Wednesday , October 18 2017
Home / Crohn's / How a diagnosis of Crohn’s disease changed me at 23

How a diagnosis of Crohn’s disease changed me at 23

colitis

A friend once told me, “You’re invincible when you’re 23.” A thought I shrugged off at the time, but it came rushing back when, weeks after my 23rd birthday, I became sick and then sicker.

It started as the flu, but by Valentine’s Day I was admitted to Texas Health Presbyterian Hospital Dallas with abdominal pain, a 103-degree fever, diarrhea, no appetite and a skyrocketing white blood cell count.

A few days later, my dad, who had flown from Kansas, and a nurse were persuading me to force the bitter lemon taste of magnesium citrate down my throat to prepare for my first colonoscopy.

The anesthesiologist told me that I would be put to sleep using Propofol. “It’s what killed Michael Jackson, but we’ll take good care of you.”

Results came back, but they were nonspecific. “Get rest. You’ll be better in a week or two.”

I lay in bed. I slept. I did not eat. I was too tired to watch Netflix.

A couple of weeks later, I was back in line at the Presby emergency room. Again I struggled to keep down the magnesium citrate that would cleanse my intestines. And again my dad kept watch over me from a cot at the foot of the bed.

“You have Crohn’s disease,” said my gastroenterologist as he scanned the room for a reaction.

“It is an autoimmune disease,” he said. “There is no known cure.”

Crohn’s disease may affect as many as 700,000 Americans, according to the Crohn’s and Colitis Foundation of America.

Researchers think it is genetic, though no one else in my family has been diagnosed. It is caused by an increase in TNF proteins in the immune system. The body’s ramped-up immune system attacks the GI system, just like it would attack an infection. This leads to high fevers, diarrhea, inflammation and ulcers. The ulcers can eat through the intestinal wall and cause your abdominal cavity to become septic.

Most cases take two to four years to diagnose. My Crohn’s started in an unusually aggressive manner, which led to my quick diagnosis.

While the disease can occur at any age, it is most prevalent in teens and young adults between 15 and 35 — exactly the ages you’re expected to feel and be the most healthy.

But “healthy” is relative.

My colon was riddled with ulcers. Before I knew how sick I was, I tried to eat healthy, focusing on fiber-filled foods like kale, whole grains and apples. But eating that much fiber is asking a lot of your colon, even a healthy one, so my cut and bruised digestive tract was done dealing with my healthy choices and I lost all appetite.

I’d lost 60 pounds and felt like a shell of myself.

I was prescribed a high dose of steroids to counter my body’s inflammatory response. The steroids made me feel as though I could conquer the world and I was finally hungry again. But there was no kale, no caffeine and no alcohol in my immediate future. Low-fiber foods, protein shakes and water only, the nutritionist said.

The first food I could stomach? Totino’s Pizza Rolls, which might as well not be called food, but they have 1 gram of dietary fiber so they were perfect.

But the momentary bliss faded when I began to think about having to check the ingredients on everything I ate. Living in a constant state of vigilance was not exactly something I was used to. I dreaded having to ask for detailed ingredient lists at restaurants — what if they were wrong? What would I do? Rushing to the restroom is not always an option.

The Internet was not terribly helpful. Always carry a change of clothes, one person suggested. Try foods in small doses. Everything in moderation. Every person with Crohn’s reacts to different foods, stresses and environmental changes differently — there is no one-size-fits-all way of advising patients.

I was a nervous wreck, not to mention constantly shaking as a side effect of the steroids, when my appointment to discuss long-term symptom management finally arrived.

The doctor gave me two choices: Humira, an injectable medication that I would administer at home bimonthly, or Remicade, which would require me to go to the hospital every eight weeks for a multihour infusion of the medication into my blood.

Doctors try to keep patients on their medication for as long as possible. Switching between the two medications could result in neither being as effective for me. I spent countless hours trying to think through the ramifications of my decision: What would I be doing in two years, 10, 30, 50? I had absolutely zero answers and, for the first time during my diagnosis, I cried.

