Advice Corner

To my friends and family: It's only fair to warn you that the following is graphic and icky and may contain information about me that you'll wish you didn't know. If you read it anyway, just remember that you were warned!

Disclaimer: I am not a medical professional. The following is in response to numerous questions from site visitors on the topics addressed here. My answers are based on my experience. You must work closely with your own physician to determine the best course for you.

My doctor says I need to have a fistulotomy, but I'm not sure. Did it work for you?

What do you do to relieve fistula symptoms?

I can't stand it anymore; I'm going to have the surgery. Any advice?

What do you recommend for peaceful co-existance with doctors?

My doctor says I need to have a fistulotomy, but I'm not sure. Did it work for you?

No. In fact, it caused more problems, including moderate bowel incontinence and an excruciating post-op infection. Many years later, I still have the fistula. I advise anyone who's considering any kind of surgery to consider how they feel now. Are they so miserable with the current situation that it's worth the risk of complications to try to make it better? Different kinds of fistulas cause different kinds of problems. One that causes disruptive gynecological problems, for instance, might be a likelier candidate for surgery than one that just causes mild irritation of some other area of the body. It's really up to you and your surgeon to decide whether the surgery is appropriate for you.

Note: "Fistulotomy" doesn't appear in my medical dictionary, but "fistulectomy" does. Not being a medical person, I can only tell you that "fistulotomy" is what my surgeon called it, that's what everyone who writes to me calls it, so that's what I'm calling it here.

What do you do to relieve fistula symptoms?

Most important, I do the following to manage the disease in general:

Get enough rest. (Listen to your body. It's trying to tell you what it needs.)

Strive for balance in life. (All work and no play makes Jill one sick puppy!)

Avoid excessive stress. (In my case, that means not working outside the home.)

Learn to say no. (And don't apologize!)

Trust my instincts and experience. (For instance, I eat what works for me and avoid what doesn't. No one diet works for all Crohn's patients.)

Avoid overuse of antibiotics. (I take them when truly necessary, but also remind my doctor of the Crohn's and we choose antibiotics that have not bothered me previously.)

Keep a record of what has occurred, what has worked, and what has not. (Take it with you to appointments.)

Choose a primary care physician who is willing to listen to the owner of the body in question.

What I do to manage the fistula:

Daily hot soak in a tub with lots of baking soda in the water. More frequent soaks as symptoms require.

Avoid foods I know from experience will irritate.

Apply antibiotic ointment topically to soothe area and prevent infection.

Keep area clean and dry, applying sterile gauze when needed to contain seepage.

Receive Remicade infusion every 8 weeks.

I can't stand it anymore; I'm going to have the surgery. Any advice?

Definitely!

Choose a surgeon intelligently. Choose a surgeon who is extremely knowledgeable and experienced with your particular condition. In California, for instance, that means selecting one who is a Board Certified Colo-rectal Surgeon. Accept no substitutes. I don't care if the surgeon has the personality of a colon. This isn't a date; it's surgery, and you want it done right -- if at all! (After a general surgeon had performed my fistulotomy/ectomy without the desired result, I was referred to a colo-rectal surgeon who said he wouldn't have recommended the surgery because -- ready for this? -- it doesn't usually work!)

Don't eat after surgery. They'll tell you not to eat for some number of hours before surgery. What they won't tell you is not to eat after the surgery -- to wait until the packing has been removed. At least in my case (mine was a perianal fistula) this was a huge mistake. As a Crohn's patient, you know that when you've got to go you've really got to go. There's no waiting. If the packing is still in place when you've really got to go -- well, it's not pretty. My surgeon had the nerve to insist that if events had transpired as I described them, the packing couldn't possibly have remained in place. Well, I'm here to tell you that the packing did remain in place despite events transpiring precisely as I'd described. For me, the lay person whose mind is not corrupted with the contents of medical texts, it wasn't difficult to realize that the event in question must certainly have deposited fecal matter in places where it didn't belong. Still, the horrendous infection that resulted was attributed by the medical geniuses to coincidence.

What do you recommend for peaceful co-existence with doctors?

The person with chronic illness is going to deal with a lot of doctors from time to time. This can be trying. Here are some strategies I've developed over the years.

Authority figure? No! Authority in medicine, sure, but not in your life. The doctor is a consultant, like an auto mechanic. (No disrespect intended to either.) When your car is ailing you take it to a mechanic because mechanics understand cars and know more than you do about fixing them. When the mechanic wants to replace the transmission, though, the smart consumer seeks another opinion before sinking resources into something so drastic when there might be alternatives. When your body is ailing you take it to a doctor because doctors understand bodies and know more than you do about fixing them. When the doctor wants to start cutting, though, the smart consumer seeks another opinion before sinking resources (including pain) into something so drastic when there might be alternatives. See?

Consumer Economics 1A. You're the customer. You're paying money to the provider of a service. You have the final say, and you have the right to say it without shaming, ridicule or general grouchiness on the part of the doctor.

It really is funny. Keep your sense of humor honed. Few things are funnier or more bizarre than medical procedures. You and your doctor are participating in something you wouldn't even do with your spouse. It's hilarious! Doctors know it; you know it. Have a laugh.

They aren't the enemy. Remember the song "Sister Suffragettes" in Mary Poppins? "Though we adore men individually, we agree that as a group they're rather stupid." I say a lot of unkind things about doctors, but the truth is that I really like the doctors with whom I contract currently. We communicate well, we see eye-to-eye about a number of really important aspects of my care, and they have a really great touch -- they don't hurt me as much as other doctors do when doing the same exams and procedures. Still, as a group, I'm not fond of doctors. I've encountered too many bad ones to hold them in high regard as a profession. I particularly abhor the way they look out for one another, getting away with things they shouldn't. I think doctors should police each other, but then police don't even police each other, so I guess I'm asking a lot. Despite my misgivings about doctors, I still say they aren't the enemy. Most are caring people who really want to help, and most have a pretty good idea of what will help. When I'm acutely ill, I want a doctor and I want a doctor now. It's important not to alienate doctors over minor matters. Pick your battles.

Do not make a big deal about:

The temperature of the instruments.

The expression on the doctor's face.

The tone of the doctor's voice.

The annoying but competent receptionist.

Details the doctor forgot since a previous appointment.

Do make a big deal about:

Unsanitary conditions.

Incompetence.

Maliciousness (including perversion).

General and consistent dismissal of your questions and concerns.

Plenty of fish in the sea. You can always change doctors. You really can. Don't hesitate for a minute. This isn't a relationship, remember; it's a business transaction. If you're unhappy with the product or service at this establishment, take your business elsewhere. You don't even owe an explanation, although one delivered calmly and matter-of-factly can have a great impact on how future patients are treated at that office.

The content of this page is © 1999-2004 by Susan N. Hobbs. The opinions expressed here are those of the author, who is not -- repeat, not -- a medical professional. Readers who take the advice offered here do so at their own risk.

Now, go take care of yourself and remember to laugh a lot.

HOME | EMAIL