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 I type this two minutes later it hurt worse than the actual shot. Maybe I am just a wuss...pain has'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, 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 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 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 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).

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

Monday, August 6, 2007

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.

Saturday, August 4, 2007

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.

Crohn's Disease Blog