The Marathon Continues

My life has become a marathon. Whereas in the past, through my childhood and teen years, and even well into adulthood, my health was a series of stops and starts – a lot of sprints and then recovery time. But now, there’s no clearly defined periods of wellness or sickness. It’s all one, long, nonstop flight to infinity.

Big Hill Ahead!

My doctor appointment last week showed that I’m experiencing another lung flare-up/exacerbation/active infections. With more bugs than I can count on one hand, it’s a crap shoot to figure out which of the bacterial strains actively growing are making the loudest noise.

My lung functions are down, I’ve lost weight, and I’m worn out. My doctor suggested that they admit directly from my appointment, but I begged them to give me some time with oral antibiotics (hoping that they some of the bacteria that’s acting up responds to them) and increasing my airway clearance (as close to six hours a day as I can do). If I don’t improve, or get worse, I promised that I would call the second I noticed.

Even Bigger Hill Coming!

One thing that has changed in the past six months is that whenever I start a new course of antibiotics, it triggers bowel obstructions. About 22% people with Cystic Fibrosis (CF) have chronic Distal Intestinal Obstruction Syndrome (DIOS), due to Pancreatic insufficiency (85% of CF patients), malabsorption of food, slow-emptying stomach (gastroparesis), and excess mucus in the intestinal tract due to poor exchange of fluid and sodium. Intestinal obstructions can quickly become severe medical emergencies.

Typical symptoms of both partial and complete blockages include colicky pain, nausea and/or vomiting, abdominal bloating, lack of appetite, change in bowel movements and/or constipation, and malformed or greasy stools.

A complete blockage can become a severe medical emergency, resulting in bowel perforation. You can also end up with severe nutritional deficiencies of potassium and magnesium. I was hospitalized in July for DIOS, literally days after spending five days inpatient for my lungs. So now that I am on antibiotics again, my DIOS is flaring up. It doesn’t always announce itself, which means even if I think my body is acting normally, there can be a serious blockage building up.

This time, however, I saw it coming over a period of days. It did not get bad enough to send me to the hospital, so I am treating it at home. The usual regimen is bowel rest (light or no solid foods), high dose medications to bring more water into the intestines, hydration (water, water, water!!), and trying to control pain and nausea. The problem with treating the pain, however, is that it can further slow down the intestines, so most of the time, I am actively in moderate to severe pain.

I also use a heating pad which helps comfort some of the pain, gentle belly massage to try to “loosen up” any areas that are really tense, and activity like Pilates to both keep things moving and provide some relief from bodily tension. You don’t realize how much you slump and curl up when in constant pain, until you straighten yourself out physically and let the body go back to its normal position.

And the Gradual Descent

Thankfully, I had some relief late last night, and will continue treating my DIOS even after the acute flare-up has resolved. In addition, my lungs are faring better – I have less congestion and coughing and better Oxygen supply this morning. I am so happy that these issues didn’t send me into the hospital – for now. I was last in there in July, so if I can go five or six months, mentally, I’d be okay going in. I know how crazy that sounds, but having some control over when I go in next gives me some sense of power.

I do everything possible to avoid the hospital, but the reality is that it’s essential to treat acute flare-ups and try to prevent permanent damage for as long as possible. It’s all about perspective – I’d rather see the hill I have to climb on the horizon, versus suddenly slamming into it and crawling on my hands and knees to survive.

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