went to the doctors but they told me it was a stomach bug. But the pain kept returning."
Over the next six months David went to hospital six times for investigations including a barium X-ray.

"I'd been playing with Auchinleck juniors and this was my big move to Airdrie," he explained. "Before I'd been scoring lots of goals. But I went to Airdrie and ended up on the subs' bench. I felt I was so much better than I was showing. I couldn't make excuses for feeling terrible, so I'd just try to train. But I knew I wouldn't be able to last 90 minutes playing because I felt so bad."
Then in December he underwent an endoscopy. A tiny telescope was used to look inside his intestine - where doctors discovered a blockage.

"I remember hearing the doctor saying, 'What's that?' during the procedure. They weren't expecting a blockage, but the camera couldn't get through.
"Even after that, they still didn't know what it was at first. I found out afterwards doctors had thought it could be cancer.

"I must admit when I heard their reaction to the blockage I feared the worst and assumed it must be cancer. I was told to stay at home for a week. But I'm optimistic and told myself no matter what was wrong I'd get through it.

"Then a few days later when they told me it was Chron's it was a relief in a way to finally know what was wrong and know it wasn't cancer. But I didn't know that much about the condition - although I knew there was no real cure. And I was warned I'd probably need an operation.

"My first question was whether I'd have a colostomy bag. Doctors said I might need one as a temporary measure - but luckily that didn't happen.
"Then doctors told me I wouldn't be able to play football again. They said it was hard to believe I'd ever be fit enough to play any football again.

"But I refused to believe them and vowed to play again. Looking back I can see why they thought I'd never play again.
But then I felt they didn't know what I was capable of doing.
"I thought nothing can be worse than what I've already been through. But I did wonder a few times whether it was all worth it to keep pushing myself to play.

"I'm also a qualified plumber and have my own plumbing business so at least I knew I had another job to do.
"My girlfriend Leanne would watch me in pain and question why I was putting myself through it just to play football.

"But I always wanted to be a footballer and I love playing. When I got the chance to play for Airdrie last summer it was a massive step because it was full-time. But then it took the shine off it because I started to feel really ill. I couldn't enjoy it as much as I should have."
David underwent an operation on December 23 to remove part of his intestine and got home on Christmas day.

He discovered his heart had momentarily stopped during the procedure. "They under-estimated how slow my heartbeat was because I was fit. I told the boys at football afterwards and they nicknamed me 'Death'."

He has to take special drinks, is free of pain and was back playing two months later for Airdrie.
David feels he's finally fit again and has signed for Ayr United. He jumped at the chance to talk to youngsters with Crohn's (chrones, chron's, chrones, crones).

He spoke at the Glasgow Science Centre at an event by the Catherine McEwan Foundation - set up by Scot Derek McEwan in memory of his late mother, who suffered from Crohn's.
The foundation's aim is to help young Scots with the condition and work with the charity the National Association for Colitis and Crohn's.
Inflammatory bowel diseases like Crohn's and ulcerative colitis affect about one in 400 people in the UK.

Diagnosis is usually made between the age of 10 and 40 and you have a higher chance of developing either illness if you have a close relative with the condition.
Crohn's causes inflammation of any part of the gut - the oesophagus, stomach and small and large intestine. Typical symptoms can include pain, ulcers, diarrhoea and feeling unwell.
The outlook depends on which part of the gut that's affected and the severity and frequency of symptoms. But most people will require surgery at some point.

For David the future is bright. "It doesn't hold me back at all now," he explained.
"And when I spoke to the young people it was good to hear I'd given them hope. I heard that a lot of kids think that once they've got it they can't do much - but that's really not the case. There are lots of different medications you can take to help you lead a normal life. I got this at 24 - but
I felt for the kids who were so much younger finding out they've got it.

"But gold medalist rower Steve Redgrave has got it too. He's an inspiration - I just play for Ayr United. I wanted to say to the kids with Crohn's not to give up their dreams."

