D.I.O.S. (distal intestinal obstructive syndrome)

[kristenb]

Greetings. Anyone out there diagnosed with this less-than-pleasant condition? I was dx'd a few months back but probably have had the condition for upwards of 4-5 years.

My symptoms included extreme abdominal distention (though i do not always have this sign when I have a DIOS 'flare-up'), 6-7-8 out of 10 pain that can be described as high pressure and cramping (usually in the middle of my gut and the right side), and periods of no bowel movement for sometimes days at a time (though I have had DIOS flare-ups when i have been going to the bathroom only to find out that the stool had just been going around the stuff that will not move in my colon) and x-ray pics that show an unbelievable amount of stool in the whole of my colon.

anyone willing to share? my health care team informed me that not a lot of the cf community knows about DIOS, as it seems to be something that is popping up more predominately in the cf adult population and because we are know beginning to live longer,....they also said that a treatment protocol is rudimentary at best because 'we just don't know what's going to work for every individual'. this is reasonable but nonetheless frustrating.

thanks so much.

Kristen

 

[alluneedislove]

Thanks for the post. I think i am dealing with the same thing the last few days my right lower side had been killing me. When i do go to the bathroom it hurts, and are big balls of poop. ( sorry tmi) When this happens my belly looks like I'm 5 month pregnant. haha. So Kristen what did your doctors tell you to do when this happens? I have been drinking a lot of coffee to try and get it moving.

ps My angel is also named Eric <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

I'm not sure that at any age doctors seem to know how to deal with this issue. DS was 4 months old when we first dealt with the still stooling, distended belly and massive amounts of stool in the large intestine. At the time we were told we should deal with it initially with milk of mag. And if that didn't work there was a lengthy explanation of increasing enzymes, trying miralax, mucomyst, golytely, gastrograffin enemas....

DS is now 7 and I know when we were dealing with obstruction issues last summer everyone was just sorta guessing. Every doctor we dealt with had a differing opinion. Posts from others indicated similar issues and how a lot of times the medical community wouldn't take this issues seriously. One person indicated he was accused of just trying to get a script for a painkillers when he went to the er for relief.

I imagine part of it is that somethings work great for others. But it's frustrating, not to mention uncomfortable.

 

[kristenb]

Thanks Liza and Teri.

Teri, my experience has actually been almost exactly that of Liza's child (thanks you two, by the way, for writing in and sharing)--miralax, miralax, water, water, water, gastrograffin enemas (last hospital stay it took upwards of 17 bottles just to get things moving), incresing/changing enzymes, golytely until I couldn't get any more down (sometimes 5 and 6 and 7 jugs per hospital stay), accused of painseeking and have continued to be due to an extreme lack of knowledge by the medical staff about DIOS, confusion and miscommunication among the docs and definitely differing opinions among them.

Liza, the docs did, however, say almost exactly what you said-what works for others doesn't always work for everyone else-it's sort-of a crapshoot, if you will. They, too, seem to be learning how to treat/prevent this extremely uncomfortable set of symptoms.

Teri, I too, will look like I am 5-6 months pregnant when this happens. Please see your docs (I'm sure you probably will) and mention what you read on this website. I realize this information is anecdotal, but it's nonetheless real. While you may not have DIOS, it sounds as though you are 'backed up'and could really use some help. P.S. aren't we lucky to have our Erics! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Haaa!.

I will be thinking about you guys and wishing you well. Thanks again for your support. Where are you two from, if you don't mind me asking. I'm from Oregon--lived here all my life. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take care.

 

[regina65]

These are the symptoms I am having exactly . Pain in my right side and severe cramping in the middle of my stomach right around the belly button. I have been taking double doses of miralax 4 x a day for a while and I'm getting something out (mostly liquid) but it feels like there is something still clogged up. I am only drinking liquids for a day and a half to see if that helps to get it out . It seems like a cycle eat and get more bloated. Also I am not hungry much now ,used to eat like a horse , but this has been going on for about a year . So I am guessing this has been building. Also have noticed reflux has gotten almost unbearable for a while. Cant eat much at one time or drink much. anyone have any much suggestions as to what i can do to fix this. Have called the doc several times and she always says take more miralax. Well that isn't working so far have also taken ducolax (laxative not softener)last night and nothing. Did notice i was light headed last night. Even lying down I noticed it.

 

[kristenb]

regina,
keep calling your doctor. maybe even tell her what you've read here in the forum. it seems as though the docs are still feeling out how to treat this and what works best for whom. being this backed up can be serious; so, please keep calling. do you go to a cf center or see a private doc? if you are seeing a private doc i encourage you to make sure he or she is in contact with the nearest cf center so he or she is able to talk about your troubles with another cf doc. i really hope you are feeling better.

 

[Cherylwithone]

My DD has had the same problem most of her life. We did everything you could think of including being admitted every 4 to 6 weeks to clean her colon out. Then this wonderful doctor at Children's hospital Boston did a Appendicocecastomy(sp) ACE for short. She has a stoma that she puts a cathater in and flushes her colon that way. THis was done 3 years ago and has only be blocked twice since then. This was a life saver for her. This is something they do for people in wheel chairs with no feelings in that area of their body. We had a 50/50 shot that it would work and it did.

 

[GlennyB]

I hope you still check here! My daughter is 4 she had an ACE done earlier this year, to manage the DIOS. She was having to do oral golytely weekly before this. Can I touch base with you? It has helped tremendously.

 

[Printer]

I lost 4 inches in my gut and about 10 pounds.

Mucus functions as a glue and with food sticks to the intestines, in my case the colon. Stool then builds up upon itself, eventually creating a blockage.

I now use Miralax, one capful in juice once a day (I was told that I could use it 3 times a day if needed) as a maintainance.

As long as we produce mucus, we will have this problem.

Bill

 

[TreasureGoddess]

Ask your doctors about getting on amitiza (pulls liquid into digestive tract but works differently than miralax with no cramping), we do a capful of miralax daily for maintenance and more when my son starts showing more symptoms. LOTS of liquids, less pop and more water, all the usual stuff. One thing...we would stop the miralax daily dose when my son was feeling better and wham bam within a few weeks he'd be blocked back up to a really bad point. We've finally learned our lesson and take it even though he doesn't think he feels the benefits. Since making it a non-negotiable part of his medicine list, we've had much less troubles. Things do still cramp up and block up.

Also, try to make your mid-day meal the larger one or consume meat products then and not in the evening supper meal. Lighter foods later in the day seem to help with the slow-down as well. Good luck!

 

[GlennyB]

Thank you. We are on large doses of daily medications, including N-acetylcistine, movicol, flagyl, she also has a MACE, which we use to flush her bowel directly on alternative days. Every second week she drinks two litres of golytely to attempt to manage the small bowel. I was really interested in tips regarding the ACE surgery. Our cf nurse is really keen too, as its the first time the surgery has been done in Australasia for cf.