Crohn's Disease and Arthritis - Anyone Else Feel my Pain?

Many Crohn's patients suffer from Arthritis as well (usually Enteropathic). It is my understanding that enteropathic arthritis usually affects a large lower extremity joint and often occurs when the bowel disease is flaring. I am an avid athlete and am constantly suffering from joint pain. It moves around from spot to spot (lots in knees and ankles), however it is ALWAYS in my hands and fingers. They are constantly sore and swollen. I am also having severe foot pain. I am experiencing my second bout where the inside foot/ankle is consistently locking while i walk, causing almost unbearable pain. I am wondering if I have a stress frature of some sort??

An excellent discussion on the topic can be found at the medhelp site.

Anyways, I have touched on this subject before, but it is a hot topic for me right now and would love to know who else has Crohn's and Arthritis and what you do to treat it.

I am a (kinda, sorta) famous blogger!

So on Monday the web traffic to my marathon training and running blog goes through the roof. I check out my stats to see where it is coming from and it is a combo of Wall Street Journal online and direct address entry. As it turns out, my running blog was the #1 feature on their blog watch section, both in print and online. Anyways, I was pretty excited, but I really wish they had focused on this blog instead. Either way, I am excited that they did mention Crohn's Disease. "As Mr. Roy chronicles his training regimen, readers see him deal with the challenges that every dedicated runner faces, like a busy schedule and nagging injuries, as well as the added burden of Crohn's disease, a chronic inflammation of the digestive tract."

Check out the article here.

Doctor's Appointment, Vitamins and More Oh My!

Had a doctor's appointment at Dr. Shafran's office today to stay on track for the osiris prochymal stem cell study. My stomach has been pretty rough lately, lots of cramping and pain. I think I may be in for the next round of stem cell infusions.

I have a lot of trouble with vitamins. Maybe it is just me, but multi-vitamins tend to aggravate my stomach (cough, cough diarrhea!). I found a new multi-vitamin in a liquid format that seems to work really well for me. If you are looking for a good vitamin..check out Nature's Plan, Source of Life vitamins. I found them onsale for 40% off at Amazon. (click the link to the left). Anyone else have any suggestions for good vitamins for people with Crohn's disease?

I have Crohn's, Should I Get a Flu Shot?

This is a question that I had to ask myself this morning. Prior to researching this issue, my suspicion was that anyone taking Remicade, Imuran or immunosuppresive Crohn's drugs should avoid. Theory being that if your immune system is weakened do you really want to be injected with the flu virus. Partially correct it seems. The flu shot contains a strain that is not a live flu virus, but most doctors seem to be recommending you wit one week after your infustion. See below, but the answer seems to be yes, you can get a flu shot if you have Crohn's.

People with inflammatory bowel disease (IBD) who are taking immunosuppressive drugs fall into a high risk group. Some immunosuppressive drugs include:
Azathioprine (Imuran)
Cyclosporine (Neoral, Sandimmune)
Mercaptopurine (Purinethol, 6-MP)
Methotrexate
Prednisone

If you are taking any of these drugs, or your immune system is being suppressed by another drug, the optimum time to get vaccinated against the flu is from late October to mid-November. A flu shot takes one to two weeks to be effective.
Also, any person with IBD, even if they are not taking immunosuppressive drugs, might want to talk to a doctor about getting a flu shot. As with any chronic condition, IBD causes the body to be under stress. This makes it harder for the body to fight off both colds and the flu. After all, struggling through one major health problem is bad enough without complications from other illnesses.

Anyone who lives with a high-risk person should get the flu shot along with the high risk individual.

Anyways, I am getting my flu shot today.

Tysabri, a Crohn's Drug by Elan Corp. - ELan Closing Offices

UPDATE December 12th -
Biotechnology firm Elan Corp. said Friday it is closing its offices in New York and Tokyo during the first quarter as it realigns operations.
Elan said it will eliminate an unspecified number of positions and revise its marketing activities for Tysabri as a treatment for Crohn's disease.
Elan said it will direct additional capital toward research and development. Elan is transitioning from a traditional sales model to one based on clinical support and education, the company said in a statement.

First, about the drug: Tysabri is an antibody, a protein that triggers specific reactions from the body's immune system. Doctors think it helps some people with MS or Crohn's because of way it interacts with natural chemical markers on the surface of cells affected by the diseases. The same markers are found on the myeloma cells that Mr. Baron has, so doctors think the drug may help treat that cancer.

