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Let's hope the 3rd time IS a charm!

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Ulcerative Colitis
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Posted 7/25/2011 10:07 PM (GMT 0)
Today was my daughter's 3rd Remicade infusion.  Her Dr. moved it up a week since she has been flaring a little cry    PLEASE hope for us that THIS IS IT!  I am so worried about my daughter, especially her mental health.  She has been flaring on & off since last November. I want SO badly for her to enjoy the rest of the summer and be able to be healthy and strong for when 8th grade starts August 31st :-)    There has been nothing normal about this child's life since November 2008 when she first got sick.  I don't think it is too much to ask for her to have a period of remission!!!! redface

Dr. also increased the dose from 300 to 500 (not sure if that is MG or what)  She is also doing Cort enemas smhair

Posted 7/25/2011 10:49 PM (GMT 0)
Want to wish you the best of luck w/ your daughter. Must be so tough for her to got through this at her age. Hope 3 is the charm. Please keep us posted and remember we are all here for you!
B
Posted 7/26/2011 2:20 AM (GMT 0)
I am hoping things turn around for her.
Posted 7/26/2011 3:21 AM (GMT 0)
God's speed with her recovery
Posted 7/27/2011 1:04 AM (GMT 0)
Thank you to the 3 people out of 97 who replied :) I really appreciate your good wishes :)
Posted 7/28/2011 9:51 PM (GMT 0)
Any news on your daughter? I hope she is feeling good.
Posted 7/28/2011 10:04 PM (GMT 0)
I haven't been here for a while and have a very little knowledge about the Remicade (since I have no personal experience w/ it). But really hope you daughter is doing better!
My thoughts and best wishes are always with the parents, as I just hope and pray that my kids won't get UC; I can deal with myself, how my body and mind respond to flare up and being ill for the rest of my life. But being a parent of the UC kid, just breaks my heart. So I'm with you and you family with all my heart. Hugs and lots of good wishes to all of you!
Posted 7/28/2011 10:18 PM (GMT 0)
All the best to you and your daughter! I feel for you, this is not something to see your child go through. She will get better, things DO get better!


Hugs,
RT
Posted 7/28/2011 10:56 PM (GMT 0)
Thinking about you and your daughter mustlovedogs--(I love that movie...I am a huge John Cusack fan) I hope she is doing well. Pls update us when you get a chance.
B
Posted 7/28/2011 10:57 PM (GMT 0)
I can't imagine having to deal with this at such a young age--your daughter must be a very brave girl. Best wishes that this infusion works and brings along a long lasting remission!
Posted 7/30/2011 11:49 PM (GMT 0)
I am hoping no news is good news.
Posted 7/31/2011 12:21 AM (GMT 0)
I can relate to be a parent with a daughter on UC. My daughter is 16 and has been trying to get in remission since Oct 2010. She just had her 4th remicade infusion. They also up the dose from 300 to 550 ml. Which is going from 5mg to 10 mg per liter. Confusing. She is titrading down on the predisone. From 40 mg to 30mg.........and down we go. I think we have worn out that drug and our finish with it. The prescription strength VSL is great because it is a 70 dollar copay(1 month) versus the over the counter price (355.00 i month). We are also using the enamas (messeline) spelling doesn,t count. But to see my daughter smile while we are tubing on the boat or ride in a horse show the day after her infussion is like the master card ad......PRICELESS!! I just wanted to let you know that there are parents that are going through the same thing......day after day. I pray that you will also have some good days along with many bad days. Sorry about the broken sentences but my wife usually does the typing.

_______________________________________________________

Remicade 4 infussions

Predisone almost done for good.

Azothriropene done

Enamas of every flavor.....messiline steriod

VSL I think is the least invasive

Asecol for good measure.

And assorted vitemins.

Posted 7/31/2011 12:47 AM (GMT 0)
Remikid,

I'm sorry you have a child who's suffering.

How much VSL#3 DS is she  taking? It's good you were able to get prescription for it.

Have you given any thought to trying out LDN?

Posted 7/31/2011 6:34 PM (GMT 0)
Haven't tried that one yet. But are having a good day so far. Had a formed stool BM with no blood. As far as the VSL twice a day. But it is the double strength compared to the over the counter version. I will research the LDN thanks.
Posted 7/31/2011 11:24 PM (GMT 0)
Remikid,

It's good she's taking the VSL #3 DS.

Yes, I think it would be good to research the LDN.

If you need some links, let me know and I will supply them.

