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Quality of life questionaire?

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Posted 11/26/2012 6:23 PM (GMT 0)
Does anyone have a good link to a self-scoring QOL questionaire for IBD? Thanks
Posted 11/26/2012 6:50 PM (GMT 0)
It would definitely be subjective...I can't see how a questionaire could tell me that my quality of life is good or bad.

Just ask the question...you can pretty well tell yourself if it's good or bad based on your lifestyle I think.

Unless, I'm totally not understanding the need for one, which is a huge possibility.

q

Posted 11/26/2012 6:54 PM (GMT 0)
my quality of life is bad...I don't need a questionaire telling me. Make UC dissapear and it will instantly become great. lol
Posted 11/26/2012 7:09 PM (GMT 0)
Dude...but if you didn't have as many accidents, would your quality of life increase?
q
Posted 11/26/2012 7:18 PM (GMT 0)
it would lol....I just had one this morning....motherf.....

the only things that bothers me about this disease is urgency and bleeding. But really, they both go together and they are the staple of the disease. heh
Posted 11/26/2012 7:23 PM (GMT 0)
they are.....please, please start rectal meds and see if it helps.

i just don't understand why you're not using themmm...arrrrrrrrgh!!!

q
Posted 11/26/2012 7:30 PM (GMT 0)
I'm just curious. I know my QOL is bad, but in my case its almost all from pain. I guess the cause if low QOL may be irrelevant, but I sometimes wonder how much is functional /IBS that interacts with my UC, and how much is pure UC. In that case, would colon removal not necessarily fix the pain. One GI pointed out to me that many in great pain turn our to be in total remission upon scoping.
Posted 11/26/2012 7:35 PM (GMT 0)
man this is so weird...what pain? You have pain with UC?

I mean, the only thing I could qualify as pain for me is some mild discomfort when it's coming out of my butt...the whole motions and stuff, but it's far from pain.

Pain for me is ahhhhhhhhhhhhh ahhhhhhh on the floor and stuff.

Pain is also when I stuck my finger in the electric socket when I was a todler. That crap was painful, I still remember it now....not doing that anymore. lol

Posted 11/26/2012 8:43 PM (GMT 0)
Somedude: try slamming the tip of your baby finger in a heavy steel door; now that is pain.
Posted 11/26/2012 9:03 PM (GMT 0)
Nutty, somedude. Yeah using all my various means of supplements etc I keep my bowel movements to a few semi-formed muds a day, usually in a spurt during a one hour period in the morning, no blood, and for the most part avoid urgency too, but pain is my buggaboo. And yet I see others like you who have no pain, but (not talking you per se) may say they go 10 times a day with B and some blood. It's a crazy DD.
Posted 11/26/2012 9:20 PM (GMT 0)
I honestly did not know how poor my quality of life was until I had surgery. My life was slowly taken away from me. I realized after surgery how much I had sacrificed. The first big 'in my face' change was being able to leave the house and not have to mentally plot where all the public restrooms where on my route. The second was being able to make commitments for simple things like dinner out with friends or even more complicated things like international travel. Predictability in all things related to living went from zero to 100% in 24 hours. Huge changes, huge.

Sue
Posted 11/26/2012 10:31 PM (GMT 0)
I remember when I started Remicade infusions the nurse had me fill out a quality of life questionnaire. That was probably one of the saddest days of my life seeing it all down on paper how miserable my life was living with UC. Relieved those days are over.
Posted 11/27/2012 12:45 AM (GMT 0)
Somedude-
Why don't you give Heather's advice a try ?

The enemas helped me with the bleeding and the slippery elm seemed to be the thing that finally got rid of the urgency.

We're all different but.....what have you got to lose by trying either or both?
I would like to see your quality of life improved by Christmas.
Posted 11/27/2012 1:05 AM (GMT 0)
i dont personally have a questionaire, but i have to fill one out at every GI appointment i go to. it is kind of depressing to be honest because it's like 15 pages long.

i think some of you are forgetting that somedude tried enemas for while with no improvement. why put yourself through it again if it doesn't give you relief? 

Posted 11/27/2012 1:14 AM (GMT 0)
uh, things change ?

if he did indeed have to slam his baby finger in a steel door to get some relief, then ya maybe the reluctance could be justified - but putting a squirt of goop up the heiny, with the possibility of relief, is much more reasonable -

if he doesn't at least give it one more try, well then, i'm gonna start calling him somedope !

Post Edited (soystud) : 11/26/2012 6:17:06 PM (GMT-7)

Posted 11/27/2012 3:51 AM (GMT 0)
Somedude you avoid the pleading to get you to use enemas!! but why?! They didn't help me but im sure glad i gave them a try.
Posted 11/27/2012 3:21 PM (GMT 0)
Before I had surgery, the surgeon asked me to rate my quality of life on a scale of 1-10. I told him 4. My parents were there with me (and I would tell the about everything going on). The surgeon goes "it's probably about a 2 then." My parents input "yeah, we thought she was estimating a little high." He said that those with UC just start adapting. It becomes our "normal."

Also, before my surgery Cleveland Clinic had me fill out a quality of life questionnaire for IBD. I don't think it's publicly available. But it would ask things like "how quickly do you have to make it to the bathroom", "do you ever get depressed", "do you always look for bathrooms", "do your digestive problems interfere with activities".

Like Suebear, I've felt much better after my surgery. This is despite the fact that I have eight inches of colon left, am fighting arthritis, skin problems, and bad pred withdrawal. I am still healthier, feel better, look better, and have a higher quality of life than I had with the UC.
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