interesting survey from the Lialda website

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ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 8/15/2007 7:41 PM (GMT -6)   
I was reading up on Lialda since I hadn't heard of it before recently, and I came across this survey they did. I just thought I would share this, I thought it was very interesting!

1. about how many flare-ups have you experienced over the past 12 months?

UC patients reported an average of 8 flare-ups per year that result in missed days of work and disruption to life activities. Patients with mild UC reported 5 flares; patients with moderate UC reported 8 flares; patients with severe UC reported 11 flares. These patients self-reported their level of severity.

Interestingly, gastroenterologists who participated in the survey thought 3 flare-ups per year was typical among UC patients.

The next question may shed some light on why doctors gave a lower number than the UC patients surveyed.

2. How many of these flare-ups did you discuss with your doctor?

Many UC patients reported that they do not discuss symptoms with their doctors.

* 34% of patients reported that they are sometimes "reluctant" to tell their doctor about flare-ups, including 8% who said they were always "reluctant"
* 27% reported that they discussed fewer than half of their flare-ups with their physician

3. Which statement BEST describes how effectively your disease has been controlled over the past 12 months?

My symptoms were completely or mostly under control
My symptoms were present but did not interfere with my life
My symptoms caused some disruption to my activities, but my quality of life was okay
My symptoms negatively affected my life on a regular basis

Only 21% of UC patients reported that their UC was "completely or mostly under control."

In contrast, gastroenterologists reported that they think 48% of their patients' UC symptoms are "completely or mostly under control."

4. How much do you agree or disagree with the following statement? Living with UC is a daily struggle.

61% of UC patients reported that they "somewhat agreed" or "strongly agreed" that living with UC is a daily struggle.

Gastroenterologists, on the other hand, reported that they think living with UC is a daily struggle for only 28% of their patients.

5. How much do you agree or disagree with the following statement? Not feeling well from UC has become a normal part of my life.

73% of UC patients reported that "not feeling well from UC has become a normal part of my life."

Gastroenterologists reported that they thought only 37% of their patients feel this way.


Wow. It's amazing how little even our own doctors really understand us.
Here are more interesting findings:

56% said UC is "somewhat" disruptive to their lives, while 21% said UC is "very" disruptive.

* 82% said UC was disruptive to their emotional state
* 75% said UC was disruptive to sexual relations
* 64% said UC was disruptive to their relationship with a spouse
* 59% said UC was disruptive to their relationship with other family members and friends

93% said UC is "disruptive" during a flare-up; 53% said it is "very disruptive"

62% said UC makes it "difficult to lead a normal life"

61% said living with UC is a "daily struggle"

60% said UC has "wrecked important moments" in their lives

53% said UC "controls" them, rather than they control their UC

Most UC patients surveyed have accepted flare-ups as "normal" and don't expect much from remission. Clinically, remission means being without symptoms for a period of time—remission can span months or even years; however, symptoms can eventually return.

74% believe it is "normal" to have flare-ups

58% believe remission means living with UC symptoms

UC patients' reluctance to discuss their condition could contribute to the low awareness of UC among the general public.

74% of the public say they have either never heard of UC or have heard of it but know little about it

34% of the public say that UC is "very disruptive" (compared to 55% of UC patients)

In contrast, the general public overestimates the level of disruption caused by migraines, asthma and RA, which are more well-known diseases.

84% of UC patients said they worry about the long-term health effects of having UC, compared to 45% of migraine patients, 72% of RA patients and 58% of asthma patients

82% of UC patients said their condition made life more stressful, versus 75% of migraine patients, 69% of RA patients and 46% of asthma patients

62% of UC patients reported feeling "sometimes" or "always" depressed about having their condition, versus 49% of migraine patients, 52% of RA patients and 25% of asthma patients

Specific worries most commonly mentioned by UC patients were developing colon cancer, having their colon removed, requiring surgery and experiencing public fecal incontinence.

Feeling isolated is also a risk for people with UC.


70% said that their UC is embarrassing to them

66% said that they are reluctant to tell people about their condition

love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 8/17/2007 7:32 AM (GMT -6)   
Yes it is very interesting.  I really don't think doctors can have a true understanding of what it is like to live with UC unless they have it themselves.  Yes, they know it is a horrible disease, but I don't think they understand that it consumes our minds continuously through out our day and how it impacts our daily decisions and quality of life. 
 
 
Dx:  2006
 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence.
 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes).
 
 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 8/17/2007 7:37 AM (GMT -6)   
I find it interesting how many flares people reported. 11 flares? does that mean in between each flare there is a remission? This year I have been in one long flare. I never reached remission but I am considered to have moderate to severe UC.

When you count the number of flares in a year what is the criteria? Does there need to be a remission between flares? or is it a flare when symptoms are reduced and then come back?
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, back to 30 mg pred.
Waiting for prometheus test to start Immuran
Prontonix once daily for acid reflux, zofran twice daily for nausea


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 8/17/2007 7:55 AM (GMT -6)   
I don't understand how to count the number of flares either. I think some people say "Week 1 I felt really sick and had urgency and bleeding. Week 2 I felt great. Week 3 I am feeling sick again. That's two flares" But to me, that would just be one flare. Because I have days that are bad and days that are good but I never know how many good days add up to not being in a flare any more. I think I typically have 1-3 flares a year with them being very long and then having some or no remission, but am flaring throughout most of the year.

Maybe I'm going about it wrong.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
Primadophilus Reuteri
20 mg Citalopram (for depression/social anxiety)
125mg Imuran
10meq Potassium Cl
 

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