DIOS prevention options

[rubyroselee]

Hi everyone,

I've been struggling with intermittent DIOS now for several years. Previously I was using a cap of Miralax daily as a preventative. However, ever since I was treated with IVs over the summer, my bowels have not been the same. Now I cannot tolerate Miralax at all - I get severe gas and bloating with frequent BMs. Is there any alternative to Miralax for DIOS prevention?

Thanks

 

[kenna2]

I hate to tell you this but the other option is Golytely...I used to have to drink one a week until I was able to get regular again. I would suggest following up with a Gastroenterologist. I've seen a couple and it's helped.

 

[Aboveallislove]

A few ideas. First, I can totally related to that discomfort. DS has CF but I have GI issues and years ago a GI scripted it for me for regular use and I was more miserable. I tried again about a month ago and same thing. DS on the other hand does 3 doses as maintaince and since moving to that level (with GI blessing), his GI issues have disappeared absent a couple issues with specific foods. And he has no discomfort at all....augh, I can imagine this is very hard on your.
In addition to the higher dosing, though, we've also added 3 extra glasses of salt water throughout the day, more pears in his diet, and 2 cultuerelle pro health. We had a big impact from the cultuerelle at the start. I'm wondering if this started post-antibiotic for you if it might be related to a bacteria imbalance too. We've done a couple "resets" of the bacteria balance with a flagyl like drug, but frankly I think it was miralax and extra water that helped.
So I guess I'd suggest upping your normal water intake and adding culturelle, but also check with GI because you don't want to get backed up and my understanding is miralax (or golytye) are the only things that add water to the GI track. fwiw

 

[Rebjane]

Do you see a GI doctor as well? I do agree that the IV's throw off the balance of bacteria in the gut(and else where) The probiotic that my daughter is on was recommended by her GI. It is called VSL#3. It supposedly is stronger than Culturelle.

 

[Rebjane]

oh, and other recommendations for gas, bloating were no gum, no sugar free substitutes, no straws, no carbonated drinks.

 

[Rebjane]

Also, have you had a belly X-ray?

 

[Ank]

Hi.Last year i was treated for dios after that i had frequent stool almost 6 to 8. I was then started with With rifixamen to treat sibo.I also discarded old creon(as i did not kept them below 25 c) and bought new creon..to my surprise it realy held..I noticed that old creon it self was causing extreme gas and frequent stools..You should try treatment for siboSibo is not well discussed with cf.. My advice would be to get a colonscopy first ..to rule out ulcerative colitis and crhons diseases..U should also get tested for celiac disease..Apart from that should stop milk it can cause bloating. you can have yoghurt.Broad range antibbiotics can cause sibo..and probiotic dont help in sibofor dios ..miralax(poly e glycol) hs to be taken in small dose four times a day and not jst once a day..For dios Preventiv measures will b .1 Increasing creon if you have frequent stools and fatty stoolsmy doc told me to increase creon last year ,over time our pancrease also get damaged and more creon is required2 keep hydrated u can have electrol..miralax can dehydrate you3"check if antacid(proton inhabitors) helps . acid can decrease creon effect4 if creon dont works for you .then you can try zenpep and other enzyme ( simlar to creon)5 bit of exercise cn also help6 Increase fiber in your diet ..ya fiber is necessary ..the day i eat less fiber..i feel constipated..your diet has less fiber I strongly suggest to discuss sibo with your cf specialist GI docLast month i met two GI doc .one of them rejected sibo but other suggested sibo.and it realy helped ( also i purchased new creon ) i also decresed fat intakeI hope this help you

 

[Carol H]

HI... I was trying to send you a PM but error message would not got through? the message states we need to delete old messages saved first
did you get my message?

 

[windex125]

I need some info please Rejane you wrote no straws no carbonate drinks I've been drinking selzer through a straw for months now???

 

[Rebjane]

The no straws and no carbonated drinks are to prevent gas and bloating. I have heard this from GI docs as well as surgeons. The theory is when you suck from a straw you are bringing in more air into your belly. The carbonation in the bubbly water and soda can also get you bloated.

 

[rubyroselee]

Thanks everyone! I do see a GI doctor and will be following up with him in a couple months. I have also had an x-ray previously and it showed nothing. I was on probiotics for several months, but recently stopped those because my bowels were not improving and I wasn't noticing any benefits from it.

I think I have found a solution for me for the time being. I've decreased my Miralax dose to about 1/4 cap a day for now and that seems to be working. I am still experiencing a lot of gas, but it is not as severe now. If I get a flare up of the DIOS, I'll just increase it to a cap for a day or two to clear it.

In addition, I have also recently started on iron pills for low iron, which I know can also mess with your GI tract. So my problem may be multi-faceted.

I'll be excited to follow back up with my GI doc in a couple months and see what he suggests for me. In the meantime, I will just keep trucking along with this plan and hopefully it will work. Because man, that DIOS pain is the worst!

 

[Rebjane]

I am sure you know but iron supplements can be constipating. My daughter with CF loves fruits and veggies; in the past she has eaten dried fruit to get things moving, prunes and dried apricots. Now I buy dried mango and dried pineapple(which taste like candy)..My daughter calls them poop fruit.

 

[Ank]

Iron supplement can cause constipation and thus dios .Keep monitoring .