Women vs. Golytely – The Power of Poo Premieres 8/15/11
So one of my favorite TV shows is Man VS Food where I see food expert Adam Richman gorge out at famous food hotspots throughout the country on jumbo size burgers, burritos, spicy foods, and even gallons of ice cream. Years ago I could have beat him with my CF/prednisone appetite. But not these days. I’m back again in the hospital for the 4th time in 9 months for another bowel obstruction- this time small bowel, more stubborn and hard to reach/treat.
This happened just in time for our wonderful world premiere of The Power of Two, which shows in Los Angeles this Friday for a week, continuing after throughout the country through late October. Ah man… why did this have to happen now? We have so much going on! At least 30 emails a day, conference calls, media interviews, shopping for new shoes, clothes and a new tooth and hairdo! So much to do… the gut can’t take it all and decides to go on strike. My own private version of m y movie plays in my head: The Power of Poo. A sequel?
My old CF gut has lost its motility, its lubrication and its ability to absorb all at once. Basically that means bad plumbing that results in episodes of severe pain, cramps, distention, and a belly that dances and makes shapes like the Excorcist while making churning and screeching noises. Symptoms started in late July right before CF Conference and Retreat and I did three galloons of Golytely (a liquid electrolyte mix that pulls water into the gut to flush it out) to no avail. The process is labor intensive- you have to be home for several hours, which is hard for me, and you have to sit there and drink constantly. My record was 2 gallons in 1 hour 20 minutes. My own woman versus Golytely challenge! But amazingly my gut is so bad , it didn’t fix it. So 18 hours later I tried again with a 3rd gallon. The pain subsided enough to avoid a trip to the ER and I headed to my 10 day CFRI conference and retreat , eating very carefully and overdosing on daily laxatives to power through it. I thought I had conquered my battle.
Lo and behold, I was proven wrong when the pain returned with a vengeance on Friday night. Dammit! I tried Golytely at home again but the pain worsened till I couldn’t move and my poor husband took me for the fourth time this year to the ER. Same bullshit, different month. My gut xray was horribly full of golf balls even if I go multiple times a day (sorry, TMI). It makes no sense. The ER doc wondered if I chewed my hair because he thought it was a hairball. Of course not! What the hell do you think I am, neurotic a cat??
But, wow, that delaudid (pain killer) is awesome. Within seconds I feel a warm buzz throughout my body, and the pain subsides considerably where I can stop panting. Then I suddenly feel so soft and fuzzy, super relaxed and ready to nap. Aahhhh, the ER is such a wonderful place and I am truly blessed. No wonder people get addicted to this shit.
Four “procedures” later (use your imagination what I mean by procedure), there was little change. Two of my procedures was performed in the Interventional Radiology department, where they can insert liquid into me (2-4 liters) under an x-ray to visualize the bowel obstruction and make sure the liquid engulfs it to “marinate.” Well of course on both occasions I did the “procedure” the radiology techs were young hottie men . Why does that always happen?? I’m laying there completely humiliated and vulnerable and I get these radiology tech hotties (one from England with a great accent) doing my procedure. But I guess when I’m in that much pain it really doesn’t matter. Perhaps it’s like deliverying a baby. Some really don’t care WHO does it, as long as they do it right.
So immediately upon entering the procedure room on day one, I assert my needs:” Ok,I’ve done this before, it took 3 times last time. Plan on being here a while. I have to get out of here today since I have to work since I don’t’ have too much time off, and I’m premiering in a movie on Thursday so I need to get out of here. Please work with me.” Then I start with my Japanese monologue: “ Let me apologize in advance that you have to do this disgusting job. I’m so embarrassed and humiliated. I’m so sorry.” The hottie of day one perks up and looks inquisitively at me, asking about the movie. I explain it’s a documentary influenced by the lives of cystic fibrosis patients like myself, with the purpose of raising awareness about CF and organ donation, blah, blah , blah. His smile widens, his eyes glow and he looks starstruck. Slowly, he kneels down, hands out his hand, and says… “Wow…. So incredible to meet you. Can i… can I … shake your hand? ” OMG. I feel ridiculous. He just saw my ass and he’s treating me like special . I laugh and shrug off his admiration but shake his hand anyway. He was sweet. The next day when I went down to radiology for procedure #2 with Hottie from the UK, one of the docs said he heard something about “a celebrity in radiology yesterday” and he realized it was me. WTF. Is this how people are going to react? How funny!!! Again in the most humiliating and disgusting procedure known to man as “ass washing” I hardly feel like a celeb. I promptly took advantage of this marketing opp and handed out Power of Two SF fliers- never miss an opp even during this “procedure.”
The only thing that made me feel like celeb ready for LA on Thursday s that I haven’t eaten since Friday, 8/12/11 and I’ve probably lost over 10 pounds (a new approach to dieting?) I’ll fit right in with Ally McBeal and that Olsen twin. I just need a boob job and then I’ll be perfect. Now I wear an “over-the-shoulder-pebble-holder,” AKA bra. No , seriously , it really feels like shit not to eat for days. I have no energy so I haven’t walk around much so my muscles have gone to jello. For the first 2 days I wasn’t allowed to drink either (and by the way didn’t get any of my meds). Even if I received IV fluids, I was still so dehydrated that my lips cracked, my spit turned to foam and my piss was gold. Not a good sign people. Hello??!! Is anyone out there? WTF. This is why I’d die here if I couldn’t assert my needs. After 24 hours of not getting any of my immunosuppression (because they didn’t want my pills to cause me to “throw up”) I took my own from home (I always BYOM to the hospital). I’m sorry to break the rules, but my transplanted lungs are the most important thing in my life and I WILL NOT go into rejection due to medical negligence and/or difference of opinion of a fellow who barely knows me. I care more about rejection than throwing up. The next morning my prograf level was high and they freaked out. I confessed and explained my reasoning and all was cool. By the way, I did not throw up.
So the lessons learned in this hospital stay:
1.There are two things you do in a hospital : you wait or your get interrupted
2.The primary factor in providing healthcare is communication.
3.We all shit and life sucks if we don’t.
4. Darwin lives.

Although the hen has laid no golden egg yet, my pain is less and I’m most likely going to be discharged today. Can’t wait. I’ll start our film tour with a flat belly and much apprehension of food. I have to be very careful about what and where to eat. Sadly with the state of my gut, I fear this will happen again, and again. The docs have nothing more to offer me except the daily GI drugs I’m already on, and won’t consider surgery because of the risks. So please… my friends, hydrate yourselves, and when you shit, say a prayer of thanks for this daily miracle.
Thanks for reading my way too honest blog again.

ANA

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