Gotta make it through the next 9 days somehow :(

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geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 4/8/2009 7:30 AM (GMT -6)   
So the sorbitol in my fish oil soft gels has put me in a downward spiral. I feel just as bad today as I did before I started Remicade last summer. I have no appetite, I'm dehydrated, I'm going several times a day, theres blood and pain.... it's terrible. I called in sick to work yesterday, but I'm trying to survive the workday today.
 
I called my dr yesterday and they are going to get me in 2 weeks early for my next remicade. They are also going to increase the dose to 10mg/kg. I go in a week from Friday. In the meantime, I just have to hang in there.
 
Any suggestions on how to make the next 9 days bareable???
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. 


AlliUC
Regular Member


Date Joined Mar 2009
Total Posts : 50
   Posted 4/8/2009 9:22 AM (GMT -6)   
I wish I had something helpful to say! I have no experience with what you are going through but I wanted you to know that I read your post.

I hope you start to feel better really soon.
Female, 41
1996 diagnosed proctitis (during pregnancy, just months after I quit smoking)
Mar 3, 2009 diagnosed ulcerative colitis - it got my entire colon - severe

Fighting my first major flare up of UC (but I think my first UC flare up was at the end of 2006, 2 months after I quit smoking again)
60 mg prednisone (started at 30 but was doubled immediately) Mar 5/09
salofalk enemas = 5-aminosalicylic acid (mesalamine) added March 24/09 after second colonoscopy showed not enough progress ( previously managed proctitis with same stuff as suppository and then enema in 06)


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/8/2009 12:13 PM (GMT -6)   
Have you tried a probiotic? I would also ask your doc for Bentyl (or generic) to help stop some of the cramping that sends you running.

Fake sugars can cause so many problems. I try to avoid them like the plague.
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  yo-yoing between remission and a mild flare
Lialda 4 per day,  Azathioprine 50mg, Aciphex, Effexor XR, Forvia, Fibercon, and Culturelle
Remicade: 1st infusion 06/17/08:  Next infusion: April 1 after the tooth infection is gone :(
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/8/2009 12:22 PM (GMT -6)   
Ugh, Sorbitol should be off the market! My mother was a school nurse and kids were always coming in with terrible stomach cramps from over-indulging on candy or mints made with Sorbitol.

Is your diet well-balanced, and do you need all the vitamins? I find they cause upset and I do fine/better without them.
If you want to go less often, try 1/2 an immodium after you go in the morning. It calms things without shutting you down (which is an uncomfortable feeling).

Curious, does a Remicade infusion give you some immediate relief? I didn't think it worked that way, but am looking forward to it...
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 all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, tried to taper but now back up to 20-30 after several really bad days. Waiting for insurance decison on Humira...soon... 


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 4/8/2009 12:40 PM (GMT -6)   
AlliUC - Thanks for the response :)

Dakotagirl - I started taking acidopholis a week or so ago. I haven't noticed any difference though. As for Bentyl, I was given that a couple years ago when I was diagnosed with IBS, and while it helped with the cramping, it made me so nauseous.

Peety - Remicade was a miracle drug for me. When I hit rock bottom last summer, I noticed a huge improvement after my very first infusion (well, within 24 hours). Every time since then, if my symptoms start to surface again right before my eight weeks are up, once I get the Remicade, I'm fine within 24 hours. (Well, to be perfectly honest, I have not yet been in remission, but the Remicade keeps things at a tolerable and manageable level for me).
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. 

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