The issue: Dallas lawyer and Democratic Party fundraiser Fred Baron is dying of cancer -- and fighting a drug company for use of an experimental medication, according to his son, Andrew Baron.

Mr. Baron's family says it has enlisted some famous names to lobby on his behalf: Lance Armstrong, the bicyclist and cancer survivor; Bill and Hillary Rodham Clinton; Sen. John Kerry, D-Mass; and Sen. Edward Kennedy, D-Mass., who has brain cancer.

No one can accuse Biogen Idec of playing favorites. The company has been under assault by luminaries from Bill and Hillary Clinton to Lance Armstrong, who are trying to get Biogen's Tysabri drug for Fred Baron, a legal bigwig who's dying of multiple myeloma. Tysabri is in Phase I testing in multiple myeloma patients. But Baron doesn't meet the trial criteria. And Biogen has an ironclad policy of refusing the med for so-called "compassionate use."

Biogen's reasoning is rooted in Tysabri's complex biography. As you all know, the drug was hailed as a major breakthrough for multiple sclerosis patients after its first launch, but then was pulled off the market in February 2005 because of links to a potentially fatal brain infection, PML. The drug was reintroduced in 2006 under a restrictive access program. Since then, Tysabri has won a broader market, with an approval to treat Crohn's disease. It's also seen a couple of new cases of PML in Europe; those cases were added to Tysabri's labeling.

Biogen CEO Jim Mullen has held up under the assault of publicity ginned up on Baron's behalf. Calls from the likes of Armstrong, Ted Kennedy, the Clintons, John Kerry and Henry Waxman haven't swayed him. The company doesn't want to set a precedent by allowing Baron to use Tysabri, given the PML risks--and the risk to Tysabri's future should Baron experience an adverse reaction. "We want to protect access for patients who are on the drug now and rely on it," a Biogen spokeswoman told Pharmalot. "We feel like we can't make an exception in this case."

Crohn's and Drinking, Crohn's and Sex - Both Can make for Funny Crohn's Stories for Comedian Ben Morrison

Funny interview I saw on Healthtalk...Comedian and Crohn's Patient Ben Morrison. If you read this blog, then be sure to check out the highlights of the interview below. A link to the full transcript is at the end id you enjoy. Comedian Ben Morrison broaches touchy subjects of sex and crohn's disease, drinking and Crohn's and more. Pretty good stories and jokes on the not so funny subject of Crohn's Disease

Rick:And you mean drinking alcohol?

Mr. Morrison:Yeah. I mean, if we are being honest right here especially for dating, what do you do on a date? You go to a bar. So that's part of the equation too, as far as what people do on dates, what can and can't you do and how will that affect it. I have vivid memories of being back in New York, and a girl that I was seeing was waiting in my bedroom, and we were going to get intimate. And I remember being in the bathroom, and at that point, the obstruction had flared up again like there was a baby in my stomach. I could see it. Whenever I obstruct, I distend, like my stomach sticks out. And moving hurts because, basically 30-some odd feet of intestine above the actual colon is filled, and it ain't going anywhere, so moving hurts.

And, you know, I don't know how you make love, but I like to move around a little bit. And it's kind of difficult when, (a) you are worried about farting. When you jostle enough, it's going to happen. And, (b), you're like I don't really know if I can enjoy this much when I feel like I have ten extra pounds in me. So I remember being in the bathroom just on the can just hoping I can get something out so I could enjoy this night of sex.

Rick: When it comes to communication, Ben, do you think that men and women communicate differently and that it might be especially tough for men?

Mr. Morrison: For women, it is tough. I know for a fact it is, because guys at the very least have the benefit of punching their best friend in the arm and farting on his face, which is really fun. I love it. It's a lot of fun to do. And any guy knows that. Girls don't.

I don't even think the girls fart. I mean, I know they do. I don't really hear it much. I know it must happen. But that puts them, unfortunately, at a definite conversational disadvantage because there is no societal, accepted humorous way to even tell that, “Oh, hey, that was me. You might want to leave the room for the next ten minutes.”

So yeah, it makes it more difficult. But I swear to you if I met a girl who has Crohn's or whatever, and just was hanging out with me and just went like, “Man, you would not believe what I did to that toilet,” I think I would be in love, you know. The confidence that shows is huge, and confidence is everything in the world, at least as far as your advancement in it.

Rick: But what about that urge to immediately go?

