Sick daughter

[Maya142]

My daughter has mild crohns - we think! She was scoped in April and was found to have inflammation and a few granulomas in the terminal ileum. She also has inflammation in her colon.
She has been on methotrexate and Remicade (mainly for her juvenile arthritis, which she was diagnosed with a few years ago) for 2 months now and while her arthritis is dramatically better, she continues to have stomach pain and constipation.
Prior to the diagnosis she had NO diarrhea and NO bleeding. She now has diarrhea occasionally but no bleeding. She drinks 2 Peptamen Jr a day for extra calories/nutrition.
She has had four infusions of Remicade so far. My question is that if her arthritis (which is quite severe) has responded to Remicade, why is she does her stomach still hurt? She can only eat very bland foods now, but before being diagnosed she was able to eat everything!
I also want to know if she really has Crohns, given that she does not seem to be responding? The biopsy report did not say Crohns, it just said Colitis, but her GI is convinced it is Crohns.

 

[Hope345]

Maya,
I am sorry to hear that your daughter has already been through so much. It is all overwhelming.
I will tell you what I have learned and you can see what applies to you and your daughter:

Every person/child is different and how they respond to medications. Sometimes it is a bit hard for them to give an exact diagnosis but dont give up. If your Gi is convinced it is Crohns, it probably is. Get a copy of your daughters colonoscopy results and the biopsy: it tells a lot. I have read my daughters so many times and each time as I learn, it means more to me.

Our daughter didnt respond to the Remicade until we doubled the dose on the 8th treatment (1 1/2 years from diagnosis). She has now been in remission for 3 months.

Your daughters symptoms seem to fit into a flare right now, that could explain the increased symptoms. the constipation and diarrhea both can be typical. The Remicade can be starting to work, but may take longer than expected. I am glad to hear it is helping her arthritis.

Our daughter was in a lot of pain, bleeding, fought constipation and anemia clear up until the Remicade worked.

I am glad you found this site. It has been a true blessing for me and so many others. Please let us know how she is doing and let me know if I can answer any questions for you.

Julie

 

[araceli]

welcome to the forum. I am sorry about your daughter having both diseases. For some Remicade takes time to work. while others feel better after first infusion. I am not an expert or a doctor but I think the Crohn's Diagnosis is correct. I know that granulomas are only found on Crohn's and not on ulcerative colitis, also a lot of crohns is found in the terminal ileum. but if you have doubts, get a second opinion, mean time tell your GI about her pain, maybe the Doc. coul give her something else until remicade kicks in.
Just my opinion. Hope she feels better soon.

 

[crohnsinct]

Methotrexate can take up to 3 months to start working and Remicade can take a while also. Ditto to the above...everyone is different. Just because your daughter is not responding right away to a Crohns drug does not mean she doesn't have Crohns. Just that the drug therapy might need to be tweaked or changed altogether. I think it is probably a matter of giving it more time or tweaking dosage/schedule. My daughter was on prednisone to knock down inflammation while we waited for the Remicade to kick in. After 3months of steroids we decided to do a course of EEN (using Boost and Ensure) to get her to remission. After that and bringing her schedule down to 5 weeks and adult+ dosage Remicade kicked in and smooth sailing since.

It is weird that she had no symptoms before and is only now starting to have them. Did they start soon after scopes? I have heard that prepping for scopes and scopes can sometimes send a patient into a small flare. Perhaps that is what is happening.

I would call the GI and post them. I am sure there is something they can do to help.

Good Luck!

 

[my little penguin]

^^^ yeah that
DS failed alot of crohn's drugs
He had three different opinions and all stated crohn's
Remicade took a while to work for DS ( three infusions and then some)
Ditto on the granulomas .

 

[Maya142]

Thank you all so much for responding!
I guess I'm just in denial... Some things just don't add up. She has a very low fecal calprotectin (but it was done after her first 3 infusion), 26, but still has pain and constipation. I would like her to do EEN but she won't listen.
My husband thinks that if there is no inflammation, as the stool test showed, that we should let her eat anything. I'm trying to keep her on a bland diet since she still has pain. The dietician we saw was so no help.
Any suggestions? Do all of your kids eat normal food?

crohnsinct - she had pain and occasional constipation before the scopes, but no need for miralax every day. The constipation has gotten worse and she sometimes has diarrhea. She doesn't seem to be the typical Crohns kid but I guess from what I'm reading here there is no typical?
Thank you again!

 

[my little penguin]

Yep there is no typical
DS had constipation and rectal prolapse
Plus low fecal cal- hence the three opinions
When he was under control thanks to remicade
No stomach pain, nausea constipation etc.
We are working to get there again with humira.
But it takes time to figure out dose and schedule .
He is also on daily miralax plus soluble fiber in formula .
We did EEN but now supplement with EN ( peptamen jr )
To try and help with inflammation , weight growth fiber etc...

Hugs

 

[CrohnsKidMom]

Welcome Maya142! I don't have experience with Remicade, but my son is on Methotrexate and Prednisone. After diagnosis, but before he started meds, he seemed to have increased pain after eating dairy. We're pretty sure he's lactose intolerant. Maybe dairy is contributing to your daughter's pain?? But it seems odd that she didn't have the symptoms before the scope... Best wishes to you, I know this is a journey none of us want to be on.

 

[Tesscorm]

So sorry your daughter is going through so much!

Just a thought, is it possible she has some scarring or a stricture/narrowing that is causing the pain? This might explain the pain without inflammation?? Did the GI mention anything about narrowing? Did she have an MRE? The scope will not show what is going on in the small intestine (other than a bit of the terminal ileum); an MRE will offer an image of the small intestine.

:ghug:

 

[Maya142]

CrohnsKidMom- She is lactose intolerant but takes Lactaid which helps a lot.

Tesscorm- No, I don't think she has narrowing. She did a small bowel follow through but no MRE. I should say that she was Humira for three years for her arthritis, before is stopped working last summer. The stomach pain only started after she had stopped the Humira and before we put her on Remicade. She missed most of the school year because she was in so much (arthritis) pain. Her rheumatologist says she's developing Ankylosing Spondylitis, which seems to be associated with Crohns.

 

[Farmwife]

Hi Maya,
I'm a bit late to this thread.
My 4 yr old Grace doesn't fit the mold either. She also has horrible joint pains.
My heart goes out to you both. She suffers from constipation also when in a flare.
We have to use Miralax to get thing moving.

Hugs to you both.

 

[Hope345]

Maya,

One thing you may have already done that we believed helped our daughter while she was hurting/flaring was to remove lactose. We also continued on a fairly bland diet until her symptoms were gone. Now she have lactose and everything else (except popcorn)

There are also anti spasm meds that some have had success with as well.

You can also always get a second opinion on the results of the colonoscopy. Maybe another GI could take a look at it and see if they come to the same conclusion.