Taking Charge of Your Health: Why IBD Patients Must Advocate for Themselves and Stay Proactive with Lab Testing

Living with Inflammatory Bowel Disease (IBD) is often a challenging journey filled with uncertainties. One vital aspect that many patients overlook is the importance of regular lab testing. Taking charge of your health means actively listening to your body and ensuring that no symptom goes unchecked. Often times doctors won't order labs because THEY don't think it's necessary. All doctors have different methods, bedside manners and rules of thumb. My GI doctor is amazing in that he listens to me. If I share my symptoms with him, he orders labs accordingly. Unfortunately, my primary care doctor (I will be getting a new one ASAP) rather wait until I land in the hospital before acting on anything. I am going to share my recent experience of exactly why it's absolutely necessary to take charge of your own health.

Recently, I got a lot of pushback from my PCP about ordering and analyzing specific blood markers, but I remained vigilant and persistent. Boy am I glad I listened to my body. The following post stresses the necessity of self-advocacy, especially when it comes to managing your health.

Understanding the Importance of Regular Lab Tests

For those with IBD, regular lab tests are crucial. Routine blood tests, such as a Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), and inflammatory markers, provide valuable insights into your health status. For example, a CBC can reveal levels of hemoglobin, white blood cells, and platelets, which are essential for monitoring inflammation and organ function.

According to the Crohn's & Colitis Foundation, nearly 70% of patients report feeling better when they can monitor their disease progression through regular testing. Proactive lab testing enables early interventions, allowing for better quality of life and reducing the risk of serious complications.

Listening to Your Body

Recently, I noticed significant changes in my health: my energy plummeted, and I lost 10 pounds without trying, which was substantial for me. I experienced blood in my stool, joint pain, and unusual rashes on my face. Each symptom felt like a warning, urging me to pay closer attention.

IBD often presents in complex ways, especially in forms like Crohn's disease. Some symptoms may signal a flare, while others may be misleading. My experience reinforced the importance of being in tune with my body. When I noticed these unsettling changes, I promptly requested lab tests. This proactive approach allowed for deeper investigation and the prevention of worsening conditions.

The Results Speak Volumes

After my appointment and lab work, the results raised concerns. My CBC showed a low white blood cell count (WBC) and decreased complement proteins C3 and C4. Additionally, a positive Antinuclear Antibody (ANA) test suggested the possibility of drug-induced lupus, especially since I am currently on Humira.

Receiving such news can be overwhelming. However, awareness is the crucial first step toward effective management and recovery. Studies indicate that being informed can enhance decision-making, with nearly 80% of patients feeling more in control of their health after understanding their lab results.

Understanding Potential Complications

The outcome of my lab tests led to further investigation. My GI doctor ordered a trough test to determine if I had developed antibodies to Humira. This step is essential for understanding the medication's effectiveness. Meanwhile, I was referred to a rheumatologist, who suggested that my symptoms might indicate Drug-Induced Systemic Lupus Erythematosus (DSLE).

While lupus is a serious condition, I was relieved to learn that DSLE is often reversible. This gives hope and reinforces the idea that proactive self-management can lead to positive results.

The Road Ahead: Further Investigations

As I await the results of my scheduled endoscopy and colonoscopy, I am reminded of the importance of awareness and self-advocacy in the IBD community. Actively listening to your body and pursuing necessary tests are powerful tools in managing your health.

For anyone navigating this landscape, staying engaged with your healthcare team is crucial. Do not hesitate to voice your concerns and advocate for the tests required to clarify uncertainties. Research shows that patients who actively participate in discussions about their treatment are 60% more likely to experience better health outcomes.

Joining the Fight

An IBD diagnosis can often feel isolating, marked by frustration and fear. However, you are not alone. It is essential to connect with support groups or communities of fellow IBD patients who truly understand these struggles. Sharing stories and experiences can provide encouragement and practical advice for navigating medical appointments and advocating for your health effectively. I am so grateful for all of the IBD warriors I have connected with all over the world. Sharing my journey with them has made it possible to remain positive.

Stay Proactive, Stay Empowered

The key to successfully navigating your health journey is to be proactive. Whether it involves requesting lab tests, discussing new symptoms, or seeking second opinions, remember that your health is worth the effort. In this ongoing journey with IBD, being your own advocate can lead you to new treatments, better management strategies, and improved well-being.

Final Thoughts

Never underestimate the significance of vigilance regarding your health when dealing with IBD. Regular lab testing is essential for tracking your condition and averting potential complications.

Self-advocacy is not just a right; it is your responsibility. You know your body better than anyone else, so trust your instincts and act upon them. If you don't care for your doctor, change doctors. You must be heard. I know I'm a pain in the a** for many doctors/specialists, but I also know I'm in charge of my health, and in the end the squeaky mouse does get the cheese.

Stay tuned for updates as I navigate these next tests. Remember, it's always okay to ask questions and advocate for yourself. Together, we can face our health challenges with strength.

You are your best advocate...no one will fight as hard for you, or put in the effort, as you will.

Don't forget that.

#standupforyou