Change of plans - starting Remicade

[Twosons]

After 2 days on Imuran the doctor feels its not a good match for it. It was started after recommendation from the sub doctor who is not a Crohn's GI. He is a GI but deals with other issues. He was the on call when Ev's labs returned and based on what he saw he said Imuran was the better starting point. Now the GI we saw first as outpatient returned, read the labs and said Remicade is what Ev needs. We also heard about the surgeries to remove his colon and what to expect going that way. We were left with much to discuss and obviously are not going surgical. So Remicade it is...

 

[my little penguin]

:ghug: I know it's hard.
Did your new Gi run a TB test and check your child's chicken pox titers first ?

Otherwise it was an easy transition for DS .
It really really is working for him.
I hope you see the same success soon.

 

[Farmwife]

Hugs

 

[izzi'smom]

Good luck!! Hoping Remicade is the answer for you!

 

[Crohn's Mom]

Best of luck !
I hope that Remicade works wonders for a very long time to come

 

[Tesscorm]

Good luck with the switch!!! I hope remicade brings him a long, long remission!!! :ghug:

If you don't mind me asking, why did the crohns GI feel remicade would be better? I have no experience with these meds so I'm just wondering why he would want to switch without waiting to see if imuran would help?

 

[DustyKat]

Good luck Twosons! I hope Remicade weaves it magic for your lad. :hug:

Dusty. xxx

 

[DustyKat]

I see your earlier post now and see why they have changed to Remicade. Let the magic begin for your boy, bless him...:hug:

Dusty.

 

[Twosons]

Good luck with the switch!!! I hope remicade brings him a long, long remission!!! :ghug:

If you don't mind me asking, why did the crohns GI feel remicade would be better? I have no experience with these meds so I'm just wondering why he would want to switch without waiting to see if imuran would help?

Evan is refractory. His diseased areas have progressively spread since first scope in June. We've been told he is very severe and not to expect a miracle with Remicade. That's why we also had the very thorough what to expect with surgery talk. I hate Crohn's! I hate what's happening to my beautiful son but I've promised him that this is just a bump in the road and while he may have Crohn's , it won't ever have him. He's the strongest boy and has the biggest heart. I'm so very proud of him.

 

[Sascot]

Just wishing you lots of luck with the Remicade, I really do hope it works well. At the risk of asking something that has been mentioned before, has he tried EN? My mind is blank on that :shifty-t:. If not, it might be worth trying that at the same time as Remicade to give it the best chance of success?

 

[Twosons]

Just wishing you lots of luck with the Remicade, I really do hope it works well. At the risk of asking something that has been mentioned before, has he tried EN? My mind is blank on that :shifty-t:. If not, it might be worth trying that at the same time as Remicade to give it the best chance of success?

He did 40 days on EN and symptoms never improved. He was on 24hrs a day 100ml per hour using Peptamen 1.0. He actually had his only hemmorrhage and ended up hospitalized while on EN. Thankfully as fast as it started , it ended after a couple of hours. He's on iron so anemia wasn't a big concen. He dropped from a healthy 16 to a still healthy 13.4.

I hate Crohn's :voodoo:

 

[kimmidwife]

Good luck with the remicade! Hopefully he will have great success with it.

 

[my little penguin]

Hugs....
You still may want to peptamen just not exclusively but with food to make sure nutritional growth needs are met while waiting.
It has really help DS .
He is also in remicade

 

[imaboveitall]

V is likely to start Remicade and/or methotrexate soon as well.
She uses formula feeds as adjunct to any drugs, to ensure stable nutrition.

Just some hugs and understanding. She was very very ill at diagnosis and I am well acquainted with the feelings of watching these changes happen...horrible.
She is far sicker now than we thought she was. I know how you feel, believe me. :ghug: