Five Surgeries Related to Crohn's Disease

I underwent my first Crohn's surgery 11 years before I was diagnosed with Crohn's disease.

Imagine being in a lecture in October of your sophomore year of college, feeling something gooey on your seat, and then noticing liquid oozing out of a hole on the inside of your thigh. The year was 1967.

What I had was a fistula, a channel that forms between two organs or an organ and the skin on the surface. The university health service directed my parents to drag me to a surgeon in my hometown in another state over the Thanksgiving break.

The surgeon offered no guesstimate about what had caused the rectal fistula but operated on it over Christmas vacation. The best thing I can say about this surgery is that I got out of gym the next term. It was the first of five Crohn's surgeries I underwent in 36 years.

Five years later, I saw a Wisconsin surgeon for yet another pain in my rear end. This one was a rectal fissure. Same cause, though nobody seemed to have a clue at the time of the surgery. This procedure resulted in about a week in the hospital, leaving work for multiple soaking baths each day, and an angry boss.

I gave birth to my daughter when I was 31. However, my episiotomy wouldn't heal. I visited an OB-GYN several times to have it cauterized before the problem was fixed.

Only after this last episode did I discover that all these problems were related to Crohn's disease. Often symptoms outside the gut occur years before the patient perceives much activity in the digestive tract.

Certainly this was not the case with my disease. I had severe digestive problems since childhood, punctuated by dozens of visits to the emergency room during my teens and early twenties. My parents always dismissed them as due to drinking bottles of soda during the hot summer months.

The best thing that ever happened to me medically was a referral to a Tucson gastroenterologist in 1979. He took one look at my chubby body and said that although the stereotype of a Crohn's patient was of an ultra-thin, malnourished individual, he was pretty sure I had the disease and that it was a fairly advanced case.

He then made several comparisons to patients he had treated during his residency at Mt. Sinai Hospital in New York and handed me a medical textbook so I could educate myself. I learned about inflammatory bowel disease (IBD) while changing diapers.

In 1983, despite several years of sulfa clones and the steroid Prednisone, I underwent my first small-bowel resection. My daughter was not yet four years old. The surgeon removed about two and a half feet of my small intestine, which was infected and riddled with holes. Several fistulas had also formed between loops of bowel.

I entered the hospital with a warning to expect to stay up to 30 days if there were no complications. I was already a household word at the insurance company. When I was discharged 16 days later, the staff clapped and said I had set a record for a fast recovery.

Thanks to the cracks already forming in the U.S. health care system, when I had a second resection in 1987 to remove 2 more feet of small bowel, the insurance company let me stay only 8 days. In 2003, after dozens more trips to the emergency room, I had another piece removed due to narrowing from partial obstructions. My admission this time lasted a mere five days.

Treating Crohn's patients with medications is always the first choice of medical providers. Over the years, I had them all: Asacol, Prednisone, Budesonize, Flagyl, Imuran, 6-MP, Dipentum, Remicade, and a few more I'd like to forget.

For between two thirds and three fourths of Crohn's patients, however, only surgery provides sufficient therapeutic relief, according to the Crohn's Colitis Foundation of America (CCFA).

The CCFA notes that the complications of Crohn's disease that might indicate surgery include:

1. Intestinal blockage or obstruction
2. Excessive intestinal bleeding
3. Bowel perforation
4. Abscess or fistula
5. Toxic megacolon (large intestine only)

There are several basic types of Crohn's surgery. Surgeons use strictureplasty for skip areas of narrowed areas in the intestine between normal sections. They utilize resections to remove actual chunks of the small or large intestine when multiple affected areas are too close together to remove individually. The technique to splice the remaining ends together like a garden hose is known as anastamosis. I have had all of these.

Surgery to remove the entire colon, a colectomy, is sometimes necessary for patients with severe disease in the large intestine. The procedure to remove the colon and rectum is called a proctocolectomy and requires an ileostomy to draw the end of the small intestine (ileum) through a hole in the abdominal wall to deliver waste into a bag.

The CCFA estimates that about 25 percent of Crohn's adults develop a fistula or an abscess. All abscesses must be surgically drained. However, there are now several drugs on the market that often resolve fistulas without surgery. The CCFA also states that around half of adult patients will suffer another bout of Crohn's disease within five years after a resection. It typically recurs at the site of the first surgery.

Considering Crohn's and other conditions, I have hit the hospital doors at least 100 times so far. The insurance company I've had since 1993 undoubtedly has a NOT WANTED poster with my name and photo in a prominent spot. I battle regularly with them over medical necessity issues.

Despite flunking most Crohn's medications and undergoing so many surgeries, I have been very fortunate. I've never had emergency surgery. For my last three procedures, I've had the same wonderful surgeon. However, shortly after my 2003 resection, he closed his practice to join the trauma team at a large metropolitan teaching hospital.

If I need more surgery, I'll have to train a new surgeon.