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First remi infusion on Monday

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Ulcerative Colitis
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Posted 11/20/2009 9:33 PM (GMT 0)
SO I am going for my first infusion on Monday....I am praying it works. The funny thing is that since I got the Swine flu my UC has been alot better. No blood and very little mucous but still lots of D. I hope that the Remi works and I feel 100% soon so that I can live a normal life and I have energy to keep up with my kids.


I also want to say thanks to all of you that posted positive things regarding Remicade...it makes me alittle less nervous.
Posted 11/20/2009 10:31 PM (GMT 0)
Good luck and I hope this works for your sake as well!
Posted 11/20/2009 10:32 PM (GMT 0)
Good luck! ;)
Posted 11/21/2009 12:32 AM (GMT 0)
     Good luck GLOVE.....I'll be thinkin about ya!!!!
Posted 11/21/2009 2:25 AM (GMT 0)
Hey, lotta people been having great results with the remi, and we will believe you will be no different....been a life saver for me only 2 weeks in....
Posted 11/21/2009 2:35 AM (GMT 0)
thanks everyone!!!!!!!
Posted 11/21/2009 8:28 AM (GMT 0)
WOO HOO!!! Finally GLOVE... I am so happy for you and DYING to hear how it works for you... We were pretty much in the same boat, so I'm hoping it works as fast for you as it did me.... I am going to call my GI and schedule my second infusion for sometime next week. I have no bleeding, but I'm starting to get more frequency and less solid poopie...Not bad mind you, but I can notice a SLIGHT change and I don't want to take any chances.. I never got my loading dose and it's been almost 5 weeks, so I'm sure after my next infusion I'll be back to "normal".. hee hee...
Posted 11/21/2009 3:51 PM (GMT 0)
Good luck GLove, hope all goes well for you! And yes Susie, call your doc and tell him that things are a-changin'! ;-) I'm glad so many people are feeling better on the Remi.
Posted 11/21/2009 4:36 PM (GMT 0)
Susie,

I can't believe it has been almost 5 weeks ...time flies...let us know how the second infusion goes. I am so happy your are doing better and you are tapering off the pred. I already started my taper and I am ok but the frequency has increased and my stools are quite loose. The Dr. told me to go ahead and start the taper if I want to. I just can't stand the moon face and swelling and I have gained 20 lbs cause I am hungry all of the time.
Posted 11/21/2009 5:27 PM (GMT 0)
Oh yea... can I relate to the moonface and weight gain.. lol.... I look at pictures of myself from a year ago and my face looks like a balloon now compared to then...lol.. it's all in my cheeks too... I still have issues seeing people I haven't seen in a while because of how different I feel that I look...

OH and I was thinking, about why your U/C got a little better after the swine flu... I wonder if it's because your immune system had something else to focus on besides your colon?? I have heard that before.. when some people get sick, their U/C clears up some since it's not only attacking your colon... Don't quote me on that, but I have heard that...

After my first infusion, I went from 4-6 bloody/mucousy poopies a day to 1 normal poopie each day.. now I'm back up to 3 or 4 and they aren't "kerplunking" that much anymnore...:( Man, I liked hearing that kerplunk... lol... I still have no blood, and no pain, but like I said.. gonna hit it now and not wait for the full 8 weeks to pass... So overall, I'm not dissapointed, I feel that if I got my loading doses like most people here have gotten, I'd be doing fine.. And, I still am really, the changes I have are slight...but noticeable.... at least my GI is working with me so all I have to do is call and he'll get me right in for infusion #2...

GLOVE, do you know if you are scheduled to get the loading doses? I'm just curious.. I'm so excited for you!!
Posted 11/21/2009 6:33 PM (GMT 0)
Ohh, I know, the moon face is the pits. It took about 6 months before I noticed it almost gone. I'm sending all my good vibes to you Glove, best to you on Monday. And Susie...love the kerplunk! ;-)
Posted 11/21/2009 7:07 PM (GMT 0)
Susie,

I am going to try to go without the loading dose at first because my insurance only covers 70% of each infusion so I am hoping to go six weeks after my first one. We shall see... I am glad to hear you made it almost six weeks...maybe I will have the same luck. I can relate to the anxiety of seeing people you haven't seen for a while....I feel the exact same way. I hope you hear the kerplunk again soon LOL :)

I have heard the same thing about the immune system having something else to focus on...maybe its true!

Thanks for the good vibes Lonie!
Posted 11/22/2009 3:02 AM (GMT 0)
GLOVE :)

My GI did say that he has MANY patients who are successful without getting the loading doses.. They start right off at 8 week intervals and do just fine. I might be able to make it the entire 8 weeks, but I'm feeling so good now I don't want to blow it.. lol.. I am also thinking that my changes could be diet.. I have been eating way more veggies lately and that could e causing it. but I'm not sure... I'm gonna see how I'm doing on Monday or Tuesday and if things don't improve, I'll call and get in hopefully this week for number 2.

