Calling our Dr. Poopologists

[Aboveallislove]

Hoping our Poopexperts could help me think through something:

A. Is the "soft constipation" or viscous stool caused by:
1) too few enzymes
2) the water imbalance in the GI track
3) the sticky mucus in the GI track or all
4) all of the above (or some combination)

B. Could different foods cause the stool to be more viscous like some foods can cause the normal "dry/hard" constipation that "normal" people have? (Here, I mean unrelated to the fat content and potentially insufficient enzymes. So for instance, if the enzymes are dosed properly/high enough, could a certain food still make the stool more viscous for those with CF, whereas for "normal" folks it would be a different kind of constipation.

C. Once the viscous stool begins to accumulate is Miralax and/or a clean out the only way to get it to move through.

Our son has been doing amazingly well with the GI stuff lately, with only 3 incidents (other than passing normal tummy aches) in about 6 or 7 months and we resolved by following the GI's portal of increasing the Miralax for 3 days. I'm convinced it is accumulation of viscous stool, but I'm trying to think through the why it might accumulates to prevent that from happening and having an intelligent discussion at the next appointment. In short I want to know the "why" to keep it from happening.

LittleLab: The enzyme info you gave is sooooo helpful. I want to be able to discuss that angle with the GI, but want to think through how it all plays out with the viscous stool too. Any thoughts as always greatly appreciated!

 

[Ratatosk]

DS had numerous issues with constipation and a distended belly when he was younger. We later found out that he had adhesions caused by his original surgery for a bowel obstruction, which over time made it difficult for the enzymes to get where they were supposed to (small intestine). The poop issue has always frustrated me. Each person is different in terms of what they can eat, what they tolerate, what they may or may not need enzymes for...

I know some people here swear by enzymes with buffering in the form of Sodium bicarbonate or taking additional supplement of it so the acid in the stomach doesn't destroy the enzymes before they continue into the digestive tract. Others have used an acid reducer such as zantac.

With ds there are certain food where we know he requires more enzymes --- theatre popcorn, which is soooo full of fat.

We also limit the amount of peanuts (sunflower seeds, nuts) he can have each day -- twice a day max because otherwise he tends to get plugged up and we have to dose him with milk of mag.

 

[Aboveallislove]

Thanks Ratatosk. We actually cut out nuts entirely based on your experience and since "Texas Toast" was our downfall, that too went out the window, which stunk because it was soooo easy to make and DS loved it. DS does take zantac and prilosac and is at the "max" of enzymes (at least what anyone at our Center will prescribe or give the GI the go ahead to script. That's another issue and one I'm frankly not comfortable pushing on, even though I know many do have blessings to go over the "max" per the label.) I had asked about the biocarb coated ones but honestly don't remember what they said. DS didn't have MI so the adhesions wouldn't be an issue, but that is so good to know for those who had that as an issue. We really are in such a good spot and oh is life different. I just like to logically understand what's going on! Thanks again for thoughts!

 

[Ratatosk]

We've never been told that ds has a max in terms of enzymes. His doctor indicated if he ate something like pizza, to give him more. I do recall when we had constipation issues as a baby, the doctor when discussing meconium equivalent and different methods used --- miralax, mucomyst, golytely, gastrographin enemas --- said one might be tempted to decrease the amount of enzymes to get them to stool, but that can cause issues in the long run. Case in point when ds had surgery to repair his 2nd bowel obstruction -- the surgeon asked us if ds was on enzymes because the consistency of the stool lodged in his intestine was hardened, like concrete and to him appeared as if ds didn't take enzymes. It was pretty much the perfect storm of bowel obstructions -- adhesions, enzymes not getting where they were supposed to, build up of mucus, undigested food...

I do know of a family locally whose child was on the maximum amount of enzymes as per their clinic and never had well formed stools. The mom swore by mucomyst orally. Apparently it cut thru the mucus... Nasty tasting stuff though.

