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New oral medicine to treat inflammatory bowel disease

This would be amazing, and the less immunosuppressing aspect is incredible. I am hoping this isnt a story that we read, and then hear nothing about for 3 years.

I get triggered every time we have to go for an infusion, and it starts days before the scheduled date.
 

my little penguin

Moderator
Staff member
@Jbungie
This is just an idea so far
They have not started clinical trials
So they do Not Know :
Any side effects
How effective it will be
What doses will be needed
If it can survive the stomach

so plan on 5 years at least for Adults
Longer for kids
Add in this is in the UK
So longer time once it gets to FDA for US

as far as anticipatory anxiety about infusions
Can you talk with your therapist on different tools to use ?
Is someone else taking your child to the infusion ?
Planning something fun for you /your child to occur after the infusion or during the infusion ?
My dh would plan “guys movies” during infusion with Ds
It was “guy time “
Action packed marvel movies Ds loved at age 7
Only him and my dh watched them together in the infusion center
Followed by fun eating out afterwards or other guy activity

infusions are much harder on parents
Emla cream numbs the arm for iv
J tip for iv
Or buzzy bee for iv
Otherwise a comfy blanket (flannel small with marvel characters for ds then )
iPad or DVD player

other thing to realize
Most kids “outgrow” remicade within a few years
Then you move in to humira which is injection
Or Stelara
 
@my little penguin Ya, I figured as much. I always appreciate your long term knowledge with all of this

He's fine with the infusion, absolutely zero issues. My wife and both go with him, I wouldn't make her go alone. I walk into CHOP and its like returning to the scene of the crime. Weird way to think about it, but that's how it feels to me. I hate pulling into the parking lot, walking thru (seeing kids), watching his weight, bloodwork results, all of it. I just want to get out of there, and even then it lingers. My therapist suggesting the same, maybe not going, I dont think I could do it. I think part of the issue is, I start to feel a bit normal, and that process is so abnormal. It feels surreal and insane, which is most likely because I've never experienced anything like it.

Going out to eat or something after may be fun, but we didnt leave the house much with the timing of Covid and diagnosis. Coming out of that a bit now, but he has gotten so used to it that it's more fun at home then if we were to eat out. He prefers my pizza from scratch to any other (we have a specialized outdoor gas pizza oven that gets to 900 degrees!) It took me a year and a half to even trust re introducing that pizza to him again. If you saw the absolute arsenal of electronics we have at home, your jaw would drop! We play outside too, and he always wants to wrestle, we are homebodies. I live for all of that stuff.
 
@my little penguin Ya, I figured as much. I always appreciate your long term knowledge with all of this

He's fine with the infusion, absolutely zero issues. My wife and both go with him, I wouldn't make her go alone. I walk into CHOP and its like returning to the scene of the crime. Weird way to think about it, but that's how it feels to me. I hate pulling into the parking lot, walking thru (seeing kids), watching his weight, bloodwork results, all of it. I just want to get out of there, and even then it lingers. My therapist suggesting the same, maybe not going, I dont think I could do it. I think part of the issue is, I start to feel a bit normal, and that process is so abnormal. It feels surreal and insane, which is most likely because I've never experienced anything like it.

Going out to eat or something after may be fun, but we didnt leave the house much with the timing of Covid and diagnosis. Coming out of that a bit now, but he has gotten so used to it that it's more fun at home then if we were to eat out. He prefers my pizza from scratch to any other (we have a specialized outdoor gas pizza oven that gets to 900 degrees!) It took me a year and a half to even trust re introducing that pizza to him again. If you saw the absolute arsenal of electronics we have at home, your jaw would drop! We play outside too, and he always wants to wrestle, we are homebodies. I live for all of that stuff.
Same here. I hate seeing my son's tests, weight, everything. It's like I have to sit here and take all the punches and act like I am not bleeding. Rinse and repeat. It's a very surreal state of mind. Sometimes I think this is all a dream or a simulation and we are put in an unpleasant mode. Its only when I sleep then this dream or game is paused.

I have no idea what food choice will give him inflammation. I don't trust lack of symptoms but again what do I know...
 
Same here. I hate seeing my son's tests, weight, everything. It's like I have to sit here and take all the punches and act like I am not bleeding. Rinse and repeat. It's a very surreal state of mind. Sometimes I think this is all a dream or a simulation and we are put in an unpleasant mode. Its only when I sleep then this dream or game is paused.

I have no idea what food choice will give him inflammation. I don't trust lack of symptoms but again what do I know...
100%. And the crazy part is, if I didn't know he had IBD, I would never know. That's what makes seeing bloodwork tough. I agree with @my little penguin that I need to let the doctor's tell me when to be concerned, but it's tough not to look.

It's paused when I sleep, but then I wake up and go...oh sh*t..I remember. I have to look at all the horrible crap going on in the world and go, well at least that's not us, which is an awful way to think. It also makes you more sympathetic to all those horrible things, which makes everything seen more imaginable.
 
100%. And the crazy part is, if I didn't know he had IBD, I would never know. That's what makes seeing bloodwork tough. I agree with @my little penguin that I need to let the doctor's tell me when to be concerned, but it's tough not to look.

It's paused when I sleep, but then I wake up and go...oh sh*t..I remember. I have to look at all the horrible crap going on in the world and go, well at least that's not us, which is an awful way to think. It also makes you more sympathetic to all those horrible things, which makes everything seen more imaginable.
Doctors care for so many patients and they don't really know the day to day so I am definitely on top of the situation (which requires me to have to know the painful truth) and I remind them (even my own care team) when they forget or miss dots of evidence. They follow a (general) protocol but it is not complete and I am here to fill in the holes. :)

I have to do the same as well. Constantly looking for events that can help me "feel" better. Definitely more sympathetic to others' misfortune for we are now one of them.
 
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