Bowels – A little something for everyone

Morning ladies,

I’ve been mulling over some things on this topic for a while.  I’m wondering a couple of things.

First – I know that every child is different but I wonder if they don’t fall into some sort of loose categories. I’m hoping you would all share a little.  More specifically I’d like to know how old your child is, where their real issues seem to be (upper intestinal obstructions, evacuation, just super slow motility) and how you assess that along with what your current solution seems to be.

And secondly, I wonder what your overall goal is and how much intervention you feel is appropriate.

I know we have only a few in this group right now, but I also know that there are a lot of ages and choices represented.  I’d really appreciate everyone’s input.  I’ll reply to this in a separate post so you can see what I’m getting at.

 

THANKS!

34 comments

  • So here is my contribution.

    Z is 14 months. She has slow motility, but it is there and functioning. What she really struggles with is evacuation. I know this because when we use suppositories, which we do daily, it is obvious she has what I would consider to be proportionally normal amounts of formed stool about the consistency of modeling clay. So clearly she’s getting it all “down”, just not out. We use FruitEze about every other day right now and that seems enough. (We are super luck there, and I know that.)

    Overall, I’m really happy with this. We could work on a softer consistency, but I worry that we’d just have rash all the time then. And honestly, the way it is now I never worry that she’s constipated somewhere further up and only the soft, liquid parts are getting past. I hope we will be able to maintain this way until we work out what is up with her bladder and/or are able to start a proper bowel program in another couple of years.

    My goal really isn’t to keep her super “cleaned out”. I know that is a concern for some but as I mentioned, I’m happy with the movements we get. I remember reading another mom elsewhere talking about how she thought things were fine until her LO had a serious round of antibiotics and how shocked she was at how much poop came with that. That this convinced her to do more. But when I read that I think, well yes, but that would happen with anyone. It DOES happen to every one that way. Going for a mostly completely clean colon all the time seems abnormal to me. ???

  • This question has really gotten me thinking.

    I don’t think my answer is going to be all that helpful.

    Because Pooka’s supplement regime is working, her bowels “act normal”. She has 2-3 bowel movements a day with a soft, but solid consistency, and a pretty good quantity. And she is clean in between.

    But early on when I would supplement my breastmilk with organic formula or raw goat milk, she would instantly get constipated. But she has always been able to get unconstipated on her own by either returning to strict breastmilk (back then) or returning to her supplement regime (now).

    So how do I evaluate that? I’m not sure.

    Without supplementation her stools become hard and come out like little pebbles.

    Well I guess there is one more component. When she becomes constipated she STRAINS.

    So that means she has some ability to feel the need to push? And the ability to physically push?

  • C is 4 and we manage with senna and enemas (eventually peristeen). I am of the opinion that the colon does need to remain “cleaned out”. I really want to make sure that her colon does not stretch out in any way. At our last appt, our nurse actually commenting that her tone/sphincter had improved dramatically and I think a large part of that was keep her unconstipated. Once myself, her nurse, and doctor did not think she was constipated at all and an x-ray showed an impaction so I always assume that she is more constipated than I think she is.

    MrsK, sounds like you are being very thoughtful/intentional about managing Z’s movements. At what age do you plan to start the peristeen?

    • Your comment has me curious now. Not being constipated and having a cleaned out colon are, to my mind, not really the same thing. So if you’re really trying to keep an empty colon, how do you know when you’re successful?

      • Let me preface by saying, I am no means an expert. I would judge whether or not she is cleaned out enough by two factors: staying clean in between movements (it sounds like this is the case with Z) and the consistency of the stool. To me, paste is too firm. I look for oatmeal like consistency. That shows me that she has had the right fiber/water combination and it easy for her to pass. You mentioned not the firmness showing you that loose stool isn’t passing over an impaction. I also try to avoid anything too watery: the right amount of fiber bulks up the stool but not too much. If she is passing her dinner from a day and half previously then really she may be fine. I’m not sure. Personally, I would try to soften the stools a little but again, I’m no expert. 🙂

  • One of the things that keeps me from getting too eager with softer stools is that their current consistency is firm enough I feel confident she’s not constipated and just leaking around a blockage. Also, if you’ll excuse me being graphic, I can often tell that she is passing what she had for dinner a day and a half ago – say if we had carrots, for example. So I feel ok about that aspect. But, part of the reason I ask is because I know there is room for change on this front, and I’d love to know more just generally.

    I hope we can start the Peristeen somewhere around 3. Because we use suppositories now, usually twice a day, I can’t imagine it will be that big of a deal to her and I’d prefer to start while she’s still young enough to be unconcerned about the whole thing.

