I put out a special request tonight for a topic about Fatboy or CF and got this one in from Jessica – a.k.a. @chronicuriosity:
“Fatboy…the Early Years” or more on why your illieus issues @ birth still cause issues (I’m a illeus baby, too – hot dog scar!)
I’ve promised to stop talking about my bellyaching for now, so here is another angle that I didn’t cover in my posts on my scar or any of my blockage posts. I’m turning this into a personal/community request for information and feedback.
I’ve always noticed that my scar (shown again for your benefit) seems to be directly attached to the abdominal muscles beneath it. You can try to grab my scar and pull it outward, but there is nothing to grab onto because it’s so tightly pressed to my muscles, which were totally raped by the surgeon. I have a 3 1/2 pack, even though you could roll a car over me with my strong abdominal wall. This photo was taken before I got a nice layer of fat from my additional 15lbs of weight, but all you can still grab is fat.
It has been cosmetically bothering me because my added weight gain has created a crease running across my gut that is visible to all because my shirts are all tight now. I look like a fat slob with two beer guts instead of one. I know it’s petty, but it is also uncomfortable because I know my stomach and intestines could expand more if they weren’t being held back by the scar.
Do any of you have an attached meconium ileus scar or do you have “freedom” between your scar and underlying tissue? If you have “freedom,” do you agree with my issue or do you wish you had my problem because your stomach just keeps getting bigger and having the scar keep things in check would be nice? Let’s get the CFers chiming in here, since only 10% of us are born with meconium ileus.
I’d love to, but my belly still hurts. When I eat or drink, when I’m not occupied with other activities, or other activities put my abdomen to use, nearly a third of the pain of Wednesday returns. Aside from little updates on how I feel, I promise this will be the last you hear of this blockage for a while, ‘mkay? Before you keep on wondering as you read on, missing my good writing material while wondering, yes, those are my intestines a few days after my December blockage (December 29th, to be exact). I got it in just before our insurance would have made me pay a huge deducible (unbeknownst to us, but I wasn’t willing to risk it and pushed for a 2009 test date).
Let’s be positive for a second, since I am an eternal optimist, according to the resident expert on Fatboy: Beautiful. On a super awesome note, I kept track of my weight through the ordeal, and I must say, Fatboy responds well to being fat. Here’s what happened. Pre-blockage: 134/135. Post blockage: 125. Last night: 129. This morning: 131. It was clearly sweated weight loss due to the combination of using a heating pad whilst lying on a leather sofa all afternoon and night long. I forgot to weigh myself tonight, but I’m certain it’s at least 133, just 2 days after going hours consuming little to no calories.
Trouble continues
I can tell you exactly where the trouble continues: right at my bottleneck spot. The continual cramping and straining against the mass that had me blocked makes for a very tender area of gut. I don’t know if the mass needs to be big and is continually stretching and straining the smooth muscle with the peristalic action.
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We have ordered 500 silicone awareness bracelets this morning. As soon as I finish creating the PayPal side of things and the graphics, we will begin pre-ordering.
Since we did not receive 50 questionnaires, I will be picking one at random to receive one free bracelet and one person to receive 3 free bracelets to fulfill my promises of a prize.
I will announce pre-order sales when the page is set up. We are very excited and can’t wait to see them when they arrive.
At least she has an epidural!
A lot can happen in 24 hours. It’s been said by several people already: I jinxed myself blogging about my last blockage that I had in December (Part 1 and Part 2). Yesterday was a day and night of utter misery with yet another blockage. Yay, right?
Why the photo of the pregnant woman? I’ve had a family friend who experiences occasional IBS tell me that she’d rather give birth again than have another round of IBS and she is sure that the pain I go through with my blockages is worse than her IBS. Nothing against women; that came from a woman with 3 kids. That’s the kind of day I have when I have a blockage. So, I should have something like 20 kids by now…
It wasn’t my fault again
At about 7am, I noticed I still wasn’t quite feeling well from the late night before. I felt like I’d eaten greasy hamburgers, but I’d had a very healthy meal. Something just didn’t feel right. I checked my travel enzyme bottle and confirmed I’d taken my Zenpep. I had a normal breakfast and lunch and was sure to take enzymes with my cheese and crackers.
