The Stages of Crohn’s Disease: Introduction

An outline of the five-plus steps of a real-life Crohn’s patient’s journey from diagnosis to the brink of death, to pullback and a fulfilling life.

As the Bio Advance network outlines in their treatment guide, Crohn’s “is a type of inflammatory bowel disease where people get severe diarrhea and abdominal pain because the lining of the digestive tract becomes inflamed”. They also point out that it can occur “anywhere along the digestive tract, from the mouth to the anus. Inflammation can extend through all layers of the affected area from the inside lining to the outer surface”. While it currently cannot be cured, it can be treated.

The Bio Advance guide also points out that most scientists believe that some CD is caused by:

• An abnormal immune response to either: bacteria that normally live in the intestine, or bacteria that have invaded the intestine; and
• The genetic make-up inherited from family members; in fact, 20% of Crohn’s patients have a close family member with the disease.

The Stages of Crohn’s

It has been a forty-year journey. The five-plus stages of the disease are now clear to me, not just intellectually but emotionally. The stages I’ve outlined are correlated to the medication, surgery, devices etc. used to control my wife’s disease:

• Salofalk- used to treat mild to moderate Crohn’s disease. It acts by reducing inflammation in the bowel.
• Prednisone- it works by reducing swelling, inflammation, and irritation
• Immuran- an immune suppressive agent, reduces inflammation and pain by suppressing the body’s natural defense, or immune system.
• Remicade- a biological response modifier delivered by intravenous infusion.
• Surgery- about two-thirds to three-quarters of people with Crohn’s will eventually undergo surgery as part of the management of their illness.
• Ostomy- allows intestinal contents to drain directly out of the body into a collecting bag through the abdominal wall. The ostomy is usually closed, and the bowel reattached six to eight weeks after the initial surgery.

The Diagnosis of Crohn’s

A short time after our marriage and just before a scheduled trip to Japan, my wife was experiencing stomach pains and some diarrhea. Her GP prescribed a narcotic liquid to manage the diarrhea- all we remember is that it tasted like bananas- and off we went. The diarrhea and pains, however, continued after our return so my wife was referred to an internist. After a dose of barium and an upper GI she was diagnosed with Crohn’s. The disease was then explained using a textbook, whereupon she was summarily told there was nothing available to help it, advised to go home, and encouraged to watch her diet and live with it.

The Salofalk Stage

Remarkably, through diet control we managed to cope with the disease for many years. As we now know, however, the inflammation in the bowel was doing its damage. Fortunately, no readily apparent fistulas had developed and there was no bleeding, but the life of diarrhea and constant bowel movements was taking its toll on her strength and psyche and had cut short her career in the medical field. A cousin, a pharmacist, recommended Immodium which helped, but soon we were back with an internist who prescribed Salofalk.

The Prednisone Stage

After close to thirty years of coping with the disease we hit the first major flareup. Severe cramping and bloating began and then one day a trip to emergency was required. A surgeon was called in but after tests which, incidentally, did not include a colonoscopy it was decided that there was a narrowing in the bowel but no need for surgery. However, she was put on prednisone and advised that there was some fistula development in the anus area. She was also advised she had osteoporosis and was started on Calcium and Vitamin D supplements.

The Immuran Stage

This stage was brief. Ten years after the initial trip to emergency we returned. This time there was a severely distended abdomen and vomiting. Immuran was prescribed but it created nausea, fatigue, and headaches.

The Remicade Stage

A short time later we were back in emergency, this time by ambulance. After admittance and I.V. treatments, and the official acceptance into the Remicade program, visits to an infusion clinic- every two weeks initially and then every eight weeks- became the norm for a short while. Then, suddenly, we were back in emergency by ambulance. A scope revealed a stricture with an opening the size of a needle. Emergency was recommended.

The Surgery Stage

It was not until the surgeon was inside the bowel that the true state of the active Crohn’s was determined. To complicate things, heavy doses of prednisone over a long period of time had increased the chance of leakage at the reconnection site. I was advised by the surgeon that for most patients there is always about a 4% chance but for my wife it was close to a 30% chance; and it did leak. Two days later she was in for emergency surgery and given an ileostomy. Four months later, after two weeks in I.C.U. and extensive complications, she was released. Remicade, along with the corticosteroid Entocort then became the preventive drugs since there is usually a 50% chance of Crohn’s reoccurring after surgery.

The Rare Ostomy Stage

Most patients who have an ileostomy- a surgical opening constructed by bringing the end or loop of small intestine (the ileum) out onto the surface of the skin- have a reversal after two or three months when the bowel has had time to rest and heal. But in our case, for the foreseeable future it’s life with an apparatus called an ostomy- a bag that attaches to a person’s abdomen and collects stool. The good news, of course, is that the Crohn’s is in remission and the patient can and does eat as she pleases.

Disclaimer: The information contained in this article is for educational purposes only and should not be used for diagnosis or to guide treatment without the opinion of a health professional. Any reader who is concerned about his or her health should contact a doctor for advice.