Monday, December 31, 2007

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!

Wednesday, December 19, 2007

6 Tips for Managing Your Crohn's Disease Through the Holidays

1. Keep to Your Routines - Continue to take your medication on time and get regular rest. Crohn’s Disease Flare Ups are bound to happen when you don't follow the routine that works for you.

2. Beat the Holiday Blues - If you feel the holiday blues coming on, don't be afraid to talk to your healthcare provider. The sooner you get help, the better you will feel throughout the season. As I have said many times, I always have Crohn’s Disease flare ups during the holidays. So far so good this year!

3. Don't Party Too Hard - Decide which social functions you can realistically attend without stress overload. Running yourself ragged to make every holiday party can leave you too tired to enjoy any of them. Be sensible about holiday drinking. Some people with IBD find that alcohol can contribute to symptoms such as diarrhea or gas. I suck at this one!!

4. Less is more - Keep your entertaining simple, and save yourself energy and frustration. I suck at this one too…come to my holiday party!

5. Take a Break! - Take a time out for yourself if you need it. Some quiet time to de-stress is important.

6. Travel Well – Keep your diet…get your rest. Manage your Crohn’s Disease, don’t let it manage you.

Monday, December 17, 2007

The Brits Announce Bacteria in Cows Milk Likely Cause of Crohn's Disease

Scientists at the University of Liverpool, United Kingdom, have discovered a certain type of bacteria in cattle as a likely cause for Crohn's disease in human beings. The bacteria, called Mycobacterium paratuberculosis, are known to cause the debilitating Johne's disease in cattle. It is believed the bacteria are transferred from cows to humans via milk and dairy product consumption. The British scientists have been able to observe reactions caused by the bacteria in the human body that could tap it as a cause for Crohn's disease. This could open up new ways for finding more effective treatment options for Crohn's.
Crohn's disease is a chronic inflammation of the intestines. Patients suffering from Crohn's disease experience pain, bleeding, and diarrhea. If medical treatment options are not successful, relieve can often only be found through the removal of the effected part of the intestines. Similarly, Johne's disease in cattle causes severe diarrhea. As a result of the disease cattle usually slowly perishes. While the cause of Johne's disease has been known, until now there had been no known cause for Crohn's disease. It has been most recently theorized that Crohn's (not Chrones, chrons, or chron's) disease is genetically linked. The British Scientists now seem to be able to explain how the presence of Mycobacterium paratuberculosis in a patient's body can cause Crohn's disease.
It has long been known that patients suffering from Crohn's disease have a higher than usual level of E.coli bacteria in their body. Similarly, Mycobacterium paratuberculosis has been known to be present in Crohn's disease tissue. But until now, nobody has been able to explain the bacteria's presence and connection to the disease. Now the British scientists have been able to observe that the bacteria, Mycobacterium paratuberculosis, inhibit the body's immune system response to E.coli bacteria.
Mycobacterium paratuberculosis discharges a mannose-containing molecule. Mannose is a type of sugar. This molecule stops macrophages, a type of white blood cells, from destroying E.coli bacteria in the patient's body. The increased level of E.coli bacteria weakens the immune systems response to other intestinal bacteria, including Mycobacterium paratuberculosis.
The scientists also determined that the bacteria could cause an increase in a circulating antibody protein (ASCA). Two-thirds of Crohn's disease patients have this type of protein indicating a likely infection with Mycobacterium paratuberculosis.
Clinical trials are planned to seek out treatment options through an antibiotic combination, which is aimed at eliminating Mycobacterium paratuberculosis in a Crohn's disease patient's body. If the scientists' assumption is correct, the disease should subside with the elimination of the bacteria.

Thursday, December 13, 2007

Crohn's Disease and Stress - Exploring the Link Between Crohn's and Stress

Although stress doesn't cause Crohn's disease, it can make your signs and symptoms much worse and may trigger flare-ups. Stressful events can range from minor annoyances to a move, job loss or the death of a loved one. Every flare-up and even my initial diagnosis can be directly related to stress. Almost every Chron's Disease patient I talk to or hear about supports a simple fact. There is a link between Crohn's and Stress.

It is basic science (and common sense). When you're stressed, your normal digestive process changes. Your stomach empties more slowly and secretes more acids. Stress can also speed or slow the passage of intestinal contents. It may also cause changes in intestinal tissue itself. For someone with Crohn's this stress often leads to falre ups

Although it's not always possible to avoid stress, you can learn ways to help manage it. Some of these include:

Exercise. Even mild exercise can help reduce stress, relieve depression and normalize bowel function. Talk to your doctor about an exercise plan that's right for you.
Biofeedback. This stress-reduction technique helps you reduce muscle tension and slow your heart rate with the help of a feedback machine. You're then taught how to produce these changes yourself. The goal is to help you enter a relaxed state so that you can cope more easily with stress. Biofeedback is usually taught in hospitals and medical centers. For me....soccer, running and lifting weights all reduce my stress. They also give me incentive to eat better. Less stress and better diet = Healthier Living = Crohn's Flare Up Control. If you are having a flare up, I feel that these things can also bring you out of it.

Regular relaxation and breathing exercises
. An effective way to cope with stress from Crohn's disease is to regularly relax and exercise. You can take classes in yoga and meditation or practice at home using books or tapes.

You can also practice progressive relaxation exercises. These help relax the muscles in your body, one by one. Start by tightening the muscles in your feet, then concentrate on slowly letting all the tension go. Next, tighten and relax your calves. Continue until muscles in your body, including those in your eyes and scalp, are completely relaxed.

Deep breathing also can help you relax. Most adults breathe from their chests. But you become calmer when you breathe from your diaphragm — the muscle that separates your chest from your abdomen. When you inhale, allow your belly to expand with air; when you exhale, your abdomen naturally contracts. Deep breathing can also help relax your abdominal muscles, which may lead to more normal bowel activity.

Hypnosis. Hypnosis may reduce abdominal pain and bloating. A trained professional teaches you how to enter a relaxed state and then guides you as you imagine your intestinal muscles becoming smooth and calm.
Other techniques. Set aside at least 20 minutes a day for any activity you find relaxing — listening to music, reading, playing computer games or just soaking in a warm bath.

Bottom Line: Whatever you can do to reduce stress in your life will have a positive impact on your Crohn's.

Take care, be healthy and live a better life.

Friday, December 7, 2007

Crohn's Disease Tattoo- And Crohn's Disease Travel Tips

Hey guys, go my Humira shot Wednesday night. Nothing much new to report other than I have been waking up with pretty bad cramps. Doc Shafran usually says thats not a great sign. We'll see, makes me nervous as my Crohn's invaraible acts up during the holidays. Got my leg tattoo worked on yesterday. My wife is getting a Crohn's Disease ribbon tattoo (very small) on her foot to show her support for all of us Crohnies.

Also, below is a great article on travelling and Crohn's. I thought it was appropriate given the holiday travel many of us will be planning to do. Article is from Sara Jenkins, Sarah is an acclaimed writer on medical matters, and has written extensively on the subjects of Attention Deficit Disorder, Bird Flu and Cohn’s Disease.

Although Crohn’s Disease is a difficult disorder, you should not keep yourself from living the best life possible because you suffer from this disorder. You should continue in your life as you would without Crohn’s, although a few more precautions may be necessary. When traveling, this will ensure a smooth and enjoyable trip. The first thing you should do, whether you are traveling abroad or close to home, is locate a doctor in the area you will be visiting. There are several organizations available to utilize in your search or you can simply ask your doctor for referrals.

If you are taking prescription medication, you should be sure to take plenty for the duration of your trip. You should also keep it with you when you travel on the plane to avoid it being lost in the heaps of luggage. Always keep your medication in its original container and a typed statement from your doctor regarding what medications you are taking and what they are for.

You will also need to get copies of all of your prescriptions, including foreign names, in case you have to refill them abroad. However, you should avoid this by carrying enough medication with you, as filling prescriptions in other counties can sometimes be difficult. A common ailment among travelers to less developed countries is known as "traveler’s diarrhea". This can be especially dangerous for sufferers of Chron's Disease and special care should be taken to avoid it from occurring. Basically, traveler’s diarrhea occurs from the ingestion of water or food that is not as stringently processed as in the United States. Steps that should be taken include being very careful about what you eat or drink; do not drink water unless you boil it; avoid drinks made from tap water, like tea or juices that may have been mixed from concentrate; use bottled water to drink and to brush your teeth with; avoid ice, ice cream, and uncooked fruits, vegetables, and meat; avoid diary products as they may not be pasteurized; and do not eat any questionable food.

If you become affected with traveler’s diarrhea, take an over the counter medication and be sure to intake plenty of fluids to avoid dehydration. Also watch for signs of a medical emergency, such as high fever or chills, which may be a sign of infection; profuse rectal bleeding; extreme abdominal pain; dizziness; or dehydration. If any of these occur, seek medical attention immediately.

-Scott

Monday, December 3, 2007

Embarassing Crohn's and Work Story - Unbelievable

So this morning I get to work about an hour early as normal. I fold up the sports section of the Orlando Sentinel and put it my back pocket. I then begin my casual stroll to the bathroom. "Nothing to see here folks, not going poop..just minding my own business..."

So I read about all of the NFL news, wash my hands, check my face out in the mirror for any leftover toothpaste or zit cream, and walk back into the office. I stroll through the hall of our accouting department and give a half-hearted, monday morning hello to the ladies. I see our COO walking down the hall and she is looking at me funny.

