Saturday, August 6, 2011

Weighing Your Options

Even though it has not been a full year since my diagnosis, I have already approached a point where my medicaiton has stopped working. I know everyone is different, but I still feel like it's too early to have already eliminated one option. Yes, there are a few biologics, immunosuppressants, and alternative therapies still out there to use. However, this disease doesn't have cure...yet! So there are only so many medications to try in my lifetime! I personally plan to live until I'm about 100, but I may be shooting for the stars.

Prednisone seems to be the go to drug when a bad flare occurs. I know from my
experience of being on it for 7 months, I hesitate to take it again. I would rather take it for a short period of time; only if it's necessary. The withdrawal process is tormenting. The biologics tend to be successful for certain people. However, your body can still develop antibodies. This may cause you to stop having a positive respnose from the anti-TNF drug. If later down the road you decide to try the biologic again, your body may still have those dismissive antibodies. In that case, the drug will never be an option again. That's a freaky word: NEVER! I've heard wonderful stories of people being able to take the same biologic years later and having success. Let's all cross our fingers we don't run out of options. Otherwise we'll all result to plain ole' steroids. Which give us beautiful, fuzzy faces, puffy cheeks and fatty tissue where it doesn't belong. Where no body wax, or cleansing facial can do justice.

I've been taking 400mg of Cimzia, since October 2010. I've had a positive response to the biologic until these past few months. My stomach pain has been settling; however, I've developed a fistula. Fistulizing disease is common within Crohn's patients. I thought that it was unrelated to my current treatment. Especially since the fistula is a totally different pain than I'm used to having. But according to my GI doctors, it seems like the Cimzia isn't working to it's full potential. A fistula shouldn't have formed. So there goes the ease of at home, administered shots! Also, I am taking 150mg of Imuran. This drug tends to help inflammation with fistulas - not necessarily close them completely, but help with formation and healing. The last bloodwork I had showed a lack of a therapeutic response to the drug. I'm hoping my next test will show a positive response. So with the fistula, the next best medication seems to be Remicade. It has had a low-risk safety profile for extended use. I've also tried the "quick fix," by taking 500mg of Flagyl and Cipro for 30 days. The two drugs will bring down the inflammatiion and kill bacteria, but never close or permanantly heal a fistula. Definitely not something you want to take long-term. By far the foulest antibiotics known to man. I felt like I was sucking on a penny all day. I also had constant shakes and chronic diarrhea (without the stomach pain...that's the only plus). I had the time of my life on those antibiotics - more like horse pills!

So now that I've gotten the list of my medications out of the way, I can now discuss my issue. Don't we always have an issue living with IBD? My list of medications may not be as massive as other people living with IBD for a longer time. For me, it feels as if I've taken enough medication for a lifetime. I like to weigh the pros and cons of every medication before I begin the treatment. I'm a Google freak. I will obsess and read as much information that my brain can process. I will go through a cycle of emotions reading the medication guide: content, scared, freaked, anxious, relieved and bitter. There is an odd catch-22 that happens when you first start a medication. You are hopeful that it will ease your disease, but fearful of all the side effects and long-term damage. When I began taking Imuran I was still in a terrible flare. This made me jump on the medication without blinking. I don't think I would have been happy to go back on Prednisone, but I was more than willing to try Imuran. I was aware that it could affect my liver, pancreas, and hair growth. Most doctors give you a quick recap of the risks. So quickly that words like: cancer, toxitcity, tumor, lymphoma, infection, and tuberculosis breeze through your ears. The only word I hear in the end is: death! So then you're left to comtemplate the true benefits of taking the medicaiton. I want to feel good NOW, but I don't want to jeopardize my health for my future (a friend of mine said those exact words to me too - us Crohnies think alike). Sounds like I want a lot, right? A doctor can't predict your bodies reaction to these medications. They can only see if they feel it's safe to begin. Sure, they'll gaugue your bloodwork and ask how you're doing every 6 weeks. They just won't understand the daily side effects that take a toll on your body. I remember asking my doctor, a Crohn's specialist, if Imuran was causing my hair to thin. She said it was just from being sick. Almost every Crohn's patient I talk to taking Imuran has hair loss or thinning. Coincidence? I think not! Statistics may present one thing, but hell, we sure experience a million others. We're the lab rat...guinea pig...the medical fields experiment.

I suppose it's always the right time to start asking your GI a million questions about OTHER options. I've been studying on helminth therapy (hookworm, or whip worm treatment). The positive aspect of this treatment is the little side effects, and close to 75% of people experience remission. The worms can be killed instantly if there is an issue. However, that is still a controversial issue among U.S. doctors. Because it's not FDA approved, they can't necessarily recommend the treatment; however, some doctors will verbalize how they feel it's pure bullshit. My main concern is having a doctor who is willing to stil treat me for Crohn's and acknowledge the worm therapy - doesn't matter if they accept my decision. Now, do I do the biologics for life? Have these drugs truly had accurate findings of long-term use? Especially since some are fairly new.

I'm officially dizzy. Maybe the dizziness is from the Crohn's, or the medication, or my confusion...? Maybe someday I won't have to take any pills, never give myself shots, and never have to step foot in a chemo whard for infusions! Now, is that really too much to ask for? Nah, I think everything is possible!


  1. Hope all is well with you. I have Crohn's as well.

    I remember, during a flare, freaking out when my body isn't responding to strong immunosuppressants like Remicade and Azathioprine.

    And IV-steroids didn't even work so the GIs were talking about my next options, surgeries, in case.

    Anyway, be well!