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Son with autism newly diagnosed with Crohn’s


Sat, February 16, 2019 3:50 PM

Hi all, I am new here and in need of advice and direction. My 28 year old son has autism. He is pretty impaired and not very verbal. In June, he began going to the bathroom, but seemed constipated. When he would go, there was blood and drs and I thought he might have a hemorrhoid, etc. Long story short, he had a colonoscopy in August and was diagnosed with Crohn’s...a shock to all of us. Apparently, his case is mild, his blood work is normal, colonoscopy findings with areas of inflammation and pathology indicate Crohn’s, and he has been put on Lialda. He is currently taking Uceris for about a month and 1/2 to get this flare under control. His behavior lately is different and I am not sure if it’s related to Crohn’s or his autism, he can’t tell me if anything is bothering him. Has anyone had a bad, uncomfortable, etc. reaction with Uceris? I am contemplating taking him off it, but don’t know if I should. His GI dr. says he really shouldn’t have this type of reaction, but I have no idea. I am also struggling with dietary suggestions as I have been told there really aren’t any, but I imagine that some foods can help... again, I am dealing with someone who can’t tell me. I am a bit overwhelmed and trying to get up to speed with yet another health related diagnosis. Any advice would be very appreciated. Thank you! 

FPO Marissa
Joined Feb 16, 2019

Fri, February 22, 2019 8:59 PM

Reply posted for Marissa.

I'm sorry you and your son are going through this. Diets can sure be tricky to navigate. I am dairy-free. It helps with my UC symptoms. My mentor suggests I aditionally should go grain-free because it has improved her own son's condition. Worth a read: https://paleofoundation.com/paleo-diet-autoimmune-disease/

FPO jenn718
Joined Aug 4, 2019

Wed, February 20, 2019 7:28 PM

Reply posted for Medusa.

Solidarity Medusa! So sorry to hear about your son as well. I wish we both could have stopped with autism instead of adding another diagnosis to navigate. Thank you for responding and I hope your son gets relief and remission from UC quickly...and relief for you as well! 

FPO Marissa
Joined Feb 16, 2019

Wed, February 20, 2019 7:27 PM

Reply posted for Medusa.

Solidarity Medusa! So sorry to hear about your son as well. I wish we both could have stopped with autism instead of adding another diagnosis to navigate. Thank you for responding and I hope your son gets relief and remission from UC quickly...and relief for you as well! 

FPO Marissa
Joined Feb 16, 2019

Wed, February 20, 2019 6:53 PM

Reply posted for KRiegel.

Thank you very much! I will look into both of these.

FPO Marissa
Joined Feb 16, 2019

Mon, February 18, 2019 8:49 PM

Reply posted for Marissa.

Unfortunately, Crohn's and Uc affect everyone's bodies differently, so there isn't one set diet that if perfect for each case, but there are a lot of different diets you can try to see what food work well for your son and which ones dont. I've seen a lot in this forum about the SCD, Specific Carb Diet that seems to be a favorite among a few of us. Here's a link to information about it so you can research it, if you want : http://www.breakingtheviciouscycle.info/

One diet I personally tried, that unfortunately didn't work for me but has worked for others is the AIP diet, auto-immune protocol. It's an elimination and reintroduction diet that is supposed to kind of reset your gut before you start reintroducing foods to see what your body can and can't tolerate. Here's a link to information on the AIP diet too : https://unboundwellness.com/the-ultimate-guide-to-the-aip-diet/

I hope you are able to find something that works for your son soon :)

FPO KRiegel
Joined Feb 4, 2019

Sat, February 16, 2019 6:04 PM

Reply posted for Marissa.

Hi, I've just joined here because my 22 year old son (with autism) has just been diagnosed with Ulcerative Colitis. He's been put on Pentasa to start with but we are waiting to see the IBD team (I'm in the UK so we have to wait for everything lol)
It's tricky when they can't tell you isn't it? My son is verbal but has no awareness of his own body or health and we were fobbed off for 18 months by the docs who thought his previous history of constipation was all that was causing his bleeding... and the fact he was in the loo 15 times a day (and night) was behavioural!!  My son never told us he had pain, or bleeding..we just realised he was in the loo virtually every hour.

No advice ..just solidarity. I hope your son is ok!

FPO Medusa
Joined Feb 16, 2019

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