US Olympic Athetes with Crohn's - Carrie Johnson and Tairia Flowers

It just dawned on me that after reading about two olympic athletes with Crohn's in Sports Illustrated, that I never created a blog post. So sorry if I am a bit late to the game keeping my peeps in the Crohn's loop on this one. Carrie Johnson of the women's kayaking team and Tairia Flowers US Softball infielder are the two US Olympic Athlets with Crohn's Disease. As a soccer player, runner and athlete I have a lot of respect for these two women and their accomplishments. It's hard enough to make it to the olympics in any sport. Anyone up for some new sports? I think I can take anyone in Speed Pooping! I heard they are considering adding "Hovering" at the 2012 Olympic Games in London!

So about the athletes:

Tairia Flowers is representing the United States at the Olympics for the second time in her career this summer in Beijing, where she will play first base and catcher for the gold medal favorites. Flowers, who married a former UCLA basketball player, was limited in Athens by a Crohn's disease.

Carrie Johnson recently placed fifth in the 2007 World Championships of Kayaking. She was also the first U.S. kayaker to qualify for the 2008 Olympics in Beijing. Carrie Johnson also makes no secret about the fact she lives with Crohn's disease.

Carrie's Crohn's symptoms began while she was training for the Athens Olympic Games in 2004. While she was training for the Games, Carrie began suffering from extreme fatigue, severe weight loss and anemia. Carrie is a proud advocate for people living with Crohn's disease. She is actively involved in the CrohnsAndMe website (CrohnsAndMe.com), a site dedicated to people whose lives are affected by Crohn's disease. The website contains useful links to Crohn's disease resources, a tracking feature to help keep records of Crohn's symptoms, and information about the treatment available for Crohn's disease. Johnson, a native of California, is now 24 years old, and will compete in Beijing in a 26 pound single kayak.

Big Doctors Appointment Today - Details on Clinical Stem Cell Trial

So today I go to see if I qualify for a clinical trial that would involve a fairly non-invasive blood and bone marrow transplant for my Crohn's. UPDATE: I AM IN! I GET MY FIRST INFUSION IN TWO WEEKS. TODAY I DID A TB TEST, EKG, BLOODWORK, B12, AND A 1 HOUR INTERVIEW. I HAVE A CT SCAN TUESDAY AND AS LONG AS THAT SHOWS ACTIVE CROHNS I AM READY TO GO. I should qualify based on my lack of response to most other treatments. I think the details below are for the actual study I would be getting involved in. Right now, I have been under quite a bit of stress and am on the brink or at the beginning of a flare-up. I've been eating pretty light and eased off the drinking a bit in an effort to get in shape and keep my Crohn's at bay. I am so used to dealing with the pain by now (without the aid of painkillers for the past few weeks) that I don't even realize how much I actually hurt. I think that mental focus and disassociation keeps me feeling better. As I move forward with my divorce and new relationships I know that I need to take better care of myself and better educate those around me about Crohn's Disease. Sure, I guess it may be embarassing as I move on with dating, etc but the right person isn't going to get caught up in the minutiae and will understand.

Also, thanks to you all for your support of this site. I am proud to be able to educate, assist, and commiserate with you all!



This Phase III study is a multi-center, placebo-controlled, double-blind study of the safety and efficacy of Prochymal™ IV (ex-vivo cultured adult human mesenchymal stem cells) to treat moderate-to-severe, treatment-refractory Crohn’s disease.
Patients who are eligible and willing will be entered into two studies. If there is response at 28 days to protocol 603 and the Crohn's disease activity index (CDAI) is over 220, subjects are eligible to be re-randomized and receive Prochymal in protocol 610. Both protocols 603 and 610 involve four intravenous infusions within 14 days, with a safety follow-ups for two years.
Eligibility
Inclusion criteria:
Inadequate response, lost response, or documented intolerance to steroids, immunosupressants, and biologics (within the past 24 months)
Between 18 and 70 in age
Between 88 and 330 lbs in weight
Diagnosis of Crohn’s ileocolitis, colitis, or ileitis
CDAI between 250 and 450
Exclusion criteria:
Permanent colostomy or ileostomy
Active infection with HIV, hepatitis B or C, or clostridium difficile-associated disease
Obstructive fibrostenotic Crohn’s disease requiring hospitalization within three months of study enrollment
History of total proctocolectomy or subtotal colectomy with ileorectal anastomosis
Prednisone greater than 20 mg per day within 28 days of enrollment