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Word from her uncle and sister says that it was a textbook surgery and that her new, pink lungs are a perfect fit for her. We are all waiting with bated breath until she makes her own first communication. Knowing her, it won’t be long. You know Beautiful will have instructions to leave my iPhone on my lap at all times if I ever need to get a lung transplant.
Go Beth, go! Cystic Gal
There is something emotional to the core about Cystic Gal getting her new lungs tonight as I type. She is currently under the knife having her wretched, diseased lungs carefully removed from her chest cavity. Beautiful said she felt the same way when Piper got her lungs, but I wasn’t following Piper like I have been CG, because CG is all over Twitter and the blogs with comments and such.
Beth Peters (CG) is my first cystic fibrosis friend to receive her dream of new lungs. Everyone else has become a friend post facto, at the very earliest with me finding out they got “the call” and following them as their transplant day progressed.
Beautiful asked me what I was feeling about her transplant before she went to bed tonight. I couldn’t quite put my finger on it because it’s not like we’re great friends, but we have hundreds of tweets going back and forth and understand each other pretty well. We are both fighters. She’s going this alone in Boston, and I have to respect that a ton.
My eventual answer was I’m feeling emotional because, barring a cure that prevents CFers with my level of pulmonary damage from ever needing a transplant, this will happen to us someday. I’m banking, praying, and working towards health and a cure, but I’m witnessing what could be exactly what we experience some day in the future. It’s scary. It’s exciting. Did I mention that it’s scary and exciting?
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Cystic Gal Got “The Call”
She’s been quiet for a while, but word got around that she got the call after lunch, or at least that is when the one person I heard it from posted it.
Her site notes:
As the primary recip. …
Will update. Gotta go to hospital!!
Big prayers and love and light my way, pls.
We’ve all seen the rise in the life expectancy of CFers over our lifetimes. Some are still with us, some are not, but the percentage of those living on and living more normal lives is on the rise every decade. New meds by Vertex are showing huge gains in lung function in many patients, and the drugs are in phase 3 trials, moving on to the next set of patients with even more decreased lung function soon.
New drugs for cystic fibrosis bring hope
Four drugs targeting the fundamental cause of CF made by Vertex Pharmaceuticals (VRTX) , Pharmaxis (AU:PXS) , PTC Therapeutics, and Inspire Pharmaceuticals (ISPH) are in phase 3 clinical trials
We left off with Part One with an inconclusive contrast CT scan, a super slow staff, and a previously unmentioned multitude of requests that they call my CF doctor, who is on staff in the building, to let him know I’m in the ER that has gone unattended to for over 12 hours. We now know to call the on-call doctor on the way to the ER or call the coordinator if it’s during the day. I’m not messing around with blockages any more – I may even opt for corrective surgery the next time, because I really can’t describe the pain and suffering that goes on during a 24-52 hour blockage.
The only good thing that comes from a blockage is the relief afterward. However, even that was taken from me this time.
Oh, now you’ll listen to me anyway?
After hours of hammering them with my requested treatment method using reason, history, rage, and anything else I had available in my condition, they finally sent me down to radiology to get my enema. Long story short, I waited in the hall long enough for my morphine to wear off so I could experience the full torment of radiological hell without pain relief, but the treatment worked and I was sitting happily on the gurney waiting to be wheeled back to Beautiful when I gave them the “all clear” sign that I was “all clear.”
It didn’t take long back in the ER for me to realize that I wasn’t completely clear, though. I was very, very tender, along with an abnormal mass where I have my bottleneck. I was thinking that it only cleared out some of my problem, but that I’d had so much to eat at Outback that it just got re-plugged with that partially-digested food. Things still weren’t right.
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I’ve always noticed that my scar (shown again for your benefit) seems to be directly attached to the abdominal muscles beneath it. You can try to grab my scar and pull it outward, but there is nothing to grab onto because it’s so tightly pressed to my muscles, which were totally raped by the surgeon. I have a 3 1/2 pack, even though you could roll a car over me with my strong abdominal wall. This photo was taken before I got a nice layer of fat from my additional 15lbs of weight, but all you can still grab is fat.
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CF Fatboy is a small business owner flourishing in Tampa, FL. He and Beautiful have been married for 3 years and are doing everything they can to ensure they have a long life together.
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