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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I definitely had a birthday to remember last year for my 31st birthday. I got the spend the next while in the hospital, but all of the misery began on my birthday. Let’s rewind a bit and start from the beginning, just for those who haven’t read everything about my history up until now.
I was born with meconium ileus and had about 25% of my small intestines removed in my first few days of life to repair the damage. Subsequently, I have a bottleneck of scarring that has always presented itself as a problem with various foods throughout my life. At first, it was whole kernel corn. For whatever reason, probably just because I became a better chewer of my food or my body grew big enough to let corn get through, I only have a problem with melted cheese when I haven’t taken enough (if any) enzymes. To keep this a little shorter, here is what happens and what normally solves my intestinal blockages.
My birthday is December 18th – one week before Christmas and two weeks before New Years. It’s been our tradition since we started dating to go out to a nice dinner (or as nice as I could afford when her birthday rolled around) to have a memory of the day. I can remember quite a few of my birthday dinners with Beautiful, and maybe even all of them… so you can imagine my horror when I started to feel cramps in the mid-morning on my birthday.
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Enzyme Amnesia: When you’re chowing down on your food and you can’t remember to save your life if you already took your enzymes. The glass isn’t an indicator, because you didn’t drink milk tonight and you’re OCD about putting the enzymes back in the same spot on the table, so that’s no help either.
If you’re like me (a life-long recovering meconium ileus patient {see scar here}), skipping enzymes leads to a very bad situation in about 24 hours if you neglected to partake from the enzyme buffet: an intestinal blockage that usually requires professional intervention. For me, I now have it down to an exact science.
The symptoms and steps to recovery
- If I feel intestinal aches, I think back to exactly 24 hour prior and what I had to eat. Did it include a lot of cheese or even a little melted cheese?
- I stop eating at this point if the answer is “yes” and try to drink more than usual, while being conscious of whether I still feel full a long time after a big drink.
- I wait 4-12 hours to see if the aches turn to cramps and if the cramps do the job of clearing out the blockage on its own – that has only happened 4 times in my life.
- When the cramps turn into grand-mal “oh, I’m going to kill someone if I don’t get immediate help” pains, we go to the ER and I have them pull my history of obstructions. I point out how the symptoms, treatments, and results are all the same in the end and they should just do as I say and get me out faster.
I’ve noticed that ER doctors and nurses don’t like being the ones who don’t know exactly what is going on with my body, even though I do, so they are often reluctant to do what I ask without anywhere from one to four tests first. Thankfully, they are always quick to provide morphine (even before IV fluids when my port is already accessed, if you can believe that). Sometimes, they “comply” and simply do an x-ray and then take my suggestion for treatment since it’s relatively non-invasive and HAS to be cheaper than their alternative tests, which can include hours’ long waits for a contrast CT scan.
What works for Fatboy?
Stop reading now if you don’t want to know what cleans out my pipes and how they get there.
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Meconium Ileus Scar: 1978 Style
I’ve got a huge meconium ileus scar that I’ve been self-conscious about my entire life. Now, in my old, fat age, it’s not stretching with the rest of my gut, leaving an odd-looking line across my midsection when I stuff myself after a good meal and I’m wearing a t-shirt that has become a tad snug around the middle. In fact, my favorite shirt I’m wearing to the right is starting to look a little ridiculous, so says Beautiful. I guess I have to agree at this point.
It wasn’t until I started following other CFers on their sites that I found out that there seems to be more who have a vertical scar than a gaping horizontal scar like mine. I’ve heard my dad say on a number of occasions that the surgeons really butchered me up with that first surgery – probably because it was 1978 and they didn’t give me much of a chance of living past 5 or 10, so what did it matter what my scar looked like.
Now, it’s a bit of a nuisance to the point that I’d consider some cosmetic surgery to re-align all of my muscles to get a beautiful 6-pack and get rid of anything in there that is pinning my scar in tighter than the surrounding area. A middle-aged gut on a CFer is a badge of honor that I will wear with pride, though I’d rather work back down to a washboard and maintain this weight.
My other scar
My other “big” scar is from my port when I was picking at the scab, not realizing how it was pulling apart while healing because they only used that 3M glue bandage that started peeling after a couple of days. The more I picked at the itching incision, the wider and more transparent the scar turned. This probably isn’t the best shot of the scar, but I haven’t found that new camera I’ve been looking for yet to take nice macro shots.
You can link to an external photo, such as Flickr or your Facebook or Posterous account in the comments, and it should show up for us if you want to show off your scar in the comments. Otherwise, tell your story on your blog and link to it with Linky Tools below with a mention/link to this post in your post so people know what’s going on.
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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.
