I’ll do my best to not be graphic or disgusting for this article, but I’m afraid that’s not really going to be possible. If you don’t like fart jokes, or are generally turned off by anything related to bodily functions, stop now. This is cystic fibrosis. This is real life. /end warning
I’m getting much better at not being gross since meeting/dating/marrying Beautiful, but cystic fibrosis is a disgusting disease, is it not? I have a feeling that one of the reasons I didn’t have as many friends as I should have in elementary school was my problem with my intestinal gas. This came as a huge shock to Beautiful when I told her, but I remember being in the 6th grade when I first discovered that you could hold back a fart. That must not have been conducive to making or keeping friends when we all had to sit together in little table groups of 4-6 students. I can just imagine the thought bubbles of 20 years ago: “I don’t want to get in Jesse’s table group for the next 12 weeks. He smells bad!”
I really had no idea before then, and even if I did, I honestly don’t know what I would have been allowed to do about it.
For those without CF, all I can say is that the pressure is almost unimaginable, second only to a complete intestinal blockage. The increased pressure is a direct result of poor absorption of the food we eat. I am doubtful that the teachers would have been allowed to have me wandering off down the hall to the bathroom every time my pressure meter started to rise because that would be a special privilege and I would have missed countless hours of classroom instruction had I done that.
Now that I am on a continuous binge to gain weight – to the tune of 5,000-6,000 calories per day, that is a LOT of food to process with what little small intestine I have left, enzyme insufficiency, and severely limited good bacteria for digestion from all of my antibiotics.
I do my best to be discreet if we’re outside or just wait until we get home if we are in a group setting, but what do you do if you’re out for 8 hours? Symptoms increase as the day goes on as the food increases, so sometimes there is a decision to cut and run or look for a clean restroom. I like my bathroom the best. I have my own bathroom for everything other than grooming and showering because of the nature of CF. It just works out best for all included, and will need to be addressed when children enter the picture.
This week, I took a chance on Twitter and asked about bloating and remedies. It appears that I was on the right track by taking acidophilus every day, but the consensus was to take it with every meal. I checked with my coordinator, and I got the all clear to do so. I sincerely hope it improves my pressure situations.
Update: I wrote this to post later just as I started my colistin month. Today (actually today) was horrible. I don’t know whether to up my acidophilus dose or just give up on having these be a normal couple of days each time I start up.