Sluggish bowels

iVillage Member
Registered: 04-07-2003
Sluggish bowels
8
Tue, 03-20-2007 - 1:12pm

The enuresis question got me realizing that maybe I ought to post a question about my dd encopresis here. I post on the encopresis board, but since it's a slower board, and since most people there aren't also dealing with AS, I'm wondering whether anyone here has any experience to help us. 12yo dd has had life long bowel dysmotility. The docs (GI specialists at Children's Hospital) are saying maaayyybe it's linked to AS, but they don't really know. Either way, they don't really know how to treat it. Dd cannot move bm on her own. It gets stuck up high in the gut, even if it's really soft and loose, and she cannot move bowels without lots of laxatives &/or enemas &/or other bowel washing solutions. The docs have ruled out physical causes for the dysmotility. There was a brief period of time several years ago when we'd completely weaned her off all laxatives, but within a few months the problem was back with a vengence. Does anyone have any experience with this level of dysmotility and know what to do about it? I removed dairy from dd diet a couple of months ago, and that hasn't made any difference. I haven't tried a gluten-free diet yet 'cus I honestly don't know what I'd feed my dd if I removed gluten from her diet (she's not nearly as picky/sensitive to foods as she used to be, but she still has limits to her diet).

Avatar for nutmegspice
iVillage Member
Registered: 03-27-2003
In reply to: hwife
Tue, 03-20-2007 - 1:52pm

Hi!

The suggestions about probiotics in the enuresis questions are good for everyone but especially helpful for anyone with intestinal issues.

She may be sensitive to some kind of food or not be able to digest it correctly. Sam was on the Specific Carbohydrate Diet for about a year and bowel issues are really common in people with ASDs. Pecanbread is a specific yahoo group and website for families doing the diet for their ASD child(ren) They're really helpful over there.

Here are some websites...

http://www.pecanbread.com/
http://www.breakingtheviciouscycle.info/

The diet wasn't the total answer for Sam, but it did help me figure out that food isn't the cause of most of his challenging behaviors (he didn't have a dx at the time.) It is a gluten free, grain free, lactose free diet. No starch foods are allowed at all, only easy to digest single molecule carbs - honey is the only sweetener allowed on the diet. We tried it mainly because I thought Sam might be sensitive to some kind of grain and it was more important that he be able to eat some kind of dairy versus rice (we were deciding whether to try GFCF or SCD at the time.) On SCD he was allowed cheddar and homemade yogurt. He hasn't been constipated since we tried the diet more than 2 years ago. Prior to that he was chronically constipated and used to hold his BMs for fear that they'd be hard and painful. It helped alot with his bowel issues but not with meltdowns, attention....etc. But it has helped some kids in that area too. He is more willing to try to go now and less likely to hold it.

Hope that helps and feel free to ask about SCD if you need some ideas of what foods Sam liked on the diet. He was 4-5yo at the time and adapted pretty well to it, but I don't think I'd be able to do it anymore - he's grown more picky over time!

Chrystee

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iVillage Member
Registered: 01-19-2005
In reply to: hwife
Tue, 03-20-2007 - 2:43pm

Your dd is older than my ds, so I imagine that makes things more difficult too. Did the GI docs suggest any behavior modifications to go along with the laxatives etc.? If they have really ruled out any physical cause, then maybe some kind of program is required.

Eric's problems were not quite as pronounced. Once we "unblocked" his original problem and got him moving, motilitiy isn't the issue. But, if we did not force him to sit on the potty for 15 minutes after lunch and dinner, I have a feeling he'd still be witholding and the vicious cycle would begin again.

Our GI's told us that about 15 minutes after eating, the bowels have a natural tendancy to move. So they said wait until then, have him sit for a minimum of 15 minutes, praise and reward for just sitting (no matter the outcome). Now it has become a habit and he almost always goes, no rewards necessary.

However, your situation sounds more complex. Are they sure she can really feel the urge? If nothing is moving, and this is chronic over years, I wonder if her colon is stretched out? They told us that was what had happened with Eric and that it would take time for the colon to shrink to normal size so he could "feel" when he had to go.

As for diet, we were GFCF for 2 yrs. before this problem occurred. The diet helped behaviorally, but didn't seem to help the bm issues. In fact, I think we substituted too much starch for the GF part, making it worse, possibly. After testing for a few things, our GI put Eric on a modified diet that is part GFCF and part SCD. Samantha outlined the SCD pretty well and the websites she mentioned are really good.

