Feeling Defeated a Little

[Dery23]

Hi,

I started remmicade in August of last year so it's been about a year since I started. I really felt like it was working which it was but I finally was able to get an appointment in last week with my crohns doctor and she says my body has created antibodies against. This isn't something new for me since having crohns for almost 10 years now. However, she put me on a medication that will hopefully get rid of the antibodies and I'll be on that for the next couple to 3 months to see if it works. Keeping my fingers crossed. Not to mention it will also make my immune system even more so immunecomprimised on top of taking the infusions. She did mention too if this doesn't work then there is another infusion. However, I am just so exhausted from not being in remission since getting diagnosed with crohns for the last 10 years. 10 years worth of being in pain and feeling like you take 3 steps forward and then 10 steps back. Not only this but my diabetes has been going through the roof with the sugar probably because of my crohns. Either way I am just frustrated and stressed with all of this honestly. Just would like some people on here to talk to. Would be nice. Sending hugs.

 

[nofun]

I went through a very long (10 years+) period of constant flare, and only recently went into remission. I was lucky not to be in pain, but the constant exhaustion, low energy level, and being chained to the bathroom made my life miserable. I don't know what to tell you, and this is not an advice, but I just gave up at one point. Gave up emotionally and just accepted it the way it is. There was no stress and frustration anymore, just physical exhaustion. What also helped was trying different 'cure' ideas, diets, supplements etc. None of them worked, but provided some hope and the feeling of doing something to fix the problem.

 

[my little penguin]

Hugs to you
My kiddo has had crohns for 10 years as well
He has been on combo therapy (methotrexate and humira for over 5 years ) and now Stelara plus methotrexate.
He had an allergic remicade after 8 months .
The medicines work much better when your body isn’t fighting them (in the case of antibodies your body is fighting the med )
Combo has worked well for my kiddo (dx at 7 now 17 )
No extra infections all good
Hope the extra med helps

 

[Dery23]

Hugs to you
My kiddo has had crohns for 10 years as well
He has been on combo therapy (methotrexate and humira for over 5 years ) and now Stelara plus methotrexate.
He had an allergic remicade after 8 months .
The medicines work much better when your body isn’t fighting them (in the case of antibodies your body is fighting the med )
Combo has worked well for my kiddo (dx at 7 now 17 )
No extra infections all good
Hope the extra med helps

Thank you for writing. I'm 24 and I've had this since I was 15 so it's just been a bit frustrating and such. I've been on Humaira and it worked but stopped working and then was on methotrexate and got off of that a while back and then I did do Stelara as well but it worked a little longer but stopped as well. I've come to terms with this but when both diabetes and crohns it just gets even more so exhausting trying to make sure they both are doing okay. That's good to know and hear about your kiddo. It's always nice to read other stories.

 

[my little penguin]

Did they do genetic testing ?
Sometimes harder to treat crohns is mimicking other disorders .
My kiddo has crohns juvenile arthritis and a neutrophilic dermatosis (sweets syndrome )
Until we got all three dx pinned down
His crohns was difficult to treat (since we now know it was more than just crohns )

other treatment options
Cimiza
Entivyio
Ivig (case studies )
Ilaris (case studies )
Jak inhibitors (which we were told would be next steps for my kiddo if Stelara failed )

Chop has a DIRT (immune dysregulation team )
They can do a complete work up
I am sure other places around the country have the same
https://www.chop.edu/centers-programs/immune-dysregulation-program
Emory also does genetic testing

blue print genetics has a primary immune panel which looks at a large portion of the genes including kiddie crohns
We did a a few years ago for ds

 

[Dery23]

Did they do genetic testing ?
Sometimes harder to treat crohns is mimicking other disorders .
My kiddo has crohns juvenile arthritis and a neutrophilic dermatosis (sweets syndrome )
Until we got all three dx pinned down
His crohns was difficult to treat (since we now know it was more than just crohns )

other treatment options
Cimiza
Entivyio
Ivig (case studies )
Ilaris (case studies )
Jak inhibitors (which we were told would be next steps for my kiddo if Stelara failed )

Chop has a DIRT (immune dysregulation team )
They can do a complete work up
I am sure other places around the country have the same
https://www.chop.edu/centers-programs/immune-dysregulation-program
Emory also does genetic testing

blue print genetics has a primary immune panel which looks at a large portion of the genes including kiddie crohns
We did a a few years ago for ds

I've never done that to my knowledge. I know I have some sort of arthritis but haven't gotten tested for it yet. I'm sure I have other things as well possibly. I know when we found out about me having type 1 diabetes it made my crohns a little better but not 100% per say. Thank you for sending this along. I will be taking a look at it since I'm curious about it.

 

[my little penguin]

https://spondylitis.org/about-spondylitis/types-of-spondylitis/enteropathic-arthritis/
Arthritis associated with inflammatory bowel

my kiddo has type 1 which flares independently of his crohns just for fun