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!

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).

What is Crohn's Disease Anyways

As most all of you know, I (Scott) have Crohn's Disease.

At Some point I will dedicate some time to making this page a bit more informative. In the meantime, here is some basic information on Crohn's Disease:

What IS Crohn's Anyway?
An estimated 500,000 Americans have Crohn's disease, an inflammatory bowel disease (IBD) that causes chronic inflammation of the intestinal tract. Like ulcerative colitis, another common IBD, Crohn's disease can be both painful and debilitating and sometimes may lead to life-threatening complications.In my case, the disease is centralized near my terminal ilieum (near the colon). There's no known medical cure for Crohn's disease. However, therapies are available that may greatly reduce the signs and symptoms of Crohn's disease and even bring about a long-term remission. (When healthly I take about 16 pills a day, when in a flare up, I lose count.)

Are there famours people with Crohn's Disease?

Yeah, some people you may know include:
Mike McCready, Pearl Jam Guitarist
Anastacia Kirkland, singer
Theo Fleury – NHL
Shane Corson– NHL
David Garrard - NFL
Shannon Doherty, actress
Dwight Eisenhower
Marvin Bush, Dubya's brother
George "the animal" Steele, legendary wrestler

Welcome to my Crohn's Disease Blog

Welcome to Scott Roy's Living with Crohn's Disease blog. This site is dedicated to helping raise awareness Crohn’s Disease, to bring together the community, and to chronicle the stories of my friends and I as we battle this disease and search for a cure. It’s my mission to provide a place where sufferes of Crohn's Disease can come together and help support each and learn more. Search this website:

What is Crohn's Disease? It is a form of recurring inflammatory bowel disease (IBD), found in over 500,000 people in the United States. Symptoms of Crohn's Disease can include uncomfortable and sometimes devastating side effects if not properly managed including:
Diarrhea, Cramping, severe, Weight-loss, Malnutrition, Rectal bleeding caused by fissures.

Common Drugs Used in the Treatment of Remicade

Anti-Inflammation Drugs. Most people are first treated with drugs containing mesalamine, a substance that helps control inflammation. Sulfasalazine is the most commonly used of these drugs. Patients who do not benefit from it or who cannot tolerate it may be put on other mesalamine-containing drugs, generally known as 5-ASA agents, such as Asacol, Dipentum, or Pentasa. Possible side effects of mesalamine-containing drugs include nausea, vomiting, heartburn, diarrhea, and headache.

Cortisone or Steroids. Cortisone drugs and steroids—called corticosteriods—provide very effective results. Prednisone is a common generic name of one of the drugs in this group of medications. In the beginning, when the disease it at its worst, prednisone is usually prescribed in a large dose. The dosage is then lowered once symptoms have been controlled. These drugs can cause serious side effects, including greater susceptibility to infection.

Immune System Suppressors. Drugs that suppress the immune system are also used to treat Crohn’s disease. Most commonly prescribed are 6-mercaptopurine or a related drug, azathioprine. Immunosuppressive agents work by blocking the immune reaction that contributes to inflammation. These drugs may cause side effects like nausea, vomiting, and diarrhea and may lower a person’s resistance to infection. When patients are treated with a combination of corticosteroids and immunosuppressive drugs, the dose of corticosteroids may eventually be lowered. Some studies suggest that immunosuppressive drugs may enhance the effectiveness of corticosteroids.

Infliximab (Remicade). This drug is the first of a group of medications that blocks the body’s inflammation response. The U.S. Food and Drug Administration approved the drug for the treatment of moderate to severe Crohn’s disease that does not respond to standard therapies (mesalamine substances, corticosteroids, immunosuppressive agents) and for the treatment of open, draining fistulas. Infliximab, the first treatment approved specifically for Crohn’s disease is a TNF substance. Additional research will need to be done in order to fully understand the range of treatments Remicade may offer to help people with Crohn’s disease.

Antibiotics. Antibiotics are used to treat bacterial overgrowth in the small intestine caused by stricture, fistulas, or prior surgery. For this common problem, the doctor may prescribe one or more of the following antibiotics: ampicillin, sulfonamide, cephalosporin, tetracycline, or metronidazole.

Anti-Diarrheal and Fluid Replacements. Diarrhea and crampy abdominal pain are often relieved when the inflammation subsides, but additional medication may also be necessary. Several antidiarrheal agents could be used, including diphenoxylate, loperamide, and codeine. Patients who are dehydrated because of diarrhea will be treated with fluids and electrolytes.