Can you spare some time to take part in an online study?

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ibsresearch
New Member


Date Joined Jul 2007
Total Posts : 8
   Posted 8/8/2007 3:22 AM (GMT -7)   
Hello everyone,
 
I'm conducting a survey online for my PhD about what it is like to live with IBS and how people feel about their treatment.
 
I would be really grateful if anyone has time to take part.
 
Should you wish to take part, you can find the survey here:

 
Further information and my contact details are provided on the 'welcome' page on the link above.  Feel free to contact me/reply if you have any questions.
 
 
 
I have received permission from Admin to post the link :-) (thank you!)

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 8/8/2007 12:43 PM (GMT -7)   
I have participated. Thank you
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin PRN, Miralax 17g, Supplements


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ibsresearch
New Member


Date Joined Jul 2007
Total Posts : 8
   Posted 8/9/2007 3:18 AM (GMT -7)   

Many thanks dbab!

 


Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 8/9/2007 12:49 PM (GMT -7)   
I did it too. I put on there that my "IBS" was caused by my gall bladder removal. Technically, there's a word for what I have, post-cholestectomy (however you spell that) syndrome, but I only know that because I read it online. My doctors have said I have IBS.

One thing about your survey that I had difficulty with was the doctor part. I actually don't have much in the way of a permanent doctor. There's a Russian lady that I've seen a couple of times for colds, but not for IBS symptoms. There's my gyno that just moved away--she gave me a refill on my IBS medicine because my old GI had retired. I filled out the form based on the last GI that I saw (only saw her once). I saw her last two years ago, and I hadn't seen my old GI for two years before that. You might revise that section to first ask if the applicant sees a doctor regularly for IBS. I know that I'm not the only person who just doesn't see a doctor unless I absolutely have to. Then you might ask questions like, "Why do you not go to see a doctor regularly for your IBS?" whereupon I can say things like "They don't offer much help or new information; I can educate myself about my condition better than they can; they always order tests that I feel are unnecessary; they treat me like I'm an idiot and really frown on me educating myself about medicine and my health; they don't care to talk about alternative treatments", etc.

A LOT of people on this board have had really bad doctor experiences, and I think it's really important for someone who is studying to be a doctor to realize that. Because, before you can even start to treat someone with all of these associated health problems and bad feelings, you have to first overcome the fact that the medical establishment has probably let them down in a big way before. I think most everyone can understand that some things can't be cured, but they can't accept the fact that their doctors can't even provide any help at all. Too many people are given up as hopeless cases. The reason why I got over a bad episode a couple of years ago is because I found this board and found suggestions for calcium and probitioc use; that GI doctor that I saw at the same time's answer to my problem was to give me another colonoscopy (I had had a clean one about 5 years before). Just taking the calcium cleared up all of my excess symptoms and even helped with the average, day-to-day symptoms that I typically have. I didn't want to have an invasive test done just to tell me what I already knew--that my colon looked fine and I had no symptoms of IBD (duh; I didn't have any of the outward symptoms of IBD except diarrhea); I wanted something I could do to make my bowels work properly again! And here provided the answer for me.

I got a laugh out of the ethnicity section--White: British. Even though I'm an American by birth, aside from two Native American lines that come into my family about 100-150 years ago, EVERYONE else in my family is English (with one Scot). Not sure how I managed to wind up so homongenous.

gutastrophe
Regular Member


Date Joined Jul 2007
Total Posts : 319
   Posted 8/9/2007 10:19 PM (GMT -7)   
That was an interesting survey.  I've never been asked about my faith life before!  Very cool!

ibsresearch
New Member


Date Joined Jul 2007
Total Posts : 8
   Posted 8/13/2007 2:27 PM (GMT -7)   

Hello again,

I just wanted to thank you for taking part!  It is very much appreciated. 

Sorry I haven't checked back for a while, there seems to be some sort of 'spyware' that closes the screen when I come in from a bookmark.

Anyway, thank you both for your comments.  Just thought I'd give a little response - to your responses.

Firstly, the faith question - it's just something that crops up on UK population census forms and many studies pop it in as an extra demographic/category question.  It may well throw up one or two interesting associations, maybe people with a certain faith do or do not seek out complementary treatments. 

Secondly, the questions about your Doctor.  In short, don't worry (and thanks for your suggestions).  I (think!) introduced those questions asking about the Doc you see most often about your symptoms (if I didn't I will amend the wording slightly).  What may emerge is a general pattern that people may or may not be satisfied with different aspects of their time with their Doctors.