Mr. Morrison:If that is when they cut out your ileum, then yeah, I have had it. But as far as external accoutrements, no.
But the need to go, my answer to that is pretty clear. Go to the bathroom right before walking in the bedroom. Like if you are on the bed and start kissing and clothes start coming off, say, look into her eyes and say I will be right back. And then run in the bathroom, brush your teeth, smell better than when you left, and use the bathroom so you know that whatever might be residing in your colon ain't. So if you feel like you have to go, it doesn't matter. Nothing is going to come out because there's nothing there. So, you know, worry less about that actual sensation than what would happen if that were an actual problem. Does that make sense?
The thing is, no one really minds you excusing yourself to go to the bathroom. At the risk of getting a little dirty here, they are like, “Oh, he's probably going to go to the bathroom and clean himself up a little bit.” No one minds that. Especially before sex.

Rick:Let's get a question from Washington State. “When you wanted to get intimate with a woman, have you ever had trouble getting an erection because you were so worn out from your symptoms or because you were in pain? And if so, how did you handle the situation?”

Mr. Morrison:Well, that's a tough situation. I've certainly been in that situation. Every guy has. If you haven't, you're lying. I mean if I am distended, like specifically if I'm really bloated, if I am obstructing for a couple days and my stomach begins to push out, I will steer myself away from organizing a wild night of sex. And if you are dating someone - it's not like an I need to perform right now type of thing, wait until the morning. Give yourself a good night's sleep.
And if it's a one-night stand, which I have certainly had, and as long as we are talking about it, that's a much trickier situation, and you might have to bite the bullet and just say, “Look, this isn't going to happen right now.” Can I take care of you?

Full article here: http://www2.healthtalk.com/go/crohns-disease/webcasts/crohn-s-sex-and-intimacy-comedian-ben-morrison-s-guide-for-men-and-the-people-who-love-them/transcripts/3

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."

Centocor Claims Promising Results for Remicade to Treat Crohn's

Centocor has claimed promising results from a clinical study of Remicade in the treatment of Crohn's disease.

The Johnson & Johnson company said the Sonic trial has shown that more patients taking either Remicade alone or together with azathioprine experienced steroid-free remission and mucosal healing, compared to those receiving azathioprine alone.At week 26, 57 per cent of patients receiving Remicade combination therapy and 44 per cent receiving it as a monotherapy achieved steroid-free remission, the firm said, compared with a figure of 31 per cent of patients receiving azathioprine alone."

Findings from the Sonic trial have the potential to challenge the treatment protocol for Crohn's disease as these data show that introducing Remicade earlier may result in more patients achieving steroid-free remission and complete mucosal healing," suggested lead investigator Dr Jean-Frederic Colombel, professor of hepatogastroenterology at Centre Hospitalier Universitaire in Lille.

According to Dr Colombel, the results reinforced the efficacy and safety profile of the medicine. NHS Direct states that Crohn's disease is an inflammatory condition which can affect any part of the gut and affects approximately one in 1,500 people.

My day to gripe about Crohn's Disease (Another Crohn's Disease Sucks story)

Ok, I will make this short. Crohn's disease sucks ass!

Had a great weekend...enjoyed some good food (nothing towards the top of the foods Crohn's patients should avoid list) and drank a few beers each night. A few...not 2 or 3, but not 20 or 30. All weekend I pretty much planned on getting good sleep Sunday night so I could start the week rested. Yeah right, I got in bed at 10:30 and immideately felt pain and pressure. You guys with Crohn's know exactly what I mean. Long story short, I fell asleep sometime after 3 am, only to wake up at 7 still hurting.

So the postive take away is that I am (with help, support and a teamate) turning over a new leaf and focusing on eating better and drinking less beer! There I am done. Thanks for reading the blog. Oh, and by the way, I relaunched Roystory.com, my personal website.

Extreme Makeover: Home Edition - Crohn's Disease Story

I didn't get a chance to see it, but two of the people on Extreme Makeover Home Edition last night suffer from Crohn's Disease. Did anyone see it? Side note, I participated on the Extreme Makeover Home Edition project in Orlando, and actually created the website and much of the content.

When the Akers family of West Chester were selected by the show for a new home in July, there was a lot of attention on the two Akers' girls. They are living with Spinal Muscular Atrophy, a disease that causes their muscles to deteriorate.

The father Greg Akers and son Christian Akers also have health problems. They have Crohn's disease. It's a painful, unpredictable bowel disease that attacks the digestive system.
"It's like having the flu for weeks, months," said Shellie Doub, a Liberty Township woman who has two children with Crohn's disease.

