Hi Ted, meet Crohn's disease - The Drugs

Continued from yesterday's post...

Well, I quickly found out that Asacol was definitely not the drug for me. Soon after I started taking it my symptoms worsened tremendously. I was having abdominal cramps so severe that I would lie in my bed in agonizing pain unable to move. I like to think I have a high tolerance for pain, but this was unbearable. The only way I've ever been able to even come close to describing the pain has been to compare it to someone aggressively pureeing your entire abdomen from the inside out. Sound painful enough? It's been the worst pain that I've ever experienced in my entire life by far. I had to skip several of my classes and stay at home and rest while the rest of my friends were being normal college seniors and going out in the city. What made everything even worse was that I didn't want to eat because eating just made everything hurt more. As a result I lost about 12-15 pounds over a period of about two weeks before my doctor told me to stop taking the Asacol.

I finally started recovering and was back to normal about a week or so after stopping the medication and being put on prednisone. Ah prednisone, the miracle drug. I say prednisone is a miracle drug because it has the ability to work quickly to stop the symptoms of Crohn's disase. However, the side effects of prednisone constitute quite a long list, including rapidly gaining weight, being excessively thirsty, breaking out with acne, hallucinations, mood swings, and many, many others. I've personally experienced all of these, with the only difference that my hallucinations were incredibly vivid dreams. I don't normally dream, nor do I remember what I dream. But these dreams, which happen about two to three times a night, are like I'm wide awake in some fantasy land living a second life. As I taper off the prednisone the dreams occur less frequently and with less detail. And the reason that I have to taper off the prednisone is because it's a steroid, and it's extremely dangerous to just stop taking a steroid after exposing yourself to a high dosage. But at least the prednisone allowed me to recover from my flare-up and get back to feeling, well, normal again.

My doctor, however, wanted me to try Asacol again because she thought that perhaps before it was just my Crohn's running its course. So even though I was feeling better and was tapering off the prednisone, I still needed to be on a maintenance medication to help keep my body in remission. Well, it turns out that it wasn't my Crohn's just running its course, because when I started the Asacol tmy symptoms came back with a vengeance. So my doctor finally switched me over to 6-mercaptopurine (6-MP), an immunosuppressant. Immunosuppressants act to, well, suppress the immune system. Basically Crohn's can be thought of as an autoimmune disease, where my body over-reacts to a pathogen or some stimulus and then starts attacking my own cells. So by kicking my immune system down a notch, my body should behave normally.

The only problem with taking the 6-MP is that it would suppress my immune system, so I would be significantly more likely to catch a cold from an ill classmate and take longer to fight it off. Moreover, I would become categorized as a “high-risk” individual when it comes to getting the flu and swine flu vaccines because my immune system would be suppressed. So while the 6-MP has been good for treating my Crohn's disease so far, it's still a dangerous drug. To let you know exactly how dangerous it is, some patients suffering from leukemia receive 6-MP as part of their chemotherapy regimen. It's also so dangerous that the drug label tells me to wash my hands before and after handling the medication.

However, so far the 6-MP has been doing its job and keeping me in remission. Well, for the most part. I've had one significant relapse since my initial diagnosis in 2008, but this relapse was so violent that it required me to go on double the dosage of prednisone just to get my body to calm down again. Also, while in my first flare-up it only took about a day or two for the prednisone to get me close to feeling normal again, this time it took double the dosage almost a full week to get me feeling almost back to normal. So in a way I'm worried that my Crohn's disease is progressing and I may have to advance to the next level of drugs, the biologicals.

The biologicals are the next class and the newest class of drugs availabel to treat Crohn's disease. I almost consider them to be the “sci-fi” drugs because these are the kinds of ideas for drug treatments that you see on the news and think to yourself, “Now wouldn't that be cool.” Well, they're starting to become real. These drugs consist of antibodies given by injections or by an IV drip in a hospital. Antibodies are proteins that are extremely specific for the things that they target, and they are so specific that they usually only target one particular thing out of the hundreds of thousands of things floating around in the cells of your body. The idea behind these drugs is that they target specific factors associated with Crohn's disease or ulcerative colitis. Not only are these drugs extremely expensive at around $1000 a month, but they still don't cure either disease. So in a way the drugs can be extremely helpful and keep many patients in relapse. But at the same time these drugs can be dangerous, expensive, and have costly side effects. But with time and further research we will improve treatments and come closer to finding a cure.

