Not sure i want to do this!

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auntkay
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Date Joined Apr 2004
Total Posts : 1199
   Posted 9/25/2008 3:49 AM (GMT -7)   
idea  When i got home from work yesterday i saw the large envelope at the back door. My first thoughts were ok whats my hubby ordered now. I knew i didn't have anything ordered so i picked it up and looked and it was addressed to me. Hummmm i say... what in the world could this be. I went in the house let the dog out and opened the fed x envelope. It was from a research co. wanting me to participate in a research, to observe what a day -in -the -life of a crohn's disease patient is like. This research is designed to discover the practical,emotional, and psychological issues we face and to learn my opinion about the current state of treatment are.The findings will help to create solutions that address unmet needs for patients like us. The observational methodology- known as ethnography -requires me to allow a trained researcher to observe me on a typical day for 5 to 6 hrs.,followed by an hr. long in depth interview.If i should agree to do this a researcher would come to my house and observe me doing what i do ,including interacting with other people family,friends,co-workers they would accommodate to my routine and want to observe me on a day that is as typical as possible. Hummm not sure if i'll do it i would havew to have it approved by my employer and that may not work out . So tell me what would you do in my case. Oh and i do have to pass some qualifying questions ,any thoughts out there!!

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 9/25/2008 5:58 AM (GMT -7)   
I'd do it. If its painless and contributes in anyway to understanding and improving the quality of life for crohnies, why not? Besides, its always kinda fun to "tweak" our postal management. *wicked grin* AND it just might prove informative to management just how seriously Crohn's disease must be taken and how devastating it can be, especially if they talk to the "observer" at all and I would imagine they WOULD want to and insist on doing so before approving or disproving the request.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 9/25/2008 7:01:25 AM (GMT-6)


Sniper
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Date Joined Feb 2004
Total Posts : 6518
   Posted 9/25/2008 7:27 AM (GMT -7)   
I'm with C2. I know it sounds intrusive, but one day is not that bad, and you may help someone with this DD.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


JohnD
Regular Member


Date Joined Aug 2004
Total Posts : 472
   Posted 9/25/2008 7:43 AM (GMT -7)   
I agree with C2 and Sniper.
Not that i would want you to be in a flair(I wouldn't want that for any one of us), but i wonder if this research will address what life is like for patients during a flair up.
I don't see how this can do anything but help.
40, Married?????? w/ 4 kids
Had problems (pain, bleeding, nausea) since age 13.

Dx'd with Crohn's in Spring of 1991.
Broke the L1(mid back) in 1999
went on Remicade in early 2004.
Pain Doc believes the LLQ pain are pinched nerves
spinal cord stimulator implanted july 3, 17, Aug 27


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/25/2008 9:51 AM (GMT -7)   
I agree with the others it might do some help. Certainly sounds interesting . lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 9/25/2008 12:05 PM (GMT -7)   
I would not let them sit in the bathroom with me though.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 9/25/2008 6:32 PM (GMT -7)   
I don't don't know if a "Normie" researcher could handle 6 hours of a flair, sometimes even medical staff get all sissy over this one. The researchers should be required to read Randy's page first. An E.R. Doc last winter told me they didn't even know what Asacol was after I requested a script to try and avoid a flair when many members of my family suffered pneumonia (I was there for sinus infection)and Hubby was on ICU (different hospital) with pneumonia. Then he changed the subject. He was real vague after I told him I had Crohn's. ICU nurses taking of my Hubby treated me like I was their patient too, warm blankets everytime they brought them for him. One or two had family members who had Crohn's so they reminded me to eat SCD and I did avoid a flair. I still don't think they were real though, rumor has it the nurses at Mercy Hospital in OKC are Angels. I believe. smilewinkgrin
Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reiters-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
 
                                              Margie11


Keah
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Date Joined Nov 2003
Total Posts : 7314
   Posted 9/25/2008 9:50 PM (GMT -7)   
Where do I sign up? I wouldn't mind someone sitting here for 6 hours watching me try to get comfortable and fighting with hubby who alternatly calls me lazy or a junkie. SIgh.