    We go to clinic in May and should see the GI nurse then. I’ll be curious to know what she says about it.

  • Lauren is 11. She used to never stay clean, no matter what we did. We had a modified MACE procedure done in 2013. We now do a saline flush through her bowels every night for 30 minutes. For the most part she stays clean all day. Sometimes, like when we go camping and can’t do our routine, she will have accidents and we take several days to get back on track. It was a horrible surgery for us and a 2 year recovery. We are just now seeing light at the end of a long tunnel.

    Mira is 8. Constipated most of the time. Not regular. She is allergic to everything, so diet is really important but also her downfall, since the foods that would loosen her up, she can’t have. We love DigestZen oil blend for helping with her constipation. It works great, but still no set schedule or time, and she is in diapers still. She looks like a 3 year old (and has autism/FAS/etc, so I have not been strict about getting her out of diapers, but I need to start thinking about that.

    • I should also say that Mira came to us with a prolapsed rectum ,so severe that none of our american doctors had never seen such a thing. I changed her diet immediately and after nearly 2 years it was reversed on its on. And the foods that usually loosen stools for others do not for Mira, but the foods that work for her would do the opposite for a typical person. We have determined that the extent of her brain damage has created this challenge. For example, she does not feel hunger or fullness at all. I have to be very strict about her intake. She also has never vomited. In 8 years. I wish I had that skill:)

    • So how does Lauren feel about the MACE now? Did you decide based on the fact that you just couldn’t make anything work? A very valid reason! Just wondering if there were other factors besides strictly that. Did she actively want the surgery? Did it seem that the problem was just too high up inside her intestines to be reachable with a normal enema type program? I assume it does let her be independent, which has to be huge!

      Gosh, poor Mira. Allergies are horrible! What an added burden to not be able to be hungry or full. Is she mature enough yet to be able to understand how to cope with that? Does she ingest the oil or is it topical? Is she aware of being constipated or is that sensation dulled also?

      Sorry for all the questions!

      • I am so sorry I did not see this!!! I need to figure out how to get notifications on my phone for the days I am not at my computer. Lauren feels just OK about the MACE. She gets frustrated that it has to be a nightly routine, usually when she wants to play with Kimberly before bedtime:) We have a little step stool for her to rest her feet on, and let her watch a movie or play a game on our tablet. You can also get toileting chairs with trays, perfect for coloring. Yes, she really did want the surgery. We prayed and talked about it for a while. She does like that she now is clean all day, but the complications and multiple surgeries following it due to infection, rotting chait tube, scar tissue creating channels for poo to go,etc have not been fun. I think we are done with that now, though- and we were told that our situ never happens, it is rare! We really couldn’t make anything work for her, at least not that would keep her poo-free during the day, when she is social. That was important to her. We tried diet and exercises, etc.

        Mira take DigestZen a drop under her tongue and we rub it on her belly if she feels “sore” which for her means constipated. She has some pressure, but doesn’t really understand what it means. As she gets older and understands more, she can hopefully train herself to understand that feeling. As for hunger and feeling full- we really struggle with that. Mira has great taste buds. If allowed, she will eat 12 donuts at once without stopping. She doesn’t feel full and she doesn’t vomit. See how dangerous? And because of her autism and FAS, if she is enjoying something, she will not stop. I am constantly trying to teach her about self-control but it is hard when she doesn’t understand. When we first adopted her and had no idea, we were shocked at the amount that her little 18 pound self ate, I was very confused! Until we saw a geneticist who explained FAS and saw Mira’s brain scan.

  • I’ve been thinking about this a lot. I have a big long comment that I haven’t finished working through myself yet. So until then, I have a question. It seems to me that there are two issues with our kiddos (if I’m simplifying things too much let me know). When it comes to just constipation (not continence) it seems that the first step is to get the stools to the proper consistency. Our bodies need the proper combination of water, fiber and lubricant. And this combination is probably a little different for everyone. I found it interesting that most laxatives (other than the stimulant category, like senna) are just putting more water, fiber or lubricant into the bowel.

    All this to say, let’s say we can get our kiddos bowels to the proper consistency using diet & supplements (laxatives). Then we look at where the function is for each kiddo. And that is where I get fuzzy. I’m wanting to know how many different functions there are to move food from the stomach to the diaper.

    So here is what I came up with and I am really wanting everyone’s input:

    Peristaltic action – like a snake moving food through the bowels
    Sphincter control – keeping it in and letting it out
    Then there is the final push (what is that?)

    And is there more?

    Thanks ladies!