"It really limits what they can do," said Shellie Doub of Liberty Township.

"If people could just extend those little kindnesses," said Doub, "to just come over and watch a video with them instead of be disappointed that they can't go out and play paintball or do the things other kids are doing."

Rachel Spradlin of the Cincinnati Area Crohn's and Colitis Foundation says 1.4 million Americans have been diagnosed with Crohn's or colitis. The two diseases are similar.
Spradlin said when the diseases are in remission you can live a normal life.
Medicine can reduce symptoms or the time between attacks but there is no cure.
She said people don't know much about Crohn's and colitis because it's not something people feel comfortable talking about.

"It's very personal," said Spradlin. "People don't go around saying they've been in the bathroom 30 times that day."

Crohn's Disease Tattoo and a 9 year old's Definition of Crohn's

So my ex got a blue Crohn's disease ribbon tattoo on her foot, which has since been covered up. Thank God. But if anyone has a Crohn's Disease related tattoo I would love to see it.


Also I had to share the story of when she just asked her 9 year old what Crohn's disease was. His response: "Crohn's Disease is a disease that makes you crap yourself."

Update: I did find one on discovery.com that represents the guy's battle with Crohn's. Click the crohn's tattoo image for details.

Prochymal Article - News Gazette

It can make you miserable. It's expensive to treat, and it involves an area of the body nobody wants to discuss in polite conversation. But if you're one of the unlucky people to have Crohn's disease, a type of inflammatory bowel disorder, help may be in sight.

A Carle Clinic doctor sees some potential in a new drug composed of adult stem cells for the more severe cases of Crohn's, and is now enrolling patients to try it at Carle.
"Basically, this is rescue therapy," said Dr. Eugene Greenberg, a gastroenterologist running the local trial of the drug Prochymal.

Crohn's disease is a chronic, lifelong inflammation of the digestive tract lining and bowels that affects about 500,000 people in the U.S., according to the drug maker, Osiris Therapeutics.
Symptoms include severe abdominal pain, cramping and diarrhea.

People who have it in its mild form live a fairly normal life with some modifications and treatments, Greenberg said. But in its more severe form, he adds, "it's pretty miserable. It's pain, it interferes with the quality of life, it interferes with holding a job."

And at a time when millions of people can't afford health insurance, Crohn's is one pricey disease to treat. The medications per single patient run about $23,000 a year, Greenberg said.
Traditional treatments for Crohn's include steroids, immunosuppressant drugs and biologic drugs.

Prochymal is composed of stem cells that have been obtained from the bone marrow of normal, healthy adult volunteers. Studies have shown the cells don't require matching between the donor and recipient, and they may have both immunosuppressive and healing benefits for people with Crohn's, according to the drug company.

Carle, one of 55 study sites in the U.S., is entering the trial in its third phase.

Greenberg said there is reason to think Prochymal will work. And since there haven't been any serious adverse reactions in earlier phases of the trial, Prochymal appears to be safe, he said – though, he qualifies, time and wider use will tell.

Patients entering this trial will receive the drug in infusion form, and some will receive a placebo.
The third phase of the study is intended to establish the drug's safety and how long remission lasts in patients with moderate to severe symptoms of Crohn's.

To qualify, patients must have confirmed Crohn's disease of the ileum (part of the small intestine) or the colon or both, and either have not improved with or can't tolerate at least one steroid, one immunosuppressant and one biologic therapy.

Qualified patients must also be between age 18 and 70, in general good health and able to go to
Carle Clinic for up to 10 visits over three months.

Patients must not be pregnant or nursing; allergic to X-ray dye, pork or beef; or in any other research studies.

David Garrard Crohn's Disease Commercial

As most of my loyal blog readers know, I have written several articles about Jacksonville Jaguars quarterback David Garrard and his battle with Crohn's Disease. Below is a video highlighting David Garrard's experiences of living with Crohn's Disease. It is basically a commercial for the CCFA, Centocor and Crohnsinthezone.com which is run by livingwithcrohnsdisease.com. Click Play below to view the David Garrard Crohn's Disease Commerical:



NFL Quarterback David Garrard - Overcoming Crohn's Disease - The most amazing bloopers are here

Message I got from one of my Crohn's Blog readers on Myspace.

Now this blog reader shall remain nameless, but it can show you the down side of Crohn's. We all try to remain positive, but sometimes we need to vent and rant. This is classic, and painfully accurate message from one of my myspace friends (that i met through this blog). I am sure many of you can relate, so I had to post this. Parental Advisory: Explicit Lyrics

I'M SO TIRED OF MESSING WITH CROHN'S!!!!!!! NOTHING WORKS, NOT THE HUMIRA, NOR THE STEROIDS, THE OTHER PILLS, NOTHING.

