Woman Shares Battle with Crohn’s Disease: “I thought My Body Betrayed Me”

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The summer before I entered high school I started experiencing symptoms such as abdominal pain, diarrhea, and severe weight loss. At a time that is supposed to be new and exciting as a teenager, I was experiencing new feelings of hurt, pain, and fear.

I was in fear because as my symptoms started to intensify and there was no getting around the fact that something was definitely wrong and getting worse progressively. I was desperately trying to hold on to being a normal teenager but I knew in the back of my mind that something was terribly wrong.

I knew that my pain was increasing and so severe that I needed something to help me get my life back. Little did I know that was never going to be the case again.

Life After Diagnosis

After a routine diagnostic group of tests I was diagnosed with a severe case of Crohn’s disease. I had no idea what to expect, but in hindsight there was absolutely nothing that the doctors could have told me to prepare me for the journey ahead. After diagnosis I tried my best to maintain a so-called normal life and cope with my new diagnosis.

RELATED: Is Your Crohn’s Getting Worse? 6 Ways to Tell

I was immediately started on an extremely high dose of steroids and stayed on it for years. I started a chemotherapeutic agent and an immunosuppressant. I became increasingly immunodeficient from all the medications I was on; I developed the shingles virus twice and I lost all of my hair. I stayed on these medicines for years in hopes that they would miraculously begin to start working and all my pain would disappear.

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Each time I tried a different “promising” drug it was in hopes that my misery would subside. And after each drug failed me, my optimism began to fade. After exhausting all options, I had to have surgery.

I went into my first surgery with such high expectations; I was admitted to the hospital in hopes that this surgery would relieve me of my pain and all would be well. That was all but the case. After my first surgery all hell broke loose, I was the sickest I had ever been.

I began stints of constant hospital stays and procedures.

I began to suffer immensely with new symptoms.

I was constantly losing blood, was deathly tired and could barely get out the bed.

READ THIS: 5 Signs of Sudden Onset Crohn’s Disease

Shortly after that I had another surgery. I am not certain if I ever experienced a remission. Severe Crohn’s had become my norm. For over a decade, I adapted my life to live while being in excruciating pain some days and in pain most. I became oblivious to the fact my quality of life was gone.

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My latest surgery I had a total proctocolectomy (removal of the colon and rectum), leaving me with a permanent ileostomy (opening in my belly).

Do You Have It? Symptoms to Pay Attention To

Common Symptoms:

• Persistent Diarrhea: A frequent and watery bowel movement.
• Abdominal Pain and Cramping: Discomfort, often in the lower right abdomen.
• Fatigue: Extreme tiredness that doesn’t improve with rest.
• Weight Loss: Unintentional loss of body weight.
• Bloody Stools: Presence of blood in the stool.
• Mouth Sores: Ulcers or sores in the mouth.
• Fever: Elevated body temperature.
• Nausea and Vomiting: Feeling sick or throwing up.
• Joint Pain and Swelling: Inflammation and pain in the joints.

Other Potential Symptoms:

• Anemia: Low red blood cell count, leading to fatigue and pale skin.
• Eye Inflammation: Redness, pain, or irritation in the eyes.
• Skin Rashes: Red, itchy, or painful patches on the skin.
• Anal Fissures or Fistulas: Tears or tunnels in the anal area.

Living My New Normal

I tried to hold on as long as I could to my colon. I was still striving to be “normal” by clinging to the very thing that was slowly killing me because of stigmas associated with having an ostomy. But there came a time that I had no choice. Having my colon removed was the best thing that has happened to me. There is absolutely no way I would want to go back other than to do it sooner.

My quality of life improved and thoughts that I had not felt in a long time, such as hope, resurfaced. I decided that I wanted to make a difference and improve the lives of others dealing with chronic illnesses. I am living my new normal. I am in love with my new body; my new body saved my life in more ways than one. I want others to not be afraid or ashamed of having an ostomy. I don’t want others to suffer because of the fear of being stigmatized of life saving procedures.

I aim to encourage young women and men through GutlessandGlamorous.Org. Gutless and Glamorous is dedicated to improving the lives of those living with chronic illness.

With a special interest in those living with or contemplating life-altering surgeries, my mission is to empower and uplift those living with chronic illness and to raise awareness and erase the stigmas and misconceptions of life-saving procedures.

A “colostomy” saved my life and I want to highlight that those living with one can be both #GutlessandGlamorous. It is my goal to help erase the stigma of life saving procedures. Anything that has the power to save a life can be nothing but beautiful.