this crazy life.. update on my boys

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myTYTY
Regular Member


Date Joined Sep 2007
Total Posts : 22
   Posted 10/30/2007 10:57 PM (GMT -7)   
Hello to everyone!
I have not posted in awhile. Life has been crazy!
Tyler had his capsule scope on the 8th of Oct. We recieved a call from the GI wanting us to return to Boise ASAP. He said that Ty's scope showed that he had a lot of stricturing and ulceration from the Jujenum through the Illiem(sp)
The GI called it sever stricturing and fistulising crohn's, and said that he had not been responding to his current meds(pentasa, prevacid, was on immuran,). We were already half way home and had to get home because we were moving... We moved in three days(nothing short of a miracle!) We put Ty on a liquied diet and uped his pred.to make sure nothing would block before we could get here. Then both of my son's and I came back to Boise and we have been staying at the Ronald McDonald house for almost three weeks.....
 
Good News: While we have been here they did a capsule scope on my son Isaac - NO CROHNS!!!!
yeah  
 
The Battle: Ty started Remicade, his first treatment went well. He gets his second one tomorrow. We started Immuran again... so far so good 8 days and no reaction!
We have started the pred. taper, and have started to notice some signs of flaring again. He is down to 10mg. Tomorrow they will do a bunch of blood tests, and then decide what needs to be done after that. 
If all goes well we may be able to go home in a week, and then come back in a month for his next remicade treatment.
 
I miss my family so much. But I am so grateful that we were finally able to find out that there were really big problems going on inside on him. The doctors says that he is a tough patient, not only because of what they saw going on inside of him and that he was still walking, but because his symptoms don't present in the typical ways.
 
Questions: how long before you know that remicade is going to work? if this does not work I don't know what is next... Anybody know?
 
Thanks for any input, and please forgive the rambeling... Nat

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 10/31/2007 3:58 AM (GMT -7)   
Hi Nat, Your son should notice if the Remicade is working after his 3rd infusion. I am also on Remicade
and Imuran these to drugs work good together. I have been on Remicade for over 2 years and I am
in remission. I do Remicade every 8 weeks.
TBW
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 10/31/2007 4:05 AM (GMT -7)   
I'm glad Ty is doing a little better and thanks for filling us in. And, great news about Isaac!
44 years old, newly diagnosed in September 2007 but symptoms for several years before that.
Medications: Pentasa, Prednisone (tapering), Prilosec, Synthroid.
Supplements: probiotics, calcium, vitamin C, vitamin E and a multi-vitamin.
History of hypothyroid (dx 2004), and gall bladder surgery (1997).
Single working mom to three wonderful kids, ages 9 to 15.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/31/2007 5:29 PM (GMT -7)   
Hi Nat so glad to hear from you and hoping the Remicade does it's magic for Ty I have been thinking of you all often. The rem. worked in about 3 or 4 infusions for my fistula now I will be going for humira they are going to put me in a clinical study for it but have not had the go ahead yet I am waiting for them to call . It is good you were persistant and had Isaac tested and that is wonderful news to hear about him. I bet you are looking forward to being home again but I am so glad TY is getting some help. Any questions you have were here for you and keep in touch .How are you doing now? Getting any rest ? Hope Ty is feeling a little better and you all have lots of love going your way. lol gail

KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 10/31/2007 5:33 PM (GMT -7)   
Glad to hear that your other son doesn't have it. You should see improvement by the 3rd dose, after that if he still doesnt improve ask his GI to up the dose. And then go from there. Good luck!
DX: Crohns in March 2007
Meds: Remicade

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