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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 7/7/2008 10:54 PM (GMT -7)   
I feel so defeated! I haven't posted much in a long while because I maintained a beautiful phase of remission while pregnant with my twin girls. Life has been particularly emotional with the loss of one of my daughters and her upcoming anniversary and my daughter's first birthday.

I am now seeing a new GI, which I'm VERY excited about! I'm now a patient of Dr. Christian Stone. I loved my old GI, but Dr. Stone is at Wash U in St. Louis and they are more of a teaching/researching hospital and we just decided that is where my care needed to be so we can stay on top of new drugs. He had a lot of different, interesting theories and has information on new studies that made our decision to double the Remicade rather then add Imuran (which was a controversial drug for my fertility doctor). They ran a blood panel on me, and now something is up with my liver?!?! I can't win! My SED rates are steadily increasing, and now they are bumping my Remicade to double the dose 10mg/kg. I feel so defeated!

Since yesterday, I've resorted to pain pills. I've taken maybe a total of 9 over hte past 48 hours, but I haven't taken pain pills since my c/s last August. And, because of that, they are making me sick. So, now I'm going at both ends, lovely! Again, I feel defeated! I know sometimes it's necessary, but I know you all understand as well...

I'm hoping the 2 pain pills (just Norcos) will let me get some sleep tonight.

Sorry, I just really needed to vent...and I visit here from time to time for new information, but I don't post often... eyes

I posted a lot in the beginning when it took nearly 5 months to get me under control, so I'm thankful for this group and recognize a lot of you still!

Post Edited (Kaycie) : 7/8/2008 12:23:33 AM (GMT-6)


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 7/7/2008 11:10 PM (GMT -7)   
I can offer you my wishes and hopes and dreams that I offer myself...but today, cant's seem to figure out what the are. I want to go back to work sooooooo bad, but I haven't been able to for about a year. The school year is starting....that is the most exciting time. Hey lets say we both shoot for the moon and ask for life long remissions, cause, its just.....until then, don't get to down on yourself for taking any type of meds...it helps, right? We all have enough baggage guilt that we should go asking for more...it just makes my body hurt more.

Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 7/7/2008 11:13 PM (GMT -7)   
Kaycie.... I'm sooo sorry to know of this painful anniversary that is coming up for you. I just cannot imagine how difficult this is.... no one can really know unless they have lost a child themselves so I cannot pretend to know your pain....but know this sweetie....I am definately keeping you in my prayers. I pray that you will be feeling better soon , very soon...and if not that you have some respite from this DD from time to time....I pray that you are able to get some rest.... I pray that you will find comfort in your beautiful daughters first birthday even tho it will be bitter-sweet....every joy comes with its own sorrow.
You darling girl.... I hope this new DR. finds the right combination of meds to make you better really quickly and that your liver settles down. Life is sooo hard sometimes. You come and vent to us whenever you need.... it sounds like you may need a little support for the next while. We will be thinking and praying for you so please keep us posted.
Love and prayers,
Mary
51 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.,RLS, arthritis
 
 


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 7/7/2008 11:23 PM (GMT -7)   
THANK YOU BOTH!  It means the world to me.  I have such anxiety with I take pain pills, because I just don't take them.  I'm surprised they didn't kill me when I was first dx because I was OD'ing on them without my knowledge.  I was following doctor orders, but they had NO idea that I went through an entire bottle in less then 3 days, and that's when they admitted me.  I had to be on them for about 3 months as I had a huge abscess that got lanced and drained for a good 5 months.  I had to wean of the pain meds...
 
Marie-Claire - Your words mean the world to me.  Yes, I need the support now.  I've had to have my mom take my daughter for the past 2 days and that is my main reason for defeat.  All I ever wanted in life was to be married and have a family..and I got that, and for that I am blessed, but no where did I imagine THIS would be my life.  Obviously, my daughter's loss is not causing my Crohn's, but it's certainly not helping it.  My old GI (who is a great dr - just not as up-to-date as Dr. Stone) said I acted typical of a post pregnancy Crohnie.  Lovely.  He said it's normal to maintain those good hormones and remission for a few months and then it rise.  It's been rising since January, slowly, but surely.  I'm nervous about running out of medicine options, but Dr. Stone reassured me there are far more medicines on the market now.  Dr. Stone also told me the doubled Remicade could last 2 months or 2 years or longer, we'll never know.  I try not to focus on the "what ifs," but with my past it's been hard.  We're still hoping to do a frozen embryo transfer in the fall, and all of my doctors think it's reasonable, but I'm worried it's not.  I have a treatment this Thursday, so I'm hopeful the double dose is all I need.  In the meantime, I wait in pain...I haven't felt this way in a VERY long time...
 