CROHN'S SUCKS AND I'M TIRED OF WORRYING THAT I MAY NOT MAKE IT TO THE BATHROOM, I AM TIRED OF WONDERING "IF I EAT THIS, WILL IT MAKE ME SICK?"I'M TIRED OF MY SEVEN YEAR OLD SON WORRYING THAT I AM SICK AND EMBARRASED FOR HIM THAT HE HAS TO RUN TO THE BATHROOM WITH MY IN THE MIDDLE OF THE GROCERY STORE.

I'M SICK OF THE SHITTY INSURANCE COMPANY SUCKING EVERYTHING FROM ME BUT THE ACTUAL CROHN'S. I'M SICK OF SURPRISE BILLS FOR MEDICATION THAT DOESN'T WORK.I'M JEALOUS OF MY HUSBAND FOR BEING ABLE TO ACTUALLY FART AND NOT WORRY THAT HE MAY SHIT HIMSELF.

I AM SICK OF WORRYING THAT I MAY BE SICK DURING INTIMATE MOMENTS WITH MY HUSBAND. I'M JUST TIRED OF IT. IT ALL SUCKS BIG HAIRY BALLS. THANKS FOR LETTING ME VENT. SORRY FOR THE LANGUAGE, BUT I THINK YOU PROBABLY HAVE HEARD THE BAD WORDS BEFORE.

I KNOW YOU DON'T EVEN KNOW ME, BUT IT'S COMFORTING TO KNOW THAT THERE IS SOMEONE I CAN VENT TO THAT COMPLETELY UNDERSTANDS WHAT I'M GOING THROUGH.

Crohn's Disease is Annoying

So am i having a Crohn's Flare up or not? Hard to tell. I have felt pretty good since the first round of the Osiris Prochymal Stem Cell study, but I have had flare symtoms since Saturday. At first I thought I ate some bad seafood (at Goombays in Satellite Beach), but now I wonder if it is a full on Crohn's Disease flare. I go to Dr. Shafran's on Thursday so maybe they will have some insite. I guess the positive is that I would get to start the next phase of Prochymal. I will keep you posted. In the meantime....back to the bathroom.

Humira Being Used to Treat Crohn's in Kids

9/15/2008 LAS VEGAS, Nev. -- More than half a million Americans are living with Crohn's disease and more than 100,000 of them are kids. There's no cure, but researchers have found a way to help ease the painful symptoms.

Fifteen-year-old Taralyn Allen is finally in the driver's seat! It's been a long road getting here. For the past four years, Allen has suffered from Crohn's disease.
"People aren't aware that Crohn's disease can affect children," Howard Baron, M.D., a pediatric gastroenterologist at Sunrise Children's Hospital in Las Vegas, Nev., told Ivanhoe. "The parents will assume it's the flu and it goes on and on and on."

Crohn's is an inflammatory bowel disease where the intestinal lining becomes inflamed, causing severe abdominal pain, diarrhea, vomiting, nausea and bleeding.

"I felt sick 24-7," Allen told Ivanhoe.

Allen's Crohn's was treated with steroids, which relieved some of the pain, but caused her to go from 70 pounds to 130 pounds in just a few months. Now, she's off the steroids. Allen is the first child in the world to take part in a study of a new drug marketed at Humira (adalimumab). It's already successfully used on adults.

"It is an antibody against a chemical that starts the inflammatory cascade in your body," Dr. Baron said.

It stops white blood cells from migrating to the lining of tissues, which causes the inflammation and the pain. But the drug comes with risks. It decreases the immune system and kids with Crohn's could be at a slightly higher risk for lymphoma. But for Allen, it's worked.
"Crohn's doesn't exist in me anymore," she says. "I feel completely normal."
Humira is still in studies. Children as young as five can enroll in the clinical trial. The youngest patient enrolled so far is 10-years-old.

Story of Billy Tytaneck one of the first Crohn's patients in the country to undergo Stem Cell Procedure

Less than a year ago, 25-year-old Billy Tytaneck felt as if he'd been backed into a corner.
The severe case of Crohn's disease he'd been battling for half his life was becoming impossible to live with. In April 2007, Mr. Tytaneck, at six-foot-one, was underweight by 20 to 60 pounds, weighing only 130 pounds.

