Enzymes: It's All About the Poop

Yesterday I spoke about my semi-recent switch to a different enzyme and the kind of impact it's had on my life. That however wasn't the overall point of the blog - the point that I was making is this: Don't settle for status quo. We all get tricked into thinking that CF is some type of non-negotiable disease in which we have no control over and whatever way we feel, that's just going to be the way that it is. I in no way was just talking about the community, but talking about myself, who battled that mindset for much of my life. I accepted the "consequence" of having CF for what it was and figured that I'd just have to put up with all of the peripheral damage. As it related to yesterday's blog, I was specifically speaking about feeling bloated, stomach pains and crazy poops. A small change in medicine helped open my eyes even more and made me realize that I no longer had to settle. Anyway, that synopsis was long enough, but if you didn't get the chance to see yesterday's blog, click here to read it.

What I really wanted to talk about today was different strategies when it comes to taking our enzymes. A get a lot of questions thrown my way (keep em coming!), but a good portion of them, have to do with poop and enzymes. Some of the common questions are:

How do I know if my child's enzymes are working?

Can I adjust the enzyme dose?

What can I do if they refuse to take their enzymes?

I'm not going to get into that last question, but if you're interested in hearing some answers about that issue, I would encourage you to go to CysticLife.org and check out the different strategies that parents have used. I do however want to talk about whether enzymes are working or not and if we can adjust or dose, or more importantly, how we take our enzymes. Remember, I am simply revealing my own experiences and relying on what has worked for me. Before changing anything in your own or your child's healthcare plan, please consult your doctor.

So, how do I know if my enzymes are working? There is quite a few ways to know, and I'm sure I'll miss some, but here are some things that come to mind.

- My poop sinks

- My poop is formed

- I'm not terribly bloated after eating

- My stomach doesn't hurt after a meal

- I'm not incredibly gassy

- No grease in my poop

Like I said, that probably doesn't cover everything, but that's a good start. Conversely, I know that my enzymes aren't working if the opposite of those things are true. For me, becoming painfully bloated after a meal and my poop floating and not being formed are the most tell tale signs. I must point out, that this does still happen even when on the correct enzyme and on a proper dose. Not all things going on in the body can be explained and I'll certainly ever expect to be 10 for 10 in the poop department, for example. We must remember that Joe Blow walking down the street doesn't always have perfect poops either. It happens to everyone, CF or not. It especially happens to everyone who eats fast food and pizza, trust me, you can ask my brothers (right guys?). We can only do what we can do in some cases. Take our pills faithfully before we eat and then hope for the best. I'd guess that for most of us, they do their job a majority of the time.

I have employed a couple of different strategies throughout the years when it comes to taking my enzymes or being on the proper dose. First, I make sure to relay everything that's going on with my CF team and they'll usually be the ones to recommend an actual dosage change if the deem it necessary. Some of the obvious dosage changes I make myself will be based on the meal that I am eating. If the meal is full of fat, grease or dairy, I will always take my full dose of Zenpep, which for me, is 8 with a meal. If I'm going to be eating a more balanced meal with equal amounts of fat, protein, etc, I will usually bump it down to 6-7. If, like today, I'm eating raw vegetables with some hummus, I may only take 4-5. The whole thing of it is trial and error. There is no "magic dose" or a certain number of units that will work for everybody. Over the years, I've just paid attention to how I feel after eating certain meals, and then adjust accordingly.

Last thing I'll throw out there...I've also found it helpful to play around with how I take my pills. For some brands of enzymes I found it helpful if I took them all 10 minutes before I was going to eat. For some brands it was best 5 minutes before I ate, as well as immediately before I ate. Another strategy that worked wonderfully for me was spacing my enzymes out throughout the meal (This worked best with my last brand). I was talking 9 pills with every meal and would start the meal with 3 of them. Then, 1/3 of the way through I would take the next 3 and 2/3 of the way through, the last three. As I said, it worked very well. It was suggested to me by a dietician after I was having some stomach issues and they didn't want to increase my dose.

Bottom line: Pay attention to your child's (or your own) poop, symptoms, etc and adjust accordingly. Our body was beautifully and wonderfully created and 9 out of 10 times will tell you exactly what's going on. It's just up to us to listen.

Let me stress again, consult your doctor before any adjustments to your or your child's PEP therapy. I'm not a doctor, if I were, we'd all be screwed.

That's the Way It's Supposed To Feel

That describes my attitude towards CF for much of my life. Whether I was short of breath, had lung pain or a bloated stomach, my response was, "well, that's the way it's supposed to feel". As I've "matured" in this CF life, I've realized that I have much more control over this disease than I used to give myself credit for. You see, maturity isn't necessarily what you know, it's what you do with what you know. I've always been up on the latest medicines and treatments offered to the CF community, but I wouldn't be the first in line to take advantage of the "latest and greatest". It's certainly not the case that I didn't care, but in a sense, I didn't want to rock the boat. I felt fine. That's pretty common for us isn't it? Feeling fine. We figure that if we're not feeling horrible, we're ahead of the game. We get used to feeling "just ok" and that quickly becomes our normal while feeling "pretty good" becomes the peak of which we think is possible and feeling "awesome" seems out of reach.

This couldn't be more true in regards to my digestive enzyme choice over the years. I was taking the same PEP (pancreatic enzyme product) for as long as I can remember and because I never had much trouble putting on or maintaining weight, I figured it was doing it's job. Problem is, a PEP should be that and so much more. While I was maintaining weight, I did my best to ignore all of the stomach pain, bloating, inconsistent stools and frequent runs to the bathroom. It had been occurring for so long I figured it was "just the way I was supposed to feel". It wasn't until my hand was forced that I ever even thought about switching enzymes. I mean, why rock the boat right?

When the new FDA regulations came out regarding PEPs, I had no choice but to hop off the sinking ship that I was sailing. I had heard rumblings in the CF community about a new enzyme hitting the market called Zenpep. After doing a little bit of research on my own, I decided to approach my doctor with the information I had uncovered and suggested that I make the switch. He agreed and my journey with Zenpep has been a good one. Instead of being bloated after every meal, I now only look pregnant if I over do it on fast food or pizza (I'd assume that falls in the category of- it's that way for everybody). My stools have become more consistent and it doesn't feel like I'm sitting on a toilet for most of the day. I'm still maintaining myweight, but like I said, that's never been an issue for me.

The biggest thing that Zenpep has done for me was made me realize that "that's NOT the way I have to feel". I got stuck in the "just the way it is" mentality and it was that little blue and white pill that snapped me back into reality. Things CAN change. You DON'T have to settle for "just ok". You DO have options when it comes to PEPs and other meds. I'm very happy that I made the switch to Zenpep and so far, there's no looking back...

...I just wish I would have woken up sooner.