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Back to the drawing board

CarolinAlaska

Holding It Together
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 ("specialty-specialist") due to her hypermobile EDS diagnosis a couple years ago. In the meantime she developed fissures on and off and still has her other issues of mostly diarrhea with occasional hard stools, GERD that flared consistently after the 6MP stopped, pain/ worsening of symptoms when she eats - mostly intestinal spasms, and has lost 20 lbs again. Her new GI has decided to bring her back to repeat her scopes now that she isn't on the 6MP (since 10/2017?). I am hoping it will lay to rest the question of whether or not she has Crohn's. He says he will do the scopes himself "with a fine tooth comb" to check every nook and cranny. All this was discussed in December, and tomorrow is finally the day it will happen.
 

my little penguin

Moderator
Staff member
Good luck with the scopes
The back and forth is hard
Are they doing pill cam/MRE as well ?
I thought she was originally dx from an MRE ?
 

my little penguin

Moderator
Staff member
So if they only do scopes and her disease was only located in the small intestine last time how will they see it without a pill cam ?
I know a few members here with only indications of disease are on pill cam /MRE
Scopes are always clean (no disease there )
Tagging @Scipio
 
Sorry to hear about the weight loss and other issues. I hope the scope gives you some answers. I agree about also doing an MRE or pill cam, especially if the scope doesn't show evidence of IBD.
 

Maya142

Moderator
Staff member
I would definitely push for small bowel imaging if the scopes don’t show anything, especially since she was diagnosed using a pill cam in the first place! Her disease has been in her small bowel (if she has it), so I would think looking at her small bowel is really important!
I’m hoping for some answers for you with the scopes (and hopefully pillcam!). Was she ever diagnosed with gastroparesis? I know that kids with EDS can have it. My kiddo lost that much weight just from severe gastroparesis (well plus the Crohn’s but much of the weight loss was due to the gastroparesis. In the end, a feeding tube helped her gain and maintain her weight and she also takes a motility medication, which helps her a lot.
 
Location
San Diego
So if they only do scopes and her disease was only located in the small intestine last time how will they see it without a pill cam ?
I know a few members here with only indications of disease are on pill cam /MRE
Scopes are always clean (no disease there )
Tagging @Scipio

Yes, my Crohn's is confined to the ileal region and has always been directly visibile only by capsule camera endoscopy. Scopes were always and remain clean. If small bowel Crohn's is suspected I recommend a pill cam or at least a small bowel MRE.
 
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CarolinAlaska

Holding It Together
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.
 

Maya142

Moderator
Staff member
I would definitely do some small bowel testing, given that her disease was originally diagnosed by pillcam. You can't really know that she doesn't have IBD without looking at her small bowel. I would push for another pillcam and if that is negative, then look at other causes. Visceral Hyperalgesia is essentially amplified pain affecting her gut/internal organs. Have you ever considered a pain program? My daughter did one, and it really taught her a lot about how to live with pain - how to continue living a full life, despite the pain. But I'd rule out Crohn's first, because she had ulcers in her small bowel in the past, right?

Has she been tested for gastroparesis? I can't remember.
 
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