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.
Dorothy Hansine Andersen
Because the symptoms vary and are largely hidden, cystic fibrosis was only described and suspected for the last couple of centuries without having a true diagnosis of the disease until the turn of the 20th century. Observations of scarring of the pancreas and meconium ileus came first, pathologically, but it was documented in the 1700s, “Woe is the child who tastes salty from a kiss on the brow, for he is cursed, and soon must die.”
Imagine having infants dying within days because their intestines are literally blown apart at birth. Toddlers who are half the normal weight or less because they aren’t absorbing their food because their pancreas isn’t providing enzymes. These are invisible problems and involve issues that aren’t even understood yet. “Failure to thrive” was often what was put on death certificates of people we can trace back as potentially having died from CF based on family history.
Based on the research milestones according to the list on the Cystic Fibrosis Foundation site, there is good reason for hope of a cure:
Click to continue reading this article…
How does cystic fibrosis do what it does?
I’ll admit it, we either have to stop and think of the logic of what the biological process is or go to Wikipedia and look it up to refresh our memory. I’d rather have the information here at my fingertips, so here goes a scientific/layman combination attempt at explaining what is wrong with CFers’ bodies.
Cystic fibrosis transmembrane conductance regulator – CFTR
What the heck, Fatboy? I know, I’ll explain this – don’t worry. Simply stated, this is a protein on the a gene in chromosome 7 in people that regulates the balance and flow of water and sodium chloride between cell membranes to keep a consistent ratio of water in one’s cells. In cystic fibrosis, particularly in the mutation referred to as ΔF508, it just doesn’t work. I happen to have a double ΔF508 mutation (one gene from each parent) that makes my form of CF the “most common” by percentages of mutations known of the CFTR gene.
That means thick, sticky mucus and other bodily fluids
From an early age, even inutero, this gene can wreak havoc on the body, depending on the mutation. Some CFers go decades without diagnosis because they generally function just fine with their mutation. Others are on the lung transplant list by the age of 5. I happened to be born with exploded intestines, which is a common, obvious diagnosis of CF in infants called meconium ileus and have a huge scar running from side to side across my gut.
Click to continue reading this article…
I just received a question with a little sadder tone than Ask Fatboy: Issue 1 had, but I imagine it is a common feeling for parents with adult children with CF who are where her son is. With her permission, we take a look at the issue at hand and what I have to say about it. She writes:
I’m watching my 22 yr old son struggling to gain weight. Also seems to be getting depressed watching his friends getting married and so to speak moving on. Do you have any suggestions? – Maribeth
I can fully and completely identify with both of those problems, but my suggestions vary widely based on where he is in life right now regarding work, college, friends, living arrangement, and his relationships with his parents and doctors. If you’re reading this, “son,” don’t take any of this as talking “down” to you nearly as much as “at” you, because I have been where you are according to the request from your mom. You may have additional circumstances, but from what I know at this point, you and I are cut from the same block, and that’s how this is addressed.
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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.
CF Fatboy is a small business owner flourishing in Tampa, FL. He and Beautiful have been married for 5 years and are doing everything they can to ensure they have a long life together.