I was feeling pretty good today so I took my horse and went Team Penning.. it was a BLAST!!! I posted some pictures on MYSPACE, so if you want to check it out.. let me know what you think... and ignore my FAT FAT FAT face.... I don't like it.. But at least my horse looks awesome!!! LOLOLOL...
just click on tthe link at the bottom of my signature and it will take you there!!
Posted 11/22/2009 2:11 PM (GMT 0)
Susie,
Could be the veggies for sure. They give me loose stools when I am not flaring. Wow I love the pics.What a beautiful horse. Looks like fun...your face looks better than mine. I look like I am storing lots of nuts in my cheeks for the winter LOL!!!!
Posted 11/22/2009 4:32 PM (GMT 0)
Thanks GLOVE.. that is my outlet.. Riding my horse is the best therapy I've ever had. My mind is COMETELY off myself and on the cows and my horse and by the end of the day, I am usually in the best mood and feeling awesome! Plus the people I ride with are the best group of people... all ages, young and old.. It was so depressing for me when I couldn't ride for sooo long because of my dang flare being out of control... But I'm thanking GOD now that I'm back in the saddle and I think my horse is happy too.. he just loves working cows..!! LOL

I didn't post the really bad pictures of my face.... LOLOL... , but my neck and chin have gotten so big that sometimes I feel like I'm chocking on my own neck.. Do you have that problem? It's like if I'm laying back and put my head up.. my neck literally chokes me and it's hard to breath.. Ooooooo I'll be soooo happy to get this prednisone out of my system completely and get my normal looks back... lol... I'm NEVER going on it again.. if Remi ever stops working.. My Colon's coming out. I'd rather go down that road than the PRed road ever ever again... hmmph!

Tomorrow's the big day!!! WOOT WOOT!!! I'm totally anxious to hear how it goes and to hear how fast it works for you... What time is your appointment so I can say a prayer for you?? I'll be looking forward to your post after it's over!!!!
Posted 11/22/2009 9:39 PM (GMT 0)
Susie,

I am geting a little nervous :( ....my appointment is at 2pm. Last one of the day. Can't wait to get it over with .

Yes I feel the same way about the choking feeling...it is weird isn't it? I hate my double chin. I feel a diet in my future if this Remi works. I am going to start eating lots of fresh fruit and veggies. I miss salads. Hopefully my colon will heal and it can handle a good diet.

I am ssoooooo glad you are doing better and tapering off pred.

I will post tomorrow how it goes.Thanks for your support.
Posted 11/22/2009 9:59 PM (GMT 0)
     Good luck tomorrow GLOVE!!!  I'll pray Remicade does the trick for you.  I tapered down to 30 mgm of prednisone today...amazing I don't have the moonface yet.  I had a formed BM, only one....there was just a tad of blood on the end but that could be from a hemmie as I inserted a cortizone suppository last night.  Doc said to still try to medicate that end.

     Hubby and I actually went out for an early dinner today.  I ate some salad but chewed it to practically pulp..lol.  Had roast pork tenderloin, mashed potatoes and cole slaw with orange sherbet for dessert....mmmmmmmm...foooooood!!!!  I have to be careful as the prednisone has been playing havoc with my blood sugar.  The FBS is ok but two hours after eating it goes up to about 180.  Can't wait to get off the prednisone!

Posted 11/22/2009 11:02 PM (GMT 0)
Hey GLOVE..

I understand about being nervous.. I was up almost all night before my infusion... I finally had to take a Xanax to go to sleep around 3:30am and had to get up at 7 to be at the hospital at 8am... I was outta there at 12:30 and felt really good till that evening when I developed a SLIGHT headache. I took 2 tylenol and that was enough to knock it out.. Other than feeling tired for about 3 days and a slight headache, I had no other ill effects. The headache was always able to be taken care of with a couple of tylenol..

When getting myinfusion, I had the nurses at the hospital infuse me REALLLLLY Slowly, and I probably will for my next couple of infusions, just for my own well being.. I brought my computer and a DVD movie to watch on it, and I have a couple of hidden object games on my computer as well and that was enough to keep me busy until it was over. Even with the benedryl they gave me, I was too anxious to relax enough to take a nap, so the computer games came in really handy... lol.. My Step-Daughter drove me and sat with me the entire time, she brought a book and was able to finish it.. I feel now that I will be ok to take myself... . All in all, it was a pleasant experience and I am looking forward to my next one....

I am still having a bit of discomfort and today, I felt light headed and dizzy and a bit sick, like I was sinking... right before a BM... That was about an hour after eating a plate of zucchini and tofu... cooked in olive oil... I can usually eat that with no troubles... So I am not sure what's going on yet... I will be calling my GI tomorrow to schedule my next infusion for this week... just to stay on top of anything that might be brewing in there.. lol...

Well GOOD LUCK tomorrow and post as soon as you get back if you feel up to it.. I'm really anxious for you and to hear how it goes!! I will be holding your hand in my thoughts!!!!

:) :) :)
Posted 11/22/2009 11:21 PM (GMT 0)
Christine,

Oh!!! I hope you get off the pred soon...it is terrible what we have to take to stop our poopies from taking our happiness.

Susie,

Thanks..I am glad to know you will hold my hand through this. :)
Posted 11/23/2009 8:02 PM (GMT 0)
Hope it went well.
Posted 11/23/2009 9:42 PM (GMT 0)
Waiting with baited breath...lol. Hope all went well today GLOVE. I was prayin for ya!! I had a formed BM today..only one and I was able to hold it till I reached my regular toilet...no porta pot...yippeeeee. No blood either. I am somewhat fatigued today though. Could be when I feel well, I become SUPER WOMAN!! I cook up a storm, clean, shop, etc.. Hubby is always telling me to take it easy. I guess I try to make up for the times I just lay and feel like crap. I do have insomnia.....hate to take that Ambien CR but the prednisone does that all the time. Maybe the fatigue is the residual effect from the Ambien. I go to my GI tomorrow and will mention that I feel somewhat tired. Guess he will order a blood test.
Hope you feel well. Post when you get the chance!!!
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