To be continued tomorrow with Hi Ted, meet Crohn's disease: Remission and Living with Crohn's.

Please donate to help me cross the finish line in 13.1 Boston by donating to Crohn's and colitis research today at my personal fundraising page here! Thanks in advance for being so generous!

Hi Ted, meet Crohn's disease - The Colonoscopy

Continued from yesterday's post...

The night before my colonoscopy I had to “prepare” by taking excessive quantities of laxatives and drinking only clear, non-red liquids and eating Jell-O. I still remember that I had to take an entire bottle of magnesium citrate, followed by four Ducolax tablets before I went to sleep for the night, and then another bottle of magnesium citrate in the morning when I woke up. If I remember correctly, that's a combined 8 times the recommended dosage for the stuff. I remember taking the first bottle of magnesium citrate and thinking to myself, “Huh. That's not so bad. I don't know what the big deal is,” only to be racing for the bathroom moments later. My roommates just laughed and thought that the whole scenario was downright ridiculous.

Well, there I was the following day getting a full-on colonoscopy. Was it awkward? Definitely. And I get this question all the time: Did it, well, hurt? To be honest I was knocked out and off somewhere in lala land, so I had no idea what was even going on. The next thing I knew was that the procedure was over and a nurse was getting me some juice and asking me for my name and date of birth. I was still coming out of the anasthesia when my doctor approached my bed and told me the news. “You definitely have Crohn's disease," she said. "You can see by the pattern of inflamed tissue on these pictures that there's sections of healthy tissue dispersed between sections of inflamed tissue. That's a clear sign of Crohn's disease. We took a few biopsies while we were in there to run some tests."

"Wait," I said, half-drunk on the anastestics, trying to understand everything she was saying while I was coming back to full consciousness. "I have what now? Crohn's disease? Are you sure?"

"Yes. Here's a prescription for Asacol. Take 3 pills, 3 times daily. Here's some information on the disease and medication from the CCFA website. Get some rest and then make an appointment to see me as soon as possible so we can discuss everything."

Awesome. Crohn's disease. I had no idea what this meant at the time. Well, I had known about Crohn's disease but I didn't know all the details. So I went to CVS, got my prescription, went home, ate the biggest sandwich of my life, and started looking up information about Crohn's disease and my medication. In all honesty, I was lucky that the CCFA was there to help me out. There were all kinds of information available to me as well as a forum where I could post any questions that I had about getting diagnosed or my medications.

To be continued tomorrow with Hi Ted, meet Crohn's disease - The Drugs.

Please make a contribution to help me meet my fundraising goal in the battle against Crohn's and colitis by donating today at my personal fundraising website here! Thanks in advance for your gift, it means so much to me and the other 1.4 million Americans suffering with this condition!

Hi Ted, meet Crohn's disease - The Symptoms

Back in early October of 2008 I was just a month into my senior year at Boston College. Life was going pretty well for me. I was happy with all my classes, I was starting to get back into rowing after a back injury the previous summer, the football team was doing well, and my buddies and I were having an absolute blast. Everything was going just fine until one day I noticed some peculiar symptoms. So naturally I called home to Mom and told her all about it who told me, "Call the doctor." So I made an appointment with the student health services for sometime the following week, and when I went I was referred to a gastroenterologist for an appointment about five or six weeks later. Not being in any pain and just having some peculiar symptoms I didn't really think too much about it.

In the meantime I naturally resorted to Googling my symptoms and trying to figure out for myself what was wrong with me. I skimmed the list of possibilities—colon polyps, colon cancer, hemmorhoids, Crohn's disease, peptic ulcer, stomach cancer—but in the end I just thought that I couldn't possibly have any sort of chronic disease or something as life-threatening as cancer. After all, I was 21 at the time and in good health, so none of this made sense. I knew that I would just have to wait to visit the doctor to see what they would have to say.

