a few questions

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brettc83
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/8/2009 8:37 PM (GMT -6)   
with UC...
 
do i stay away from spicey foods (bbq sauce,  salsa....)
what exactly is a flare up?
what exactly is remission (no more dirarhea and normal bathroom visits)?
whats considered mild/moderate/severe?
does it affect my immune system?
how is there no cure? how doesnt the colon heal after time??
 
how do i get friends/family to calm down about me having UC???
 
what is THE worst and best food to eat?
is this something that i should get tested/checked up on frequently for?
does anyone notice if this affects there life much? obviously it does, but youre still who you are..
 
any tips?
 
 
 
 
 

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/8/2009 8:56 PM (GMT -6)   
1. What people with UC can and can't eat is really individualistic. So basically, it's trial and error.
2. A flare up means you're having symptoms, which also vary from person to person. So far, for me that means severe urgent diarrhea (15-20 BMs a day at my worst), with some bleeding, but not much pain.
3. Remission means no symptoms.
4. My doc thinks mild/moderate/severe is how bad your symptoms are, not how bad your inflammation is, but others might have a different view.
5. One theory of what causes UC is that your immune system has decided to attack your colon. I don't think it really affects your immune system too much otherwise. Some of the meds used to treat UC can weaken it, though.
6. There is no cure b/c the immune system keeps attacking the colon. So, you have to stay on medications that either keep the inflammation under control or suppress your immune system/immune response.
7. Educate them. www.ccfa.org is a good place to start.
8. You'll have to figure that out for yourself.
9. Yes. After you've had it for 8-10 years you should have a colonoscopy every 1-2 years to check for colon cancer, as we are at an increased risk.
10. For some, it can really affect their life. I'm still too new to UC to really know if it's going to cause me much problems or not.
11. Educate yourself. Read as much as you can about treatment options and such. It's nice being able to have an intelligent conversation with your doctor about what treatments you can try.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg 15mg 10mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


brettc83
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/8/2009 9:01 PM (GMT -6)   
so flare ups....does that only come after meds? or all the symptoms before i was diagnosed..would that be a "flare up"? cause before i found out i had UC..i was going 2-4 times a day, and now that im starting meds..its getting down o only 2 times

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/8/2009 9:02 PM (GMT -6)   
Your first flare that you had before you were diagnosed and started meds is still considered a flare...it's just your first one.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg 15mg 10mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


UC_Dad
Regular Member


Date Joined Nov 2008
Total Posts : 33
   Posted 4/9/2009 6:40 AM (GMT -6)   

I wish my first flare was only 2-4 BMs a day times, it was more like 15-30 bms a day. Hopefully the meds will continue to help you and keep your inflammation under control. Education is the best thing to help understand UC for you and your family. Having a GI that you can talk to when you need I feel is also crucial to keep "blips" to a minimum.

Take care and Welcome!


Dx'd June 08 severe UC (pancolitis), symptoms for years before dx
30 yrs old
Meds
Asacol 400mg x 9, Prednisone 40mg tapering off now
6-mp 100mg, Canasa
Probiotics x3/day, Ominvite Multivitamin
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/9/2009 2:05 PM (GMT -6)   
My worst is iceberg lettuce. I can eat spicy, no problem.
The best food...hmmmm.... potato chips :)

I don't tell my friends, that's how I handle it!

Your immune system should not be affected unless you are taking one of the biologic drugs.
However, I will go into a flare if I get the flu or a really bad cold...so you want to stay away from sick people just as if you had an immune deficiency!

My flares are lots of blood and urgency, many time throughout the day.
It's all subjective, I suppose.
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). 
Flaring, seasonal? Back on prednisone, tried to taper but now back up to 30 after several really bad days. Humira denied, waiting for approval to start Remicade. 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 4/9/2009 2:27 PM (GMT -6)   
1. It will vary depending on the individual
2. For me a flare up is anything other than remission. Remission being 1-2 formed bms day, no blood, no urgency, no cramping... just normal like I was 16 years ago.
3. Remission, mentioned above.
4. Mild/Moderate/Severe will depend on the amount of ulceration in the colon according the the GI's colonoscopy.
5. It will affect your immune system in alot of different ways. The amount of stress it can put on you will change cortisol levels, along with other stuff, and also change levels of immune response, along with the meds we get put on.
6. Really no cure since you have a mechanism which has been turned on to attack the colon. Our body recognizes something "foreign" there, and it never has a chance to heal because our immune system is always attacking it. Turn that pathway off permanently, then there's your cure.
7. Family and friends learn over time. Just give them a general idea of what is going on, and that will let them understand a little better when you "opt out" of certain activities.
8. I second the iceburg lettuce.. GAH. A healthy diet is the best thing you can do. The more processed/boxed/frozen/fast food/high fat/donuts..mmmmm.. stuff you ingest the more it puts biochemical stress into the body. You add that to an already stressed system and you are setting yourself for a sick future. Some people will say food has no affect on UC, but they aren't really looking at the body as an integrative system.
9. You will have more colonoscopies, unfortunately.
10. It slowly changes alot of routines, and depending on the severity can even change your personality. I get ALOT more anxious when anyone mentions a trip now, and I become more irritable during that whole situation as compared to many years ago without UC.
As I leave for a 7 hour trip now, lol..

Welcome to the forums!
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

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