Just a brief venting post....

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geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 4/20/2009 7:45 AM (GMT -6)   
Have you ever just wanted to kick and scream and the top of your lungs and just throw a good old-fashioned three-year-old tantrum? I'm suffering a flare right now, and even my remicade treatment on Friday didn't do too much. I have slight improvements, but its going a lot slower than expected. This morning I was in so much pain that I just wanted to throw a tantrum, screaming "it's not fair!" I know I am not alone though. But when it feels like your insides are trying to kill you, it's hard to think positive.
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg, increased in March to 7.5mg/kg (started Aug 2008 - 6 infusions so far, next infusion on 4/30 continuing every 8 weeks); Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate)
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09)
Current Status: Reached remission for a few weeks in October 2008, but symptoms returned after I allowed myself to enjoy wine again.... gave up wine and have not been in full remission again yet. 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/20/2009 8:11 AM (GMT -6)   
Oh boy do I hear you! I have had so many of those days that I too just wanted to throw a tantrum, crawl in a corner and cry for about 3 hours. I hope you start to feel better soon and that the Remi will get you feeling better in no time.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 4/20/2009 8:27 AM (GMT -6)   
I have cried to my husband in just the past few weeks that it's not fair! You're not alone.
31 yr old female currently breastfeeding (weaning so I can start 6mp)
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon


lambkins
Veteran Member


Date Joined May 2008
Total Posts : 574
   Posted 4/20/2009 9:16 AM (GMT -6)   
Have just had the weekend from hell know where you are coming from i just keep thinking things can only get better. You are not alone.
  
  Diagnosed 22.5.08 with Lft sided U/C
  Meds Predfoam 20mg 2x day stopped started pentasa supps 1gm 26/6/08
 Asacol 800mg x2 twice daily
  Domperidone 10mg as needed
  co codamol 30/500 x2 when needed
  Asacol foam 2g nightly 19/3/09
  Prednisone 60mg 19/3/09 tappering after2wks


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 4/20/2009 9:33 AM (GMT -6)   
I hate that we all have to go through this. But it helps to hear from others that can understand like no one else can. Thanks for replying everyone. I hope you all feel better soon, too.
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg (Aug 2008), increased to 7.5mg/kg (March 2009), increased to 10mg/kg and increased to every 6 weeks (April 2009) - 7 infusions so far, next infusion on 5/28 continuing every 6 weeks; Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate)
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09) (will try again once I can eat normally again)
Current Status: April, 2009 - suffering another flare-up :(


Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 4/20/2009 4:09 PM (GMT -6)   
Yes, I've been having quite a few of those days lately. I've been in a 2-month flare and so far nothing is helping. Remicade helped the first few times, but then I weaned off Prednisone in January. In February, I was started on a new med by my hematologist (one of the side effects is diarrhea), which has since been reduced (I have low hemoglobin and have to get iron infusions and blood transfusions periodically). Also, I'm under a lot of stress right now, being unemployed and so far having no luck finding a job). I refuse to go back on Prednisone...was on it for almost 2-1/2 years continuously (kept flaring on lower doses). I've had crying fits almost every day, so I totally understand how you feel. This disease...well, I won't put the words I'm thinking in this note. cry

Ulcerative Pancolitis (dx'd 6/2002)
Pentasa (4gm/day); Prednisone 5mg am, 5mg pm; Aranesp injection every week for anemia;
Lialda 4 tabs 1x/day; Rowasa 2x/day; started iron infusions 7/18/08; started Remicade 11/12/08; blood transfusions when hemoglobin drops to 8.0;
6-MP (discontinued as it lowers my white count)
Immodium-AD (occasionally)
various meds for other conditions


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/21/2009 2:17 PM (GMT -6)   
I had a very rare meltdown a couple of weeks ago, I'm sure it was in part caused by the prednisone. I was just worn out. It inspired my husband to go grocery shopping and commit to helping me return to the rotation diet that had helped so much last fall. He is doing a better job of encouraging me to make smarter decisions about eating, instead of just indulging me all the time.

I rarely feel sorry for myself otherwise, but sometimes a little tear will fall. I'm usually just reminding myself to give myself a break, do what I need to do to be comfortable even if it means I'm late somewhere or miss some event or things like that.

I also cried a little tear when I was scheduled for Remicade...a hopeful tear.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, seasonal? Back on prednisone, 40-30-25-20-15... Humira denied, started Remicade 4/12. 


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 4/21/2009 2:57 PM (GMT -6)   
I used to have the days all the time. I would come out of the bathroom and sit at the top of the stairs rocking back and forth crying to my mom and saying 'I just can't do this anymore'.
I hated those days and I hate that you're having such a hard time! I hope things look up for you... :)
Sam(antha)
20 year old college student diagnosed in March 2005
Remission since January/April 2006- THREE YEARS!! YAY!!!!
4 400mg Asacol 2x daily, 10mg Elavil, 75mg Effexor XR for GAD, ortho lo

"Life is what happens when you are busy making other plans"
John Lennon


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 4/21/2009 6:23 PM (GMT -6)   
I had to pull off the road yesterday and take a poo beside the car. Today I haven't been to the toilet at all. It definately makes you wanna scream sometimes!
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD3+Ca/SuperDHA


aquafly79
Regular Member


Date Joined Aug 2007
Total Posts : 317
   Posted 4/21/2009 7:38 PM (GMT -6)   
You know what? Have that tantrum. It will make you feel better to get it out and then you can take a good nap. I've totally been there, having a flare with a demanding baby/toddler and freaking out on prednisone. Do what you need to do to get by and you'll get better. Good Luck!!
aquafly79


Diagnosed with UC in 2004

Currently on Sulfasalazine, taken off Imuran recently due to low white blood cell count, multivitamin, folic acid, calcium, 1200mg fish oil, VSL #3, magnesium

Recently diagnosed with a bunch of food intolerances, which might explain UC: oats, walnuts, butter, lime, tea, coffee, some spices, cane sugar, squash, mozz. cheese, bean sprouts, cola, lettuce, peas


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 4/22/2009 8:03 AM (GMT -6)   
Thank you all for your responses. This disease is just so unfair. And its unpredictability drives me insane. I'm doing slightly better each day, but I still just want to cry sometimes. I know it could always be worse, so I try to think positive.
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg (Aug 2008), increased to 7.5mg/kg (March 2009), increased to 10mg/kg and increased to every 6 weeks (April 2009) - 7 infusions so far, next infusion on 5/28 continuing every 6 weeks; Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate)
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis, Probiotic Align
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09) (will try again once I can eat normally again)
Current Status: April, 2009 - suffering another flare-up :(

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