 

[Aboveallislove]

That's y interesting re your clinic and maximum amount because that's the first thing the dietitian does--pulls out her calculator says, "hmmm, well we can't up the enzymes because he's at the maximum" or "well, let me check with the doctor because 6 is just slightly above the maximum for safety, but if he is only doing at high fat meals and not more than 3x a day, it should be okay." I had hear of mucomyst but also that it was nasty! Defintely for the arsenal if need be. Your poor little guy--I know the DIOS stuff was horrible, but to add to that the adhesions. Thanks for the brain storming. Oh, and that's interesting that the consistency looked like he didn't take enzymes...that make me think it is the lack of enough enzymes that might cause that adhesive stool. If you think of anything else, let me know!

 

[ethan508]

Did the doctors/dietician explain to the side effects of too many enzymes? I've often wondered this myself mostly because my bad guts always seem like the results of not taking enough enzymes.

 

[Aboveallislove]

They did, but I don't remember the name or exactly what it is (it's actually in the package insert too). I just googled and http://www.rxlist.com/zenpep-side-effects-drug-center.htm and it is http://en.wikipedia.org/wiki/Fibrosing_colonopathy. The doctors scared the be-jebers out of us about not giving too many because it would be an emergency surgery where (my recollection is) they have to remove part of the intestines.

 

[Ratatosk]

When ds was a baby we always worried because we'd give him his enzymes and sometimes he'd only eat a few ounces, sometimes would hardly eat anything. Based on the product literature we were a little worried about side effects from too many enzymes and our doctor told us that not eating wouldn't cause any issues, maybe ds would get a red butt from too many enzymes when he stooled. That too many enzymes meant a HUGE (excessive) amount which I took to mean handfuls... And over long periods of time. The nurses in the NICU too indicated that we should use a stronger diaper cream (industrial butt paste).

And when ds switched from formula to whole milk and there was less fat involved, until we got his dosage of enzymes figured out, he didn't really get constipated, but his stools were much harder, drier and he didn't stool as often.

 

[Aboveallislove]

Thanks. Yes, they said not to worry if he didn't eat if he was in the "dosing" limits but the clinic is very particular on staying within the "safe" range provide. I totally hear everyone though and the enzymes might be an issue. GI at one point wanted to go higher but then after talking with CF said "no" because at max. But I do hear what you all are saying (and am not ignoring it, just not sure how to handle if the clinic's answer is "no" and since we are "stable" now; although I will ask the GI whether anyone has higher dosing than provided and also the CF doctor to discuss with her CF GI contact if they ever go higher. I wonder if a patient had a bad reaction and now they are risk adverse to anyone doing higher than given. How would you handle it if the clinic is saying this and GI is going along? The "experts" aren't anywhere near us and since we are "stable" now I don't see trying to travel half-way across the country. But this is part of why I want to know if the dosing not being high enough causes the vicious stools...to discuss that with them from a more intelligent standpoint.

 

[Ratatosk]

Do clinics or GI's ever test fecal fat for patients currently on enzymes to see if they're in the right range? Again the poop issue always drove me nuts because when I'd ask how we'd know how many enzymes to give or what normal poop looked like, we'd get the mysterious smile and a "you'll know". Erm, no, I don't, that's why I was asking. And normal IMO, isn't that bright grass green, well formed stuff from pregistimil that the NICU nurse insisted was perfect.

 

[Aboveallislove]

They haven't but I love that suggestion! And I really feel like I'm beating a dead horse always asking for thoughts but my mnd processes things at differen times differently and I keep coming up with different angles so either I get it or they do! I'll definitely ask about checking out that to see on dosing!

 

[nmw0615]

I take more than the max dose of enzymes with every meal, and have never had an issue (knock on wood). I did once try lowering my enzyme dose after a discussion with the dietician, but after one meal I knew that wasn't going to work.

I'm also wondering if there is a higher dose of enzymes you could ask to try. I take Creon 24, but started at Creon 12. When I started taking an extreme number of that dose just to get through each meal, we switched to the higher dose so I could take fewer pills. Unfortunately, I'm starting to need more 24's, so I might ask my team about the 30's that have recently become available.