From about 20 ft away, I see this look...then she asks me what is that....At this point I notice that I have toilet paper (from lining the seat) stuck in my pants. And n0t 5 sheets. I double it up on the seat, so I had a good 15-20 sheets trailing down my pant leg like a tail. It was so long that about 2 sheets are touching the floor!!!

She starts cracking up and says, "OH, this is going to be a good one Scott." As I snatched it out of my pants, I calmly replied that I was throwing myself a ticker-tape parade to start the beginning of the week!

Wow, what a Monday. I love Crohn's disease and poop stories. Unfortunately this one is VERY true!

Sunday, December 2, 2007

Scott Roy in the Orlando Sentinel - Crohn's Article with Dr. Shafran

Link to the article is here - http://www.orlandosentinel.com/community/news/deltona/orl-crohns0207dec02,0,4333743.story

Dr. Shafran (Winter Park, FL) was featured in the Orlando Sentinel today for an article highlighting his Crohn's Disease Research. He just published a paper on a new antibiotic used to treat Crohn's, and the relation to bacteria and Crohn's Disease. Yours truly, Mr Scott Roy, is featured in the lead photo. I love the way Dr. Shafran and his staff take care of me!! He is an awesome doctor. I encourage you all to check out the article, and if you are in Florida, you will not find a better Gastroenterologist.

Here is the article:


Dr. Ira Shafran sees Crohn's disease patient Scott Roy at his Winter Park office. Shafran is a gastroenterologist who is treating some Crohn's disease patients with antibiotics. (ROBERTO GONZALEZ, ORLANDO SENTINEL / November 21, 2007)

Doctors are trying a new strategy to treat Crohn's disease, an often-debilitating digestive condition that typically strikes in the teens or 20s and causes lifelong problems.

About 700,000 Americans suffer from the incurable illness, which can lead to inflammation, scarring and intestinal blockages that require surgery. Patients often take powerful steroids and immune-suppressing drugs to control symptoms.

But some doctors are experimenting with antibiotics as the main therapy. Their goal is to attack a bacterial infection that they think could be causing the disease.

Arianne Percy believes in the strategy.

The 26-year-old Deltona woman has been taking an antibiotic for six months. After dealing with abdominal pain since the age of 12, Percy said she is now symptom-free 90 percent of the time.

"I feel better than I have in years," Percy said. "I just hope it keeps working."

Her physician, Dr. Ira Shafran of Winter Park, has been studying potential bacterial causes of Crohn's for years. He thinks one culprit is a cousin to tuberculosis -- Mycobacterium avium paratuberculosis or MAP.

Shafran said an early, aggressive course of antibiotics could help many patients get better control of their symptoms. He has been testing antibiotic treatments in his own patients since the late 1990s, with varying success.

"While specific bacteria have never been identified as the only cause for Crohn's, we have enough scientific evidence . . . that bacteria are pivotal in the origin and persistence of this disease," Shafran said.


Inflames bowels

Crohn's disease -- named in 1932 after Dr. Burrill B. Crohn -- is a form of inflammatory bowel disease or IBD. Historically, doctors had thought of the illness as an autoimmune disorder.

Such conditions occur when the immune system attacks its own tissues -- in this case, the digestive tract. But many doctors now think Crohn's is not the body's attack on itself but a mistaken assault on bacteria that naturally live in the intestines. Numbering in the billions, these bacteria aid in food digestion and typically pose no harm.

For Crohn's patients, doctors speculate that the visitors provoke a chronic immune response that wreaks havoc on the body.

Sufferers can face abdominal cramping, diarrhea and the urgent need to use the bathroom. The condition can flare up periodically throughout a sufferer's lifetime.

"It's a disease of young people, [striking] at a time when they want to go to school, get married and start their careers," said Dr. Daniel Present, a Crohn's expert at the Mount Sinai School of Medicine in New York. "It can be very serious."

Some patients need to take potent immune-suppressant medication. Many also take antibiotics, though usually for short periods and in combination with other medicines.

Dr. Jonathan Braun from the University of California at Los Angeles said it's too early to know whether the drugs could play a bigger role in controlling the illness. Though many suspect Crohn's is linked to bacteria, he said there is no consensus on which specific types are to blame, which antibiotics are effective and how long a patient should take them.

"There's a lot of research that's left to be done on bacteria in the gut, and I think that as we understand those better, there will be new treatments," said Braun, chairman of the National Scientific Advisory Committee for the Crohn's & Colitis Foundation of America. "But for now, it's important to realize that while antibiotics may help some patients, none have shown to work on the majority of patients."


More research needed

In his Winter Park practice, Shafran estimates that about 100 of his patients are on long-term antibiotic therapy for Crohn's. They may remain on the drugs for years, with Shafran monitoring their progress and reducing the dosage as their symptoms subside.

He acknowledges the approach doesn't always work.

Another of his patients, Kira Banks, 25, of College Park has been through a course of antibiotics without success. She now takes an immune-suppressing drug that she credits with bringing her relief.

"This can be a very devastating disease," Banks said.

Shafran and his like-minded colleagues say more research is needed into the possible bacterial origins of Crohn's. For now, many have focused on Mycobacterium because the organism is known to cause a digestive disorder in cattle called Johne's disease.

But Shafran said MAP is not the sole answer to Crohn's, which is influenced by genetics and many as-yet unknown environmental triggers. He worries that drug companies, which typically don't make as much money on antibiotics, will not be interested in investigating their wider use in Crohn's sufferers.

And doctors are entrenched in their habits, turning to immune suppressants and other, more-potent drugs to attack the illness.

"A lot of people think, 'Why should I use a small-caliber weapon when I've got all these .44 Magnums lying around?' " Shafran said.

Dr. William Chamberlin from Texas also treats many of his Crohn's patients with antibiotics, often using generic versions that he says offer a low-cost treatment with fewer side effects.

"I cannot say it's a cure for patients, though some do remarkably well," said Chamberlin, an associate professor at Texas Tech University. "Others don't really do well at all."

Robyn Shelton can be reached at rshelton@orlandosentinel.com or 407-420-5487.

Record Day for this Crohn's Disease Blog - Due to David Garrard Crohn's Mention on NBC

Watching the Jaguars Colts NFL game today and they mentioned David Garrard's Battle with Crohn's Disease and also some stuff on his wife Mary. As a result I have had over 250 visitors so far today (average about 125 a day) from people doing Google searches for terms such as David Garrard Crohn's. Garrard Crohn's, David Garrard wife Mary, David Garrard Crohn's Treatment, Jaguar crohn's, mary garrard and many more.

For those of you looking, my David Garrard 2 of my Garard related posts are here, and here.

Friday, November 30, 2007

Typical Crohn's Pain and Night Sweats


Typical past few days and nights. Severe pain in the area of my Crohn's (terminal illieum) and big-time night sweats. It is likely a combination of the Crohn's and a crowded bed..whatever it is, it has me sweating. We got a new boxer puppy...He is 10 weeks old, and sleeps between my wife and me. Our 9 year old springer sleeps across our feet. It's a crowd, and last night I slept in the ever-desirable "fish hook" position. Fun times! Anyhow, my Crohn's always acts up during the holidays. I have been running again so maybe that will keep the Chron's Disease at bay. We will see. Good luck to all of you Crohn's disease sweaters out there.

Monday, November 26, 2007

Off Topic - My MySpace Page

Hey guys...I try to keep this blog Crohn's related...but if for some reason you want to know more about me as a person outside of our disease...check out my Myspace Page, here. Feel free to drop me a line there or friend request me!

Mike McCready of Pearl Jam - Crohn's and Remicade or Humira?

As many of you may know, guitarist Mike Mcready of Pearl Jam is a long time Crohn's Patient. You may not know that he is currently treating his Crohn's with Humira. Does anyone know what David Garrard (quarterback for the NFL's Jacksonville's Jaguars) is treating his Crohn's with?

Regarding Mike McCready of Pearl Jam (From Billboard):
However, the guitarist has now been in Crohn's remission since the spring of 2005, thanks to a largely carbohydrate-less diet and a new medicine, Humira, which is also used to treat arthritis. That combo allowed McCready to endure the extensive tour Pearl Jam set out on in support of its 2006 self-titled album for J Records."I've been out for shorter period of times that were 20 times as miserable, because I just couldn't manage it," he admits. "This was, in effect, a walk in the park. I just put the medication in the freezer or the refrigerator at the gig. It was a long tour, so I was lucky to be able to have this thing work."

Smoking and Crohns Disease

Hey Guys - I found some interesting new info on Smoking and Crohn's Disease. Alot of people ask me about the realtionship between smoking and Crohn's, so here you go ( from April 2007):

A new study in The American Journal of Gastroenterology suggests that smoking may determine which part of the intestinal tract is attacked in those who suffer from Crohn’s disease. Where the disease is located often determines whether the patient will eventually require surgical treatment.

“In patients who smoke, Crohn’s disease tends to appear more frequently in the small intestine, rather than the colon,” says study author Dr. Marian Aldhous. “Our data shows that when Crohn’s disease is located here, it tends to cause more penetrating or obstructive damage, which would have to be treated by surgery.”

The results of this study raise interesting questions about why smoking would affect different parts of the intestine in different ways.

“Fundamental differences in small and large bowel physiology may explain the differences in location of Crohn’s disease in smokers,” says Aldhous. “The effects of smoking should be further investigated, to understand why smoking has a differential effect on different parts of the bowel.”

Personally my worries skew more towards the link between alcohol and Crohn's!