A week or so had gone by and my symptoms continued, and another week had gone by and slowly everything started getting progressively worse. I began to grow concerned when my left and upper abdomen really started to ache. With my appointment with the gastro still four weeks away, I called see if I could see them as soon as possible. Luckily I was bumped into an open slot for the following day.

Let me just say that I was truly lucky that I was able to sneak into the open appointment that day, because when I woke up in the morning I knew that I would need some immediate attention. The pain on my side was getting worse, and the amount of blood that I was seeing was enough to make me really worry. So when I finally got to the gastro I told them absolutely everything that had been going. She told me with a straight face that I needed to get a colonoscopy to figure out what was going on.

"I need get what now? A colonoscopy?" I thought. "Are you serious? But I'm only 21? Oh my God, my friends are going to laugh their faces off when they hear this one."

My doctor could tell I was wary. She explained, “Yeah, well, with you experiencing pain in your upper abdomen, I'm going to need to do an entire colonoscopy rather than the sigmoidoscopy, which would only allow me to see the lower portion of your colon. It's a relatively simple procedure and should take less than an hour or so. And don't worry, you'll be under anastesia.”

Darn straight I'm getting anastesia! Oh man, I hope she's right that she's on to something here, because I didn't want it turning into one of those situations where doctors run tests to eliminate the possibility of something. I didn't want to get a colonsocopy to find out that it wasn't something. If I was going to get a colonoscopy I wanted to get some definitive answers as to what was going on with me. Well, she gave me the information for the preparation for the colonoscopy, which is essentially a regimen of a severe overdose of laxatives. I thought to myself, “Oh boy. This is going to be so much fun.”

To be continued tomorrow with Hi Ted, meet Crohn's disease – The Colonoscopy.

Please help me in my goal to raise money for Crohn's and colitis research by donating today at my personalized fundraising page here! Thank you in advance for your generous help!

Upcoming series - Hi Ted, meet Crohn's disease: Getting diagnosed

I've decided that I would like to share with you my own story of getting diagnosed, from the, well, "interesting" symptoms and doctor's visits to coming to terms with the news that I have a chronic condition that would subsequently change my everyday life. Getting diagnosed with Crohn's disease was a pretty defining moment in my life, and I think sharing my story with you has many benefits. So next Monday through Friday (March 1 - 5) I will be making daily posts in a series I'm calling Hi Ted, meet Crohn's disease: Getting diagnosed. The whole series of posts will cover topics including the symptoms, getting tests done, taking medication, entering remission, and experiencing relapse. All in all, I think my story will provide a fairly in-depth look at what it's like to really live with Crohn's disease and how it affects my daily life. I hope that you read them, learn from them, and enjoy them. I'm looking forward to sharing them with you.

And so it begins – The start of training

The weather's been starting to get a little warmer up here in good ol' Beantown, and everyone's starting to come out from hibernation as all the remaining snow starts to melt. I was originally going to get up and go for a run first thing in the morning, but I let myself sleep in and enjoy the comfort of my pillow a little longer. But after a day of some much needed rest and relaxation, I had to get up and do something with my life. So I put on my running shoes and hit the pavement.

I went on a little 3-mile run down to Cleveland Circle, up to Comm Ave (without getting hit by the T barreling down the middle of the road), and around the reservoir. Just enough to get the blood and muscles moving. I have 18 weeks until the big race on June 27, so I'll have plenty of time to be getting in loads of mileage over the coming weeks. Most half-marathon training plans are usually 8-10 weeks long, so I have plenty of time to get ready. I've been working on a training plan, but I have to be a little flexible right now between work and studying for the MCATs (which are in *gasp* less than 5 weeks!).

And I think it's time to get a new pair of running shoes. Hooray for new shoes! I've probably logged several hundred miles in the ones I have now and I'll be doing upwards of around 50-60 miles/week, so I'm probably going to go ahead and grab a new pair. This week, however, will be a nice and easy week with only around 25-30 miles or so.