 

[Ratatosk]

Have you tried giving a higher dose just to see if that improves things?

 

[Aboveallislove]

No. Because it is not me, but my child, I am not comfortable ignoring the doctor's "orders" even though I hear you'al that many have higher dosing and many doctor's okay. We are actually in a good spot now but I'm trying to figure out the "why" (is it that enzymes aren't enough) in order to discuss with the doctor exploring other options in case we get into a bad spot again, such as higher dosing of enzymes. Thus, I'm trying to understand if the sticky stool is because enzymes aren't dosed higher enough or is it the nature of the CF mucus in GI track; or a matter of the water imbalance in the GI track. He doesn't get stomach aches after the food, i.e., after a hugh high fat meal. He gets stomach aches the next day or two days or three days later when things get sticky and then it continues constantly for months (or did....now I immediately up the Mirlax per their direction when his stool changes or I notice the first tummy ache that fits the pattern. (It's kinda like your baby's cry....you know what it means ! The # of pills isn't an issue so upping to next dosing isn't something I see changing things (unless I'm missing something there).

 

[Ratatosk]

Unlike some people who are pancreatic insufficient, DS never really had stomachaches after eating something fatty and not having enzymes or getting enough enzymes. He did have issues with constipation and a distended belly which required a little extra help in the form of Milk of Mag, but for the most part he just had really frequent fluffy or loose stools. As he became potty trained we noted they broke apart easily in the toilet and left a ring at the waterline. He does get stomachaches if he eats too many nuts or if he only has nuts for a snack/meal.

 

[Aboveallislove]

Thanks. That added info is very helpful to know!

 

[Ratatosk]

Hopefully you'll get some answers. I do have a friend locally whose daughter a would run out of enzymes because of limits on the number and she'd end up having to feed her lower fat alternatives. Part of the issue was she'd have a few cans of carnation VHC or boost in between meals for snacks to keep her weight up.

 

[TreasureGoddess]

OK Here's my take on the Poopology..... the "normal" poops we aim for are "ropey" and slightly soft, but not floating. If my son (now 15 and HATES talking about poo details btw) knows if he's seeing a lot of orange oil on the water in the bowl with aq BM, he's not had enough enzymes for the meals he'd been eating. We also use the Creon enzymes and love them. We've tried a few brands and have switched back. I really like that as he's needed more, he can switch up to a stronger type (MT12, MT20, MT24, etc) and less pills, and have a new range and limits.

If my son is eating a meal with more fats and proteins than usual, he will take 1 or 2 more enzymes than usual. If he's eating over a long period of time, like eating in a restauarant, he takes a 3 pills with the first chips & salsa course, then 3 or 4 more when the food comes. (his usual limit is 7 pills). Normally he swallows all 7 before the meal, but if it ends up to be more fat/protein than usual, he'll take 1 or 2 more at the end or part-way through (like when he's in the restaurant). It's truly a guessing game that your child will get really good at determining as he/she ages.

If things are moving good, YAY! I'd stick with the current process. As things start slowing down, less BM's and more feeling full in the morning when he/she wakes up, that's a sign that you may need to increase the miralax for a few days. Some days my son's enzymes just don't work and he has runny poops for a day or so. Those days stink, (literally) but he stays home, poops a lot, drinks a lot of gatorade and water and eats soft foods and they seem to resolve pretty quickly.

There are so many "normal" signs of poop, it will just depend on your kiddo and their norm. I'd say the goal is a soft, ropey looking stool without much oil floating on the water. CF stools always smell worse than healthy people's, but when things aren't right the smell is WAY worse and a sign that you need to investigate a bit.

Hang in there, sounds like things are going good! The best reason I've heard from our GI specialists is you try to do the best you can, enjoy the good times and sometimes the body just says NOPE and gets difficult. There may or may not be a reason why.