Smoking and Crohns Disease

Hey Guys - I found some interesting new info on Smoking and Crohn's Disease. Alot of people ask me about the realtionship between smoking and Crohn's, so here you go ( from April 2007):

A new study in The American Journal of Gastroenterology suggests that smoking may determine which part of the intestinal tract is attacked in those who suffer from Crohn’s disease. Where the disease is located often determines whether the patient will eventually require surgical treatment.

“In patients who smoke, Crohn’s disease tends to appear more frequently in the small intestine, rather than the colon,” says study author Dr. Marian Aldhous. “Our data shows that when Crohn’s disease is located here, it tends to cause more penetrating or obstructive damage, which would have to be treated by surgery.”

The results of this study raise interesting questions about why smoking would affect different parts of the intestine in different ways.

“Fundamental differences in small and large bowel physiology may explain the differences in location of Crohn’s disease in smokers,” says Aldhous. “The effects of smoking should be further investigated, to understand why smoking has a differential effect on different parts of the bowel.”

Personally my worries skew more towards the link between alcohol and Crohn's!

Friday, November 23, 2007

Happy Thangsgiving to All you Chronies!

Tuesday was rough for me. B12 shot, blood drawn, Humira. Probably nothing compared to what some of you are going throuigh and what I have been through in the past.

Happy Thanksgiving to you all. Hope the Turkey treated you guys well and you could all eat at least some mashed potatoes. I felt well, ate twice and had a few beers with the family. Just a quick post. more later.
-Scott

Tuesday, November 20, 2007

Saw Dr. Shafran Today

I am staying the course and sticking with Humira, but we may up it to once a week instead of bi-weekly. I had blood drawn and got a B12 shot. While I am doing better than I was at this time last year, I am not out of the woods yet. It was so nice to see Dr. Shafran, Anita and the rest of the staff. He is such an awesome doctor. While I was there the Orlando Sentinel was there doing a story on Dr. Shafran and the photographer snapped pictures throughout my visit. Stay tuned for a link to the story on a new treatment Dr. Ira Shafran is presenting at a medical conference in Miami next week. I am excited for him. I got in a nice 3.4 mile run after my Doctor's appointment.

I read an obituary in the Orlando Sentinel for a man named Michael Cleary that died after a battle with Crohn's Disease. It definitely puts things in perspective and makes me want to get a handle on the stress and my Chrons. Anyways, Happy Thangsgiving to you all.

Don't sweat the small stuff.
- Scott Roy

Monday, November 19, 2007

Scott Roy is Going to See Dr. Shafran

Going to the good doctor Shafran in Winter Park on Wednesday afternoon. Maybe he can give me a miracle cure so I can chow down on Thanksgiving. This is the time of year that I had a big Crohn's Flare up that landed me in the hospital in 2006. Hopefully the Humira keeps me away from there but stress at the new job is begging to differ. I am doing OK...standard Crohn's cramps. I haven't been to Dr. Shafran and am curious to see what is new with my treatment as well as catch up with his wonderful staff!

Monday, November 12, 2007

Is Humira Really working for me? Worst Night Sweats Ever

After lining my side of the bed with towels and having pretty much the worst night sweats I have ever had...my wife challenged me this AM with a statement that went something like this "I know the Dr. is holding out alot of faith on this Humira working but I don't know if it really is." I paused to reflect and have to wonder myself. The pain has been getting worse and the night sweats are back. I am fresh off a shot Friday night too...so usually I am doing OK at this point.

About this time last year (before I started this Crohn's Blog), I had to go on a liquid diet and ended up not being able to eat at Thanksgiving or Christmas). I lost about 12 pounds...that might be the only good part.....and spent about 5 days in the hospital.

Anyways, crazy week at work. Just took on responsibility for all of our marketing (was just doing online portion) and am working on 2008 business plans and budgeting. Fun times!!

Enough bitching, lets all have a positive week. -Scott

Saturday, November 10, 2007

Humira Shot for Crohn's Disease at 12:45 AM - Party Hard

Well i didn't get my Humira shot this week so after about 6 beers I got home just in time for Amy to poke a needle in my arm full of Humira. I felt like I was super relaxed but it really hurt for some reason. Oh well....2 more weeks until I get more Humira. We'll see how it goes. Keep your heads up gang...Things are going a bit better for me, but work stress and stress at home are still getting me good. Lets hope I avoid a flare-up

Thursday, November 8, 2007

Tips for Dealing with a Crohn's Disease Flare Up - Crohn's Disease Blog

Below are some good tips for dealing with Crohn's Disease Flare ups...mine is last. Please feel free to add your own tips or talk about how YOU deal with a Crohn's disease flare-up.

From Aaron: The greatest advice I have for those with Crohn's or Colitis is to keep your chin up and stay positive. Believe it or not, attitude can play a major role in coping with IBD. Although I was formally diagnosed with Crone's disease this morning (after a colonoscopy), I have experienced many symptoms for nearly two years. While fighting through the physical pain has been extremely difficult at times, I constantly remind myself that I won't let the disease hold me back. Like many other sufferers, I am only 18 years old. And I have no intention of simply giving in and sulking in self-pity. So next time IBD gets you down, try to keep a positive frame of mind. Remember that you have your whole life ahead, and you won't let IBD stop you from making the most of it!!! Any questions, reactions, etc?

From Kimberly: This may sound strange, but it works! Read a book on pain management during labor and child birth. The breathing techniques and focusing method discussed are a great method! When the flare up starts I start doing the breathing and distraction just like I was having a contraction.

Heat1 says: I try to visualize myself in my favorite place. A little island in Florida. I imagine myself there and have fun. It helps but try to be in a quiet area or it can be more stressful and that is NOT what you need!! Hope this helps you!!

Beau says: I find that cuddling with my dog is one of the great ways to be happy, but if my dog is not available or if I just don't want to for some reason I follow my other passion, studying War history. I know it might sound lame but I can get so lost in it that I never realize what's going on. So my best advice would be to find a passion, and pursue it when your sick.

Elease says: When my aunt, who has had Chron's for about 30 years has a bad day, she reads or draws to stay quiet and take her mind off it...or she will call a friend from church or a family member and have a chat about non-Crohn's stuff to help her relax.

Amy says: Whenever I get a flare up the first thing I do is lay down and relax for a while...sometimes the stress is just to much for me. If that doesn't workthen I cut out the foods that might be a problem, and stick to liquids and bland foods. I haven't had any real bad flare ups since i really first got it and that was 2 years ago though. But I find just relaxing and taking my mind off of it usually does the trick.

Tyler says: When I have a flare-up I like to play my guitar, I find it takes my mind off of the pain.

Susan says: I recommend writing in a diary. It feels good to get the thoughts down on paper and get them out of your body.

Randy says: One way I get over the flare ups of Crohn's is hunching over my knees. This really lessens the pains. I know its happened to me many times.

Scott says (me) - I generally go on a liquid diet to ease the workload on my bowels. I think getting plenty of rest is key (but I don't). I lay on the floor on my back...seems to help..maybe it just gets the pressure and tension off of my gut. I also have a prescription to percocet which not only helps with the pain (it's the only thing that truly works for me) but tends to constipate normal people....and slows down diahreah (I still don't know how to spell that word) for me.

Tuesday, November 6, 2007

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).

Tuesday, October 30, 2007

Stress has a Tremendous Impact on Crohn's

Stressin out over work, home life and money. I am a mess right now. Subsequently my Crohn's Disease is starting to Flare. It was a real bad day. Hopefully things turn around for me. Sorry for the short and lame post. The latest Humira shot hurt a bit. I am generallya VERY happy person...but latley I find my seslf slipping into what can only be described as depression.

Friday, October 26, 2007

Severe Night Sweats and Waiting for Humira


My Humira shots ran out and there was some confusion reordering. Thankfully my wife Amy and Anita at Dr. Shafran's office have taken care of it for me and my Humira is set to arrive at the house this morning. Since it comes in a cooler (and I live in Florida), my neighbor is coming to grab it off of my front porch this morning. I can barely believe I am saying this, but I can't wait to get home and get that big juicy shot of Humira. I am three days late and sweating so much at night it is unbelievable. Last night night sweats woke me up three times. I ran out of space on my California King sized bed, and ended up going through towels, sweatshirts, etc. I was freezing! Anyways I usually sweat pretty bad again the night I get the shot but it improves after that. I go see Dr. Shafran Monday for a checkup. I am looking forward to it and consider myself lucky to have such a good and caring doctor. Anyone needs a good Crohn's doctor in Central Florida....check out Dr. Ira Shafran in Winter Park, Florida!

David Garrard Story I found Detailing His Crohn's, Surgery and Remicade


(From December 2005)

A vertical scar begins just below David Garrard's navel. He can see it when he lifts up his shirt, when he gets in and out of his Jaguars uniform, when he prepares for bed.

"It's not that bad," Garrard, Jacksonville's new starting quarterback, said Tuesday at Alltel Stadium. "I've seen people with scars all over their stomach. Mine is just about three inches."
Garrard's blemish is a reminder of the Crohn's disease he has fought for two years and of how he is approaching the biggest start of his pro career on Sunday, when the Jaguars (9-3) are host to the undefeated Indianapolis Colts (12-0).

"Even keel," said Garrard, 27, who will make his second consecutive start since Byron Leftwich broke his left ankle Nov. 27. "We're out here playing a game that can be taken away at any time. With me, that almost happened."

If the Colts' Peyton Manning is the best-known quarterback in the N.F.L., Garrard may be its least known, although he faced Manning in his only start as a rookie in 2002. (The Jaguars lost, 20-13.)