Stem Cell transplant Crohn's Disease - Stem Cell Research and Crohn's Articles

Long story short. I am now having what I think to be an allergic reaction to Humira. (I have had them to Remicade in the past). My doctor wants me to stop treatment and come in next week to discuss the possibility of a stem-cell transplant. I profess complete ignorance and in fact know nothing about it. Below are some articles that I have not even had time to read yet. In scanning them apparently they can cure Crohn's, something I did not understand to be possible. I meet with Dr. Shafran and his staff a week from Monday to discuss this. I plan on doing a whole lot of research in the meantime. It looks like it has only been done a few times (see below). Grasping at straws here, but does anyone have any insight?
-Scott

Stem Cell Research and Crohn's
Roanoke Teen to Head to Chicago in Pursuit of Crohn's Disease Cure (from July 2003)
An insurance company, hospital and federal regulators have approved a Roanoke youngster with a severe intestinal disease to have an experimental stem-cell transplant that could cure or kill him.
Thirteen-year-old Jordan Fifer heads to Children's Memorial Hospital in Chicago later this month.
People ask him if he is scared or afraid of dying. He tells them he's not.
"I don't know why I am not scared. I'm just not," he said. "I'm incredibly eager. And I just know when I come back, I will be able to do things that I haven't been able to do for so long and that means a lot to me."
Like eat a piece of pizza and have the energy to play soccer.
Jordan, who this fall will be a freshman at Patrick Henry High School and the Roanoke Valley Governor's School for Science and Technology, was stricken with Crohn's disease at about age 10. With Crohn's, the digestive system comes under attack by the immune system. When the disease is active, it causes stomach aches, diarrhea, rectal bleeding, weight loss, fatigue and fever.
About a million Americans have Crohn's or a similar condition, ulcerative colitis, according to the Crohn's and Colitis Foundation of America. There is no known cure.
Jordan had tried without success to get relief through a variety of prescription drugs and other traditional therapies. His mother, Hope Trachtenberg-Fifer, learned about a Chicago medical team that has treated about a dozen Crohn's patients, adults and children, with a transplant of blood stem cells.
Jordan's health insurer - he's insured through his dad Gary's health plan - this week approved paying part of the cost for Jordan to have a transplant. He will be the youngest person treated so far.
Blood stem cells are the building blocks of blood inside the bones. Already, blood stem cell transplants correct disorders of the blood and disease-fighting immune system and repair damage to such systems caused by some cancer treatments, such as chemotherapy.
But until the transplant has been proved to address Crohn's, it is classified by the federal government as an experimental treatment. The U.S. Food and Drug Administration supports the ongoing experiment in which Jordan will participate and has approved methods to be used.
So within weeks, Jordan will leave for a three- to four-month stay in the Chicago area. He will be hospitalized only part of that time but must remain near the hospital for follow-up care. His mother will stay with him at a home for transplant patients and their families, from which Jordan and his Mom may move to an apartment.
Here's how the procedure works: Medication will draw stem cells from Jordan's bone marrow into his bloodstream for collection (he'll be his own stem-cell donor). High-dose chemotherapy will destroy his immune system. Then doctors will reintroduce the stem cells to his bloodstream. If all goes well, the cells will create a new immune system without the malfunction that afflicts Jordan today.
The procedure carries a small risk of death. Jordan's immune system may not regenerate, placing his body at serious risk of infection. He also could have an allergic reaction.
The Crohn's and Colitis Foundation of America, dedicated to education, patient support and fund raising for research, sounded a note of caution. The organization released a statement in which a member of its scientific advisory panel, Dr. William Sandborn of the Mayo Clinic, said he's uncertain the benefits of stem-cell transplants in Crohn's disease patients outweigh the risks.
Jordan's mother said all of about a dozen people who have had the procedure have been helped. The average Crohn's patient does not experience severe symptoms and does not need a transplant, she said. However, Jordan's Crohn's, because it is uncontrolled, actually poses a much higher risk of death than the procedure, she said.
Jordan has been hospitalized numerous times. He takes 33 pills a day. He suffers from bouts of digestive system bleeding that sometimes make it necessary for him to have a blood transfusion. His disease has stunted his growth and kept him from school and social activities. Yet, the youngster is getting good grades, played xylophone in his middle-school band and volunteers.
"Patients like Jordan, like my child, who have volunteered for this study are very desperate patients who are looking for light at the end of the tunnel and, it seems, have found it," Trachtenberg- Fifer said.