    Tina

  • I was thinking this today and found this Page. http://www.mydr.com.au/babies-pregnancy/continence-in-spina-bifida-bladder-and-bowel

    Some of it is basic, but it was thorough and simply stated. It certainly talked plainly of how bladder and bowels work. I thought it might help.

  • What a great link! Thank you so much. I’ve looked for similar information, but never found something so thorough, yet concise.

    I loved the description of the pelvic floor muscles in particular.

    I have to tell you. I still hold out so much hope that we can make great strides to improve our little ones’ function over time. Perhaps I’m overly optimistic, I don’t know. Time will tell, I guess.

    I’m going to write a post about what I’ve been thinking.

  • I want to share what I learned about laxatives. I mentioned in an earlier comment that I did some research on laxatives. Well here is what I learned.

    Laxatives fall into a bunch of categories. But the more I read about all the categories, the clearer it became that, for our purposes, they fall into just two basic categories.

    The first category uses some food or supplement to add fiber, water or lubricant to the bowel. I thought we could call this category Supplement or Diet or Consistency. IKD?!? I’m open to suggestions for a better name for this category.

    The other category is stimulant, which is the actual category name found online.

    1) Stimulant laxatives stimulate the peristaltic action of the bowel, to keep things moving. I picture it like a snake swallowing something. Senna is an example of a stimulant laxative.
    2) Supplement/Diet/Consistency – Those that add fiber, lubricant or water to the bowel or some combination of the three. This category falls into a lot of sub-categories:
    a. Bulk Forming – add fiber (psyllium husk)
    b. Lubricant – add mucilaginous substance or oil (slippery elm & fish oil)
    c. Emollient – add water & oil
    d. Hyperosmotic & Saline – cause the bowel to retain more water

    I found these categories very helpful.

    Fruit-Eze falls into the bulk forming category.

    Molasses falls into the hyperosmotic category as does Magnesium & Vitamin C. Basically high quantities of certain minerals draw water into your bowel to flush the excess minerals out of your system. That’s why sometimes the prescribed dose will be “take it until you get loose bowels, then back off a dose”. That’s how chlorophyll & folate work too. Basically your body uses what it needs and when it gets more than it needs, it pulls water into the bowel to flush out the rest (to prevent toxicity).

    Btw, there are both natural and synthetic forms of most of these laxatives.

    I’m of the opinion that all the categories & subcategories of laxatives listed above are safe and helpful when used in natural forms. It’s the synthetic drug forms, not found in nature, with a host of side-effects, that scare me.

    I hope this is helpful.

  • Its very interesting. We’ve been on again off again with “the great coffee experiment”, which I’m sure is a stimulant sort of laxative. I have to say, it does seem to make some difference, but not a completely predictable one. Or, at least, not yet.

    Ultimately I think we certainly can improve things, but it still remains individual and a walk down the same path of determining what helps our little ones produce a stool that is passable, and then figuring out where they need help to actually pass it.

    That link above also included some info on bladder and possible surgeries. I had no idea they could insert a synthetic sphincter. For Z, sphincter is the key for both bowel and bladder. She’s a bit too young yet to climb on a horse, but there is a hippotherapy place here and I’m very interested to see how young she can actually start and if it won’t help both thing for her.

  • Well isn’t THAT interesting. Sure enough, coffee promotes peristaltic action. I knew it was a laxative, but I wouldn’t have guessed that it was a stimulant in the bowel sense. I guess that is part of why coffee enemas as so effective. Hmmm… You learn something new every day.

    I’m excited about hippotherapy as well. Seems to help a whole host of things – balance, pelvic floor, reflexes, confidence. . .

  • Great discussion! Sorry I am super late to join in and this is probably no longer relevant, but thought I would also share about Caroline’s bowels. We are at a pretty good point with her bowel management now. Caroline is 17 months, so we are not yet concerned with continence. She seems very sensitive to Ditropan (first became constipated 2 days after starting ditro at 4 mo old and exclusively breast fed). She takes a daily combination of Fruit Eze, fish oil and molasses. Her stools are usually formed but soft (like soft play doh), she has 3-4 movements a day and is clean in between. She occasionally needs a glycerin suppository. She has never shown constipation on her imaging studies. She does seem to have a tiny bit, but certainly not all, of her anal sphincter control. She is still breastfed and drinks expressed breastmilk from a cup. I am very nervous about switching to other milk (cow, goat) for fear of constipation, but she does eat some cow milk yogurt without obvious problems.

    Overall, we are very happy with where we are at right now. I don’t aim for runny diarrhea. I don’t think a squeaky clean colon is natural or necessary all the time. I do believe in preventing constipation and the fallout – more UTIs, megacolon, etc. I don’t know what the perfect answer is, or if there even is one, but my gut (pun intended!) tells me that less, especially when it comes to drugs, is more.