Garrard, who was born in East Orange, N.J., and grew up in Durham, N.C., is remembered primarily for being the East Carolina quarterback in a 64-61 double-overtime loss to Leftwich's Marshall team in the GMAC Bowl in 2001.

More than Garrard's ability to escape pressure and make plays with his feet, having Crohn's disease, a chronic inflammation of the intestines, has earned him respect, affection and trust in the Jaguars' locker room.

In January 2004, Garrard began to have severe stomachaches after meals. The pain would subside and reappear, including once when he and his wife, Mary, visited Jaguars tight end Kyle Brady and his wife, Kristi, in St. Augustine, Fla.

"In the off-season one weekend, we went out and had a real nice meal, went back to the place, and he was throwing up all night," Brady said of Garrard on Wednesday. "We were there for some moments that were kind of down and dirty. We saw all of that happening."
Garrard described it as "the most excruciating pain that I have ever felt."
"It knocks you on your knees,"
he said.

Garrard's 6-foot-1, 244-pound frame began shedding weight at the onset of Crohn's, one of several inflammatory bowel diseases that affect 1.4 million Americans, according to the Crohn's and Colitis Foundation of America.
"I had never heard of it until he got it," Leftwich said. "We'd ask him every day: 'What is it? How do you get it?' "

[In a telephone interview on Friday, Dr. James F. Marion, an assistant clinical professor of medicine at the Mount Sinai School of Medicine in Manhattan, said: "We don't understand the essential nature of the disease, which is quite frustrating for the patients and makes it difficult for doctors as well. The symptoms can be subtle or extreme."

He said the inflammation caused by Crohn's could lead to swelling and ulceration of the intestines as the body tries to heal itself. Obstruction and a narrowing of the intestines can occur, as it did with Garrard.]

"Once it starts to scar up, food has a hard time passing through," Garrard said. "It's like a four-lane highway coming into a two-lane highway and bottlenecking. And that's where you get your pain."

"I just thought I had a stomach virus," he added. "It was three months before I asked anyone to check me out."(SAME HERE SAYS SCOTT)

Garrard bottomed out at 215 pounds, his weight as a high school freshman. When a colonoscopy and other tests determined that he had Crohn's, doctors placed him on various drugs, but the sharp pains returned.

He didn't participate in several spring minicamp practices last year, but he sometimes showed up. His teammates saw a gaunt man whose head suddenly looked too big for his body.
"What he went through went beyond football," said Leftwich, leaning on crutches in the locker room. "It was something that dealt with life."

Garrard knows about life, death and divorce. His parents split up when he was 7, and his mother, Shirley Ann, died of breast cancer when he was 14. Garrard then lived with an older brother but was close to his father, Wilmer, until his death two years ago.

Then in May 2004, doctors at the Baptist Medical Center in Jacksonville removed 12 inches of Garrard's intestines, entering just below his navel. The doctors prescribed yet another new drug, Remicade, to try to keep the disease in remission. Garrard began to put on weight.
"I was supposed to take six to eight weeks off, but I was back out in four or five," Garrard said.
He was able to make two starts during the 2004 season - the Jaguars split the games - and doctors monitored him as he prepared for this season.

Every eight weeks, he takes Remicade through an intravenous drip that takes three hours. In August, doctors performed another colonoscopy.
"I didn't have anything in there, any symptoms or any discoloration," Garrard said. "I was totally clean."

[Marion, the Mount Sinai professor, said: "There are other pro sports players who have Crohn's disease that do not necessarily come forward. People don't like to talk about their bowels or bleeding from the rectum. It's taboo to bring this up. But if somebody is able to get the disease under good control and get transitioned into a maintenance regimen, which it appears that David has, there is every reason to expect that they will be entirely themselves."]
It's too early to classify his style as a quarterback, but Garrard has been compared to Steve McNair and Daunte Culpepper, players who can run and throw.

Garrard preserved a victory over the Arizona Cardinals on Nov. 27 and won as a starter last Sunday against the Cleveland Browns. Coach Jack Del Rio said Garrard had stepped in with poise and "has an opportunity to play big time for us right now."
But the Jaguars know him best as the teammate who shared their locker room, disappeared, and shared their locker room again.

"I know how good he is," said Leftwich, standing near Garrard's locker.
Defensive end Paul Spicer looked in Garrard's direction.
"We see that man every day," he said. "We know what he can do. When he gets out there, watch what happens."


-Just thought it was interesting story of an athlete with Crohn's Disease - Scott


Tuesday, October 23, 2007

Humira Pen Versus Shot


As most of you know I take Humira for Crohn's Disease. This blog has had allot of discussion and comments on the Humira Shot versus the Humira Pen. My wife talked to Dr. Shafran's wife today (the office manager and a nurse) because I am out of Humira and due for a shot tomorrow. Anyways she asked about the Humira pen and they told her to stick with the shot because they have had quite a few problems with the pen "misfiring" and the humira not actually making into the patients. Since Amy has been giving me the injections at a faster pace they haven't hurt as much so I am going to stick with the shots. I am still curious about the Humira pen though. Anyways thought I would update you all. Going to Dr. Shafran (Winter Park, Florida) for a checkup and B12 shot monday. Also, the night sweats are coming back pretty strong. It has been a while since I have had bad night sweats, but the past few nights I have been soaking the sheets. Not sure what the deal is there. I think there is a connection with them and needing a Humira shot.

Sunday, October 21, 2007

Red Sox, Stress and Crohn's Disease

Between work stress and watching the Red Sox in a Game 7 ALCS I am hoping to avoid a flare up. I made a successful comeback on the soccer field today. The neck is feeling much better. For those of you in active flare ups...keep your heads up and have a great weekend. I really, really appreciate the positive comments and feedback. Have a great week.

Friday, October 19, 2007

Lupus and Crohn's Disease

Lupus and Crohn's Don't Need to Ruin Your Life
By Candida Bohnne-Eittreim

It's been a long journey of discovery in how to live with both lupus and Crohn's Disease. Both of these are autoimmune disorders that wreak havoc with the body's connective tissues, and in some cases cause death. Because these are incurable and little understood disorders, it has taken major proactiveness on my part in learning how best to cope with the almost constant pain and fatigue they carry with them.

I was first diagnosed with Crohn's Disease in the early '70's. I had been losing weight steadily, and was wracked with severe abdominal pains. My doctor had told me most likely I was suffering from "housewives" syndrome, which he blithely claimed was common among high strung women such as myself. That changed dramatically, when one night bent double with pain, I found I was hemorrhaging badly from my rectum. Admitted to the hospital from the emergency room, I was told I had cancer of the colon, and scheduled for surgery. When I awoke, I was told I had Crohn's Disease, and that it would require lifelong treatment. They had to remove a large piece of colon that was completely blocked by the thickening so common in Crohn's.

The next few years were a nightmare of tests, surgeries and medications more toxic in some cases, than the disease itself. I had started researching everything I could find about this disease, and was horrified to learn that there wasn't much that could be done. There was this enormous well of rage and a good dose of self pity in me during those early years. Rage that the supposedly best medical system in the world couldn't do better, or even answer how or why a person got an autoimmune disorder.

Crohn's Disease involves the digestive tract, from the esophagus to the small bowel. It causes pain, fever, and diarrhea. It can also affect the joints and the eyes, leading to blindness. When it attacks the colon and bowel, it thickens the walls with inflamed tissue, which if left unchecked, can lead to intestinal blockages, which are life threatening. The mechanism for it is the same for all of the autoimmune disorders-the body turns on itself.

In a normal system, if a person experiences a wound or an illness, the T cells and white cells react as antigens which attack the diseased or damaged area, then shut themselves off. In autoimmune disorders, there is a failure to turn off this immune response, resulting in damage that continues, unless through medications it is modified. Most of the drugs used are geared toward damping the response down to healthier levels. Imuran, cyclosporin, Plaquenil, azothioprine and prednisone are often used. All of them have unpleasant side effects, much like those experienced in chemotherapy.

After multiple surgeries, and a rash of severe reactions, I made a decision not to use toxins to treat this disease. Most importantly, I refused to let myself be defined by it. I am much more than the sum of this disease, and refused to give in to it.

About the time I had finally adjusted to living with Crohn's, I began feeling very ill in an odd way. My throat hurt so bad I couldn't eat nor could I swallow anything but ice water. I developed a pain in my right ribs so severe I couldn't walk for a week. The fatigue hit me so badly, I called it "crash and burn". Once it started, I had to lie down, where I'd fall into such a deep sleep, I heard nothing. After 3 weeks of this, I went to my internist, who ran tests, including an ANA (anti-nuclear antigen). When he called me in the following week, he was in tears, and told me I had SLE (systemic lupus erythematosis). I sat there numb, hardly believing I had not one, but two of these strange disorders.

Still struggling, along with my husband to come to terms with this latest happy bit of news, I immediately began researching everything known about SLE. I discovered it's not uncommon for patients with certain autoimmune disorders to have more than one. And in that case it is considered a mixed blessing. The thinking being having mixed connective tissue disorder is often less lethal than having just one. HA! The only blessing I saw was for the pharmaceutical companies that love to do clinical trials on us.

After long talks with my family and others who cope with these disorders, I made a momentous decision. No more cytotoxins or other drugs, save for those that eased the symptoms of daily living. No more fighting with the disease, but a day to day journey of learning to live with it, without impacting everyone around me. This was no easy decision, for SLE attacks the heart, the kidneys, the skin and sometimes the brain. But for me and my family it has turned out to be the right decision.