First Patient to Get Stem Cell Treatment for Crohn's in Remission
By Peggy Peck WebMD Medical News
Reviewed by Gary D. Vogin, MD
Aug. 10, 2001 -- Joy Weiss treated herself to a Big Mac for lunch on Friday and then considered whether she should top off the meal with a salad, some fruit, or both. For most 20-somethings, that doesn't sound like an extraordinary lunch choice, but for Weiss it's a miracle meal.
The miracle in this case is a controversial, experimental medical procedure that involves stem cells harvested from a patient's own bone marrow.
Ten weeks ago, Weiss became the first person to undergo the stem cell infusion for treatment of Crohn's disease, a condition in which the body's immune system attacks the patient's digestive tract. On Monday, researchers at Chicago's Northwestern Memorial Hospital completed a second such treatment in another Crohn's patient. The second patient, reportedly a 16-year old male, has requested anonymity, says Richard Burt, MD, lead researcher in the pilot study. Burt says, however, that the second patient is doing well.
For years, Weiss did not know a single day without pain, the gut-wrenching pain caused by Crohn's disease. "Until I was 19 I could never get my weight up above 90 pounds," says the 22-year-old Weiss. Dairy foods, salad, fruit, nuts, fried foods -- all were dietary no-no's for Weiss, who was diagnosed with Crohn's disease when she was 11.
Over the years of treatment for the condition, Weiss suffered through as many as 10 daily attacks of painful diarrhea characterized by watery, bloody stools.
Treating the Crohn's symptoms required the powerful steroid prednisone, which helped quiet the inflammation caused by the disease but also weakened other tissues in her body. Moreover, years of intestinal disease plus steroid therapy impaired her body's ability to absorb calcium, so she has developed osteoporosis, the bone-wasting disease normally associated with old age.
Two years ago, Weiss' doctor began using IV tubes to deliver "night feeds so that I could get some nutrients." Her gastroenterologist recommended her for a colostomy, a procedure in which a large part of the colon is removed and the patient wears an external bag for waste. But after examining her, "my surgeon said that although my body was ready for a colostomy, I wasn't ready psychologically, so he said he would look for other alternatives."
The surgeon turned to the Internet, and there he found an article about Burt's proposal to treat Crohn's disease with an experimental procedure that required a stem cell transplant, using cells harvested from the patient's own bone marrow. This type of transplant is used to treat leukemia and other cancers.
Burt and his co-investigator Robert Craig, MD, had been waiting for about three years for the "right patient for this procedure," says Craig, a professor of medicine at Northwestern University Medical School.
The pilot study in which Weiss was the first patient will eventually include 10 Crohn's patients who have "failed all other accepted therapies," says Burt. Craig tells WebMD the patients not only "will have failed all other therapies, but they also must convince me that they are willing to take the risks associated with stem cell transplant."
continued...
