5 Infusions and lots of stuff happening

[Ozboz]

Hi guys I have had 5 I nfusions the last one was 7 days ago but still have lots of problems which are:
Horrible lower abdominal pain
Mucas still leaking
Bleeding with lots of like scabby fleshy bits
Drowsiness
Black pepper like balls but when you squeeze them white pussy stuff comes out of them
also pain in my penis and pain in and around buttocks
I spoke to my GI but all he said was to keep going with the remicade but I dont know bit worried bout the pain and blood and scabby/fleshy things coming out
and still have trouble putting off going to the toilet.

I thought I'd be much better after the last infusion but I have heard of some people taking up to 8 months for the remicade to fully kick in.

At the hospital they said if the remicade doesn't work they'll take my bowel out but I'm gonna do everything for that not to happen

 

[Catherine]

Welcome to forum, we are also from SE Melbourne. Still very new to crohn daughter only dx in January.

No experience with remicade.

Bumping your thread.

 

[David]

Hey Ozboz,

In addition to what you're doing, I'd suggest researching and discussing the idea of total enteral nutrition with your doctor if you think it sounds like something that you could do. That combined with the Remicade would be quite the powerful combo.

It's good to have you here by the way

 

[Ozboz]

well turns out that remicade is not for me I'm having side effects from it and will never touch it again its not worth the suffering as I'm having problems with it

 

[David]

That's too bad.

What's next, do you know?

*hugs*

 

[Ozboz]

That's too bad.

What's next, do you know?

*hugs*

I have a more natural approach lined up with diet and supplements