I started using alternative medicine, including herbal supplements that cause much less side effects, and in most cases have brought me greater relief. I use Co Q- 10 for cardiac support, along with carnitine. Hawthorn for the intermittent claudication of fingers and toes, and an excellent multivitamin daily.

Along with a diet rich in anti-oxidents and exercising to keep joints supple, I bring an attitude of refusing to behave as if I am severely ill with anything.

When I have bad days, instead of fighting it, I relax and try and find things to make life easier. Writing is one of them. Some of my best work has come out of my worst days of pain. Good days are a celebration. They are a little gift of freedom from my old friend-pain. I've learned to live for today, knowing tomorrow isn't promised. To bring the gift of laughter and love to those around me every day-good or bad. Each day I awaken thanking God for the blessing of another day, and every night I thank Him for the gift of these diseases. For through them, my children and others have come to realize that we are only limited by ourselves. Most of all that we have choices when it comes to dealing with the difficult things in life. We can give in to them and die, or we can soldier on and live a life filled with small miracles.

Sunday, October 14, 2007

Staying Positive when you have Crohn's Disease

Hey guys...nothing too much to report here. My stomach is feeling pretty good. Had a Humira shot on Thursday and seem to be doing OK. Pain and cramping have been pretty minimal. Anyways, for those of you that are in active Crohn's flare ups or worse...keep your head up. It will get better. When it hurts it hurts, but keep a positive outlook and you will make things easier on yourself...you can even trick your body into starting to heal. We all know stress is a big factor in leading to Crohn's flare ups. So step back, breathe, and focus on getting better and the positives. Hope you all had a great weekend.

Thursday, October 11, 2007

Humira Shot Tonight

Woot, Woot, time for a Humira Shot. Lots of stress in my life (stress effects my Crohn's Disease in a big way) and I need this shot. A few idiots at my old company are stressin me out...check out my personal (non-crohn's blog) for that. Anyhow, hopefully this Humira shot does the trick. Say your prayers (also for Brandi in Seattle). Big weekend...Red Sox, several church events, maybe the beach..who knows. But if you are struggling guys...have faith.....you can live a normal life with Crohn's Disease. I do it most of the time. I know what it feels like when you aren't. So if you are having issues with Crohn's, having a Crohn's flare up...or know someone that is...let me know. Whether I can help with research, prayers, advice, or just give you a laugh....I am here...you know where to find me. -Scott

Monday, October 8, 2007

Grown Men Don't Poop their Pants (and blog about it)

Ok, so I hinted about a month ago about telling the story of how I pooped my pants. A few people have requested it. So here it is. This is the story of how I shit my pants on a date and successfully cut my underwear off while walking down Broadway in New York City. Away we go.

Let me transport you too a chilly winter night in the early winter. Must have been about 1998. I am living in Connecticut and decide to take a girl I was dating into the city for a night on the town. We enjoy a nice dinner at Gramercy Tavern (strange how many details I remember from this night). We are walking to a play (Rent..UGH) and I innocently try to slip a fart past a turd. Well, I failed miserably and propelled a liquidy stream down my right leg.

Thank the good lord for my 3/4 length suede jacket, which mostly hides the damage. While it isn't too obvious to others, I still have issues to deal with. Great, now what? As panic start to step in, I coolly collect myself and begin to formulate a plan. I will use my Swiss Army Knife to cut my underwear off! BRILLIANT! But wait, the keys jingling are going to give me away. So before I set about this operation, I remove the knife from the key chain. I open it up, slide my hand down the side of Gap Khakis.

Over the course of several blocks and 15 minutes, all while maintaining a conversation on how great the meal was, how awesome Savage Garden and BackStreet Boys are (hey its 1998) I proceed to cut my FAVORITE BOXERS off. And no..despite discussing Backstreet and going to see Rent...I am not gay. So anyhow, I am making progress. It takes another block while I shake, wiggle and shimmy until I smoothly expel the soiled underpants out my pants let and onto the sidewalk in front of a Chinese takeout restaurant!
I look back longingly at my trusty (and dirty) friends, and briefly wonder if I should fess up just so I can rescue them from the feet that will surely trample them (Honey, did you step in dog poo?). Begrudgingly I forge ahead, all the while wondering if I will ever be able to replace them. Never once did my date figure it out. Believe it or not, I went on to marry this woman. Maybe this shitty date should have been a sign of things to come....but that's another story for another blog.

Thursday, October 4, 2007

Remicade Allergy - Remicade For Crohn's Disease Stories

I have gotten some feedback from those that have gotten Remicade infusions for their Crohn's. It reminds me the second time I got remicade. I guess there is a high chance for an allergic reaction if you start on remicade and then stop before you have had a certain number of treatments. I want to say it is four. Anyways, I went to the infusion center in Winter Park (Florida) and got hooked up. I was fine after the test dose, so they turned up the drip. Ooops, I had a pretty severe allergic reaction, breaking out in hives and experiencing shortness of breath. I got loaded up with bendedryl, steroids and antibiotics through my IV. I was unable to return to work and went home extremely doped up.

Here is an interesting article on the success or Humira when Remicade fails:
ROCHESTER, Minn., May 2 (UPI) -- Adalimumab -- sold as Humira -- works on Crohn's disease for those adults who fail on infliximab, sold as Remicade, say Mayo Clinic scientists in Minnesota.

A study of 325 subjects with the disorder who were treated with Humira or placebo, showed that after four weeks 21 percent of the Humira group were in complete remission and 52 percent noted an improvement in their symptoms.
In contrast, only 7 percent of the placebo group went into remission and just 34 percent had fewer symptoms.

The study was done at 52 centers in the United States, Canada, and Europe on patients with moderate to severe Crohn's disease whose symptoms persisted on Remicade or who had developed an allergic reaction to the medication.

"Approximately 50 percent of Crohn's disease patients ... will eventually develop an allergic reaction (to Remicade), need higher doses, or stop responding to the therapy," said researcher William Sandborn. "This study demonstrates that, in the short term, Humira can be safely administered ... to these patients (for) a second chance at remission and a significant improvement in quality of life."

Crohn's disease is an inflammatory, autoimmune disorder of the gastrointestinal tract that produces abdominal pain, fever, nausea, vomiting, weight loss and diarrhea. Currently there is no known cure.

A report on the research was published May 2, 2007 in the online issue of the Annals of Internal Medicine.
UPI May 2, 2007


Another great Remicade Story -
Thirty-two years ago Ginger Gray walked into her doctor's office complaining of abdominal pain, diarrhea, severe weight loss, and overwhelming joint pain. At 19, she hadn't grown an inch since the sixth grade. But her doctor said there was nothing physically wrong with her, and even suggested she seek psychiatric counseling. Fortunately for Gray, she sought another physician's opinion. Based on tests he conducted, the doctor recommended the 4-foot-11-inch Pennsylvania resident begin full-time treatment for Crohn's disease.
"Crohn's disease robbed me of my stamina," Gray says. "It took two years for me to fully regain my strength and weight so that I could begin working again."
Until now, treatment for Crohn's has relied on surgery and anti-inflammatory and other drugs also used to treat other conditions. In August 1998, the Food and Drug Administration licensed the first treatment specifically for Crohn's disease, an incurable and sometimes debilitating inflammation of the bowel.
Remicade (infliximab) is a genetically engineered antibody that blocks inflammation caused by a protein called tumor necrosis factor. After clinical trials showed benefit from Remicade treatment within a two-to-four week period following a single dose, FDA approved the drug for patients with moderate to severe Crohn's disease who have not found relief with other treatments.
"We recognized that [Remicade] had such a dramatic effect on patients," says Barbara Matthews, M.D., a medical officer in FDA's Center for Biologics Evaluation and Research, "that it was given accelerated approval."
Remicade, which is taken intravenously, can decrease the amount of inflammation along the lining of the intestine. Clinical trials also show that Remicade is effective in closing fistulas (abnormal passages or sores between the bowel and skin). Although not a cure, the drug reduces the symptoms in patients who have not responded well to traditional treatments.
"This is an exciting development for two reasons," says R. Balfour Sartor, M.D., professor of medicine, microbiology and immunology at the University of North Carolina, and chairman of the National Scientific Advisory Committee for the Crohn's & Colitis Foundation of America (CCFA). "It is the first therapy for Crohn's disease derived by molecular techniques, and it has the possibility of improving the quality of life for [Crohn's] patients."
But Sartor also cautions that the long-term toxic effects of Remicade are unknown and that the drug is not needed by every Crohn's disease patient. "Two-thirds of the people will have near immediate results," he says, "but only those patients who do not respond to other therapies" are eligible to take the drug. The next step is to maintain a patient's remission after the drug's initial effect has worn off.
Currently, studies are being done to better define the risks and longer-term benefits of Remicade because drug reactions and potential adverse effects from suppressing tumor necrosis factor require further clarification.

- by Carol Lewis, FDA Consumer

Tuesday, October 2, 2007

Top 12 Joys During a Colonoscopy Exam - Let's Get Naked!!! Wooo!

I found this on about.com (written by Mike Durrett): The U.S. Department of Health and Human Services says: "Colonoscopy lets the physician look inside your entire large intestine, from the lowest part, the (you know), all the way up through the colon to the lower end of the small intestine." A long, long, lloonnnnnnnggg, flexible roving tube is inserted with a teensy light, camera, and blower.

12. The pre-show cleansing -- known at my house as "The Bottomless Spit."

11. There's nothing to hit the fan.

10. Anal probe makes you eligible for guest appearance on "South Park."

9. Crack navigation provides little chance of colliding with iceberg.

8. Zany rectal air hose makes you feel you can fly over Macy's parade.

7. Any loose change found is yours!

6. Sedatives hallucination transforms doctor into Jim Henson and you're a Muppet.

5. Don't need to wear dress-up clothes to get pictures taken. Eight-by-10s and wallets prescribed and autographed by physician.

