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Forget to Take Their Enzymes

This entry is part 7 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.

Good, you’re still with me. On with the show. What has worked for me for almost 2 decades has been a Gastrografin enema. Recently, I’ve discovered that the closer to body temperature it is, the better. I had a bad experience when they used a really cold dose one time, and I couldn’t hold it in long enough for it to work because my body basically rejected its presence. Since my scar band in my small intestines is so high, it takes at least 2 quarts, sometimes 3 quarts to reach my blockage.

Committee of doctors

How many doctors it takes to give an enema order!

The problem with getting a Gastrografin enema is that it’s usually used for radiological purposes, so only the radiology people at my hospital can administer it. They won’t even send it to the ER, but maybe your hospital is different. Sometimes they insist on doing the full radiology work-up that includes having me roll around and pressing on my distended gut with the machine and generally making me 42 times more miserable than I just was… until it clears.

Why it works

The reason it works is that Gastrografin is a hypertonic solution, so it draws water into the intestines and softens the blockage (it’s the same process as 7% hypertonic saline like Hyper-Sal as eloquently explained by Amanda last week, especially in the comments). It is critical to have started IV fluids before this if you were anywhere near being dehydrated, especially if you were throwing up before arrival at the ER from trying oral laxative drinks. GoLYTELY does not work for me… and don’t even get me started on mucomyst! I can still smell and taste that disgusting stuff after not having it since I was about 10 or 12 years old. I have a very bad gag reflex, and both of those will eventually either fill me up because I’m blocked up or I will gag from the taste and throw up anyway.

So, as long as I can hold that much fluid for 5-15 minutes, I stand an 80-90% chance of being clear by the time I walk out of radiology feeling 10 pounds lighter, no pain, smiling, and cracking jokes with the nurses about what just happened in the bathroom. I’m usually grinning ear to ear as they roll me back into my ER room and Beautiful knows right away whether it’s going to continue to be a long day or night or not.

I’ll save my 31st birthday blockage for later this week. A teaser: I wasted a perfectly good meal at Outback by stuffing it on top of a blockage.

Comments

  1. Thanks to the meconium ileus surgeries I've had, and the natural changing and growth of my body, I now have a stricture in my colon that makes passing food miserable without a daily laxative. Phillips = lifesaver for me. My mornings used to be spent on the floors crying my eyes out in serious pain while doctors told me it was all in my head. Thankfully it got resolved. If I forget to take those, my day sounds a lot like the one your described (minus the ER visit; I usually just wait it out (like right now… oh my gosh it hurts). Missing enzymes is a much less painful endeavor and leads to an experience completely opposite to the one you've described. I'll leave the details at that! lol

  2. Thanks for the comment. You said it got resolved… surgically? Does taking a daily laxative affect your ability to digest enough nutrients from your food for lack of staying in there long enough, or does it act more like a softener like Dulcolax? I suppose it makes sense that the results of missing enzymes would vary based on where the bottleneck is in one's intestines. Since mine is so early, if I miss enzymes with melted cheese, I literally have a cheese ball mass that is hardly any different than it was straight off the pizza or sub that it came from. I think Beautiful and I were in agreement after my last one that we need to get my bottleneck fixed if I have another one as bad as that experience – because the ER is not really the best method or place for therapy.

  3. Remember, you did have one awesome ER doctor that did exactly what you wanted pretty quickly. You even left the same day! Too bad they aren't all like that. I think that was the first time I had to take you for that, and I didn't understand why you were expecting them to give you such a hard time to take care of you. Until the next time it happened. Now I get it. ๐Ÿ˜‰

  4. Now you get it, for sure! ๐Ÿ˜‰ Wasn't he the same doc that asked how long I'd had CF, though, and I started freaking out, even on the morphine?

  5. Yeah, but his attitude was being willing to learn. He was asking questions, and believing that you knew what you were talking about. And I don't think he was the attending.

    The next time we were impressed when that med student came in to do that unrelated test for his study, you told him you symtoms, and he asked if anyone ever told you that you might have CF. You didn't quite think it was funny in your current state, but good for him. Maybe we will get him as a doctor in the future!

  6. Oh, yeah! I forgot about that med student, but I think it was that first one that suggested I might have CF and that's why I was getting flustered. I dunno. They had me on good meds, I just remember getting worked up about the whole thing – but that med student's study took my mind off everyone elses' inability to take care of what was ailing me.

    Poor you, I'm all knocked out when I'm there, but at least this time we know to use minimal morphine instead of as much as I want. For those wondering why, it depresses the body, including respiration AND the digestive tract, so your O2 stats will drop while napping and it doesn't help the body move things along in the gut.

  7. Breckgamel says:

    Oh my gosh – hilarious. So glad to read about your journey as we begun one very similar of our own. Great blog post!
    ~Breck (bennettgamel.blogspot.com)

  8. Thanks. I look forward to catching up on your posts in my spare time.

  9. Resolved, in this case for me, means 2 Phillips daily to pass food without pain. My stricture is at my colon, so it's pretty late in the game. Most digestion has already occurred and now it's just trying to get out! A bulge on my right lower side of my abdomen (about 1 inch inward from my hip bone) is visible when I forget the laxative. They talked about surgery when they finally figured out my problem, but decided that if the laxative kept it under control, that the risk wasn't worth the benefit. I would look into surgery if someone so simple as missed enzymes causes such a huge ordeal. For me, nausea and pain are overall tolerable for the most part, but ER visits should never be!