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For Your 31st Birthday, I Give You a Blockage

July 24, 2010

My ER: TGHI 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

Huh?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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Zenpep, the New Enzyme on the Block

March 3, 2010

Since I’ve been battling gaining weight for so long, I mentioned my desire to fatten up every time I go to clinic. I’ve had some really rough bouts with intestinal blockages this year. I had two in just 3 months, and one put me in the hospital overnight after spending all night and all day in the ER because regular medical staff can’t wrap their heads around the fact that I had two feet of my small intestine removed at birth. I did some calculations and came up with figures that call that 25-40% of my small intestine. There is scar tissue and some bottleneck in there that binds from time to time.

After my last episode, I was messed up for weeks. I was in pain for over a week and my normal body rhythm was all out of whack. There was bloating, gas, discomfort, chronic bathroom breaks, etc. One evening with family over, I went to the bathroom 10 times after dinner. Something had to change! Eventually, things returned to normal, but I was still deadlocked at 108-111lbs.

I went to clinic on February 19th and mentioned to my coordinator that things were still “not right” and told her my 3 main complaints were still bothering me. She said that a new enzyme just got approved and she had a sample bottle available for me. It’s called Zenpep. If I liked its results, my aerosol supplier ships the enzymes, too.

I went home and tried it that afternoon. That evening, no excessive bloating or bathroom trips. The next day brought the same good news, plus some added bonus of gaining 1.2lbs. The next time I weighed myself, I’d gained 2.5lbs. Things were on the move in the direction I wanted. During the time between running out of the samples and my new shipment arriving today, my old enzymes were their usual mess, shall we say. Today, I’m all better again.

Enzymes can really make a difference in your life.

Here is my theory on why Zenpep is working so much better for me than Ultrase MT20 and Creon MT20 have been: the amounts of enzymes within each capsule is vastly different. For example:

Ultrase MT 20:

lipase 20,000 USP units
amylase 65,000 USP units
protease 65,000 USP units
Zenpep:
lipase 20,000 USP units
amylase 109,000 USP units
protease 68,000 USP units

You’ll notice a nearly two-fold increase in the amount of amylase in Zenpep. Now, I haven’t done any research on why they use this formulation, but here is what my research about those enzymes came up with:

amylase – Amylase is an enzyme which helps digest glycogen and starch. It is produced mainly in the pancreas and salivary glands.

lipase – Lipase; an enzyme secreted in the digestive tract that catalyzes the breakdown of fats into individual fatty acids that can be absorbed into the bloodstream.

protease – Enzymes acting on peptide bonds. EC 3.4.-

Given the nature of much of the nutrition we eat trying to gain massive amounts of calories (complex carbohydrates), it stands to reason in my head, dangerously educated by 2 semesters of chemistry and a growing understanding of my body chemistry with the advent of diabetes risk, that my diet requires higher concentrations of amylase to process those complex carbs.

I would highly recommend asking your doctor or clinic coordinator about Zenpep. They even offer up to a $50 rebate on your co-pays through December, so long as you have private insurance, not gov’t insurance. I’ll be getting these for free!

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