4. That's you on the video monitor -- and, no, you don't have tunnel vision.

3. Intestinal muscle spasms taped for MTV.

2. You have a textbook colon. The bad news: You can only use a school potty.

And the number one joy during a colonoscopy examination:

Medical team refers to you as "The Outback Snakehouse."

Fart and Colonscopy Jokes are Always Funny

I am not sure why, but the old saying "Fart Jokes Are Always Funny" is true. Try telling one and I guarantee you someone giggles. Anyways, this goes back to a bookmark I had from a few years ago. These are (supposedly) actual comments patients have made either during or after colonoscopies. I kind of like #6....Let's hear your "votes"! Next colonoscopy I plan to come up with a new one to add to this list. Be warned Dr. Shafran!

1. "Take it easy, Doc, you're boldly going where no man has gone before."

2. "Find Amelia Earhart yet?"

3. "Can you hear me NOW?"

4. "Oh boy, that was sphincterrific!"

5. "Are we there yet? Are we there yet? Are we there yet?"

6. "You know, in Arkansas, we're now legally married."

7. "Any sign of the trapped miners, Chief?"

8. "You put your left hand in, you take your left hand out. You do the
Hokey Pokey...."

9. "Hey! Now I know how a Muppet feels!"

10. "If your hand doesn't fit, you must acquit!"

11. "Hey, Doc, let me know if you find my dignity."

12. "You used to be an executive at Enron, didn't you?"

AND FINALLY (drum roll and cymbal crash.....)

13. "Could you write me a note for my wife, saying that my head is not, in fact, up there?"

Monday, October 1, 2007

A Typical Crohn's Disease Monday at the Office


Unbelievable pain this morning. Probably from the crappy food choices and crappy beer choices (maybe I should go back to Corona from Natty light and bud light!). Anyway I had serious stomach pain and was productive my mass printing my emails and reading them in stall number 3. I need to see about an easy way to store reading material in the ceiling panel. I HAVE TO have something to read when i poop. I joke but if there is nothing at a friends house I will read their deodorant and hairspray containers. It's embarassing sprinting down the hall with a newspaper, BrandWeek magazine, or other materials. I want to invent little Crohn's books that fit in your pocket. Imagine the newest John Grisham Book - Playing For Pizza). It is AWESOME and I read in about 3 days (thanks for sending it Mom). Also, if you haven't read Bleachers, it is another John Grisham football book that is awesome.

Anyways, would love to hear feedback so feel free to offer up your stories and tips on dealing with crohn's at work.

Saturday, September 29, 2007

I Pooped Today T-Shirt




I pooped Today! This I pooped today t-shirt cracks me up. This is not one of my t-shirts but it still makes me laugh. I did poop today. At least 5 times and its only 4:30. By the way, regarding Crohn's and beer. Last night was fun. You could prepay for your beers by 7 and get happy hour prices.$1 16 ounce drafts. So yeah, I stepped up at 6:58 and ordered myself 8 beers. I had some chips and salsa and between that and the beer I pooped last night at least 5 times when we were out partying at Tijuana Flats in Winter Springs (Florida). I kept going to the bathroom..my friends probably thought I was doing blow in there. LOL, and thank god they know me better than that

Friday, September 28, 2007

Ahh, Crohn's and Beer


I see lots of traffic and get questions on Crohn's disease and beer. "Can I drink beer with Crohn's Disease?" "What is the impact of alcohol on Crohn's disease?" The list goes on and on. Well IN MY OPINION...there are two anwers.


If you are having a Crohn's Flare-up: NO, avod alcohol. Common sense here. Even I am pretty good about it.

If you are pretty healthy/in "remission": Go for it. I am somewhere in between. More on the good side...so I will be having a few bud lights tonight. Hopefully not a few more than a few


Catch you guys later.


-Scott

Wednesday, September 26, 2007

My Personal Crohn's Update

Since some of you guys have been asking....I am doing fairly well right now. I am off of the Asacol, Pentasa, 6mp, etc. I am currently only on Humira. I am due for a shot in about 5 minutes so I thought I would write. My neck is hurting, so my excercise (soccer, running, weight-lifting) is decreasing while my weight is increasing. I haven't gained too much..but a couple pounds. For those of you that don't know me. I am the rare Crohn's guy that never feels too skinny. I eat a cheeseburger and gain 3 pounds...that's just me. So when I get sick or have a Chron's flare up, (and this is sick) I like the liquid diet and weight loss portion. Anyways, my Crohn's Disease is currently under control. i am watching my diet and trying to behave. The night sweats are on and off. One night they are awful. The next night they are OK. I think I have had two good nights in a row, but the AC has been on cold and now that I have a Humira shot coming I will probably sweat tonight. ****UPDATE**** I got my Humira shot tonight and Amy pushed the plunger down on the syringe much faster than normal. This was a good thing. I got it over in 5 seconds instead of 25 and all things considered this Humira shot was significantly less painful.

Sunday, September 23, 2007

Watching David Garrard Play Football - Athlete's with Crohn's

So I am sitting here watching David Garrard play football. I love seeing anyone beat Crohn's but I have a special place in my heart for athletes with Crohn's. David is doing well as the starting quarterback for the Jacksonville Jaguars. He is a fighter on the field and is making short work of Crohn's disease. He really put the weight back on quickly and is treating his Chron's with Remicade. Watching him fight on the football field makes me proud. Also makes me want to get my neck healed so I can get back to soccer!

His story is here:
Jacksonville Jaguar Quarterback David Garrard first experienced symptoms of Crohn’s disease at the end of the NFL season, in January 2003. The diagnosis was confirmed with a colonoscopy, and Garrard began treatment. His management plan included Canasa, prednisone, and finally, Remicade. These therapies failed, and Garrard lost 35 pounds from his 6’2” frame. In June of 2004, he underwent surgery to remove about 1 foot of intestine.
After surgery, Garrard recovered quickly and regained the weight he had lost. A post-surgery examination showed that his gastrointestinal tract was free of Crohn’s. After a routine colonoscopy revealed traces of Crohn’s last year, Garrard again underwent treatment with Remicade, and as of July 2006 is Crohn’s-free.
Garrard has recently entered into a partnership with the Crohn’s and Colitis Foundation of America called Team Crohn’s. Team Crohn’s is an initiative sponsored by Centocor Inc that focuses on education about pediatric Crohn’s disease. As part of Team Crohn’s, Garrard is touring
Camp Oasis locations around the country. Camp Oasis is a residential program for children with IBD. Doctors diagnosed David Garard with Crohn's disease in 2004. Despite undergoing surgery in June 2004 to remove a nearly 12-inch portion of his intestines, Garrard played during the 2004 NFL season.
Garrard's wife, Mary, gave birth to the couple's first child, a son, Justin Thomas Garrard, on September 17, 2007.
Educating the public about the disease is now a priority for Garrard. "Even though a lot of people suffer from Crohn's, it's still a condition many people don't know anything about. Since telling others I have this disease, I've had people who seemed to come out of the blue, saying 'Oh, yes, I have that, too.' It's a funny disease in a funny place in an area you don't normally want to talk about over dinner." He has been so successful in building up his body that his coach recently asked him to shed ten pounds off his 250-pound physique. Garrard, who now weighs about 240 pounds and has a mere 9-percent body fat, eats a high-protein diet. That's not the way it was when he was in college, where he ate lots of junk food and had 15-percent body fat, which Garrard says is at the high end of normal for professional quarterbacks.He now stays far away from junk food and no longer has cravings for fried chicken. "I haven't had fried chicken in such a long time that I don't even have a desire for it anymore." But David still loves food. "Sticking to the right diet for me can be a bit challenging," he says, adding, "That'll always be my weakness. I'm a food connoisseur with a passion for everything from Italian to seafood." When it comes to his future, Garrard's goals are straightforward. "I'll do whatever it takes to avoid any more recurrences of Crohn's disease. I eat as healthy as possible, take my medication on schedule, and listen to my doctor. I want to be the best husband I can be and, when I have children, the best father, too."

Pearl Jam, Mike McCready (guitarist) and Fans Continue to Fight Crohn's Disease

Thought this was an interesting story about a Peal Jam Fan doing something to help fight Crohn's Disease. Peal Jam fan Anthony Piscatella of Troy New York won a Peal Jam contest to host a screening of a Pearl Jam concert film is using the opportunit to raise money to fight Crohn's Disease.

Piscatella says he was one of the lucky few chosen on the basis of planning the best screening party, and says he will charge $3 admission to the event and donate the proceeds to a New York City charity, the Crohn's and Colitis Foundation.Piscatella said the disease has not had a direct impact on his life, but he became involved because of his appreciation for the rock band, whose membership has been directly affected by Crohn's."I've been working for the last few weeks on hosting a huge benefit for Cornice's disease because Peal Jam lead guitar player (Mike McCready) has Crohn's disease," Piscatella said Thursday, a day after he got an e-mail informing him he would be one of the lucky hosts.

Saturday, September 22, 2007

Good Article on Diet and Crohn's Disease - Foods to Avoid

Hey guys - Good article on the role of Diet with Crohn's Disease . Foods to eat, foods to avoid, etc.

The role of diet and nutrition is very important in Crohn's disease and should be considered as an important add-on treatment to medical therapies. Although there is no evidence to show that the condition is caused by nutritional factors, the food you eat can affect the symptoms of Crohn’s Disease.