Stem cell transplant is an experimental procedure that definitely carries its own risks. First, the cells are harvested from the patient's bone marrow, and then the patient is treated with powerful chemotherapy drugs, which are used to destroy the patient's immune system. After the immune system is destroyed, the patient's stem cells are injected back into the body and the patient is kept in a sterile environment for two weeks so that the "new" immune system can develop. During this time, any infection can pose fatal risks.
Because Crohn's disease is usually not fatal, some researchers are questioning the advisability of treating the disease with such a risky procedure.
In a statement released Thursday, the Crohn's and Colitis Foundation of America said "We are not certain that the benefits of stem cell transplants in Crohn's disease patients outweigh the risks. ... Scientists have yet to determine whether stem cell transplant can initiate a long-term remission in people with Crohn's disease. In addition, the potential benefits of this therapy must be weighed against the risk of infection. While Crohn's patients have an altered immune system, researchers have not yet determined whether Crohn's can be qualified solely as an autoimmune disease. Until those questions are answered through carefully monitored, long-term clinical studies, stem cell transplant in Crohn's disease patients remains an investigational therapy."
Craig tells WebMD, "I agree with the CCFA. Believe me, a patient has to convince me that this is the absolute right thing for him or her." He says that he worries "about the possibility that I will lose a patient to this therapy."
The type of caution expressed by Craig is well placed, says Richard MacDermott, MD, head of gastroenterology and immunology at Albany Medical College in New York. "This is obviously a truly investigational procedure at the very beginning of the investigational ladder. It has a long, long way to go," MacDermott tells WebMD.
"I don't personally know the [rate of sickness and death] associated with stem cell transplant, but it has got to be significant," says MacDermott, who is a trustee of the Crohn's and Colitis Foundation of America.
Burt says the procedure "wasn't done in a cavalier or relaxed manner -- the procedure was approved by the FDA." He says, too, that the chemotherapy used in his stem cell protocol is not as toxic as earlier stem cell transplant experiments. "The only complication that we had was a two-day fever," says Burt, who adds that tests done during that two-day period turned up no evidence of infection.
From her perspective, Weiss says she underwent two cycles of chemotherapy and neither was "as bad as my worst days with Crohn's." She says that she started feeling better "almost right away. All the pain didn't leave but it started getting better right away. This is the first time I have had a Crohn's remission in 11 years."
continued...
Weiss spent about two and half months in Chicago undergoing pretreatment screening, treatment, and immediate follow-up. She is expected back in Chicago on Aug. 18 for a follow-up exam and then will return again at six months, nine months, and 12 months for follow-up. After 12 months, "I'll go back every year for five years," says Weiss. Craig says that it will take at least five years to confirm a true remission of disease.
Meanwhile, at her home in Mariaville, Maine, population 500, Weiss is enjoying the "first summer of my life." Always interested in horses, Weiss is anticipating applying to college to study "equine science. I have a mare here and now I am able to go out and walk the mare. It is a miracle."

