Crohn’s Disease and Me: My Crohn’s Journey

My Crohn’s story started in or around 1969 when I was 12 or 13. I have a cloudy memory of waking up with extreme abdominal pain. My folks took me to the hospital, but the doctors did not know what caused my belly ache.

After my hospital visit, things seemed normal. Still, slowly, I noticed more instances of a ‘loose’ tummy, increased frequency of BMs, and abdominal pain. Within a year or so, my symptoms continued to get worse. My symptoms got so bad that I was hospitalized and treated by a food allergist, Theron Randolph, MD. https://www.nytimes.com/1995/10/05/us/theron-g-randolph-89-environmental-allergist.html. Dr. Randolph was a maverick allergist who founded the field of environmental medicine that holds that countless illnesses and allergies are the results of exposure to every day and often commonplace chemical poisons.

Dr. Randolph’s process involved having the patient (me) input nothing in his body except mineral water for 3-4 days. At that point, the patient eats one food per meal. They must measure their pulse immediately before eating and 20, 40, and 60 minutes after finishing their meal, along with noting any other changes or abnormalities. 

Based on the results, a diet plan was formulated, only allowing one food group every four days. It made meal planning a real struggle for my mother, so I was introduced to dozens of new foods! Hence my love of plantains to this day, although carob was never a good enough substitute for chocolate.

Roughly two years later, I had massive internal bleeding from my colon, which I left untreated for several months, getting sicker and weaker with each bowel movement. I was extremely sick when I finally told my folks about what was going on.

My father took me to a local private hospital. The doctor there (side note, I dated one of his daughters) told us he would start by giving me cortisone injections directly into my butt. Not the cheeks, either. 

I spent another three weeks in a hospital in Chicago under the care of Dr. Randolph. No success.  

I was transferred to the University of Chicago Medical Center, then known as Billings Hospital, where massive doses of Prednisone, Lomotil, a blood transfusion, and more were put in me, slowly stabilizing my condition. I spent a full two months out of school between the two hospitals, and my grades showed it.

Given massive doses of Prednisone and other medications, the last two years of high school were uneventful healthwise, EXCEPT the Prednisone leached so much calcium and mineral from my bones that I herniated two lumbar discs and had a laminectomy (disc removal) of the offending discs.

Thankfully, my Crohn’s stabilized for the duration of high school. I will continue this saga in the next post. In the meantime, there is some information about Crohn’s below.

What is Crohn’s Disease

Crohn’s disease is a chronic inflammatory bowel disease (IBD) primarily affecting the gastrointestinal tract. Its main characteristic is inflammation and damage to various parts of the digestive system. Still, it most commonly affects the small intestine and the beginning of the colon. Crohn’s disease is a lifelong condition that can cause various symptoms and complications.

Here are some key points about Crohn’s disease:

1. Cause: The exact cause of Crohn’s disease is still being determined and is poorly understood, but it is a combination of genetic, environmental, and immune system factors. An abnormal immune response to bacteria in the digestive tract may trigger it.
2. Symptoms: Crohn’s disease can vary from person to person and may include abdominal pain, diarrhea, weight loss, fatigue, fever, and cramping. Some individuals may experience complications such as fistulas (abnormal connections between different parts of the intestines or other organs), abscesses, or strictures (narrowed sections of the intestine).
3. Diagnosis: Crohn’s disease is diagnosed through medical history, physical examinations, blood tests, imaging studies (such as X-rays, CT scans, or MRI), and endoscopic procedures like colonoscopy or upper endoscopy. Biopsy samples taken during these procedures can confirm the diagnosis.
4. Treatment: There is no cure for Crohn’s disease, but various treatments are available to manage its symptoms and control inflammation. Treatment options may include medications (such as anti-inflammatory drugs, immunosuppressants, and biologics), dietary changes, and, in some cases, surgery to remove damaged portions of the intestine. The choice of treatment depends on the severity of the disease and individual patient needs.
5. Complications: Crohn’s disease can lead to several complications, including malnutrition, intestinal obstructions, fistulas, and an increased risk of colorectal cancer. Early and effective management can help reduce the risk of these complications.
6. Lifestyle Modifications: People with Crohn’s disease often find relief from symptoms by making lifestyle adjustments. These may include avoiding trigger foods, managing stress, staying hydrated, and exercising regularly. Some individuals may require a specific dietary approach, such as the low-FODMAP diet.
7. Support: Living with Crohn’s disease can be challenging, and support from healthcare professionals, support groups, and family and friends is essential. Many organizations and online communities offer resources and information for individuals with Crohn’s disease.

Individuals with Crohn’s disease must work closely with healthcare professionals to develop a personalized treatment plan and manage their condition effectively. Regular check-ups and monitoring are crucial for long-term management of the disease.