How long to get a flare under control?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

ohio84
Regular Member


Date Joined Feb 2008
Total Posts : 35
   Posted 2/25/2008 8:26 AM (GMT -7)   
How long does it take everyone to get their flares under control?
My daughter is 17 and diagnosed with Crohns/Colitis in 2003.  Everything was fine taking Asacol until Dec. 05 she started flaring. April 06 they put her in the hospital for 7 days on IV steroids and she left the hospital on 6MP. She finally tapered off of the pred. in July and everything was great.  This past December she started flaring again.  The Dr. took her off of the Asacol thinking that might be affecting her and put her back on the Pred. We tried Rowasa but it was making things worse. Two weeks ago she spent 4 days in the hospital on the IV steroids and that seemed to be helping a little but we decided to start Remicade. She had her first dose two weeks ago on the day that we came home from the hospital.  The first couple of days after that she was really tired and then she snapped out of it for 4 days and was back to her old self.  Much less blood/direhea.  We thought everything was falling into place.  Last Monday evening the blood seemed to be a liitle worse and has been that way ever since.  Last night she was up every hour in the bathroom.  Not alot of direhea but alot of gas and blood and cramping.  Does this all sound normal?  We have our second dose of Remicade in the a.m., do you think there is still hope that it is going to work?  I am just getting really frustrated. She is currently still on 30M of Pred. also.
 
Sorry this is so long.

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 2/25/2008 8:43 AM (GMT -7)   
I used to start to get worse before my next infusion. It took me several months to have a huge difference on Remicade, you have to be patient with it and stay positive. Has she been careful with her diet?
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


ohio84
Regular Member


Date Joined Feb 2008
Total Posts : 35
   Posted 2/25/2008 9:38 AM (GMT -7)   
She is as careful with her diet as I can make a 17 year old.
She is a very picky eater but I have managed to get her off of fast food and pop for about a month now. As of last Friday I took her off of all dairy products.  When she was a baby she could not drink regular milk so I thought maybe that would be worth a try. It is just hard because everything that she likes is covered in cheese.
She ate spaghetti yesterday so I don't know if that is what kept ker in the bathroom all night.  Not much direhea but mostly gas and blood everytime she goes.

kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 2/25/2008 9:50 AM (GMT -7)   
The tomatoes in pasta sauce can give some people gas. That may have been the culprit but it's hard to tell sometimes. Dairy is hard to give up for those of us who love cheese!!! There are some really good other options though. In the produce sections ofmany grocery stores there are veggie and soy cheeses that are pretty good. Many people have opted for allergy testing as well to see what foods they are sensative to.

I hope your daughter starts feeling better. Good luck!
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, started at 60 mg 1/07, 15 mg pred, down to 10 mg 1/11/08...down to 10/5...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08-back on 1/16/08 now at 150mg imuran
waiting to be scheduled for remicade.
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
antispasmodics didn't work.


Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 2/25/2008 11:20 AM (GMT -7)   
How long to get a flare under control? I have had Severe UC for over 3 years and I often asked myself this questions b/c i would go for months with only bloody mucus. Even when I thought I was controling my UC I would see an occasional trace of blood somwhere and almost always had mucus even on my formed stools. I would have to suggest to your daughter to get lots of rest and eat only food with nutritional value. I mean only eat food that should be beneficial to a body and not food that makes the digestive system do work and not get anything out of it b/c food with no nutritional value only makes the digestive system work even harder in order to eliminate waste.
                                                                                         
28/M/TX
Severe Colitis (pancolitis) since January 9, 2005
currently:  I must say Under Control, 1 formed BM/day
RX/day:  2.5mg prednisone every other day
Lost job and insurance 10/2007 and stopped taking asacol and Imuran
(believe me I know my body and do not recommend doing this!!!)
OTC: seldom use VSL#3, vitamins & other natural treatments
Diet: SCD helps tremendously, but am not strictly on it. For Lent I gave up peanuts, sweets, and fried foods...
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4980
   Posted 2/25/2008 8:45 PM (GMT -7)   
Ohio,

Has your daughter had her stools tested for bacteria or parasites....any good GI will order stool samples right away as a flare begins. And most hospital will do a stool stample as soon as a patient checks in for a flare.

My flare has been going on since May 2007 and is still going, I think it is getting worse.....errrrr.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May 2007
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (250 mgs), Hyoscyamine .375 mgs
Supplements:  Forvia multi-vitamin
 


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 2/25/2008 9:23 PM (GMT -7)   
I want to recommend the Specific Carbohydrate Diet for your daughter. It seems that she is in the throngs of a really bad flare right now, and it doesn't seem that meds are helping at all and food could be causing much of her problems. I have found remission on this diet, after suffering for 9 years and a long 3 month flare. (I was on 40 mg of prednisone for 3 weeks and it wasn't do anything for me. Doc wanted to put me on 6-mp, but i refused to take it.) I have been on the diet for 7 weeks and go to the bathroom once a day.

I am a pharmacy student, and I should be pushing drugs on the general public but I can no way do that because as I have discovered through personal experience and through my own research, drugs(aka meds) do nothing for this disease, at least do not get to the root of the problem.

I do not believe in gimmicks, and I am a skeptic of the latest cures out there but the diet has worked for me. If you are interested, check out the book Breaking the Vicious Cycle.
Pharmacy Student
Class of 2009, MWU

Diagnosed 8/99.  Suffered for almost 10 years.  I am currently on the Specific Carbohydrate Diet and am nearning remission.  I feel fantastic!  My next goal is to gain the 15 lbs I lost 6 weeks ago and start living life again.  I have lost so many years to this disease. 


I decided to become a pharmacist to understand these drugs, and to help fellow sufferers of IBD.  My goal is to open up a pharmacy and take care of my patients(particularly explaining what the drugs do to you), compound special medications, and have a great practice. 

3200 mg Asacol, 5 mg prednisone
HAVE YOU CONSIDERED THE SCD DIET? IT HAS PUT ME IN REMISSION AND I PLAN ON GETTING OFF THE ASACOL SOON TOO!

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, February 18, 2018 12:37 PM (GMT -7)
There are a total of 2,930,542 posts in 321,549 threads.
View Active Threads


Who's Online
This forum has 160291 registered members. Please welcome our newest member, Abdomare.
370 Guest(s), 7 Registered Member(s) are currently online.  Details
notsosicklygirl, RedLabel, lazyminimoo, Patulsius, Pratoman, Whattheheck, iPoop