2nd Remi loading dose this week update

[Clash]

C has been doing well since his first remicade treatment :ybiggrin:, a few bumps in the road but at this point I can't tell what is from the steroid, steroid taper, or CD. His appetite is monstrous on the pred. now and the cramps have all but subsided. He is dealing with some bloating and complains of heartburn and fatigue still. His GI nurse said his bloodwork looked really good last week but I don't have the exact numbers. She must be referring to the ferritin levels though because they were the only thing that had remained below normal the HCT/HGB had already moved up to the low end of normal last test. His WBC was raised but she felt it was due to the pred.
So I have my fingers crossed the remicade is working and the second dose goes well on Friday. It's a busy week, I am doing my colonoscopy prep today for colonoscopy/endoscopy tomorrow . Then we leave early Friday morning, 2hours, for C's remicade treatment! Hoping all goes well with both!

 

[Sascot]

Good to hear he is doing alot better. Good luck with your colonoscopy and with the Remi on Friday. Should be fine hopefully - the prep was soooo horrible when I had one last year, but I think I certainly felt nearly normal again as soon as I started eating again. Hope it's the same with you!

 

[DustyKat]

Good luck Clash! I hope C continues into positive territory...fingers, toes and everything else crossed...

:goodluck:

Dusty. xxx

 

[Clash]

Thanks guys! We really look forward to C's remicade treatments, they are in Atlanta so we let him pick where he wants to eat afterward. He can be moved to our local hospital after the loading doses but right now he says he likes having it at the kids lab, cutting out that 2 hour drive would be great but right now I guess will continue it til C is comfortable moving! He really does seem to be doing a lot better so why do I always have this waiting for the other shoe to drop feeling?
Sascot how did it go at the hospital?
Dusty, I've enjoyed David's articles from that book so now I have one on the way too! Of course, I'm not sure how good of a read it will be with out him translating medical to layman! Hope all is going well with you and yours!

 

[crohnsinct]

He really does seem to be doing a lot better so why do I always have this waiting for the other shoe to drop feeling?

Ah yes the fear of the other shoe dropping...hold on I asked mreinhard to include it in her book as soon as she figures out how to overcome it:ybiggrin:

Where can I read these interesting David articles?

Hoping things continue well for your son and that your procedure goes well!

 

[Clash]

You can find the articles under the books forum, I believe. He is posting reviews, summaries translated into layman's terms! Really interesting articles! When someone figures out how to fix that feeling please pass it along!

 

[momoftwinboys]

Hi clash. The books research area helps me keep my sanity. I do believe there are going to be more advances and discoveries. It gives me hope reading about different Research being done. Just wish it would move more quickly so we could all stop checking for those pesky other shoes.
David is amazing at putting technical things in an easy to understand manner. I have learned so much from his various posts.
Hope your son continues to improve.

 

[Clash]

It becomes obsessive, I read all I can about CD, I think it also helps me keep my sanity!
Just finished up with the GI, he is truly awesome and I'm really glad we were able to get an appt with him that first time so quickly. He fit us in today before C's Remi treatment just to see how C was coming along. He agreed that the weird effects C is having are most likely the pred taper and that C is responding well to Remicade! He said C's TI inflammation was severe and he hopes jumping on it with Remi will clear up the inflammation quickly hopefully avoiding serious scar tissue but that would be a wait and see issue. He did say that there may not be as much mucosal healing because he is on pred with Remi but overall he thought C was improving greatly. C has gained 21 lbs and doc feels a lot of that is true weight as opposed to pred bloating and retention. He acknowledged that the pred was giving him a ravenous appetite bit thinks absorption has improved greatly. So all in all a good visit! Now just waiting through infusuion, heading to C's pick of restaurant and headed home! I love the good days!

 

[Sascot]

Glad it's a good day! As you said - really worth enjoying every one of them.

 

[crohnsinct]

Awesome news! Enjoy the day and the peace!

 

[Tesscorm]

Great news! Enjoy the weekend!