Stem Cell Transplants Cure Crohn's Disease
Another advance in regenerative medicine is reported in the Reno Gazette-Journal. Ten sufferers of the deadly Crohn's disease have been cured by stem cell transplants that regenerate the damage to their intestines and immune system. The article focuses on the young man who will hopefully be number 11 and live to see a full life. This is the sort of amazing application of stem cell medicine, like recent advances in regenerating normally fatal heart damage, that we hope will become commonplace. Being able to regenerate any part of the body in this fashion will lead to large gains in healthy lifespan.

More about Stem Cell Research, Stem Cell Transplants and Crohn's Disease:
Stem Cell Transplant
What is a stem cell transplant?
The stem cells corresponding to each part of the body provide instructions for how to grow that part. For Jordan's kind of stem cell transplant, bone marrow was drawn from his hip bone using a long needle. The stem cells were separated out and frozen. Jordan's immune system was then partially destroyed by high-dose chemotherapy, and his stem cells were reintroduced to his body in the hopes that they will multiply and build a healthy immune system.
Most stem cell transplants of this type are autologous, meaning that the patient is both the donor and the recipient. Only cells are transplanted; the procedure does not involve the replacement of any organs or other body parts. Although the transplant itself does not involve surgery, Jordan has had many surgical procedures to implant and remove ports and catheters used to inject and draw fluids and drugs.
How often are stem cell transplants performed? What are the chances for success?
Although about 2.5 million people worldwide have had stem cell transplants for various diseases (usually certain cancers), only between 15 and 20 people have had stem cell transplants to treat Crohn's disease. Jordan was the youngest patient in the United States -- and the first at Duke University -- to undergo the procedure as a treatment for Crohn's disease.
Each patient who has previously had a stem cell transplant for Crohn's disease has experienced almost complete remission. Reports from the patients and their medical teams continue to be very encouraging. The patients have experienced significant improvements, and many have been able to return to lives essentially free of the symptoms of the disease. Many have been able to dramatically reduce or eliminate their dependence on daily medication, and the resulting side effects. The younger patients have experienced growth spurts, as their bodies are relieved of the stress of the disease and receive proper nutrition.
When and where was Jordan's transplant performed?
Jordan's transplant was performed on June 2, 2005, by a medical team at the Pediatic Bone Marrow and Stem Cell Transplant Program at Duke University Medical Center. This team includes hematology and oncology specialists, gastroenterology specialists, and other support staff. Jordan and a parent travelled to Duke on April 2, 2005, and returned home to Roanoke, Va., on July 31, 2005.
How long does the stem cell transplant take?
The transplant itself (the reintroduction of Jordan's previously harvested stem cells to his body) took only 30 minutes, but the entire transplant protocol took about four months. During that time, Jordan lived in the hospital and in an apartment near the hospital. As his health permitted, he participated in distance learning and received homebound tutoring to keep up his high school studies. It will take about one year for Jordan's immune system to completely rebuild itself. Jordan will also be monitored by doctors in Roanoke, and at the treatment site, for routine checkups.
What risks and side effects are associated with a stem cell transplant?
The primary side effects of the transplant come from the chemotherapy and other drugs involved in the protocol, and not the transplant itself. Jordan has experienced nausea, loss of appetite, and hair loss. Because Jordan's immune system was partially destroyed, he is at an increased risk of infection. To guard against this, he was hospitalized in a special room with a positive air pressure system and high efficiency particulate air (HEPA) filtration. Even after returning to Roanoke, his exposure to people and places is restricted. Although all medical procedures carry some risk, and stem cell transplants carry a higher risk of complications than some other procedures, the risk of death from an autologous stem cell transplant is still extremely low.
How much will the stem cell transplant cost?
For more information about the costs associated with the transplant, see About the Fund.
Aren't stem cell transplants very controversial?
The political controversy surrounding stem cells relates to the use of animal or fetal tissue to clone embryos for research. In Jordan's transplant, like in most stem cell transplants of this type, Jordan received his own stem cells.

Happy New Years Chronies

Happy New Years to all. It's been a while and by some miracle my health has been pretty good. Hopefully I don't ruin it by celebrating too much tonight. Swedish meatballs, beer, 7-layer dip, Patron, Hypnotiq and Red Bull, Sausages....ugh. Recipe for Crohn's Disease Disaster anyone?

Anyhow, happy new year to you all. I am greatful for all of the support from the Crohn's Community and am glad to be able to provide information, experiences, and a good poop story now and then!

Crohn's Disease in NYC

Ahh, So I returned to the scene of my now infamous pants pooping site today. Unfortunately my favorite boxers weren't there (Click here if you have no idea what I am talking about). I was in New York City for ad:tech. My stomach was OK, but I am a bit worried about a blockage. I get my Humira shot in a few minutes. Thanks for all of your comments. I am teetering on the edge and somehow avoiding a flare up. I am determined to run a marathon in 2008 and am about to start training again. My goal is 8 miles by Jan 1 (at a 7:50/mile pace).

PHENOMENAL Crohn's Disease Book

If you are looking for a Crohn's Disease book for you or a loved one, do not miss Will of Iron by Peter Nielsen (Will of Iron: Principles for Healthy Living). This book talks about living your life to the fullest and basically how you can beat Crohn's Disease. As an athlete with Crohn's Disease this is by far the best Crohn's Book i have read to date!