Anyway, I think this study is a wonderful idea and I really would do it myself. I'd have to say that it's likely to be difficult to get authorizatin for this to occur at work. Employers all look at the bottom line and in this case, it's liability. What if this non-employee were to somehow get hurt? Of course I think that stinks, but it's been my experience with previous employers that all kinds of waivers and such needed to be agreed to and signed first So, if they dny your request, you might want to ask both your employer and the researcher about signing some type of waiver of liability.

Good Luck.
Keah a.k.a. Wormy
 God helps those who help themselves.
Please help us support this invaluable forum.
Crohn's Forum Moderator


athensgirl
Regular Member


Date Joined Apr 2007
Total Posts : 254
   Posted 9/26/2008 2:38 AM (GMT -7)   

If it's just for one day I'd do it too.  If we are talking for more days....the answer would be no.  I don't like people staring at me, especially in my own house.  Of course I wouldn't be much help either, because my symptoms are not bad, and no one really notices I'm a chronie.  So maybe the researcher would get bored very quickly!

I think you should decide based on what you really want, and not what is generally the nice thing to do.

Christina

 

 


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 9/26/2008 2:21 PM (GMT -7)   
I wouldn't do it, one day = useless study, we all know that one day is not a good indication of a life with this problem...

but, then again, maybe it could help some others understand our challenges....
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 9/26/2008 4:23 PM (GMT -7)   
I think if they could see the average day in a flare of a crohn's disease patient they would be amazed. I say go for it.
============================================


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 9/27/2008 8:19 PM (GMT -7)   
crap auntkay, send 'em to my house! will they do my windows while there here?
randynoguts 



     http://www.geocities.com/randynogutsweb/


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 9/27/2008 9:25 PM (GMT -7)   

A one day study? Hmmm, I dunno what that would do really, unless its a "bad" day, because 70-85% of my days are semi normal, only running to the bathroom a lot. Id be a pretty boring study. 

A study on me would show

Melissa:

Woke up, took meds, went to the bathroom, went to work (bathroom like 5-10 times), came home, made dinner, watched law and order reruns, took meds, went to the bathroom, went to bed.

Catch me in a flare tho, and I'll make an intesteresting story =))


Dianogsed with Crohns at 16, 21 yrs old now.
Surgeries:1 Bowel Resection, Gallbladder Removed. Another Resection Scheduled for September.
Current Meds: Humira (weekly), 60mg Pred, Levbid, Nexium.
 

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/27/2008 11:15 PM (GMT -7)   
I would do it...and I'd let them in the bathroom with me...mind you it would have been more effective when I was going 30+ times a day but still, to see the panic stricken look on my face when an urge hits (even if it's only about 5 times a day now) they'd still likely be impacted by that expression alone.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 9/28/2008 3:45 AM (GMT -7)   
I would check out the research company. I would want to make sure they were reputable and had a good standing in the research/medical community...after that, I would! It wouldn't be the first time I had done research/training in the name of Crohn's...at least they wouldn't be sticking needles and things into your body:)

Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 9/28/2008 6:51 AM (GMT -7)   
  Please research the researchers, as Ohio suggests. I think any of us would do just about anything to insure that our decendants will suffer just a little less than they might otherwise. Those of us who have tried/used macrobiotic, SCD or other extreme methods know that we will go to the max to find a little relief or regain some brainpower. God bless all of you who have helped with research projects. Please check out my post about Paul Newman, and the hole in the wall camps. These are good to know about when we are posting, and people are trying to give the children something of a good childhood. Thanks to all of you for letting me speak my mind, it's all I have, but seriously I'm really grateful for the days I have mind power.
 
                                                   turn yeah smilewinkgrin

Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reiters-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
 
                                              Margie11

Post Edited (Margie11) : 9/28/2008 7:55:08 AM (GMT-6)


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 9/28/2008 7:49 PM (GMT -7)   

If the "research group" checks out okay I would go for it!

Sniper-Are you gettin' territorial over that fancy office of yours?!

 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/28/2008 8:17 PM (GMT -7)   
If you do it, make sure you talk them through a lot of your internal dialogue: "ok, now that we are in the car I have to start thinking about where the next bathroom is, now I am hoping we don't hit traffic, now I'm thinking about what I can eat for breakfast since I have a 10 am meeting to sit through... now my stomach is hurting" etc.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.

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