Eating had become a chore to avoid, as he was wracked by poor digestion and constant stomach cramps compounded by terrible bouts of diarrhea that would send him to the bathroom more than 20 times a day, even interrupting his sleep.

"Even if I did eat, it would go right through me and I almost wanted to not eat, because when I did eat, that's when I got the stomach cramps and had to go to the bathroom."
These flare-up periods, which could last a month and struck twice a year, had not responded to medication. At times, Mr. Tytaneck was taking five different drugs at once.

He had run through all the medications designed to treat it, but could no longer keep the bowel disorder in check.

Racked by nearly continual cramps and diarrhea, the St. Catharines native was left facing the daunting prospect of radical surgery to remove much of his bowel.

But Tytaneck was determined to find another solution.
He learned of a stem-cell transplant procedure that had helped some Crohn's patients. The problem was the transplants were all performed in the United States.

Tytaneck, a student at the University of Ottawa at the time, turned his attention to The Ottawa Hospital and its blood and marrow transplant program. He pitched the idea of a stem-cell transplant to hematologist Dr. Harold Atkins, who had performed the procedure previously.
Billy Tytaneck has created a website to spread the word about autologous hematopoietic stem-cell transplants for patients with Crohn's on patients with other conditions, such as multiple sclerosis and lupus.

Atkins agreed to help Tytaneck last winter, making him one of the first Crohn's patients in the country to be treated with the stem-cell procedure.

"I'm much, much better -- easily 100-per-cent improved from what I was last year," Tytaneck said from his home in Collingwood.

"Emotionally, it was difficult to deal with because nobody had been through it before, so I didn't know what to expect."

The doctor who performed Tytaneck's transplant said the procedure carries high risks and should only be considered for patients with the most severe cases of the disease.

"It's not as simple as a blood transfusion," Atkins said in a phone interview from Ottawa.

"There's more to it than that and there are quite a bit of side effects to it."
Part of the procedure involves wiping out the patient's immune system --believed to be at the root of Crohn's disease --with high doses of chemotherapy and radiation therapy.

"That creates quite a few side-effects. The severity of the disease has to warrant using something that strong and that dangerous," Atkins said. Afterward, stem cells previously removed from the patient are infused back into the body to begin building a new immune system.

It takes about 12 months for the immune system to fully regenerate.
"After the first year or so ... the hope is these people won't need to be on other treatments," Atkins said. Five months after his transplant was completed, Tytaneck said his symptoms have diminished considerably.

He has also been able to whittle down the list of several daily medications he used to take to one.
"It's not perfect yet, but my symptoms are improving all the time," he said.
Atkins said more research is required to better understand the lasting impact of stem-cell transplants in the fight against Crohn's disease. Clinical studies are being carried out in the U. S. and Europe.

"The idea is that the Crohn's would essentially go away. The followup isn't long enough to say that would be for a year or two years or 10 years or forever," he said.

But for Tytaneck, the procedure has given him an enjoyment of life he hasn't experienced since he became ill about 12 years ago.

He recently began working as a mechanical engineer for a firm in Collingwood --a job that would have been difficult for him to do prior to the transplant.

"I can go out for a day and do anything without worrying about getting sick," he said.
"It's a huge difference. I enjoy everything so much more."

The procedure was carried out on an out patient basis over three months.
Tytaneck is hopeful raising awareness about the procedure will make transplants more common for other Crohn's patients.

"People don't even know it's an option. I want it to be an option for anyone who's facing surgery," he said.

Osiris Prochymal Stem Cell Transplant Update and XBP1 Info

So I have to think that I got more than a placebo. While on the high level I am more relaxed, happy and content than I though possible, I am also under a lot of day-to-day stress and pressure. As almost anyone with Crohn's Disease will tell you, there is a near concrete link between stress and Crohn's Disease flare ups. With my recent stress levels, I am pretty confident that pre-Osiris Prochymal I would be in a flare up. The good news is that I am not. The pain has subsided quite a bit and I am generally feeling really great as it relates to Crohn's. My improvements were enough to qualify me for phase II and as soon as I enter a flare-up, I am ready for 4 more treatments. I am more living with Crohn's now than I am suffering from it, and that is a big step in the right direction! Anyways, to you guys that are in Crones flare-ups or have been recently diagnosed....keep your heads up...and let me know if you have any questions. Be sure to use the search feature on this blog as we have covered alot of topics over the years.