Of course, this race is all for the benefit of ridding the world of Crohn's disease and ulcerative colitis, so please make your contribution today at my personal fundraising website here! Thanks in advance for your support!

The CCFA

So while I'm getting ready to head into some serious training for my first-ever half-marathon, the big reason why I'm doing this is because of the Crohn's and Colitis Foundation of America (CCFA). The CCFA played a big role in my life when I was first diagnosed with Crohn's disease in November 2008. Not only were all the resources that I ever needed about the disease or my medication readily available to me, but there was also a forum where I could post any and all questions that I had. Thanks to the CCFA, I've never felt alone in my battle with Crohn's.

The CCFA has played a major role in funding the best Crohn's and colitis related research going on today. To date, the Foundation has raised more than $136 million to directly fund successful, ongoing research. That's a lot of dough that's been put to good use. The Foundation invests all of the dollars they raise wisely, funding the absolute best research anywhere in the world and implementing a peer-review process that insures only the most promising and relevant grant applications are funded. They've shown great success in the past and have even helped to accelerate the discovery of NOD2, a gene involved directly in Crohn's disease, as well as the development of new drug therapies. You can learn more about the CCFA's ongoing role in Crohn's and colitis research by clicking here.

All in all, the CCFA is truly one of the greatest organizations that I've ever come across. I'm on their website regularly, to learn about ongoing research as well as answering some questions of newly diagnosed patients in their forums. Even after over a year of living with Crohn's, I'm still asking the occasional question or two because I'm still learning about how to live with the disease. And I can honestly say that I just couldn't do it without the Foundation being there to teach me and guide me along the way.

So please help me in my mission to help the CCFA fund successful, state-of-the-art research to find a cure for Crohn's and colitis by donating on my personal fundraising website here today! And a great big THANK YOU in advance for helping such a great cause!

So what exactly is Crohn's disease?

In short, Crohn's disease is a chronic disorder which causes inflammation of the digestive or gastrointestinal (GI) tract. Although it can affect any area of the GI tract, it most commonly affects the small intestine and/or colon.

Barium X-ray showing narrowing in the small bowel from Crohn's disease.

Because the symptoms of Crohn's disease and ulcerative colitis (UC) are so similar, it is sometimes difficult to establish the diagnosis definitively. In fact, about 10% of colitis cases are called "indeterminate colitis" because they are unable to be pinpointed as either Crohn's disease or UC. Some sufferers can even go months or years before they get the correct diagnosis!

However, Crohn's and UC do have one strong feature in common. Both illnesses are marked by an abnormal response by the body's immune system. Normally, the immune system protects the body from infection. In people with Crohn's disease, however, the immune system reacts inappropriately. Researchers believe that the immune system mistakes bacteria that is normally found lining the walls of the intestine for foreign or invading substances, and launches an attack. In the process, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation. These cells then generate harmful products that ultimately lead to ulcerations and bowel injury. When this happens, the patient experiences the symptoms commonly associated with Crohn's disease, including such fun things as diarrhea, bleeding, abdominal pain, and subsequent malnutrition and weight loss among others.

Healthy small bowel on the left, inflamed small bowel on the right in a patient with Crohn's. Yup, the one on the right hurts.

Although Crohn's disease most commonly affects the end of the small intestine (the ileum) and the beginning of the large intestine (the colon), it may involve any part of the GI tract. In Crohn's disease, all layers of the intestinal tissue may be involved, and there can be normal healthy bowel in between patches of diseased bowel. If inflamed bowel does not react appropriately to drug therapies, the patient may have to have a portion of the affected intestine removed surgically. Furthermore, Crohn's disease patients are also at a significantly higher risk for colon cancer, and must have a colonoscopy every two years or so to check for cancerous polyps that may develop in the colon.

Crohn's disease can be a challenge to diagnose as well as treat. So please donate at my personal fundraising page today and help get us one step closer to finding a cure for Crohn's disease! Thanks in advance for your support!