My Ten Year Journey to Diagnosis

By Bernadette Marcelus-Johnson

The first time I heard the words, “Crohn’s disease” (CD), I was seventeen years old and learnt my best friend’s mother had CD. I had no idea what CD was, and they didn’t seem interested in going into further details about it, so I did not pursue it.

Eight years later in 1998, I became very sick with a persistent fever, severe joint and horrible stomach pains, and diarrhea. I lost twenty pounds in three weeks. The weight loss and persistent fever were so alarming that I was admitted into the hospital.

With my history of Sickle Cell, low-grade fever and joint pains were common, so everyone including my doctors assumed I was in Sickle Cell crisis. This crisis seemed different but no one knew why. The doctors were concerned with the high and persistent fever and not so much with the other symptoms.

For two weeks I was pumped full of antibiotics and as a result, the joint and stomach pains got better but the fever and diarrhea remained. The diarrhea went away after lots of anti-diarrhea medicine but the fever stayed.

I live in the Bahamas where a large sector of the population prefers what is known on the islands as “bush medicine” to traditional medicine. The most common “bush medicine” is Sarah Sea tea–it’s bitter as heck and is used for everything from a common cold to a miscarriage. After being in the hospital for a month, a nurse suggested “bush medicine” for the fever and agreed to give me tea made from Sarah Sea. Two days after I started the tea, the fever broke. The doctors could not explain why the fever broke and we did not tell them about the Sarah Sea for fear the nurse would lose her job. Five days after the fever broke, I was discharged.

The last thing the doctor in charge of my case said was, “You’re very sick and if you live to Christmas, you will be very lucky”. He died on Christmas Eve 1998.

I went home and continued with my “bush medicine”, and followed up with the doctors who focused on my Sickle Cell and were never able to explain the persistent fever and other symptoms. It would be five years before my “stomach troubles” returned.

Like before, I developed a high fever and diarrhea, and this time the diarrhea was bloody and I was rapidly losing weight. It was clear this was not related to Sickle Cell, but no one could say what it was.

They ordered blood test after blood test, ultrasounds and x-rays. My blood count was so low that my doctor said the fact that I was not passed out was inexplicable. I was too sick to eat, the pains were horrible, and everything I did was painful. I was on the toilet every hour, and I tried everything including Sarah Sea, but nothing worked. I was sure I was dying. I remember praying, “God, I cannot do this anymore, please help me, I can’t do this anymore.”

Desperate to get better, I decided to see another doctor who ordered her own sets of ultrasounds, blood tests, etc. She gave me a prescription of pills to take before every meal and continued with the antibiotics my doctor prescribed. By the last pill I was feeling much better.

Unlike in 1998, the episodes of what I called “my stomach’s bothering me” became frequent. For years I blamed everything from food poisoning to the cook for my bad stomach and I began eliminating foods from my diet.

By 2007 I had medical insurance and began having unusually long menstrual cycles and horrible cramps. Again, the doctors could not say what was happening to me. This time we decided to travel the Florida for medical attention.

We took the short flight from the Freeport to Florida and went straight to the ER at Cleveland Clinic Florida. My blood count was so low that they made me wear a helmet and fall precaution bracelet. I had an ultrasound and the ultrasound showed two uterine fibroids and something else but the doctor wasn’t sure what it was. I was admitted to the hospital and had my first CAT scan.

After the CAT scan, the doctor said it looks like IBS and ordered a colonoscopy for my next visit, but we focused on the fibroids and I didn’t follow up with the colonoscopy.

I had two fibroid-related surgeries in less than six months. The first surgery to remove the fibroids went as planned but the fibroids came back in weeks.  We decided to have a partial-hysterectomy; the surgery itself was complication free and I was discharged the next day and returned to the island.

Three days after surgery, I developed a high fever and was unable to move without help. I was collecting fluids where my uterus had been, my body was going into shock and major organs were shutting down.

Getting off of the island took days, so by the time I arrived at the ER in Florida, major organs including my kidneys, were in trouble. I was also in full Sickle Cell crisis and the IBS was looking more like CD, the disease I had heard of all those years ago from my friend.

I was too sick to have the colonoscopy right away. After getting out of ICU, ten years after my first stomach episode, I had my first colonoscopy and I finally had a name for what was going on inside my body, it was Crohn’s disease.

At first I was relieved–happy even–to finally have a diagnosis. I thought, we know what’s wrong now, lets fix it. What I did not realize was, that while my journey to diagnosis was over, the journey to lasting remission had only just begun. And this journey would be more challenging than the journey to diagnosis. It’s difficult not knowing what’s wrong with you, but for me knowing and not being able to fix it is even harder.

When you’re first diagnosed with Crohn’s, the doctors don’t tell the whole truth about what to expect or about other ways CD can affect you outside of the digestive tract. They said, “Take the meds and you’ll feel better.” It’s been five years since my diagnosis, and lasting remission continues to elude me but I have not given up. I wake up every morning wondering if this is the day my journey to lasting remission will end?

“Voices of IBD” is a guest blog series hosted by CrohnsDiaries.org to honor and preserve the stories of inflammatory bowel disease patients, their family members and friends, and patient advocates. “Voices of IBD” shares the individual experiences of those affected by Crohn’s disease, ulcerative colitis, and chronic pain, offering support to patients and their families, and educating the international online community about the unique–and sometimes rewarding–challenges of living with IBD. If you are interesting in working with “The Crohn’s Diaries” to share your story, please email Christina Matthies at CrohnsDiaries@yahoo.com. 

 

3 thoughts on “My Ten Year Journey to Diagnosis

  1. ‘It’s difficult not knowing what’s wrong with you, but for me knowing and not being able to fix it is even harder’ – I totally relate to this. After 8 long years of illness I was finally diagnosed with ME/CFS, a label but not a cure. A really interesting read, great post.

  2. Pingback: Genesis of Disease | Anatomy of an Illness
  3. Pingback: A child sotry of Ulcerative Colitis | healthnutmumblog

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