But I am wondering if her bowels are fine (ie., not too hard, not diarrhea) if diet really isn't the issue.

I wish I had more advice, but I just wanted you to know you are not alone with this problem. If I have any more bright ideas, I'll post them.

Katherine

iVillage Member
Registered: 04-11-2003
In reply to: hwife
Tue, 03-20-2007 - 3:17pm

I would give chiropractic a try. If there is a misalingment (very common) in the spine the messages that travel from the brain to the organs, muscles, ect via the nerves can either be too slow or too fast or garbled. Chiropractic has very good success with digestive troubles, bed wetting, ear infections, all kinds of things. When ever my dh gets heartburn & acid reflux he goes to the chiropractor. The girl who suffered from the hicups who was on the news recently was finally helped by chiropractic.

Samantha

Samantha
iVillage Member
Registered: 01-19-2005
In reply to: hwife
Tue, 03-20-2007 - 3:52pm

Wow, Samantha, that is really interesting. Thanks for posting that!

Katherine

iVillage Member
Registered: 06-03-2006
In reply to: hwife
Tue, 03-20-2007 - 7:03pm

son has bowel issues but i'm convinced it's a control/comfort issue. son (9) will only poop at home. if the phone rings or someone knocks at the door or the heat makes a funny noise he will stop pooping and not try again or a few days. i encourage fruit,raisins,juice and an occassional cup of coffee to help the movements. when i'm not expecting company i suggest he use the toilet. sometimes i put on loud music so he won't hear any distractions while on the toilet.

when he is on the toilet i need to remind him to flush several times or else the toilet clogs. he also needs help cleaning himself. when he was younger a warm bath would get the bowels moving.

this has been one of the more akward problems to deal with as sometimes son smells from holding in the movements or from not cleaning himself properly.

iVillage Member
Registered: 04-07-2003
In reply to: hwife
Tue, 03-20-2007 - 11:14pm

Thanks for the responses. I'm still not sure that diet is our answer. I've seen the pecanbread site before and tried a few changes, but it's hard to adjust dd diet. Our current dairy-free effort is causing much upset. Since it's been awhile, I'll look at the sites again to see what hopes we have of trying different diets. So far the dairy-free diet hasn't helped her.

I wasn't very clear when I said dd doesn't have a physical cause for the bowel problems. The doctors can't find a physical cause, but neither is it a behavioral problem. We don't know whether it's neurological or what. The docs are pretty stumped. She's had problems since she was an infant. It's never been a behavioral problem (control, withholding, etc) with dd, and x-rays confirm that there's no stool near the end of the rectum which there'd be if it was a withholding problem. Dd stool gets hung up at the top of the intestinal tract, but there's no reason for it that the docs can figure out. She's currently up to seven laxatives a day to keep her moving, but I'm afraid that while it's helping her, it's also part of the problem.

I'm curious about the chiropractic adjustments. An MRI showed no spinal problems (they did MRI to check for a tethered spinal cord), but is it possible that a slight spinal misalignment might not show up in an MRI? I'd like to at least try the chiropractic adjustments to see whether it provides any benefit. It'd be an easy enough thing to try, and it sounds like it'd be good for both her bowel & bladder problems.

I haven't done probiotics for awhile, but I'll push those again (she can FINALLY swallow pills, so I have a better chance of getting her to take probiotics she can swallow than those she had to chew). I've also started OMEGAs. With digestive enzymes, are they just called "digestive enzymes," or what do I look for?

Thanks for all your feedback. This is more new info than I've gotten from the docs in a long time.

iVillage Member
Registered: 04-11-2003
In reply to: hwife
Wed, 03-21-2007 - 8:07am

I don't think they are looking for minor misalingments on a MRI, just the big stuff like buling dics and other serious problems. The nerves coming off of the spine take only a very minor amount of pressure for their to be interference. They say only the weight of a dime.

For enzymes the a lot of kids with ASD's are using Houston's enzymes http://www.houstonni.com/ We use Enzymedica's digest and glutenEase http://www.enzymedica.com/ There is a great book about enzymes by Karen DeFelice. She also has a website http://www.enzymestuff.com/ and a yahoo group http://health.groups.yahoo.com/group/EnzymesandAutism/

Samantha

Samantha
iVillage Member
Registered: 04-07-2003
In reply to: hwife
Wed, 03-21-2007 - 6:43pm
THANK YOU!!!