Christmas canceled by CD

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Terry in Virginia
New Member


Date Joined Oct 2007
Total Posts : 9
   Posted 12/26/2007 9:42 AM (GMT -7)   
I hope most of you enjoyed the holiday. That's my "good cheer" part of this post.

ANYBODY WITH REMICADE EXPERIENCE: Did it take more than a month to kick in? I had my first infusion 30 days ago today. So far, I've had some of my worst CD days ever during this past month--no sign of improvement at all. Any chance the dose is wrong, it might take more time, or it just ain't gonna work for me? Thoughts? I'm due for infusion #2 on Friday.

Christmas was canceled this year-- no visit to my Mother, no dinner with my sisters and brothers, no exchanging of gifts, no big turkey dinner --after all the shopping, decorating, wrapping, preparation for the bgi holiday....

..instead I stayed home in bed and in the bathroom with my "atypical" Crohn's -- constipation, cramping, general feeling lousy....same as every other day...

What do I want for Christmas in 2007? I dunno, how about.... Christmas! And of course an absence of symptoms for a few hours (hasn't happened yet this calendar year, though--worst year of CD since I was first diagnosed 12 years ago).

The presents are still in a shopping bag waiting to be delivered to my family. They presumably have presents for me too.

Oh, fer cryin' out loud, this sucks..... and I really DO hope y'all had a merrier time than me!

I'm not lookin' for sympathy--sorry for the *****-fest. Just gripin' out loud for the heck of it. Sometimes that's all we can do.....know what I mean?


Terry in Virginia

CD since 1995; # of meds I take per day: 7; # of meds that help my condition: 0
Humira--failed--severe allergic reaction, body rash
Remicade--zero results since I started it one month ago
Some other drug gave me pancreatitis....
Prednisone--let's not go there....currently on 25 MG, plus:
Asacol, Protonix, Dicyclamine, Miralax, Stool Softener,

tmlindsey
Regular Member


Date Joined Sep 2005
Total Posts : 78
   Posted 12/26/2007 10:16 AM (GMT -7)   
I've been on remicade for almost 4 years now. For me, it has been a miracle. I still have symptoms, but I can tolerate them. I take remicade every 6 weeks. When I first started though, I had my 1st infusion followed by the 2nd infustion 2 weeks later. Then 4 weeks later, I had my 3rd infusion. After the 3rd infusion, I began the 8 week regiment. After the first year, the doctor moved it to six weeks instead of eight. It took until 3 or 4 infusions for me to feel much better. I hope this works for you.

mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 12/26/2007 10:23 AM (GMT -7)   

I couldn't agree more Terry...vent away! I am so sick of this ludicrous, ugly, never-ending disease that all of us here have. I never, ever imagined CD would effect my emotional, physical, and mental well being the way that it has...it has changed every aspect of my life....work, family and social relationships, everything has been negatively affected because of this illness. If I didn't have to be strong I would just break down and cry most days, it just feels like it will never end, there will never be a period where I feel good again.

I did try to make the most of Christmas with my kids but I was having one of the worst flares that I can remember, it took double doses of hydrocodone and steroids to get me thru the day but it was sooooo difficult. Thank goodness my boys are 21 and 18, and they each had other obligations in the afternoon so I had yesterday afternoon to myself to rest (and cry). I managed to get thru the gift exchanging and whip up a quick lunch but all of this was done hunched over because my abdominal pain was so bad I couldn't stand up straight. But I was determined not to stay in bed all day, I just couldn't do that...for their sake and mine. So it wasn't the most exciting Christmas on record but we all got thru it.

I am so sorry to hear that you X-mas was spent in bed, you poor thing...to miss out on the entire family holiday you must have been sicker than a dog. I hope you are feeling better today.  

Anyway, sorry about my ranting...haha. We are all in this together, right? Thanks everyone for being such a fantastic support system!


Marci, 38 years old, Rockledge, FL
Dx with Crohn's disease March 2006, currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor, plus 3x per day heavy iron supplements for anemia


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 12/26/2007 10:51 AM (GMT -7)   
I'm so sorry to hear your Christmas was ruined! My Dr. started me on remicade in late spring. After the first dose, I had another 2 weeks later, then 6 weeks after than, and then 8 weeks later. Now it is every 8 weeks. I think I felt it working after the second dose. Please talk to your Dr! Maybe he/she will adjust the dose and dose spacing.

I really hope you feel better!

Terry in Virginia
New Member


Date Joined Oct 2007
Total Posts : 9
   Posted 12/26/2007 11:30 AM (GMT -7)   
Thanks to all for your kind words (and your experience w/Remicade).

I promise to offer up a more positive post for others as soon as I feel a little better!

Meantime, happy Boxing Day!

Terry in Virginia

reynoldi
Regular Member


Date Joined Aug 2005
Total Posts : 244
   Posted 12/26/2007 1:18 PM (GMT -7)   
why has it been 30 days in between your first and second dose? Infection issues? you should have recieved it at week 2, week 4 or 6, then week  8. you tend to notice remicade on the third dose. i find it odd that it has been 30 days between those infusions. mutilple doses are need to build up to a certain level, correct?
"If thou wilt be observant and vigilant, thou wilt see at every moment the response to thy action. Be observant if thou wouldst have a pure heart, for something is born to thee in consequence of every action." -Rumi-
 
CD for 15 years diagnosed at age 11(i get the crohns cycle)


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 12/26/2007 1:28 PM (GMT -7)   
Just my darn joints right now are almost ( not quite!) killing my Holiday spirit. I wish CD was a person, so I'd be able to beat the living *Expletitive deleted* out of him!

