meconium ileus

Feedback Request on Meconium Ileus Scars

July 31, 2010

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.

Fatboy, Stop Your Bellyaching or Get Enteroclysis

July 30, 2010

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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For Your 31st Birthday, I Give You a Blockage

July 24, 2010

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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Forget to Take Their Enzymes

July 19, 2010

This entry is part [part not set] of 19 in the series What CFers Do

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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