Traditional crohn's..

[my little penguin]

DS has always had constipation with only a handful of times in three years of watery D .
He takes miralax daily .
We have been cutting it down.
Since two days last week in a row watery d then normal stools.
Then today more watery d that woke him up at 5 am.

For those with traditional crohn's does this tend to happen often
Without a flare ...

GI knows about last week just not this morning and of course its close to the weekend .
I have a script for a stool test but he seems to only last two days then fine again .
Last fecal cal was less than 15 and all bloods are normal .

Ideas on the cause of the blips ...?

If it continues I have to call the Gi yet again but but sure what can be done since there seems to be no rhythm or reason kwim .

 

[Maya142]

Any chance it's a specific food? Do you keep a food diary for him?
Also, could it be MTX? I think someone mentioned their child has looser stools with MTX?

M is also weird - she started out with constipation and needed Miralax every day and now has diarrhea several times a day. I'm really confused by it!

 

[Patricia56]

Could be encopresis or overdose on the miralax if he's in remission and doesn't need as much any more. We used both benefiber and miralax as one made things runny/slippery and the other thickened things up so you didn't get diarrhea.

 

[araceli]

I give my son miralax only one dose when is needed and he goes to bathroom fine for two days and afterwards he gets loose stools for two days. Lately we found out that for my daughter lettuce is a sure way to have D, so it may be a food that was not in the list. I hope you find out the culprit soon.

 

[DustyKat]

Although the bowel habits of my two would not be considered normal in the broader context, what is normal for them doesn't change.

When you say you are cutting back on the Miralax, why are you doing that and by how much?
Under the circumstances of a non Crohn's person the first thought would be too much Miralax.

Have any new medications or supplements been added or has there been an increase of existing meds/supplements?

Is there cramping/pain and or urgency accompanying these episodes or is it a case of I need to open my bowels and it is loose and watery?

Dusty. xxx

 

[my little penguin]

DS has been on miralax daily since jan 2011.
Any where from 1/2 cap to 1 1/2 capfuls.
He was only able to wean off miralax while on remicade .
Once he started humira this hasn't worked at all.
We have had to vary the amount of miralax based on the amount of time since the last shot .
Second week prior to next shot more miralax is needed ( sliding scale ).

He recently added Mtx - today is the fourth dose so one month .
Last week when it happened we cut the miralax dose to 1/2 capful then stopped it until he had a normal BM per the GI instructions then once he had no BM for a day we added miralax back at 1/2 capful for a few days then lowered to 1/4 capful .
Not changing more than every three days .

He has urgency and stomach cramping .
Don't think he is constipated since prior to last week he has had his normal soft BM .
We have btdt before with him.

I don't think its food but haven't ruled it out either.
I think his motility is normally decreased and the Mtx is giving the humira enough of a boost that things are now moving quicker .
Just trying to get the miralax tweaked down slowly so his gut doesn't panic and stop.

I don't think its cdiff since it stops after a few days before it starts again.

Trying to avoid more blood work

 

[Patricia56]

Hate to say this but I would be worried that he dropping farther out of remission. Having diarrhea that wakes him from sleep would be an alarm bell for me. Plus this is based on our personal experiences.

When he was younger my son's main symptom was constipation. It didn't fully resolve until he was in remission on Humira + 6-MP. After that he never needed miralax where before he needed up to 6 doses a day plus stool softeners. This time when he flared it was diarrhea which he had NEVER had before.

Hope I am wrong.

 

[my little penguin]

Patricia
That is in the back of my mind but even when DS needed miralax last fall ( humira) a lot has horrible stomach issues fatigue etc his scope and imaging were clean .
But his arthritis had started to get worse - we just didn't know he had arthritis then.


Concerned about the morning BM but he has done this before without a flare .

If it continues. Well ...
Then I can't pretend

 

[Patricia56]

Any chance he has lupus? This can present in a lot of bizarre ways and can include GI and joint problems. It's really unlikely but it's the only other thing I can think of to ask about. However I think the GI symptoms from lupus are due to inflammation which I would think would show up on any imaging.

And of course there's the dreaded IBS diagnosis. So hard to tell when it might be that and when it's CD (based on toileting patterns).

Hope it stops today.

 

[my little penguin]

DS specialists( including Rheumo and gi) feel like he has enough things to check off a crohn's dx but feels there might be more going on.

All of them are watching things closely( he has 7-8 specialists).

 

[Patricia56]

Have they run him through the gamut of immune dysfunction testing? I don't know a lot about that arena but I know some people have posted that their child was diagnosed with various immune deficiencies that were either responsible for CD sx or making things confusing.

 

[my little penguin]

He has been under an allergist/immunonolgist since he was 16 months olds and has had a ton of tests.
Immunodeficiency was not an issue for him.
He is complicated and a work in progress .
For now the Gi just calls it DS's disease and assumes nothing .

 

[Patricia56]

Gotcha. Sounds like you are (as usual) on top of things. Sorry you have to endure another period of uncertainty like this. They are really hard to live through.

 

[Maya142]

There are blood tests for lupus but I think it's a diagnosis of exclusion. Fwiw both my daughters are ANA+ but neither of their rheumatologists think they have lupus. I'm sure your rheumatologist is watching carefully!

Hope the diarrhea is just a blip and nothing more.

 

[my little penguin]

Yep Rheumo is always two steps ahead ...
Since there is a family history of SLE as well.

Fingers crossed only one BM this am and nothing else .

 

[Farmwife]

How's your son now mlp.
I'm not trying to hijack the thread but we seem to be dealing with the same thing. Grace is having semi loose stools four to eight times a day.:eek2: which is unusually (unheard of) for her.
Just trying to put two and two together but keep coming up with odd numbers.:ybatty:

Have you figured out why yet?

 

[my little penguin]

I "think " it was the sautéed onions.
Only watery d on the 17th once then it stopped and so did his motility since I had stopped miralax .
Three days of miralax ( full capfuls ) later ( plus stomach pain) and I think we are get back to his norm . It took forever to get things moving again and soft .
With his prolapse things have to stay soft otherwise it gets irritated quickly then inflamed recital pain etc... .
I can cut back on the miralax once things stay soft for a few days .

His arthrits is still bad so we wait ...

 

[Maya142]

Glad the GI stuff almost under control!
Hope the MTX works for his arthritis SOON:ghug:!