Ultimately, I chose Humira. It allows me the freedom to travel and live my life without scheduling around hospital visits. And a needle prick twice a month is a small price to pay.

The next step was to get a medical alert bracelet with “Crohn’s disease” and a phone number of a loved one engraved. Finding one that matched my personal style was daunting — most women’s designs were too gaudy or pink, others were too bulky.

I was overwhelmed with joy when I found a Houston-based metalsmith who specializes in making custom medical jewelry. The simple silver bracelet is barely noticeable to others, but worn on my left wrist, it constantly reminds me to listen to my body.

A year after beginning my long-term treatment plan, I am in a rhythm. Every other Friday, I wake up and pull my Humira pen out of the fridge, my medical-grade sharps box comes out of the cabinet, and I reflect on how I’ve felt digestive-wise over the past two weeks. I record my observations in a journal so I am prepared to discuss any changes with my doctor.

I’ve learned to cherish every fibrous fruit and vegetable I can eat, even though I miss whole grains, brown rice and beer.

I’ve found mindfulness and strength through a rigorous yoga and meditation practice. And I’ve learned from my fellow Crohnies that paying attention to your body, even when you feel the most invincible, is worth it.

Hannah Wise is a breaking news reporter at The Dallas Morning News focusing on politics.

Twitter: @hwise29

CROHN’S DISEASE FAQ

What is Crohn’s disease?

Crohn’s is an autoimmune disease. While it is similar to ulcerative colitis, another type of irritable bowel disease, it primarily affects the end of the small bowel, the ileum, and the beginning of the colon. However, it may affect any part of the gastrointestinal tract, from entrance to exit.

Who is most vulnerable?

Crohn’s disease may affect as many as 700,000 Americans, according to the Crohn’s and Colitis Foundation of America. While the disease can occur at any age, it is most prevalent in teens and young adults between the ages of 15 and 35

The causes of Crohn’s disease are not well understood. The disease affects every person differently. Recent research suggests that hereditary, genetic and environmental factors contribute to the development of Crohn’s disease. Diet and stress may aggravate Crohn’s symptoms, but do not cause the disease.

What causes it?

The gastrointestinal tract contains harmless bacteria that aid in digestion. The body’s immune system usually is on guard to attack foreign invaders, such as bacteria, viruses and fungi. In people with Crohn’s disease and other irritable bowel diseases, the good bacteria in the digestive tract are mistaken by the immune system for harmful invaders and attacked, causing inflammation. The immune response does not subside, leading to chronic inflammation, ulcers, thickening of the intestinal lining and other symptoms.

What are the symptoms?

Every patient’s symptoms are different and some more severe than others. They include persistent diarrhea, rectal bleeding, urgent need to move bowels, abdominal cramps and pain, sensation of incomplete evacuation and constipation (can lead to bowel obstruction).

General symptoms that may also be associated with inflammatory bowel disease: fever, loss of appetite, weight loss, fatigue, night sweats, loss of normal menstrual cycle.

How is Crohn’s diagnosed?

Crohn’s can only be diagnosed through tests performed by your doctor. It is a chronic disease, so a diagnosis can take time to finalize — in many cases it can take years. Most people have flare-ups of the disease that cause symptoms followed by periods of remission when patients may have no symptoms.

A detailed family history combined with a colonoscopy and biopsy of affected tissue in the colon will confirm a Crohn’s diagnosis.

How is Crohn’s managed?

Initial inflammation may be controlled through high doses of steroids. Medications are prescribed to suppress the immune system’s inflammatory response, which helps control symptoms and reduce the frequency of flares.

Diet and nutrition are key to managing Crohn’s disease. Patients are advised to pay special attention to their diet, note foods that cause problems and replace lost nutrients when symptoms arise.

Surgery becomes necessary when medications can no longer control symptoms or if the patient develops a fistula, fissure or intestinal obstruction. The surgery removes the affected section of bowel and joins the healthy sections together.

About 70 percent of people with Crohn’s will eventually require surgery.

SOURCE: Crohn’s and Colitis Foundation of America

About Admin

Leave a Reply

Your email address will not be published. Required fields are marked *