-Scottie

PS - Intersing info here exploring the genetic link to Crohn's

A team of scientists have discovered that the XBP1 gene is a risk factor for developing Crohn’s disease and ulcerative colitis, forms of inflammatory bowel disease (IBD).

The investigators created a mouse model in which they deleted XBP1within the epithelium. They found that the mice spontaneously developed an intestinal inflammation that resembled IBD. The lack of the XBP1 gene disabled the normal communication between intestinal epithelial cells and gut bacteria, resulting in dysfunctional immune response and disease, the researchers explain.

The researchers then reportedly demonstrated that alterations in this gene in the intestinal-lining cells represent risk factors for development of Crohn's and colitis. The study was conducted by scientists from Brigham and Women's Hospital, Harvard Medical School, and institutes in Germany, The Netherlands, and Austria. Results appear in the September 5 issue of Cell.

Obby Khan - Candian Football League Star with Crohn's

Guys, came across this interesting story in the Montreal Gazette of Obby Khan, a CFL (Canadian Football League) Blue Bombers Player with Crohns. Looks like he is the northern version of the Jacksonville Jaguars David Garrard. Looks like this guy had exteme pain from Crohn's. Remember football season is coming up, so be sure to follow along the story of David Garrard.

WINNIPEG - Ibrahim (Obby) Khan, a grown man of 27 who has played professional football for five years, can't describe the sheer joy he experienced last winter, when he dug into his first cheese pizza. Or when he dove into a bowl of Doritos.

"It was simply awesome," the Winnipeg offensive-lineman said this week. "Now I eat them all the time - four or five days a week."

Ah, the staples of a healthy diet.

But Khan can be excused for his indulgences. There was a time last year when his diet consisted of boiled rice and salmon exclusively. He couldn't eat fried, fatty or spicy food, chocolate, sweets or anything with seasoning. He couldn't eat fruits or vegetables. He had to take 50 pills daily and had nearly as many trips to the bathroom. There was a time he received daily morphine injections, directly into his heart, to ease the stomach pain he felt 24/7. He saw his weight fluctuate nearly 100 pounds.


"It's tough to explain," he said. "Take the worst aches, cramps and gas. Magnify it by 10 and then amplify that 24/7."

Khan was diagnosed with Chron's disease five years ago. The autoimmune condition can affect any part of the gastrointestinal tract, from the mouth to anus. Its main symptoms are pain, diarrhea, constipation, vomiting and weight loss or gain.

Khan continued playing through it - he broke into the CFL with Ottawa in 2004 before joining the Blue Bombers two years later in a dispersal draft after the Renegades folded - for more than three years, taking medication that kept the disease in remission.

But things began to change last season, forcing the 6-foot-3 centre to miss 10 regular-season games, along with the Bombers' post-season run to the Grey Cup final. He took medicinal steroids, anti-inflammatory and anti-diarrhea pills. There was a pill to curb his nausea. He tried yoga, chiropractic treatments, even acupuncture. He underwent chemotherapy for six weeks after developing a virus he caught from taking all the medication. He was taking eight Percozets daily for back pain before advancing to morphine. This once healthy 300 pounder was now a shadow of himself, weighing about 205.

"I had serious cramping and bleeding,"he explained. "And the urges to go to the bathroom - there were two or three months I couldn't leave my apartment. There was a time I almost slept in the bathroom."


He has a 13- or 14-inch scar - it took 40 stitches to close the wound - he proudly displays, like a badge of honour, from the surgery he underwent to remove his large intestine, and another smaller incision from the removal of the colostomy bag. Khan said he endured three weeks of hell following the surgery.

"My whole body - I couldn't sit up. It was tough walking, coughing and breathing," he explained. "Even taking a deep breath hurt."

Jacksonville quarterback David Garrard had a foot removed from his large intestine. But Khan is the first pro athlete to have it entirely expunged and return to his career - ahead of schedule, we might add. He started practising in June and returned two weeks ago, against Calgary. It marked Khan's first game since the regular-season finale in 2007. He received a standing ovation from the crowd at Canad Inns Stadium when he was introduced, although he didn't start. He now weighs about 290 pounds.

"He's coming along, and his health's about 100 per cent," Winnipeg head coach Doug Berry said. "He's got to improve his game. We'll keep working him in, but he's not ready to play an entire game at centre. I just don't know if he'd last in this heat.

"He's a good athlete. He's tough and a motivational leader. We want him back."
Khan's diet must remain regulated, and there are still many things he can,t eat, including some fruits and vegetables. He hasn't enjoyed a salad in two years.