Posted 8/1/2011 9:03 PM (GMT 0)
I hope all is going well with your daughter,  I know how it is to wait and hope,  when it's your child who is sick.    Just remember sometimes remicade can take some time to work. 
Posted 8/2/2011 1:37 AM (GMT 0)
Thanks for the support everyone!

It has been 1 week since Remicade #3 and 2 days since Methotrexate shot (8 mg).  Also using Cortisone enemas every few days.  Stools are still not formed -- is it wrong to expect to ever have a normal poop again?  Or as long as there is no blood, things are OK.  I don't know what to think anymore

Posted 8/2/2011 2:31 AM (GMT 0)
Hi there! Search Fecal transplant and read the 'i took the plunge' thread. And KEEP AN open MIND!! i know what you mean about worried about her mental health. im 17 and i have felt soo down at some points. I have tried everything but then i came across fecal transplant and i am starting it on 18th august. If anyone is really sick with UC it isnt that hard to get past the yuck factor of this procedure! its cured people and my dream is to get rid of this disease and not have to deal with flares for the rest of my life!! And i bet thats what all the sufferers want aswel! i have been emailing people that have never had a sign of UC up to 6 years later and still fine so it could be the answer!
Posted 8/2/2011 3:58 AM (GMT 0)
So you are recommending fecal transplant but you haven't done it yet? How do you even know it will work for you? I hope it does work for you..but try to get a 13 yr old to agree to that is not gonna happen!!!
Posted 8/2/2011 11:31 PM (GMT 0)
Yeah what im trying to do is help? Im doing it in about 3 weeks because so many people have been helped by it. And i obviously dont know that it will work for me but you gotta have faith..? Anyway i was only doing it because i feel for you and your daughter and most people with UC are willing to do anything. so sorry and good luck.
Posted 8/2/2011 11:59 PM (GMT 0)
I think no blood is a good sign but I always worry things will progress if I am having loose or frequent BMs. I don't think you're wrong to hope for "Normal" movements but I think it can take some time to get there. I hope the decrease blood is a sign that she's beginning to heal. You have to remember, she had a lot of inflammation in her colon and nothing is going to make an area that is inflamed healed instantly. I have been feeling well for a few weeks but I still have some urgency and looseness here and there. Hopefully in time, we will not have any symptoms. Please keep me updated. I am happy you're seeing improvement.
Posted 8/3/2011 12:07 AM (GMT 0)
Oh gosh, there is nothing for you to apologize for! I am sorry that I came off as rude...we have been dealing with UC for
almost 3 years and this year has been the worst. I admire your attitude and wish I felt as encouraged as you do....however with all that my daughter has been through and the fact that nothing has worked to put her in remission has pretty much squashed
my faith. I hope the FT works for you...I really do! But can you even imagine trying to get a 13 yr old to go along with that procedure? Having her sit for hours for the remicade infusion is hard enough. Again, sorry if I came off as rude. I appreciate you taking the time to reply
Posted 8/3/2011 12:25 AM (GMT 0)
Must Love Dogs,

I just posted my Long story about my u.c. as well. I just turned 30 and have had u.c. for over 10 years now. I took remicade for 4.5 years. It actually did wonders for my disease. It took a few infusions before it worked when I first started it, so have faith it could take some time. I got mine around 8:00 in the morning and by suppertime I could feel it, but it would make me feel like I had the flu for about a day. Then I would be better.  It also made my anemia go away, which I had all the other years before.  I could eat a lot more foods that didn't agree with me when I wasn't on the med too. Hope this helps and that she feels better soon!

 

Posted 8/4/2011 2:46 AM (GMT 0)
Okay thank you =] i know how you feel my hopes have been crushed like craaaazy!! every new thing you try you think is must be our turn for luck..? but nope! yyeah i understand it would be very hard to get her to do it but when i have done mine and if it works i will post you again and you could keep it in mind if worst comes to worst. when i heard about it i was like no way i would only do it if i was going to die but about a year later i have decided why not. its pretty gross but im over having no life as a teenager!! and i have only told family so friends will never know. I was wondering if you know what might have triggered her UC? i think mine was from antibiotics, bad diet and alot of stress!! But yeah i will tell you how my infusions go if you are interested. again goodluck with everything!!!
Posted 8/4/2011 3:09 AM (GMT 0)
CureUC:

my husband has Crohn's so our daughter was lucky enough to inherit the wonderful (NOT) disease from him. Ironically, my daughter was diagnosed with UC first and then my husband was diagnosed a few months later with Crohn's. Never a dull moment in our house!
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