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08-04-2017, 07:35 PM   #1
Ladybug12
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Hi. I was wondering if anyone had had scopes show improvements after getting the inflammation under control. Thank you guys for your recommendations for the nutritional drinks. I think these have really helped.
08-04-2017, 07:41 PM   #2
my little penguin
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All of Ds scopes have looked perfectly normal
After starting biologics
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DS - -Crohn's -Stelara
08-04-2017, 07:52 PM   #3
Maya142
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Yes! First scope showed ulcers from her rectum through her colon and a red and friable TI.

Second one - we had big improvements - all the ulcers healed in the colon (her colon looked perfect) but slight inflammation in her TI (microscopic - it looked a little red, but no ulcers at all!!). That was on Remicade and MTX.

Then last year she flared again when we had dropped down to just Imuran.

The third scope showed that the inflammation and ulcers were in her TI mostly, a little in her colon. Rectum/left side of her colon was clear.

She is doing better now that we have added a biologic back, and I expect her to improve even more on Cimzia. I fully expect much better scopes next time we scope!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-04-2017, 07:53 PM   #4
Maya142
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Oh for nutritional drinks - we started out with Peptamen Jr. and later moved to Neocate.

If your daughter tolerates polymeric, Pediasure, Ensure or Boost taste best.

If you need semi-elemental, then Peptamen Jr or Pediasure Peptide. They taste worse, but according to my daughter, they're still "drinkable."

If she needs elemental, then Neocate or Elecare, which are very tough to drink. My daughter could not drink Neocate or Elecare at all.
08-04-2017, 11:16 PM   #5
Ladybug12
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Join Date: Jul 2016
All of Ds scopes have looked perfectly normal
After starting biologics
Thank you both for posting. My daughter was on the lowest dose of remicade. She had scopes done and I believe that the prep caused her to flare. The only drinks she tolerated were those mentioned here. Her medication was increased. However, she started showinging improvements after starting the peptide drinks. I am just hoping for the best. The last few months she has been pain free. I just want to say thank you to all of you who share your journey and knowledge. I appreciate you all more than you know. Prayers for better health for all these kids. Thanks again.
08-04-2017, 11:25 PM   #6
Maya142
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The prep might cause irritation and a flare - but biopsies will show if it's chronic inflammation and has been there a long time. If she had ulcers, that also indicates chronic inflammation, I think.

They will be able to tell if it's just irritation from the prep, or continued inflammation from Crohn's, which would mean you need to up her Remicade, probably.

When was she scoped? Have you gotten biopsy results back or talked to the doctor? How long after starting Remicade were the scopes?

I just want to make sure I'm understanding the situation correctly - are you talking about past scopes or future scopes?

That's wonderful that she is feeling better on the peptide drinks!!!
08-04-2017, 11:32 PM   #7
Ladybug12
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Join Date: Jul 2016
The prep might cause irritation and a flare - but biopsies will show if it's chronic inflammation and has been there a long time. If she had ulcers, that also indicates chronic inflammation, I think.

They will be able to tell if it's just irritation from the prep, or continued inflammation from Crohn's, which would mean you need to up her Remicade, probably.

When was she scoped? Have you gotten biopsy results back or talked to the doctor? How long after starting Remicade were the scopes?

I just want to make sure I'm understanding the situation correctly - are you talking about past scopes or future scopes?

That's wonderful that she is feeling better on the peptide drinks!!!
Her last scopes were done about 4 months ago. Her Crp levels decreased after she began the peptide drinks.
08-07-2017, 12:48 PM   #8
Optimistic
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Hi. I was wondering if anyone had had scopes show improvements after getting the inflammation under control. Thank you guys for your recommendations for the nutritional drinks. I think these have really helped.

Yes. First scope was at first flare/diagnosis and pretty much a nightmare of ulcers and inflammation throughout tract. Next one was clean to eye but showed microscopic inflammation at duodenum and ti, and then finally a scope with clear biopsies.

Has she had MREs?
08-07-2017, 02:18 PM   #9
Ladybug12
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Join Date: Jul 2016
Yes. First scope was at first flare/diagnosis and pretty much a nightmare of ulcers and inflammation throughout tract. Next one was clean to eye but showed microscopic inflammation at duodenum and ti, and then finally a scope with clear biopsies.

Has she had MREs?
Good afternoon,

She had a MRE prior to the scopes. The MRE showed improvements from the previous. However, the second scope showed more narrowing and she went into a flare afterwards. She started the peptide drinks and her crp levels dropped. Around that time medication dosage was increased because levels were low. For the past few months she has had no inflammation detected in labs and she hasn't complained of pain.
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