WOW... given a blow

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Regular Member

Date Joined May 2004
Total Posts : 187
   Posted 9/23/2008 3:55 PM (GMT -6)   
Ok... so here's the deal. For the last couple of months I've been flaring and flaring and flaring... and its been getting worse to the point where I am fighting to keep my normal routine. My tummy is battling me big time. On top of that, my skin on my face, neck and chest is red and itchy and flaking, and getting worse.

Finally I had a chance to see my GI, and here's what he says. My colitis, which shows patchy in the last scopes, he thinks is more indicative of chrones, or chrones and colitis. So, off for another scope I go (my last was over a year ago) and they will do the full thing this time to look it there are patches in my small intestine too. On top of that he sent me off for a bunch more tests, saying that he's sure something else is going on, especially given my skin issue. I thought it was rosacea, he says it looks more like lupus rashes. So they are testing for lupus. They are also testing for celiac at my request.

I wasn't expecting the lupus thing. Honestly, it scares the poop out of me (pun intended). Does anyone else on here have both???

The other thing is, he's said its time for me to go on prednisone. I really really really am freaked out about this, I've resisted it for years. What if I get crazy side effects???

33 yr old, female.
Diagnosed with UC in 1996, symptoms since 1990
Currently in a UC flare since July 2008 *grrrr*
On Imuran 2mg/day, Primal Defence 2 tables/day, now added cortifoam for flare

Veteran Member

Date Joined Aug 2007
Total Posts : 2202
   Posted 9/23/2008 4:42 PM (GMT -6)   
A short course of pred, starting at a moderate dose and tapering quickly can be a good thing, in my experience. Sometimes it can stop a flare in its tracks and if you're able to taper quickly, side effects are minimal.
Diagnosed with ulcerative colitis spring 1999.
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.

Veteran Member

Date Joined Jun 2008
Total Posts : 2865
   Posted 9/23/2008 5:26 PM (GMT -6)   

Ok, first of all - take my late Mother's advice (I try) and don't "borrow trouble".  Wait until you KNOW what is going on!  One step at a time.  All the things you mentioned can be treated in their own way and all together.  There are MUCH worse things out there!  Best of luck to you.


68 yr. old granny
New diagnosed with proctosigmoiditis
canasa and proctofoam
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Rowasa every night for now- trying Lialda starting Friday

Regular Member

Date Joined Jun 2008
Total Posts : 33
   Posted 9/23/2008 8:42 PM (GMT -6)   
I hate prednisone and I hate the fact I have to still be on it. I get horrible side effects from it. Don't be to worried about the lupus thing though...When I was first diagnosed I was tested for HIV, Aids, Hep A b and C and every other nasty thing. I believe they just want to make sure nothing is make it worse then it needs to be.

Veteran Member

Date Joined Mar 2008
Total Posts : 1580
   Posted 9/23/2008 9:54 PM (GMT -6)   
Hang in there...if God forbid you have lupus (and you probably don't : ) )I know of a renowned nutritionist in NY that was able to get a good friend into remmission and now it does not even show in his blood work anymore. : ).
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!

Forum Moderator

Date Joined Apr 2004
Total Posts : 23551
   Posted 9/24/2008 6:27 AM (GMT -6)   
I agree, don't fret over it until you have a diagnosis. I felt the same way when they started testing me for Lupus. Luckily it has never shown up positive. To me personally it sounds like your rash may be psoarasis which an auto-immune condition. I have that along my hairline and it is itchy, red and flaky. I will cross my fingers and hope that you do NOT have Crohns instead. When you have the scope, please let us know ok?
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, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
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Forum Moderator

Date Joined Mar 2003
Total Posts : 10407
   Posted 9/24/2008 8:33 AM (GMT -6)   
I also have psoriasis, and it is very itchy! Hopefully your rash is just that, as mine responds well to a steroid ointment.

Good luck with your scope, and hopefully there will be no Crohn's indicators. Doesn't it seem strange to be hoping for "just" UC?
Judy - Southern US 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

Veteran Member

Date Joined Jul 2007
Total Posts : 2148
   Posted 9/24/2008 9:05 AM (GMT -6)   
take it a day at a time, easy for me to say I know.

A short course of pred may be very helpful and the side effects minimal, I would prefer pred to flaring (can't believe I made that statement).

I had a horrible, horrible rash all over my face and neck, red, bumpy and flaky skin, like pimples and zits but not......I got this after I ran out of my regular face wash and when I went back to it about 2 weeks later all pretty much cleared up, I use Cetaphil face wash, it is wonderful. I would try that and see how it goes. I also used neutrogena toner (I did have some pred pimples). I did start tanning again too, but I am not recommending that. Try the first one and see how that goes.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 5mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!

Regular Member

Date Joined Aug 2008
Total Posts : 469
   Posted 9/24/2008 12:59 PM (GMT -6)   
It's hard to not get a bit scared especially with this disease.  I know when I was diagnosised I was scared, upset, and terrified of food.  Now, I am more relaxed w/ it thanks to this forum.  Try to relax and leave it up to your doctors.  I know, easier said then done.
Hoping you feel better soon!
Diagnosised 8/25/08 GRRR
Multi Enzyme
Mega Probiotic
Fiber Wafer
Nictotine Patch
Feel like I am headed into remission! 

Regular Member

Date Joined May 2007
Total Posts : 169
   Posted 9/24/2008 3:16 PM (GMT -6)   
I'd never felt better than when I was on prednisone. Really! I never had to sleep, I was full of energy, my bowels were good. It was great! Of course I tolerated it well and had only very minor side effects (even at 60 mg and 40 mg for a couple of months.) Yeah, it can be nasty, but it will also make you feel better almost immediately.
UC diagnosed Dec. 2006
Azathioprine 200mg/day
Multivitamin, fish oil, fiber supplement, Nature's Way Primadophilus Optima, Digestive Advantage Crohn's & Colitis

Regular Member

Date Joined May 2004
Total Posts : 187
   Posted 9/24/2008 11:28 PM (GMT -6)   
Thanks all, I'm still reeling a bit, but am just trying to lay low and wait until I get the blood work done and have the scope. I'm traveling right nwo, so any added stress just isn't a good thing,... I had a 'talk' with myself and decided to try my best to push it from my mind. It's hard though.

33 yr old, female.
Diagnosed with UC in 1996, symptoms since 1990
Currently in a UC flare since July 2008 *grrrr*
On Imuran 2mg/day, Primal Defence 2 tables/day, now added cortifoam for flare

Regular Member

Date Joined Jul 2008
Total Posts : 298
   Posted 9/25/2008 12:05 AM (GMT -6)   
I sometimes get really itchy and rash breaks out when I get close to a flare or coming off one.

Often it clears up with some head and shoulders used as a body wash. Just don't get it in your eyes, you'll wish you didn't. I found this out when I started using it for this itchy spot on the back of my head I used to get when I was first diagnosed. It started clearing up my other skin blemishes too. I think its the zinc. Wonderful stuff.
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