Matthew

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/26/2007 2:15 PM (GMT -7)   
hi,
happy "day after"...i'm so sorry it was lousy for you & that you were not able to do all you had planned.
last year for me, RA & Crohns ruined comletely Thanksgiving and Christmas. i cried for 2 days straight it was so upsetting.
this year, again i still was quite sick for thanksgiving & it was the worst ever.
but i made a promise to myself, i would never PUSH it...trying to live & deal with CD & RA? it's too hard to make plans...so much ends up in disapointment.
instead, for christmas this year...i made NO plans...kinda like a year off. no shopping no engagements no anything.
it was actually very nice.
stayed in all day...didn't have to leave the house for nothing.
some quality couch time with my hunny & that was it.
i think when we try to streach our selves into too many priorities...it backfires. especially when a person's in too much of a flare or too much pain.
but...christmas can be ANY TIME OF YEAR. that's how i have to do it...because it might not work out to be THAT DAY. so when you're up to it...you have your christmas.
cheers
erin
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation. MVP & Tricuspid Valve Prolapse. Kidney Stones (oh joy). 
Meds: Remicade 600mg Q3weeks; Intra-articular knee injections; 6MP; Mesalamine; Prednisone; Entocort; Meclizine; Azithromycin; Tigan; Reglan; LidoDerm; Diazepam; Diclofenac; Dilaudid; OxyContin. 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/26/2007 2:17 PM (GMT -7)   
oh, btw...i've been on Remicade for 14 months and i'm on 600mg every 3 weeks. initially post infusion, i do get some joint pain relief; but an actual increase in CD symptoms (mainly diarrhea).
it has helped a lot with the bleeding, that's about it.
still hoping it'll help with the RA
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation. MVP & Tricuspid Valve Prolapse. Kidney Stones (oh joy). 
Meds: Remicade 600mg Q3weeks; Intra-articular knee injections; 6MP; Mesalamine; Prednisone; Entocort; Meclizine; Azithromycin; Tigan; Reglan; LidoDerm; Diazepam; Diclofenac; Dilaudid; OxyContin. 


Dancerpeg
Regular Member


Date Joined Dec 2007
Total Posts : 43
   Posted 12/26/2007 11:09 PM (GMT -7)   
Merry Christmas Terry,
 I know what you are going through this christmas time and back in 2001. Right now my husband is bound to the house with being really sick with this disease and the only trips he makes out of the house is to the doctors. I had to quit work so I can take care of him. We are to young to be doing this but I help him out in many ways. When he needs something I'm their for him and the boys really didn't suffer this christmas because they want their dad back playing his guitar at church and at home. That's what I miss about this christmas. Not the present from him it probably would have been a stuffed animal and some mixed nuts, he's done that before. We still have along road ahead for us for his healing. Well Merry Christmas and a Happy New Year. May you be bless with good health in 2008.
 
Dancerpeg

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 12/27/2007 1:08 AM (GMT -7)   
Oh I'm so sorry, I know how that is. I've had a few Christmas' like that. One year I spent all night throwing up, and then spent Christmas day in bed sleeping. Even this year, I got up too early for my Crohn's (if I get up too early it's almost a for sure thing of feeling sick). Ate a Cinnamon roll for breakfast (big no no!) and then spent a few hours in the bathroom with D. Got to sleep for a few hours in the afternoon with the heating pad. Oh fun! I enjoyed the inbetween time though. Which I've become great at doing. Loved watching my son open presents, taking pictures. opening presents with my husband. Enjoyed our big ham dinner, that I slaved over the prep the day before. Even though my poor husband had to do most of the actual cooking and serving it that day. Did not enjoy the cramping pain I got after eating. But I'll take what I can get, gotta be thankful for the little things I guess. But I sure would have rather had a Christmas without Crohn's stopping in.

Then I got the guilt of the inlaws who don't get why I didn't want to drive 4 hours to their house, with their one bathroom and their other 7 guests all sharing it (not to mention all of them not being very understanding people)! No thanks!

I hope next year is brings better health and happier times for you! But know you are not alone!
~Jennifer
 
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 12/27/2007 4:53 AM (GMT -7)   
I am so sorry that your Christmas was spent like this BUT as ERIN has posted you can have it another day ............I know it is not the same I really do but with this DD NOTHING ever is ............

Hoping you feel better at least today .....


Take care

LYN
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LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 12/27/2007 6:24 AM (GMT -7)   
Just sending hugs,and hope you feel better really soon :-)

Tom1
Regular Member


Date Joined Mar 2007
Total Posts : 228
   Posted 12/27/2007 8:28 AM (GMT -7)   
I too am sorry that you had such a lousy holiday. In reading all of the above posts I remembered my years of misery. Just like you. Have you considered the alternatives? I mean, will an ostomy help? Changes my life for the better. I wish you well.

oldcrohnie
Regular Member


Date Joined Feb 2007
Total Posts : 123
   Posted 12/27/2007 12:36 PM (GMT -7)   
Sorry about Christmas - I can relate - I was admitted to the hospital on 12/23 and begged my release on Christmas Day.  We did our gift exchange stuff, and then the family all pitched in and made dinner - I slept - they ate all my favorite foods!  Bah humbug.  It does suck.  The worse part is - I'm the mom and prepared most of the food before I went to the hospital.  Dinner for 11 took place without me.  But, on the bright side - I was home with my own shower and toilet!!!! Yahoo. 
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