Dietary guidelines for Crohn's disease vary depending on the severity of the disease, location of the inflammation, and symptoms. As crohns disease is characterized by inflammation along the digestive tract it is often difficult for the body to absorb enough of the essential nutrients that it needs to function well. In addition, people with Crohn's disease often experience a decrease in appetite.

During an acute phase of crohns disease, bulky foods, milk and milk products may increase diarrhea and cramping. Generally, the patient is advised to eat a well-balanced diet, with adequate protein and calories. Diet may have to be restricted based on symptoms or complications.

Because Crohn's Disease affects the area of the intestines where a lot of the absorption of nutrients takes place, taking supplements is usually advised. The greatest amount of digestion takes place just beyond the stomach in the small intestine. An inflamed intestine as in the case with Crohn's Disease is not able to fully absorb and digest the nutrients from food. As a result Crohn's Disease sufferers are often unable to properly digest and absorb carbohydrates, fats, proteins as well as many vitamins and minerals. Over 40 percent of individuals diagnosed with Crohns Disease showed that they can eat enough food but can’t absorb it adequately, especially carbohydrates. A high quality nutritional supplement can provide the nutrients the body needs for proper health.

Here are some general dietary guidelines for Crohn's disease:

Eat a well-balanced diet
Drink plenty of fluids to offset losses from diarrhea
Consult with your doctor if you need to take vitamin, mineral or herbal supplements
Limit high-fiber foods (whole grains, raw vegetables and fruits, beans and nuts)
Avoid foods that seem to worsen the symptoms
Limit dairy products

What is the best Diet for Crohns Disease?

Unfortunately there is no single effective Chron's disease diet which will reduce symptoms for all patients. A Chrons disease diet may vary from individual to individual and may need to be changed, depending on symptoms or complications.

Most dietitians with experience of Crones disease simply recommend a healthy balanced diet free of any foods that aggravate the symptoms. Generally, foods that make Crohn's disease symptoms worse are processed products, gas-forming fruits and vegetables, alcohol, lactose, caffeine and foods high in fat.

Choosing a proper diet for Chron's disease is important. The detection of foods that seem to worsen the symptoms and the introduction of foods that help ease them is a slow but essential part of overcoming Chrones disease.



written by Robert Hill

Friday, September 21, 2007

Decisions, Decisions - Not really part of my Crohn's Disease Blog

Off Topic I know. What does your haircut have to do with crohn's disease? Nothing. But vote for whether I shave my head short or keep it the same. Vote now

Sunday, September 16, 2007

Terrible night sweats

I feel like I slept in a swimming pool last night. I sweat so much it was unreal. I was too tired to change the sheets so I layed down 2 towels twice during the night. I can already feel the heat coming on now and I am not in bed. Crohn's Disease sweats suck!

Thursday, September 13, 2007

Severe Neck Pain

Ok, in a nutshell...my neck has been messed up for a little over a month. It feels to me more of a nerve than a muscle. Last night in my soccer game I tweaked it a bit...then a bit more. It hurt prior to going to bed. Sometime into the middle of the night I realized I can't even move. UNBELIEVABLE PAIN. I barely made it to work, and left at 4 for a doctors appt.. I can't pick my head up all the way without blinding pain. I can't turn it. I can't breathe heavy...cough...nothing...I am googling it now...seems to be unrelated to Humira (which can actually be used to help arthritis and joint/muscle pain). Really nervous...will keep you updated.

UPDATE
OK, so I went to the doctor and got a cortisone injection, solumedrol and a muscle relaxer. I am having serious muscle spasms and have some tears/striations and bleeding. Hopefully no nerve damage. I feel quite a bit better. Hopefully I am not out of soccer and running too long.

Wednesday, September 12, 2007

Humira, Humira

It's time for a Humira (Adalimumab) shot folks. For me a Humira shot means some brief pain, followed by a night of good Crohn's disease sweats, and then hopefully a few good days. My Crohn's has been pretty good...mostly overshadowed by soccer injuries. Pinched nerve in the neck and bad left knee. We won last night 14-10 indoor...and lost tonight 3-2 at Red Bug (but we played awesome). Time to finish my beer and then have Amy give me my shot.

By the way...it seems I have picked up some readers (shout out to Seattle) of this blog and I am thankful. I might not have the most exciting posts, but I do like to follow the stories and blogs of people with Crohn's. So if you are reading this sometimes or a return visitor...leave me a message. It makes me feel good.

Monday, September 10, 2007

Crohn's Disease Half Marathon Team Challenge Update

Although the CCFA website invited me to sign up and implied there would be a Central Florida group there doesn't seem to be. I was excited to sign up for this half-marathon, and asked for more info over a week ago. Today I got an email informing me of meetings in Boca and Miami...nothing in Central Florida. In fact, no one ever got back to me. Anyways, unless someone local wants to train and contacts me in the next couple of days....I think I am out.

UPDATE (9/11/07) - I got a phone call at work today while I was finishing up a meeting, regarding online training and interest in the Orlando area. The woman from CCFA was VERY cordial and informed me of some virtual training opportunities. That is how I trained for my marathon, so I am intrigued I did not get a chance to read it or attend the online session tonight, but I understand there is another on Thursday. Time is short though...

Thursday, September 6, 2007

More Athletes and Crohn's - Hockey Player out Indefinitely with Ulcerative Colitis (IBD)

Forward Fernando Pisani will be out of the Edmonton Oilers' lineup indefinitely after being diagnosed with ulcerative colitis. Ulcerative colitis is a type of inflammatory bowel disorder and very closely related to Crohn's disease. Pisani had 14 goals and 14 assists in 77 games with Edmonton last season. After scoring 14 goals in the 2006 playoffs, Pisani was rewarded with a four-year, $10 million contract in the offseason.

Hard to believe that at 30 he is younger than me. I am 32 and struggle with sports and Crohn's on a daily basis. Other athletes with Crohn's Disease:
Theo Fleury – NHL, Shane Corson– NHL, David Garrard - NFL

Sunday, September 2, 2007

Beers, Night Sweats, and Hives

Here I sit, after taking a break from reading The Great Gatsby and I feel hives breaking out on my body. Stomach, arm, back, ears. I have NO idea why. I haen't gotten them since I have been on Humira, but got them during my remicade infusions. I am baffled as to why I have them now. I had a few beers tonight and just took an ambien, so I don' want to take a benadryl. Ahh, the fun of being me! Earlier today I was able to hit the gym for weights and the treadmill before taking a 15 mile bike ride in the midday heat.

Friday, August 31, 2007

Uncle Booger's Bumper Dumper!!

I ran across this last night and was almost in tears. Check out Uncle Booger's Bumper Dumper! Such a great tool for those with Crohn's. Many of you know that I could have used this while commuting 1 hour each way (Orlando to Melbourne)! By the way this is an actual product!

Thursday, August 30, 2007

Ugh Time for a Humira Shot

Yum, 40 mg Humira adalimumab shot (subcutaneous) on the way. I am sure it will make my Crohn's Disease feel beter, but damn, this is going to hurt. I'm actually going to continue this post as I get my shot of humira. Hmm, I think I would rather have a shot of Patron....maybe a Jaeger Bomb. At least I am drinking a beer.

Ok, so here goes..gonna time it...30 seconds from entry to needle withdrawl. This particular one wasn't so bad....I don't feel the needle enter...as I type this two minutes later it hurt worse than the actual shot. Maybe I am just a wuss...pain has subsided....it's not as bad as it sounds. Oh, and my biggest concern with Humira is the cancer. I guess it lowers the effectivess of the immune system. I often wonder if I should stick with the Asacol and/or 6mp and deal with the Crohn's so as not to deal with the possibility of cancer.

Sunday, August 26, 2007

More Night Sweats

Last night was like sleeping in Scott's Crohn's Disease River! Seriously people, they say night sweats are caused by low grade fevers..which I don't really get during the day. Last night I had serious crohn's sweats! I was sweating all night. I changed the sheets once, layed down towels another time, and just layed there in a puddle of my own sweat freezing the last time. Sorry, had to gripe real quick.

Saturday, August 25, 2007

Crohn's Flare Up Tips

I am not a doctor (I just play one on TV), but here are some of my tips for dealing with the onset of a Crohn's Disease Flare Up.

DEAL WITH STRESS (Don't Sweat the Small Stuff!) - A major risk factor for Crohn’s flare-ups is stress. While it’s impractical to think that you can remove stress from your life completely, making an effort to at least try and limit the amount of stress can seriously reduce the number of and severity of Crohn’s flare-ups. Things like yoga or medication or even just making time in your schedule to read a good book can be great ways to relaxbeat stress. For me it is sports....soccer, running, just getting a mental break by myself somewhere. I am firmly convinced that your ATTITUDE can help prevent Crohns Flare Ups.

PREDNISONE - If I feel one coming on..I self-medicate a bit. I may up the Asacol, take a Humira shot early...or the best thing is two a mini (2 dose or so) blast of left over Prednisone.

LIQUID DIET - Take at least 24-36 hours are rest your gut...Drink shakes, soups, etc...put yourself on a full liquid diet.

FOODS TO AVOID - During a Crohn's Flare up most doctors, will tell you (probably wisely) to avoid spicy foods, whole grains, ruffage (lettuce, etc) and dairy products. Again, the idea is to keep it bland.

