urgent, Need some advice on my younger crohnie

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kimmidwife

kimmidwife

Joined
Sep 19, 2010
Messages
4,407
Hi all,
I need some advice. About 3 weeks ago my younger daughter with crohn's started complaint of stomach pain. Her doctor did labs and a fecal calprotectin.
He also started her on Budesonide, Metronidazole, and Bentyl for pain.
All her labs came back normal and the fecal call. came back yesterday and was also normal. He had her scheduled tentatively for a colonoscopy but now cancelled it due to all labs being normal.
However she continues to have really bad pain. She said she has constant mild pain and then gets waves of really bad pain. It honest seem to necessarily occur with eating as she has been waking up with the pain.
At times she is crying the pain is so bad.
we have been on the verge of taking her to the hospital several times but every time the doctors have said to try and manage it at home when we call them.
I don't know what to think what this pain could be with everything normal
should I push them to do the scopes or ask for an MRE?
She is on Humira, Zantac, and Mirlax for her maintenance meds.Her BM's are normal for her as she has the constipating type of crowns not the diarrhea type.
 
I would push for testing despite the normal results - at least scopes and an MRE.

If those show nothing, then I would consider a motility issue - those can cause a LOT of pain.

Sending big hugs :ghug:.
 
Thanks Maya.
I feel the same way. Have to push her doctor who still hasn’t called me back. I have a feeling we are heading to the hospital in the next day or so.
She is getting Humira tonight. Then I will see how she feels.
 
Lady Organic,
She is not feeling any better.
Farmwife,
We have not yet had her checked for it. I suspect she does though.
 
Im really hoping you have the chance to speak with the GI on monday. if no news, I'd go to the hospital as you think about. It happened to me a couple of times I went to the ER because I had different abdominal pains that I had not experienced before and was very worried. ER drs can do an overall check up, sometimes ultrasound and x-rays if they suspect anything as first steps.
 
Outside of checking for IBD causes. I would have her checked for gallbladder issues too...... Best of luck, hope it gets sorted out soon!
 
We decided to call the doctor first thing tomorrow morning. We are really trying to avoid the hospital if we can. I will update tomorrow.
 
What was her fecal cal?

The reason I ask is that my daughter's FC tends to be low (for a kiddo with IBD) even when she's flaring. For example, it was 120 a few months ago, but considering her lowest tests have been around 25 when she was doing REALLY well, we knew that there was inflammation.

120 isn't very high at all - in fact, LabCorp's range says it's "borderline" but because our GI knows M's FC can be very low when things are good, she took it seriously and upped M's dose of Cimzia.

I guess what I'm trying to say is that we watch the trend, not necessarily the numbers.

I would definitely call the GI tomorrow. I hope you get a call back quickly.

If she needs scopes though, and it sounds like she does, I would guess that it would be fastest to admit her to have them done ASAP. Otherwise you might have to wait weeks...
 
Finally spoke with the GI this morning. Her fecal calprotectin was not detectable. Her lowest prior to this ever was 200.
He thinks she might have some kind of infection going on he is sending a prescription for a new medicine I have never heard of to the pharmacy he said it is like a stronger form of flagyl. He wants her also to increase the Bentyl to four times a day. She is to take this new medicine for three days and if not better we will do an MRE.
 
I thought about that. Hopefully if it is a UTI this will clear it up. I keep asking her if it hurts when she pees but she says no.
 
Got the medicine it is called Allinia. I also am going to ask him to repeat the fecal calprotectin to make sure there was no lab error.
 
How are things going?

I have been there with both girls. My girls show IBD inflammation in fecal cal rather than blood labs so when Fecal cal is normal they suspect other things.

Abdominal issues are the number one cause for visits to the doc. There are sooo many reasons and it is very hard to flesh out the cause and even harder when you have IBD and the symptoms are exactly the same.

For my two we walked away with an IBS dx on top of IBD. Frustrating as they know even less about IBS than they do IBD.

I hope she is finding some relief and that you get some answers soon. I don't think a second FC test is a bad idea. Just to be on the safe side.
 
Forgot to update. We saw the doctor on Wednesday not our regular one but his partner who knows us somewhat.
We are repeating the fecal calprotectin. And we will see what happens.
 
MLP,
Nothing has helped. No MRE yet. I am going to call tomorrow and insist. I can’t take her crying on pain it is breaking my heart.
 
I just wanted to update. We did the repeat fecal calprotectin last week and are awaiting the results. Meanwhile she keeps on complaining about her stomach. I am hoping we get the results tomorrow.
I plan to call tomorrow and demand they do a scope or an MRE or something. It is not fair for her to keep going on like this with this pain.
 
Got the results of the fecal calprotectin back, it was still less then 16. So we have an MRE scheduled for tomorrow to see if we can figure out her pain.
 
Good luck figuring this out. Hope your little one feels better soon....

Just wanted to comment that UTIs in kids don't usually present with pain on urination--that's an adult symptom. While I think in your case it's more likely a GI issue than a GU one, just wanted to mention this point.
 
Thanks Sudsy,
We actually jut got home from the GI doctor. MRE was normal. We have a lab scrip to check for a UTI.
 
Glad the MRE came out clear but ugh on the not knowing. How is she feeling?

Ironically, IRL friend as a daughter who had this mysterious stomach pain. many doctor visits, testing etc and all they could come up with was, "maybe a cyst that burst and you just have to wait for the fluid to dissipate". I'll be darned if after a few weeks she started feeling better.

I know this is your field of expertise and you have no doubt considered it but thought I would mention it just in case.
 
Crohnsinstint,
She is only 9 so shouldn’t be getting cysts. The NP we saw this time had some ideas that the pain could be from trapped has because she has constipating Crohn’s disease. We are trying this new culturelle product that helps with regularity. She has had three doses so far and is complaining a little less about her belly but did start comloof some ankle pain which worries me.
She had her Humira today so I guess we will see how it goes.
 
kimmidwife said:
Crohnsinstint,
She is only 9 so shouldn’t be getting cysts. The NP we saw this time had some ideas that the pain could be from trapped has because she has constipating Crohn’s disease. We are trying this new culturelle product that helps with regularity. She has had three doses so far and is complaining a little less about her belly but did start comloof some ankle pain which worries me.
She had her Humira today so I guess we will see how it goes.
Click to expand...

When A had her appendectomy they looked around a little to try to determine if there could be another cause for her pain. We discovered she has a rather large cyst on her right ovary which the surgeon said was normal in young girls. I was a little surprised, figuring that only happened to older teens and women. It may be something to look into if you can't find a GI cause.
 

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