Getting off the constipation/diarrhea rollercoaster?

[jess_mama]

I am hoping to get some advice to help my son, who is now 8 and has Crohn's disease. He has gotten into a very bad cycle of alternating between extreme constipation that requires mega-loads of golytely or miralax and then weeks of diarrhea as a result of the PEG. Please help us, if you have any experience.

Besides daily Miralax, is there any alternative to help keep bowels looser? I am trying to avoid it daily if possible due to it not being approved for long term use, especially in pediatrics. I have tried about everything I can think of, including Phillips Magnesium chewables, prune juice in his g-tube (about two cups), fiber gummies, senna in various forms (makes him very crampy), and epsom salt baths.

He has perianal fistula and a lot of pain I am sure when defecating, so he holds back if it is harder. His fistula is still open after nearly 18 months on Remicade

I am hoping to switch him to an organic blended formula in his g-tube soon, but for now he gets low residue Pediasure 1.5.

Any advice? He has been in and out of the hospital four times since January. Thank you!

 

[jess_mama]

Another thing to add: His CT scan on admission two days ago showed that he has new wall thickening in terminal and distal ileum. Can this be the beginning of a blockage? Stricture? Thank you for any advice!

 

[my little penguin]

We have a parents section
Here
Where you can get a lot of parent btdt experience

http://www.crohnsforum.com/forumdisplay.php?f=49

DS was dx at 7 and is 11 now

Is your son on EEN or partial en plus food ?
If he is on formula only it could be the formula ....
Peptamen jr is semi-elemental so the proteins are broken down and easier to digest than whole protein in regular formula ( even organic )which is harder to digest than semi elemebtsl

Some kids do better on amino acid based formula such as neocate or elecare .
These require even less of the small bowel to be healthy to absorb the nutrients.
Tagging Maya



Another thought would be miralax .
If you are only giving it when he is extremely constipayed that could be the issue for the cycles
Miralax shouldn't be changed in dosage more than once every three days
It helps to use a kitchen gram scale so you can find the right amount
10 grams is not enough and 15 grams too much for DS.

Also it may need to change as to how close or far from remicade infusion he is.
Miralax it self has far less side effects than the other meds DS takes
Yes it's not tested for kids but neither is half the scarier meds DS is on
Add in our kids are not like the average kiddos
Keeping things moving the way they should is a lot of work
DS also takes vsl #3 prescription strength probiotic which helps

We noticed if we lower the amount of peptamen jr from 2 shakes a day as supplmental en to 1 a day DS can't go at all even with miralax .
If it's more than 3 peptamen a day he doesn't need miralax as often as everyday .

Good luck

 

[Maya142]

My daughter is currently on Neocate. When she got her NG tube, we first started her on Peptamen 1.5 and she was nauseous and had a LOT of diarrhea. We then switched to Peptamen Jr 1.0 and it was better but she was still going 10+ times a day. We finally figured out that she needed a more broken down formula and switched her to Neocate - and then finally things stabilized. Her GI said it was unusual - most kids with IBD tolerate semi-elemental formulas like Peptamen Jr - but not unheard of.

When she was was first diagnosed and constipated we were told to give her Miralax every single day to avoid the cycle of constipation and diarrhea. As long as he holds it and has hard stools, you're going to be stuck in that cycle. Miralax will keep his stools soft.

We figured out that my daughter needed slightly more than a capful to have soft stools - any more and she had diarrhea, and any less and she didn't go at all.

Good luck!!

 

[jess_mama]

So it sounds like Miralax may be regular, added in daily, and we need to work out a dose that works for him. Do you still give the Miralax even if your kiddos are having diarrhea? This is where I have a hard time giving it, because I worry he is losing all nutrition. Do any of you add fiber and, if so, what kind? Thanks for responding.

 

[my little penguin]

I start out slowly with 1/4 cap then build up - that way no extra diarrhea
But if he has diarrhea I give it that day at night then watch the next day and cut the dose in half .
Depends on how many times a day as well
For my kid less than 4 times a day - then I cut his current dose in half and watch
Over 4 I stop it for a day if things calm down the next day then I start half of where he was.

Fiber will not work at all for my kid
Make things ten times worse
He does take peptamen jr with prebio ( type of fiber ) which helps him but nothing else .
Raw veggies even give him diarrhea anymore

 

[Maya142]

We did the same - too much diarrhea and we would cut the dose in half or skip it.

We tried fiber too - all sorts of vegetables but she had painful cramping and diarrhea with many (most, in fact) vegetables. She could tolerate oatmeal though, so she still has that. Soluble fiber is easier to tolerate than insoluble apparently. Certain vegetables, if well cooked, are ok.

 

[CrohnsKidMom]

My son takes Restoralax (same as Miralax) daily as well. He has always struggled with constipation. If he has diarrhea it is usually due to something he ate (like pizza at a birthday party), and I just ease up a little on the Restoralax the next day. If I stop it he's right back to constipation in no time. I hope you find the right dose to help your son!

 

[firemama]

Ask th GI if lactulose might be a better fit. My DD took miralax for many yrs prior to Crohn's diagnosis. Switching to lactulose made a big difference. It seemed to be less irritating for her.

Second the suggestions that miralax should to be given conistently and doses changed slowly. My non-crohns daughter has taken miralax for years. If she misses a couple doses for a sleepover, it takes several days for her body to recover.