Thursday, August 23, 2007

Crohn's Disease Half Marthon - Team Challenge

So, I am thinking of joining Team Challenge. Team Challenge is the Crohn’s & Colitis Foundation's new endurance training program. This exciting new fundraising program trains you to run or walk a half marathon while helping the Foundation raise funds to find a cure for ulcerative colitis and Crohn’s disease. Their second event is the ING Miami Half Marathon taking place on January 27, 2008. I will begin training Tuesday. I am really excited about this and if anyone with Crohn's in The Orlando area is interested in joining me in training, let me know here.

Tuesday, August 21, 2007

Another Humira Shot and more night sweats!


Those of you that know me laugh when I talk about getting shots for something related to my Crohn's Disease. You laugh because I have somewhere around 15 tattoos, but wimper at the thought of a quick prick with a needle. Well these Humira shots HURT! The needle itself is no big deal, but the pain as the medicine enters is pretty tough. I usually get through it thinking about tattoos or using the adreline part of it. Either way, I am off of the Asacol, 6MP, etc so I guess I should not complain too much. My next Humira injection is on the horizon. For those of you looking for more information on Humira and Crohn's Treatment, click here for the humira website.


And while I am complaining....Anyone else get the night sweats? I have them more often than not, but I sweated through my sheets twice last night. I do not entirely understand the connection between Crohn's disease and night sweats but I often (well my wife Amy does) change the sheets by 1am, then have to cover my side with towels again at 3 am. A pain in the ass...no pun intended.

Soccer during a Crohn's Flare Up

One of my biggest source of frustration has been struggling with playing sports and having Crohn's Disease. My stomach was awful yesterday (see previous post), yet I still managed to play a soccer match at 8:30. I basically was dealing cramps, swamp-ass (hey I promise nothing other than to be direct and honest) and general irritation on my hiney (well said if I was an 80 year old gentleman). Anyhow, soccer for me is an outlet and makes me feel NORMAL. My family acts as if my stomach can't really hurt that bad and almost as if I am playing it up. In reality for a few minutes I can get around or get over the pain.

So...two takeaways -
1. You can play sports even with active Crohn's or a flare up. I do it. Several professional athletes do it (David Garrard and Theo Fleury being two of them.)
2. Find your distraction....whether it's water-skiing, bungee jumping, joining the professional Rock, Paper, Scissors circuit (there is one), or meditation....Find something that at least for a few moments makes you forget about Crohn's.

Monday, August 20, 2007

I Hate Mondays


I don't know what it is about Mondays and my Crohn's disease..but I have come to dread them. Maybe I get off my schedule and eat too much. Maybe I drink (ok, not maybe) I drink too much beer. Either way, Mondays consist of severe stomach cramps and as a result I would get more work done by setting up a mobile office in stall number 3.


Anyways, maybe I should lay off the beer. I think I also have Choronas Disease!

Sunday, August 19, 2007

Crohn's Disease and Diet

There are many schools of thought regarding Crohn's Disease and diet. High fiber, low fiber. Eat normal, eat restricted. No fruit and veggies. Eat fruit and veggies. It is confusing picking out a diet when you have Crohns. For example back in Connecticut, Dr. Sammarco told me that unless I am in a flare-up I can eat Mexican Food with hot sauce, guzzle 6 Coronas, and wash it down with nice ruffage filled salad. That never made much sense to me. Dr. Shafran (my IBD doctor in Winter Park) is a bit more sensible, wanting me to watch my diet a bit more carefully. Now I stick to just a Taco Salad and 5 Coronas. Seriously, there is a lot of information on Crohn's disease and diet. Some need gluten free diets, some are lactose intolerant and some can't drink beer. Here are some good links related to Crohn's Disease and your diet:

Wednesday, August 15, 2007

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!

Newly Diagnosed Teen?

It can be scary when you first get diagnosed with Crohn's Disease. I vividly remember my first diagnosis and the first couple of weeks. I had some great resources and great people. If you want to talk, or check out some good books on dealing with Crohn's Disease...let me know. I would be glad to help out.

Colonoscopy Jokes and Humor

I used to have a website bookmarked with different jokes to play on doctors when going to a colonoscopy...you know the standard fare, red sharpie market like a target, exit only signs, things to say, etc. My doctor (Dr. Shafran in Winter Park, Florida) is awesome and loves butterflies. So last month for my colonoscopy I got about 20 butterfly temporary tattoos and put them all over my butt. I was already out when they saw them, but apparently he paraded the whole office in to see! They thought they might me real because I actually have about 15 tattoos. Anyhow, if you have a link to that site..let me know. Crohn's disease jokes are always welcome here!

Tuesday, August 14, 2007

Pain at work!

Ah, so my stomach is actually killing me. This is one of those days where Crohn's Disease sucks. One of the reps for a company I advertise with came in to take me out to Sam Sneads and after eating a normal lunch I am back at work in pain. I actually locked my office door for a while while I laid down on the floor. Ugh. Anyhow, I had to gripe. Going home to take a percocet then will try to play soccer tonight!

Anyone else deal with pain in the workplace?

Thursday, August 9, 2007

Tips for Crohn's Disease Flare Ups

Living with any chronic disease can be a challenge, and Crohn’s is no exception. The extremely painful flare-ups make day-to-day living seem impossible and when the disease is in remission, the stress of worrying about the next one can be almost as bad. So, how do deal with these flare-ups when they happen?A Crohn’s flare-up is usually associated with the onset of symptoms such as fatigue, joint pain, weight loss, abdominal pain and rectal bleeding, a loss of appetite and diarrhea.The first step is being able to recognize the risk factors involved in dealing with flare-ups. Maybe the easiest risk factor to avoid is exposure to tobacco products, weather you’re smoking them yourself or if your family members or friends are. Another major risk factor for Crohn’s flare-ups is stress. While it’s impractical to think that you can remove stress from your life completely, making a concerted effort to try to limit the amount of stress can seriously reduce the amount of and severity of Crohn’s flare-ups. Things like yoga or medication or even just making time in your schedule to read a good book can be great ways to relax and stave off the stress monster.Another possible trigger for Crohn’s disease is a woman’s menstrual cycle. Many women who suffer from Crohn’s experience an increase in flare-ups during their period. It’s recommended that women who experience this keep a diary over a period of months to look for trends and help develop a treatment regiment with your doctor to put an end to the cycle.The use of some over the counter drugs such as ibuprofen (Advil) and naproxen (Aleve) have also been linked to Crohn’s flare-ups. If you need a non-prescription pain killer, consult your doctor to see what kind is right for you.Treatment for these flare-ups fall into three basic categories: drug treatment, nutritional adjustments and surgery.The most common drug to treat Crohn’s are anti-inflammatories, such as Sulfasalazine. This drug has shown to work for a majority of Crohn’s sufferers, but it’s not a cure-all. And like with all drugs, there are side effects such as nausea, vomiting and headache.If you have moderate to severe Crohn’s, the FDA has approved a drug called Remicade (but again, I like Humira). The drug actually blocks the bodies inflammatory response. This drug is only used for patients who don’t respond to more traditional treatments.Nutritional supplements are another common way to deal with Crohn’s flare-ups. This course of action is geared to those that don’t want to put medications in their bodies and are looking for a more natural alternative. Foods to avoid, such as spicy foods, whole grains and dairy products are a good first step. Drinking high protein shakes to make up for the fact that a patients intestines are so ravaged so that they don’t absorb nutrients anymore is another common way to help treat the disease. These are especially common in kids who need nutrients to grow.A large number of Crohn’s patients will need surgery at some point to deal with the long-term effects of the disease. Sufferers are warned, however, that removing a section of intestine doesn’t cure the disease, but may be necessary if that area becomes to deteriorated by ulcers. It should be used as a last resort.

Wednesday, August 8, 2007

Newly Diagnosed? You can beat Crohn's

I must say, 11 years ago as a healthy 21 year old, I was shocked to wake up from a colonoscopy, still heavily medicated, seeing about 5 versions of my doctor..to hear "You have Crohn's Disease" This all came about quickly, and I just heard "Disease" and started planning my own funeral. I look back on the past 11 years....No, nothing is normal, I crap several times a day (more than you do in a week), have constant cranky-ass, and have pain all the time. That being said, I play soccer 5 times a week (at 32 years of age), ran a marathon, and still run competitively. So, if you are newly diagnosed...drop me a line. Life with Crohn's is not a cake walk...but it can be quasi-normal! Stay tuned for the story of how I crapped my pants walking through Manhattan on a date...and stealthy cut my underwear off and dropped them through my pant leg without the lucky lady noticing!

Tuesday, August 7, 2007

Humira Rocks

So after 11 years of battling Crohn's I have finally found something keeping it under control. I have spent years puffed up and moonfaced on prednisone, taking 16 asacols a day, etc. I tried Remicade and had a horrible allergic reaction during the infusion (we are talking major hives and inflammation). That led to getting pumped up with steroids, antibiotics, and benadryl thogh the IV. Fun. I was really bummed because the doctor had high hopes for that one.

I was set to join a clinical trial for Adalimumab (sold as Humira), but the day before I was to start it got approved by the FDA. After a huge waste of paperwork for the trial, the insurance company denied the drug because it was so new its main use is not for Crohn's disease. Well, after 4 needles during the loading period (subdermal), and then 2 every 2 weeks, I am now on 1 every 2 weeks. The needles are nothing, but the medicine itself STINGS unbelievably bad. I both dread and look forward to those shots of Humira every two weeks (I am an adreniline junky, so I somehow play that in mentally to get through). Anyhow, my Crohn's is under control and I am happy. Stay tuned for some content to help out fellow chronies. By the way, I have ZERO affiliation with Humira, or whoever makes it (I think it is British company).

Crohn's Disease Blog