An interesting point you mention is information.  I think there could be a study there in itself about where people go for information and if they feel empowered/in control of things because of that.

I suppose I should mention that I was intending to only target people from the UK, but I did get some emails and interest from far and wide so decided to open it out and hopefully it's fairly easy to negotiate through with the added notes 'for non-uk participants'.

I've gone on longer than I intended, so I'll just say thanks again!!

 


Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 8/13/2007 2:43 PM (GMT -7)   
You know, if you were interested in narrowing some information down a bit, you might try breaking up your results based on where a person is from to see if people in the Uk, versus other places, feel worse about their IBS than people in other countries. In the US, a public bathroom is pretty well legally a must in most all commercial stores and public places; one thing I have seen people from the UK complain about here is a lack of readily available toilets, either because they are non-existent or staff at a store won't let you use them. As an American who spent a week driving around Britain not to long ago, I know that it's harder to find a bathroom when you are out on the road. The rest stops on the motorway are nice, but not only do we have those in the US, we also have a lot of development along all the interstates, so it's much easier get off the road and find a McDonald's somewhere to use; getting off the motorway in England anywhere was a real challenge. Nothing was ever advertised ahead of time (thank you ugly American billboards--never thought I'd say that!!!), and once you are circling in the roundabout, you never knew which way to go to find something that might contain a restroom. Thankfully the worst of my problems were while we were in London, not on the road, and a quick nip back to our room after breakfast and an extra dose of medicine usually fixed me. But I can see how it would be tougher on someone in the UK to find toilets.

Also, level of doctor-patient care may be different. We seem to have a number of people on here from the UK complaining about doctors that don't care, while a number of people from the US complain that they can't afford to go to the doctor at all. Those can present very different problems when it comes to treating people with IBS. Even if you will only ever treat people with IBS in the UK, just knowing what it's like (good and bad) in other countries can help you help them.

ibsresearch
New Member


Date Joined Jul 2007
Total Posts : 8
   Posted 8/14/2007 1:34 PM (GMT -7)   

Thanks for your comments Keriamon - if I get enough responses from the US and Canada I will compare the results with those from the UK. 

It's an interesting debate about restrooms/toilets.  I think the current London Mayor is on a bit of a crusade to provide more facilities - but he's trying to get shops and other premises to open their 'doors' to the public as such.  Typically the attitude here in the UK is that if you are going to use the facilities you have to buy something (ie a drink) otherwise you won't be allowed in.  Generally, in the UK there is a lack of maintained public facilities and I doubt it will change overnight.

The good news is, some areas of London are beginning to relax this 'attitude' a bit and welcome people to using their facilities, particularly parents with young children.

Thanks again!

 


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 8/14/2007 7:42 PM (GMT -7)   
I've also participated.  Please e-mail me for any further info; I'm a bit of an oddie. :)

Co-moderator - IBS Forum


Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 8/15/2007 8:38 AM (GMT -7)   
Maybe you can turn this research into a public information campaign. Pair up with the Mayor and do some sort of public ad campaign about how hard life is when you have IBS and no one will let you use their toilets. I mean, geez, men are talking about erectile dysfunction openly now; why not get some sympathy for people with IBS? ED is frustrating, to be sure, but no one ever hid in their house, afraid to go out because of it. ED doesn't make you mess your pants up when you don't go to a bathroom in time. Oh, for me to be in a position to make that sort of ad campaign.... :-)

ibsresearch
New Member


Date Joined Jul 2007
Total Posts : 8
   Posted 8/17/2007 5:44 AM (GMT -7)   

It's a valid idea.  I'll see how the results come out!  I think any campaign could be centred on gastrointestinal disorders per se to gain more clout.  A few support groups could be enlisted to get the media interested........

Thanks again for the comments and Sarita I doubt you are an oddie, you may prefer the term 'individual' ?

I forgot to say if any of you know people that may be interested in taking part and don't post here - then feel free to email them the study link.

A big thank you all round for everyone's interest and responses.

 


ibsresearch
New Member


Date Joined Jul 2007
Total Posts : 8
   Posted 9/23/2007 1:37 PM (GMT -7)   

Due to a really good response from far and wide, I have extended my cut off date for recruitment.  So if anyone really fancies the urge to take part, the link is in the first post.

Thanks to all those that have taken part, and just a reminder that you don't need to participate again.

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