    • I don’t think you are late at all! I’m glad this thread keeps surfacing. It just helps to keep the topic going.

      It sounds like Caroline and Z have very similar results with the FruitEze etc. We have sort of backed off the molasses and fish oil with no difference in the, erm… output. 😉 We’ve never had a constipation issue really. So now I sort of save those for “just in case” occasions. We are also clean between movements, but unlike Caroline Z needs help to evacuate. Everything moves steadily down and into place, just not out.

      Tspar, that makes an interesting point. Z really has no sphincter control. And clearly she does not consciously move her bowels, but! If they are stimulated via the suppository, those “final push” muscles clearly work and everything moves on out just as it would for anyone else.

      Tracy, Z still nurses several times daily. I have not had issues with offering her some cows milk. I don’t give it as a replacement, but she does get some – on cereal for example. (If brother’s cereal has milk then hers dang well better have some too!!) We’ve been eating yogurt for ages with no issue. I’m actually surprised that would pose much change for you just because of live cultures etc. making the digestion of that totally different than just plain milk.

      Thanks for your input!

  • Hi all! Haven’t been in lately, Meredith had a quite extensive surgery on both feet so we spent two weeks preparing for, being in, and recovering from the hospital. I thought I make a comment on this thread because poop is my favorite subject! 🙂

    From about 14 months until she was 4.5 we had no idea what was “wrong” with Meredith, and from about 18 months on she was constipated. I just didn’t realize how badly. We tried every laxative type thing at walgreens, and then were put on Miralax by a (clueless, for many reasons) urologist. Then we moved up to Fleets enemas on the recommendation from a (clueless again) GI. Until finally I/we figured out all what her problems were and I hooked up with the BC board and learned about Cincinatti. I think Meredith’s basic problem is very sllloooowwww motility. If we skip one enema day, the next day we get lumps of hard coal. So her stool sits up in her colon getting sucked of water and then builds up and builds up. When she had the initial contrast enema at Cincinatti, I never SAW so much poop, and that is after having been on Miralax for a year and a half and thinking I’d seen it all with pooptastrophes.

    So for now, I’m happy with our bowel management routine. We do enemas six days out of seven. As long as poop is coming out and she doesn’t have UTIs or urine leakage, I feel good. I am doing the d-mannose powder too, but no other supplements. She’s on Ditropan for her bladder, and singular for allergies. Just having two medicines and one supplement is like heaven for us, because for a while she had like 6 medications and 3 supplements and it was very difficult to coordinate all that. We don’t do anything specific with her diet.

    Eventually I am interested in the Peristeen. Does anyone know if that’s being approved by insurances yet? I think there will be a time soon when she will want to manage her own bowels, as opposed to laying in the bathroom floor with either me or especially her father putting a tube up her bum. For now it’s ok, but … Or, conversely, if she decides she’d prefer the MACE someday, I am fine with that too. I definitely see potential advantages. But for now, I’m viewing it as I’m viewing pierced ears. I’m not putting unnecessary holes in her body unless she asks for it.

    • I love the pierced ear analogy! 😉

      I actually am hoping to start the Peristeen with Z early. As in, maybe 3 years old or so. I know that is not the norm, but I also know it has been done. I sure do struggle to find info on it though. There is a lot of chatter about how expensive it is, but I have yet to see a price tag associated with it. We are certainly not rolling in cash, but “expensive” is kind of relative to both what you have and what you want.

      I’ve only found one study online about it in pediatric use and it was for kids who did NOT have neurogenic bowel issues, so it was interesting but not directly applicable.

      I also read some older threads (2010 or 2011) where adult users were complaining that the balloon was bursting internally. I have to assume that has been corrected and I also think I read, but can’t be sure where, something about them designing a catheter for children. As we get closer I may reach out to them to get more details.

      What a frustrating journey for you guys! I’m glad you are at least traveling with a map now!!

  • So eve one year old currently on half a cap of MiraLAX and has 2 to 3 bowel movements a day. I bought molasses and was wondering the dose for a one-year-old? Also I had coconut oil at home and was wondering if I could use that instead if fish oil ? also found a bottle of adult capsules that contain the marshmallow root aloe leaf rhubarb root slippery elm and triphala it says adult take 2 a day do u think it safe to open capsule and give her some. If so how much it’s made by cleanse more renew life I found it at whole foods. I also bought jarro dophilus probiotic any thoughts ? Thanks so much

  • Hi Jennifer,

    I put the molasses in her homemade goat milk “formula”. But, to be honest, I’m trying to back away from molasses because I hate that it makes her milk sweet. I worry about her teeth and just developing a sweet tooth in general.

