Mary's Going with Guts!

Track my progress as I train for my next Team Challenge half marathon for the CCFA

Looking on the bright side, at least I don’t have to go on Prednisone…

Posted by msdon9 on March 26, 2012

I had my follow up appointment with Dr. Adhami today to discuss the results of my colonoscopy and the pathology report on my biopsies. I was under the impression that I’d leave today with some answers…. either “we’re going to try this, ” or “we’re going to put you on THIS medication to see where it goes…” but it was a lot more ambiguous. My doctor, who is among a team of specialists who diagnose and treat digestive diseases here on the south shore of Long Island, referred me to another specialist in the city. I ended up making an appointment in early April with Dr. Peter Legnani, a research gastroenterologist and clinical instructor at the Mount Sinai School of Medicine  who specialists in complex cases of Crohn’s Disease.

The Mount Sinai Hospital in Manhattan is to Crohn’s and Colitis what Sloan Kettering is to Cancer. Physicians and scientists on the faculty of Mount Sinai School of Medicine often interact with pharmaceutical, device and biotechnology companies to improve patient care, develop new therapies, and achieve scientific breakthroughs in the diagnosis, treatment, and (hopefully eventual) cure for digestive diseases. The problem with Crohn’s is complex… it’s a disease that puzzles doctors in terms of what causes it and how to control it. At this time, there is no cure. Many of the medicines that are on the market now that control the symptoms of IBD may have long-term side effects that we’re still not aware of. Because I’m young, and because I’d like to be able to have children someday, Dr. Adhami feels more comfortable sending me to a more well-known doctor in the field. I guess this is good news, but I’ll be honest and say that it scares me a little bit at the same time.

Have you ever thoroughly read the paperwork that comes with your prescriptions? There’s always a line in there somewhere that says something to the effect of, “remember, your physician prescribed this medication because he feels the benefits to you are greater than any side effects that may occur.” Many of the “industry standard” medications used to treat moderate to severe Crohn’s Disease are TNF Blockers. What does that mean? Basically my immune system will be drastically suppressed, increasing my chances of contracting serious, if not deadly diseases. This isn’t exactly new to me… as a teenager I was on a drug called 6-MP ( 6-mercaptopurine) that had the same side effect. If I go the route of Remicade or Humeria, it will increase my chances of getting lymphoma or other cancers. So why even bother taking it? Well, Dr. Adhami stressed to me that NOT taking any medication to control the inflammation can ALSO lead to a more severe blockage or cancer. Additionally, having the inflamed section of my intestines removed surgically does not guarantee that the disease will not spread to other areas of my digestive tract.

So many of us with IBD who are being treated with these medications are backed against the wall here. While they usually help us feel better, the scary side effects are less than pleasant. Still, when I asked many of my “Chronie” friends for their advice and experiences with Remicade and Humeria, I’ve heard a lot of good feedback. Here’s hoping…

So that’s where I am in this adventure. A lot of people have been checking in to see how I’m feeling, which I appreciate tremendously. Even if I don’t feel like talking about it (surprised?), It’s nice to know that people care to ask. I’ll be honest and say that I really do feel OK. When I was a teenager I was barely able to eat without doubling over in pain a half and hour later. Now I know to avoid the foods that trigger my worst symptoms and cope, for lack of better words. I’m still active… I’ve been following a training schedule for my next half marathon with Team Challenge and working out with my trainer every week. I only miss days of work for procedures and doctor visits, and now it looks like I can probably schedule my doctor visits and infusions around my work schedule so I can still fight the good fight against teenage apathy in English and Language Arts.

And boy am I glad that they don’t need me to take Prednisone! All anyone in this world needs is a bloated, hungry, mood-swingy, pimply ME!!!!

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