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My daughter, now 22, is failing sulfasalazine due to low white count. She has already failed 6MP for same reason 3 years ago. Her rheumatologist wants her to start Humira soon for joint issues. What can we expect as far as side effects? Is it usually well tolerated? Also, does anyone know...

We did the scopes and got the biopsies back today. All normal. We are moving on in a nonCrohn's direction trying Linzess to help with visceral hyperalgesia and considering esophageal manometry for food and pill getting caught on their way down.

Only the scopes. Originally she was diagnosed from pill cam.

After moving to IL and seeing two new sets of eyes and having two sets of scopes that were negative, Jae's GI took her off of her 6MP all together when she was having low white counts from it, then pretty much wrote her off. We ended up eventually seeing a GI motility specialist...

My 20 year old has outgrown her pediatric gastroenterologist. We'd like an adult one closer to home. Can anyone recommend one near Peoria, IL, Bettendorf, IA, Sterling, IL? We'd be willing to go back to Iowa City if there is a good recommended one there too.

I'm so sorry to hear this. It sounds very frightening. I'm sorry she had to get so bad before she got someone who sould take her seriously. Jaedyn has a diagnosis of Ehler's Danlos now, but her specialist who knows EDS has moved out of state.

How is this going? Are you still doing LDN?

Sorry I can't help you, because I am at the same place as you. You may want to post on main general thread to see if you can get more visibility. How did your appointment go?

Hi. New here to the idea of LDN. I've seen others using it for years, but never took this path. My daughter is 20 now. She has Ehlers Danlos Syndrome, chronic joint pain issues, IBS (was diagnosed with Crohn's in Alaska, but here in IL they discounted that diagnosis and she's not been treated...

Jae won't eat breakfast either.

Sorry to hear it.

I hope she can find a sweet set of treatments to help again. What are they going to do about that sphincter?

Have they checked him for infectious causes such as c.difficile, giardia and the like? C.diff infections can act like IBD. Has he had a CT scan or MRI to rule out fistulas or blockages?

Yes it's crazy. All true statements. No one brings up g-tube but us. They promise a lot but don't follow through. Won't she still need the pump with a Mickey?

I'm so glad for her. I really pray this makes a world of a difference for Caitlyn.

A quick update on J. She is now officially off of all pred and 6MP. No maintenance meds at all. Yeah, I know, it's asking for trouble, but it is directed by her GI. With her EDS diagnosis and "clean" scopes and normal labs, the IBD team doesn't believe she ever had crohn's. Yes, she has...

That's wonderful!

How's A doing?

Yes, what age? J was does 6 bottles of Peptamen 1.5 and handles it really well even when she can't handle Ensure.

Wow! Sshe is one strong, determined girl!! Is she having much pain?