    If I were you I would definitely try that triphala product. I would just take the adult dose and divide it by 4 or 5 maybe? Here’s an article on Livestrong on it’s safety for kids:

    http://www.livestrong.com/article/323273-triphala-for-children/

    The only listed side effects are digestional issues, which is the effect we are going for in the first place.

    If I were starting over, I would try the following things in combination:

    oil of some kind (coconut or fish, probably)
    triphala
    muciganeous herbal combination (like the ones you list)
    fiber (organic cheerios & baked sweet potatoes are magic for us)
    hyperosmotic of some kind, I would do Magnesium and/or Vitamin C, but you could do molasses too

    For the herbal products, I would start with 1/5 to 1/4 the adult dose based on her weight.

    For the hyperosmotic I give my daughter 100 mg magnesium and 500mg Vitamin C per day. You can up those doses until her bowels get to where you want them to be. They are water soluble vitamins and the excess is flushed, causing looser bowels.

    Is the probiotic a child/infant probiotic? I’ve been told it matters, not sure why. But some probiotics have strong warnings against giving to children.

    Hope this helps. I hope it’s not overwhelming.

    Let me know if I can clarify anything.

    Tina

  • Oh, and Welcome to the Group! 🙂

  • Hi Jennifer,

    I just realized I didn’t answer your dosing question. So sorry about that.

    Doses have ranged from 1/2 tsp a day to 1 Tbsp a day depending upon the needs of the child. I just recently reduced Pooka’s dose from 1 Tbsp/day (which has been her dose since 6 months old) to 1/2 Tbsp/day. She is 16 months old now.

    So sorry I missed that question.

    Tina

  • I missed the dose question too and also how to administer molasses.
    Caroline is 18 months old and gets 5 mL (1 teaspoon) per day. I am also backing off of it a bit and adding in some magnesium (Natural Calm) – now her stools are a bit too loose, so I will be lowering my dose of magnesium (giving 1/4 teaspoon per day, will lower to 1/8 teaspoon per day now) and will also slowly lower the molasses.
    I administer Caroline’s molasses mixed with her magnesium, orange flavored fish oil, probiotics, vitamins, Fruit Eze and bladder supplements all with a syringe. We call it “medicine” and she takes it quite easily. We brush her teeth right afterwards due to the sugar in the molasses. She does not seem to have a sweet tooth any more so than I would expect a child of her age. I hope this helps!

  • Just to clarify – we are able to mix the Fruit Eze in with everything, but do need to add a little water to the mix (and we mix it vigorously to get the Fruit Eze into a suspension) so that it will be thin enough to go through the syringe. Don’t use a syringe with a rubber stopper, but use a syringe that has a larger dispensing hole – I find that the 5 mL syringes that come with most of the Children’s Tyelnol/Advil works great.

  • Thanks so much y’all r great I also ordered the fruit ease. I took those capsules back because it said for occasional use. I have the coconut oil already so I guess ill use that. Where do I get liquid magnesium and vit c from so I can give her that ? Ill mix the fruit ease coconut oil mag vit c and probiotic together ? The probiotic says for babies from whole foods its an organic store. Sorry I am new at all this. I guess I am nervous to give her stuff that doent say for kids

  • I hope I didn’t discourage you on the molasses. It really is magic for the bowels. I just wanted to be honest. I like Tracy’s plan of giving it once a day and then brushing teeth. Brilliant!

    Most magnesium is powdered. The brand I have seen mentioned most is Natural Calm, which you can get at any health food store.

    Vitamin C, I know there are different kinds. I got mine from our ND. MrsK, should she be concerned about what type of Vitamin C? Let me go look at mine. Mine is ascorbic acid.

    The probiotics sounds perfect.

    Don’t hesitate to ask questions. We’re here to help.

  • Oh I got cha the magnesium can take the place of molasses? That molasses is gross I tried it and gagged so did she. Poor thing. I googled natural clam magnesium and a bunch of sites sell it I am scared to get the wrong thing maybe Tracy you could tell me where u order urs and exact name so I know it’s safe. I am scared I don’t want to hurt her I have never given her probiotic either maybe I shouldn’t start everything at once. Maybe ill just start the probiotic Tom and contj is miralax until fruit ease arrives then start that for few days then back off miralax and add magnesium and oil? Oh yea what does the probiotic do ?

  • Y’all are wonderful thank u so much for all the info and the links r great. I will feel better using the exact ones y’all do. Thanks again

< Return to Community Forum

Leave a Reply