"I've learned I can get through anything," he said. "If you have heart, support, determination and desire, you can do anything. I've been through hell. Whatever else can happen, bring it on. I can take on anything."

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.

Osiris Prochymal First Phase Complete

Well, I am definitely feeling a bit different. I think better?? All of the stress i am going through would normally propel me like a rocket, straight into (or is it ass backwards into) a flare up. I believe the fact that my Crohn's is not flaring, despite the fact that I am not on ANY other medication (aside from the Osiris Prochymal) looks good. I am still having pain and all of that good stuff but it is just "different." I wish I could be more descriptive, but words fail me. I have never been too good at being in tune with my Crohn's...I kind of just deal. On the negative side, my body is a wreck from sports and the stem cells should theoretically be helping me out a bit with muscle soreness and issues. My knee is shredded and I need to have surgery, and my back is still giving me fits. Every day I play soccer (injuries have kept me out a full week as of tomorrow) I have another strain or pull. Maybe its just the old age. At any rate, I have a follow up docs appt next Thursday and we'll see where we go from here!

-Scottie

Osiris Prochymal Infusion Number 3

Infusion #3 is today. Hopefully the old veins cooperate, because the big thick IV is the worst part. I swear, they are trying to insert a drinking straw into my vein. That and the benadryl that gurantees me a nice little 45 minute power nap. I do actually think I am feeling a little bit better. Different at the very least. I think the side effect of muscle weakness is kicking in, as evidenced by personal worsts at the gym and lots of soreness after soccer. For the 3rd time in 3 trys I will be playing soccer within hours after the infusion. I still have pretty severe stomach pains, and haven't taken any meds for that in a long time. Just dealing with it.

I am trying very hard to minimize stress. Add a tough economy, divorce, no AC in the house and plenty of work related issues and it is a tough mix. I got some peace based on a legal decision last week that has helped reduce my stress level immesaurably. Thank god. Sorry these posts aren't very exciting but I know alot of you are anxious to know how these treatment works. I do recommend that if you have moderate to severe chron's, that you talk to your doctor about Osiris' Prochymal Clinical Research Study to see if it can help you out.

Prochymal Infusion Two Complete

Well, not much to say here. Two infusions as part of the Osiris Prochymal study are now complete. Each one took a couple of hours per appointment. Show up, get an IV, pump that with a steroid and some benadryl (gooodnight), and then get an hour long infusion of the actual stem cells (or placebo). I go back Thursday for another infusion. Lets see what this does to my Crohn's Disease Symtoms

-S

Stem Cell Transplant Starts Tomorrow - Osiris Prochymal

Tomorrow is my first infusion/transfusion Prochymal. I am really nervous. I am in the Phase III study. Prochymal is in clinical trials and not yet an approved and marketed therapy. To date, MSCs have been tested in multiple indications in over 400 patients and no major safety concerns have been encountered.

Many of the readers of this Crohn's Blog have asked me how they can participate.
For more info, please send an email, including the nearest major city, to IBD@Osiris.com. We will contact you about participating sites in your area.

Phase II Results:
Prochymal Crohn's Disease Phase II Clinical Trial DataThis Phase II trial has completed enrollment.The objective of this study was to establish the safety and efficacy of two doses of Prochymal one week apart in patients experiencing moderate-to-severe Crohn’s disease that is refractory to steroids and immune suppression.

Trial Overview
Ten patients were enrolled in the trial. Male and female patients were eligible and must have been between the ages of 18 and 70. Patients must have had moderate-to-severe Crohn’s disease that was refractory to steroids and immune suppression.

Trial Highlights
- Patients in the trial received two doses of Prochymal within 7 days. All patients had moderate to severe Crohn’s disease and were not responding to standard medications (steroids, immunosuppressants, and biologics).
- Every patient evaluated in the trial had a statistically significant reduction in disease severity by day 28, with relatively low doses of Prochymal and a short treatment course.
Improvement was rapid with a reduction in disease severity on day 7.
- There appeared to be a positive correlation between dose and response: Those patients receiving more Prochymal had a better outcome.
- The treatment was well tolerated with no severe adverse events attributed to Prochymal.

Osiris Stem Cell Therapy - I am in the Study!

So I got the good news/bad news that my CT Scan shows an active Crohn's Flare Up. I completed my CDAI workbook and I am in. The study is being held by Osiris. The study is for Prochymal. I am really excited and I believe my first transfusion is next Thursday! Hopefully I see some quick results.