Constipation

[Ratatosk]

DS had a stomach bug last weekend and when this usually happened he'd have very loose stools in the weeks that followed along with decreased appetite and some vomiting. This is the first time it's happens since being on orkambi or now symdeko. He recovered fairly quickly, but complains of dull stomach pain, feeling of fullness and harder stools. Basically we think he's dealing with a little constipation. I've been giving him milk of mag before bed. I don't believe he drinks enough water on a normal basis, so I'm encouraging him to drink more. Any other suggestions ---miralax?

 

[kenna2]

Miralax can help, and I know a lot of people do about about 2 cap fulls twice a day. However, you have to be really careful with it. If the powder mixed isn't completely dissolved, that can create a sludge that's going to back him up anyways. I had this issue, so I've gone to doing a jug of golytely once a month. I just pick one day and knock it all out and haven't had issues with constipation since. It's a bit extreme, but it works and for me it's a lot less work and I know it works every time. Also drinking a lot of water can help too. A quick way to increase his water intake it to get some crystal light or flavor packs (sugar free) that you can make a jug of or put in individual water bottles. My dietitian gave me this tip and I now go though about 6-8 bottles or water a day. I honestly can't tell you the last time I was dehydrated and I get mucus up so much easier now. I think it's a great tip especially for younger kids because flavor makes all the difference in the world. It honestly becomes addicting, but a good healthy addiction lol!

 

[Rebjane]

We use one cap of Miralax twice a day every day. One of the doses I mix with Gatorade zero. We also do Prune juice mixed with diet pepsi, every day. Dried fruit like apricots dried pineapple. Fruits like apples and pears. Lots of veggies. Encourage fluids. If it gets really bad I have given her MOM(she HATEs it). Or Dulcolax tablet over the counter. Has he had an Xray of his belly?

 

[Ratatosk]

It's just been such an incredibly long time since we've had to deal with something like this. Still stooling, albeit harder ones and stomach discomfort due to distention, at least until tonight when the mom kicked in. Last time he had a stomach bug it took him a couple weeks before he was back to normal. Meanwhile have stocked up on miralax and mom for next time

 

[LittleLab4CF]

This is just a thought, based on what I have been trying to resolve for the last two years and possibly three or four years. What is the status of DS's appendix? When I took a turn for the worse it began with epic nausea and increased pain seemingly manifested in the upper right abdomen.

This year has been worse but it finally settled in the lower right abdomen with referred pain in the lower right region of the back, directly behind the area of the appendix. Following up with my GI doctor CTs of the abdomen and pelvis revealed no change, and certainly no evidence of acute appendicitis. The symptoms are too similar to appendicitis which sent my wife and me on a medical literature search.

Statistically we don't have acute appendicitis, with the average population at 7% and the CF community somewhere around 1%. Our literature search hit paydirt. For openers, recent studies establish that the appendix isn't the worthless vestige previously believed, rather a little safe for our probiotic gut flora. CFers don't get any benefit because the lumen or small opening into the appendix is sealed shut with our famous gooey mucus.

The lining of the appendix has mucus producing cells that keep adding mucus that desiccates and makes the appendiceal wall resemble a pressure vessel in function but not often seen in a CT scan. Our literature review came up with a 2005-7 article in GUT describing the "diagnostic challenge" with appendicitis and CF.

It turns out we all have chronic appendicitis, almost. In autopsy of 51 CF patients showed 49 with appendicitis, that's 97% of us. Rather than blowing up with infection, the appendix turns into a very hard, and often painful condition. The symptoms of amplified nausea and bowel dysfunction are common with appendicitis. What drew me to this end, no pun intended, was the worst constipation in my 69 years.

I've been put on drastic medications for constipation and I have a date with a surgeon to remove it soon. It's astonishing to me that CF doctors are not informed of this problem. Add chronic appendicitis to your list of things to watch for when DS has constipation and diarrhea along with eating aversion.

Just a thought,

LL

 

[Ratatosk]

Thanks for your response. Something to keep in mind. He tends to take awhile to recover from stomach bugs. I've heard norovirus is going around. Fortunately he bounced back after a few doses of MoM