UC = Frustration

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AbbyCatG
New Member


Date Joined Jun 2007
Total Posts : 8
   Posted 8/6/2008 4:50 AM (GMT -7)   
 
Just thought I would share a little piece of my massive frustration with UC.  I am currently in a rocky spot in my "journey" with UC- keep flaring on Remicade and having to be put back on the pred.  For over a year I was in remission with Remicade and it was SOOO much harder to emotionally deal with being in a UC flare after going through a long period of feeling well.  When I started to flare again - I began to cycle through feelings of sadness, depression, LOTS of anger and irritability- and that was BEFORE they put me back on prednisone (so you know I am Miss Susy Sunshine at this point). 
 
I am suprised at how much harder it is to just "deal" with being symptomatic again- I have experienced medications not working and symptoms coming back and weathered it in the past, but it just seems more difficult this time around.  
Diagnosed UC January 2006
 
 Colazal 4x 3x per day
 Remicade since 1/07
 Remicade Remission since late February 2007 !!
 Flare while on Remicade 3/08 & 7/08
 Prednisone 30 mg (tapering 5mg every 2 wks)
 Multi-vitamin daily
 Calcium 1200 mg daily
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 8/6/2008 9:09 AM (GMT -7)   
I know the feeling. You put all your hope on this one medication to help you. So, of course it's frustrating when it doesn't work out. Been there and done that...unfortunately.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~2nd epidural injection 8/14, Neurontin and Skelaxin
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Firthy
Regular Member


Date Joined Mar 2007
Total Posts : 33
   Posted 8/6/2008 11:27 AM (GMT -7)   
Yeah its a real bummer when medication doesnt work =(.. i used to be on over 20 tablets a day and never used to make any difference.. Grr

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 8/6/2008 2:00 PM (GMT -7)   
Yup, it's the worst...I havae a love/hate relationship with Remicade. It's certainly made my life a heckuva lot more "liveable", & has enabled me to avoid surgery so far. But.... it's no miracle drug for me like it is for so many others! I get burned sometimes.... like "Why?!?!" And I know darn well that sooner or later, it'll really start to lose effectiveness, & then what? I try Humira, & stick with that as long as it lasts, & hope in the meantime they come up with something other than a TNF blocker! I don't find it frustrating so much as saddening. I think the fact that for UC, the TNF blockers are the "end of the line" drugs, so when they stop working, or don't work as well as they could, it's a HUGE letdown. Especially when you start off so promising, & feel so darn good, & think it'll be that way forever. BooHoo.... sad
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


~ChristieAnn67~
Regular Member


Date Joined Dec 2007
Total Posts : 151
   Posted 8/6/2008 8:29 PM (GMT -7)   
OMG,  I sooooooo can feel your pain/frustration etc etc etc...... I was put in what I considered complete remission in NOv 2007.....I was in the hospital and had the S word mentioned to me for the first time....(SURGERY!)   As a last effort,  my GI suggested remicade,  and I was so for it..anything to get rid of the WORST flare I"d ever had, and to get out of the hospital...Well,  I got it the next morning, and I was discharged from the hospital the next day!!!  I considered it my "miracle" drug!!  I'd even had a few "stomach flu bugs" from my kids,  and had it for 24-48 hours and recovered just like they did....(in the past,  ANYTIME I got a stomach flu bug,  it put me in a flare)....But I must add,  that while on remicade,  I would have a few loose stools,  and GI upset whenever I started my period,, but it would always improve as welll....at least until July 1st (when I started it)....I had my usual loose stools, and Gi upset, but then things kept progressing...I started to get the fatigue,  mouth sores, then diarrhea,  then mucous, and blood,  and then the severe cramping and urgency!! I knew I was in full flare!!  So,  back on that evil drug,  pred....it took a while,  but finally started to help the flare...then I got my next remicade on the 31st....yay!   All flare symptoms are better again,  but now tapering the pred...I sooooooooooooo worry about the remicade losing its effectiveness......I have heard that its happened to  so many people on here....But I'll tell ya,  I'm nearly ready to "throw in the towel" and just have the surgery.  someone brought up a good point to me once...."why take so many drugs that have all the potential side effects and long term risks,  just to hold onto a colon that is already diseased, and causes us so many problems"....hmmmm....good point!!!  Anyways,  I read your post, and felt like I had written it...(and by the way...I hate the RAGE feelings I've had on this taper of pred!!)  OMG<  I felt like I was going CrAzY!!!    Good luck on your taper!!  Hang in there!! 
                                          ~Christie
41 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).   Diagnosed L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05. (Complete remission from Nov. 07 to July 08 d/t Remicade) hoping for remission again after this current flare.
                                         Medications
Remicade infusions ~ 11/6/07, 12/6/07, 12/20/07, 2/14/08, 4/10/08, 6/08, 6-MP 100mg daily, Pentasa 500mg twice a day, Lantus insulin 15 units daily, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, B complex vit daily,  and pro-biotics daily.


AbbyCatG
New Member


Date Joined Jun 2007
Total Posts : 8
   Posted 8/7/2008 3:26 AM (GMT -7)   
Thanks for the replies! 
 
Christie- I definitely hear you on wondering whether it would be better just to op for the surgery at this point- why am I holding on to this diseased colon-- I have been lurking on the ostomy board and j-pouch.org to get a sense of my options and life after surgery- most who have the surgery seem to do amazingly well. 
 
Also- my recent "Remicade flares" began after I had my period- a time during which I regularly have frequency and really loose bms.  Things were my normal "bad" stretch the few days before and during my period and then instead of going back to my Remicade "normal" I worsened and flared.  They need to do research into the interaction b/t UC and women's periods.  There have been numerous threads here where a lot of ladies have that link.  Is is the hormones that cause the spike in symptoms?? 
Diagnosed UC January 2006
 
 Colazal 4x 3x per day
 Remicade since 1/07
 Remicade Remission since late February 2007 !!
 Flare while on Remicade 3/08 & 7/08
 Prednisone 30 mg (tapering 5mg every 2 wks)
 Multi-vitamin daily
 Calcium 1200 mg daily
 

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