DIOS? what is it exactly

[rubyroselee]

Hello,

My doctor mentioned that I may have DIOS issues, but I'm not quite sure what the symptoms of that are. Has anyone experienced DIOS and what does it feel like?

I occasionally get cramping in my stomach after eating and other times I get pain in my side/back unrelated to eating (both completely different types of discomfort), but I'm not sure if either of those are DIOS or not.

Can someone please explain the symptoms and how it's treated?

Thanks!

 

[Ratatosk]

DS had issues where he felt full after just a few bites. If he ate really well, he'd vomit hours later -- that was the extreme. He would have very loose stools -- what's able to slip thru the cracks around the harder stools.

As a baby, he'd get a very round tummy, wouldn't feel like eating and we'd know to start milk of magnesia to get him cleaned out. That's what worked for him. His doctor did discuss using miralax, mucomyst, go lytely, and other options if it became a major issue. A friend of mine's daughter is on maintenance doses of miralax because she has more constipation issues.

 

[beleache]

Hey Leah,

I had my first DIOS episode this past December. I have a high tolerance for pain so it is possible that I have had it in the past but got through it on my own.
I can tell you it is very painful, so much that I asked my son to take me to the ER & was admitted. It is poop that is stuck lol Thank God the dr. that was treating me in the hops. took my GI drs advice on how it should be treated & it worked ! No surgery Miralax & Mucomyst did the trick !

joni

 

[just1more]

DIOS is a cf-specific bowel obstruction, which it sounds like he thinks is causing you issues. Best way to describe is really bad constipation.

Cramping low in your abdomen (or possibly into the lower back), painful gas, puking if it progresses to a full obstruction.

Treatment would be things like laxatives, enemas, possibly stool softeners to help prevent.

Micah struggled with DIOS the last several years of his life, including one hospitalization that we thought was going to lead to surgery. Hopefully, with knowledge they can help guide you how to spot and address quickly.

 

[Printer]

Leah:

The way that it was explained to me is mucus is the cause of most CF problems. It is like a glue and among other places attaches to the sides of the colon. Stool then sticks to the mucus and builds up there.

By taking marilax on a daily basis I lost (no joke) 4 inched on my gut and about 10 lbs.

Bill

 

[rubyroselee]

Thanks for the replies. I still can't figure out if DIOS is what I'm actually experiencing or not. Once in awhile (maybe once a month or so), I get really bad cramping and bloating after eating something. My entire abdomen gets hard and these pains cover my entire stomach. For the longest time I thought it was a food allergy, but there's no certain food that causes it, which makes me think it's DIOS...but I'm not sure my symptoms are DIOS. The main reason I'm thinking that is because it's only once in awhile and then it goes away on it's own with no further symptoms until a few more weeks. Puzzling...

 

[Printer]

You may need to increase your enzymes.

Bill

 

[Printer]

Leah:

I have reconsidered my last two answers. I would suggest that you see Steve Freedman at Beth Israel. If you don't know who he is, google him. All the CF Doctors at Children's know and work with him. It is not suprising that, as you get older you begin to have GI issues.

Bill

 

[VAmom]

My son has been diagnosed with DIOS. His GI doctor has him do two capfuls of Miralax daily. If his stools become loose, he may reduce the amount of Miralax, but he is not to miss a dose all together.

His GI doctor also recommends that he drink a minimum of 60 ounces of fluid daily.

My son was hospitalized once when his small intestine was completely blocked, yet he had continued to have bowel movements daily.

 

[TreasureGoddess]

I second the taking miralax every day! When my son was feeling better and "over" his bout of DIOS type gut issues, we let the miralax go and BAM right back into tummy issues and pain, barfing, constipation, etc. On 1 cap of miralax daily for maintenance. Also ask your CF doc (or even better, ask a CF GI specialist) about going on amitiza. It's a itty bitty pill that helps pull liquid throughout the digestive tract and doesn't have the laxative effects of miralax and the others. My kiddo takes both daily.

 

[Ratatosk]

DS' issues were a bit more extreme as he had a mechanical issue -- adhesions from his orginal surgery as a newborn -- which caused a narrowing of his intestine. That caused his enzymes to not get to where they were supposed to go and eventually caused a blockage. Prior to that he would have the distended belly, would feel full after just a couple bites, if he ate well, he'd vomit -- sometimes hours later he'd vomit up undigested food. He ended up having to have surgery for the blockage -- doctor indicated it looked as if he didn't take enzymes.

After his surgery he still needed to clear the hard stool that had remained and they used go lytely and then mucomyst. The night before that cleared he had stomach cramps, hard distended belly and DH spent the night rubbing his stomach, said he could FEEL when a hardened piece moved threw. Next morning DS was able to go and go and go. Only issues we've had since then is if DS eats too many nuts, which can cause him to get stopped up.

 

[HisAngel]

Do you happen to know what the dosage on the Mucomyst was/is? Or what the normal dosing is?

 

[Aboveallislove]

This is entirely my "take" on it, but I think the is something besides "constipation" and DIOS. They talk about being hard to tell which one, but DIOS is supposedly the "location" of the stool. This is my take on it: CF constipation is not normal constipation and can easily and quickly turn into a blockage, whereas with normal constipation, it will almost always eventually pass. I think the stools are sticky and stick to the intestine walls and that that just keeps building up and up and up until it can't pass. And that at a certain point, enimas, miralax and milk-of-magnesia won't work if it has gotten too far. But maintenance of miralax with a quick dose of milk-of-magnesia when the buildup starts can clear. There are tons of academic artricles on the different between constipation and DIOS, but too me these all miss the point with CF that "normal" constipation isn't "normal" and must be treated aggressive. Just my take having a little guy with a DIOS (supposedly but now saying not sure it was) hospitalizaton and constant poop patrol to make sure it is not building up again.

 

[GlennyB]

Hi, I was on the forum looking up DIOS, and came across this. DIOS, is a version of merconium ileus. It is where thick sticky mucus blocks the small bowel, and this is why frequently those affected with DIOS vomit undigested food. Constipation is a large bowel issue. DIOS quite often affects the right side, due to the anatomy. As in that is the pain presents on the right side. Dilation of the small bowel on X-ray is often a way of interpreting the difference between DIOS and constipation. mucomyst is used as it breaks down the mucus. DIOS is very very hideous.

 

[Ratatosk]

Our doctor refers to DIOS as Meconium Equivilant

 

[SaraNoH]

Our doctor refers to DIOS as Meconium Equivilant

I've heard that before. A few years back I was hospitalized for an obstruction and they called it meconium equivalent since I had ileus as a baby, surgery and all. I'm glad I found this thread because this pretty much describes how I've been feeling for the past year or so but didn't know there was a name for it. I hope I can get a prescription for Miralax or something similar because it's the only thing that seems to help. It's better than that Golytely stuff..... eeeew.

 

[Ratatosk]

Miralax is now available over the counter. And I know some people who mix it with gatorade for a golytely equivilant. With DS, we were always able to use Milk of Magnesia when he first started to get that "feeling" and get him cleaned out.