The pain pills have yet to knock me out, that's VERY odd.... going to play some pogo games online.  That always seems to wear my mind down in times like this.
 
Thank you all for the kind words...I need them!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Remicade - Next infusion - July 10th - new dose - 10mg/kg
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 11 months old


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 7/8/2008 6:27 AM (GMT -7)   
You have been through a lot and my heart goes out to you. If it makes you feel any better the docs at Wash U rock. My insurance changed a few years back but up until that point all my docs were located there. In over 10 years I never had a bad one--very compassionate, informative, etc. I hope things get better for you soon.

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 7/8/2008 6:50 AM (GMT -7)   
Sending a big hug(((((((Kaycie)))))))).
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/8/2008 7:15 AM (GMT -7)   
(((((((((((((( Kaycie )))))))))))))))

Prayers, hugs, and . . .

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 7/8/2008 10:59 AM (GMT -7)   
Hi Kaycie Hope you get to enjoy your little's birthday. The first of evertything is the best and don't feel defeated because you sent her to your Mom.s I bet they are developing a great relationship good for both of them .Where is your CD at? I had a large abcess too and know it isn;t fun. Mine was abdominal. Hope you can get your pain under control before long. Your Dr. is right about meds so try not to stress. Have you made plans for your daughter's birthday I can remember it wasn't long ago I was making a cake for mine teens first .time sure goes fast.Does your GI know you are having so much pain and vomitting? lol gail

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/8/2008 11:08 AM (GMT -7)   
((((Kaycie))))))
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


potty pooper
Regular Member


Date Joined Dec 2006
Total Posts : 375
   Posted 7/8/2008 12:28 PM (GMT -7)   
Hi Kaycie

I am so sorry about the loss of your daughter. I can truly say I understand your pain, because I lost a daughter at 10 mos old way back in 1977. She was born when my twin girls were 4 years old, and the pain of her loss is still with me today. I was blessed, 11 years after losing her, with another daughter, who will be 25 tomorrow.

Although it will be hard, try to concentrate on the happiness of your daughter's first birthday celebration. She must bring a world of joy into your life. And, being a grandma myself, I'm sure your mom takes pleasure in watching her.

I understand your feeling defeated by this DD. I've been there more often that I'd like to admit. (been suffering for over 40 years) I hope your dr finds the right meds to help you.

Sending you prayers and best wishes. Happy first birthday to your precious daughter!

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 7/8/2008 12:34 PM (GMT -7)   
Well, obviously that doctor did not know what he was doing when he gave you that rx! Sheeshh! Usually pharmacists advise you on new scripts too, why did the system break down? Anyway, many of us are on long term pain relief, which also helps with the Big D. Remember, its nothing to be ashamed of if you need pain relief! But make sure you understand all aspects of it, first.
Anyway, as to your other pain, I cannot too anything about it. I wish I could.. Anyway, here is a <<<HUG>>>
And you've had a remission, so you know its possible!

Sincerely,
Matthew

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 7/8/2008 12:57 PM (GMT -7)   
so sorry about the loss of your daughter. That has got to be tough!
I hope you feel better soon.
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort Switching to Humira June 2008 will wean off Pentasa and Entocort

Diagnosed w/  Fibromyalgia May 2007 also on Soma - Also on Prilosec for reflux.

 

 


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 7/8/2008 1:22 PM (GMT -7)   
Matthew said...
Well, obviously that doctor did not know what he was doing when he gave you that rx! Sheeshh! Usually pharmacists advise you on new scripts too, why did the system break down? Anyway, many of us are on long term pain relief, which also helps with the Big D. Remember, its nothing to be ashamed of if you need pain relief! But make sure you understand all aspects of it, first.


What do you mean? The Norco? Honestly, that is all I have EVER needed. They don't like to give me anything stronger as it causes compactions, which I have issues with from being overmedicated with pain relief or nausea relief (Zofran). I usually request Norcos, a lower dose then Loratab. I've done Loratabs too, but only when I need it. Darvucets don't touch anything and make me sick and Percusets, well, they are useless on me as well.

I have always been prescribed Norcos by my GI... and they've always been fine. I'm just confused by your statement...
Kaycie - Age: 26
Crohn's - Dx Nov 05
Remicade - Next infusion - July 10th - new dose - 10mg/kg
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 11 months old

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