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An Alternative to Narcotics?
Change is a part of all of our lives, especially when we live with a disease that affects us deeply enough to require either HPN or enteral nutrition. Sometimes change is voluntary, sometimes we meet it with our heels dug in and sometimes we go along with suggested change to see how it comes out in the end. The third option is where I found myself a year ago and no one could have predicted all the changes that year would incur.
I’ve lived with idiopathic pseudo-obstruction for almost 30 years, but it wasn’t diagnosed until about eight years ago. I was on HPN for just over four years for my nutritional needs and on constant IV narcotics for at least two and a half years to deal with the on-going pain. In the summer of 1999 I ended up in the hospital with pain I could no longer control. I was hospitalized for a week and heavily sedated until whatever had caused the pain passed. A week later I went to the Mayo Clinic, where I’d been diagnosed, to see what could be done.
After a couple of days of going through the clinic for various tests, my surgeon proposed a plan of action. If he did need to do surgery, he said, with the amount of narcotics I was taking, it would be difficult to medicate me afterwards. So, the first step was to get me off the narcotics and into a chronic pain therapy program. The second step was to be a trial run on enteral nutrition. Some of the tests they had conducted indicated I might have enough motility to switch from HPN to HEN.
I entered the hospital and they began a slow tapering off of my medication. A few days later a nasal-jejunostomy tube was placed to try the enteral nutrition. After a few more days, I entered the Chronic Pain Rehabilitation Program at the hospital. This is an out-patient program, usually completed in about three weeks. Throughout this program my trial run on enteral nutrition and tapering off the narcotic medication continued. By the time I had completed the program, I was OFF all narcotic meds. I still had pain sometimes, but was able to manage the pain through the new techniques I had learned.
The Pain Rehab Program
The Comprehensive Pain Rehabilitation Program at Mayo is a multi-faceted program that includes both learning and doing. The learning was through lectures, group discussions, and meetings with a case manager and other program personnel. Some of the areas we studied and discussed included stress management, relaxation training, time management, problem-solving skills, chemical dependency, assertiveness, and self-esteem.
The doing was through both physical and occupational therapy. There was a heavy emphasis on physical conditioning through aerobics, weights and developing an on-going exercise program. Work simplification and body strengthening were stressed in occupational therapy. One of the key points stressed in both OT and PT programs was MODERATION. If you’re like me, and most people who were in the program, we tend to overdo and make up for “lost time” on a good day and then pay for it later. I practiced this on a weekend at home when instead of making two complete pies all at one time, I rolled my four crusts in the evening, stored them in the refrigerator and made my fillings the next day. With “moderation” the task was broken down, I wasn’t over-tired and the pies turned out great. Sounds simple, but sometimes we need to remember that simplicity works well. As for the physical therapy, I’d always disliked the idea of walking for exercise regardless of the benefits it could offer, but by the end of the three weeks I was not only walking a mile a day, but I was ENJOYING it and continue to do so.
There is a difference between acute and chronic pain and the way we respond to them. Acute pain can usually be treated with medication. With chronic pain these same medications, especially narcotics, can develop undesirable side effects and can lead to increased tolerance and physical addiction. We respond to pain with pain behaviors, but with chronic pain, these behaviors can become habit. Fortunately through a pain rehab program we can learn different alternatives to medication and habits can be changed.
Life Without Pain Meds
In this past year, all that I learned in the program was really put to the test. The trial run of the enteral feedings was deemed successful and being unable to get a feeding tube placed any other way, I was scheduled to have one put in surgically as soon as I finished the pain rehab program. We anticipated a hospitalization of about one week. Anticipation turned into a mass of complications and a two and a half month stay in the hospital after the surgery. But that’s another whole story. The good news is that through a lot of love and prayers and the physical conditioning I’d received in the pain rehab program, I made it through. I required a second surgery six months later to close a fistula, but made it home in just six days. After both surgeries, my pain was successfully controlled with narcotic medication, but each time I was “tapered” off the medication rather than having it abruptly stopped, and I did just fine. I have since made the switch to enteral feedings and am no longer maintained on narcotic meds. My children have noticed an improvement in the quality of my speech, and I have noticed a difference in my energy level.
I started out by saying change is a part of our lives. It can be exciting; it can be scary. It can come quickly; it can come slowly. But it is a choice and it can sometimes bring an increased quality of living to us in the end.