Pain for a short time after eating

[Pilgrim]

So we're new to this experience. When H eats food or Boost for the past few weeks she has abdominal pain following the meal for 15 minutes to 30 minutes. It's become predictable. Not sure about severity but she often goes right to the couch to wait it out and I can see the discomfort on her face.
Anybody know the culprit? Crohn's obviously but wondering where.
Scopes a week away.

 

[Maya142]

Could be Crohn's in her stomach...or small bowel. My daughter was like that after she was diagnosed and her GI said it was the inflammation in her stomach.

The other thing that can cause pain after eating is Gastroparesis. But given that you think H is flaring, I'd suspect Crohn's.

It could also be sort of "indirect" Gastroparesis - inflammation can slow down gastric emptying which causes pain after eating. Once the inflammation is treated, everything should go back to normal (hopefully).

Really hope the scopes give you some answers :ghug:.

 

[Pilgrim]

Thanks so much Maya. I'm trying to read the tea leaves so I'm not caught off guard next week. She's never had great small bowel imaging.Last scopes were two years ago now and her stomach was good but I know with Crohn's that can change.
Not sure where we'd go with meds if Humira isn't working.

 

[Maya142]

If it is her stomach, liquids empty faster than solids. Easier to digest. So if she'll drink more Boost, that might help a little. Sipping slowly (versus chugging) might help. If she wants to eat, low residue foods and small meals (think very small - my daughter eats 6 small meals a day!) might help.

Has she ever been on MTX? I know she is on weekly Humira so they probably won't up that at this point.

The other option would probably be Remicade...

In terms of injections that can be done at home, you have Cimzia and Simponi but I don't think they'd be used before Remicade, especially on such a young kiddo. I do know that they have done trials for JIA with Cimzia and Simponi and both are routinely used off-label by our rheumatologist, but I'd imagine they'd want to try the approved (and very effective) treatment - Remicade - first.

Sending HUGS - I hope the prep goes smoothly. My daughter will be scoped too next week!

 

[Pilgrim]

Thanks!

The scope experience will be different this time as she's much more cognizant at 5 than she was at 3. We found a video that explained it simply for kids but she still has magical thinking so some of her questions are way out there.
I'll be thinking of you both next week as you work through prep. I hope there is only good news.

 

[Pilgrim]

Forgot to say she hasn't been on MTX yet or Remicade.

 

[pdx]

My daughter had similar pain around the time of her diagnosis, and the pain happened whether she ate solids or drank shakes. Her inflammation was all in her intestines, so I'm not sure why it would start right after eating. The pain stopped after she started NG-tube feeding, and then once her inflammation went down, it never came back.

Hope scope prep and scopes go well and give you some answers.

 

[Maya142]

pdx - our GI told us that with small bowel or stomach inflammation there could be pain after eating. M had inflammation in her terminal ileum but the rest of her small bowel looked good (based on her MRE and later, a pillcam).

In her case, her GI felt that it was the inflammation in her stomach that caused the pain after food (not sure how she knew that or why she thought that??).

 

[CrohnsKidMom]

This was one of my son's symptoms at diagnosis. Intense abdominal pain immediately after eating, gradually diminishing as food moved through his system. His Crohns is located in the small intestine.

 

[Pilgrim]

Thanks CrohnsKidMom, pdx, and Maya. Depending on what the GI sees it sounds like we should ask about an MRE maybe? We had a SBFT two years ago and it looked good. At that time her damage was thought to be located only in the colon. Her symptoms were different then.

 

[Maya142]

An MRE would be better because there is no radiation (and the image is better). However, I know she is young and lying still is hard, so that might be why they did the SBFT then.

Our Children's Hospital actually has movie goggles for MRI's and MRE's so that kids are distracted and don't move and then don't have to be sedated.

 

[JaimeM]

With my last bad flare that's what happened. Pretty much right after I ate I had pretty severe pain.. My crohns was very inflamed, and is located at my terminal ileum.

 

[Pilgrim]

Did you have a med change after the damage was discovered?

 

[JaimeM]

I did have a med change.. I went off cimzia onto azathioprine and remicade

 

[Pilgrim]

That's interesting because we just had scopes and for the first time she did have inflammation located at her terminal ileum. Previously it was thought to be isolated to the colon.

Thanks for answering and I appreciate the input.

 

[Maya142]

M just had scopes too. She has been complaining of pain after eating. I had put it down to Gastroparesis/Gastritis, but her endoscopy was clear.

However, her colonoscopy showed inflammation in her terminal ileum, cecum and ascending colon.

Some of the pain could definitely be Gastroparesis, but because the inflammation in her TI looked worst, I am suspicious...

 

[Pilgrim]

Oh! That is really interesting!

What will happen with her treatment?

 

[Maya142]

We're going to do Imuran levels and then see...Might need to up her dose.

She is currently on Entocort (and has been for a month) and will stay on it for a while.

She is on a biologic, but it only treats the AS, doesn't work for Crohn's. Her AS is finally getting better so I would HATE to have to switch. But we will see, I guess, after we have the Imuran levels.

 

[Pilgrim]

I'm sorry to hear that. My uncle has AS and is in pain a lot of the time. I can't imagine a younger person having to deal with it. I can't imagine the stress of having to choose which disease to under-treat. I hope you don't have to make a choice like that.

 

[Maya142]

We have discussed using an anti-TNF + her current biologic but the thought of two biologics scares me. However, we may not have any choice.

Just wish there were more (and better) options!

 

[Pilgrim]

:hug:

Sorry that hug is too smiley, but there just aren't words for that tough of a decision.

 

[pdx]

So sorry to hear about the scopes results, Maya. It's got to be so hard to balance treatment of Crohn's and AS. I really hope you find a way to get her to remission with both. :ghug: