I wanted to ask you for some advice; I’m working on a ph.d. in human behavior and near environments, with a focus on residential environments (Housing mainly). Lately my research has all been on aging populations and home family caregiving. And I have planned for my future research after school to look at families living with chronic disease (especially IBD), however, as of late, I’m feeling a need to not wait till the future but to do chronic disease research now. Our whole homelife shifted b/c of UC and now jpouch and I've often felt the only place we could go for real information is this site, and i would like to contribute to disease awareness from the social aspect through research.

I was wondering if you any of you have wished that researchers (social science researchers not medical science) would explore certain issues that have affected your family, yourself, your homelife, etc…

If so, what types of issues would you like university researchers to explore that would relate to home, family, disease ?

Any suggestions could be really useful for isolating issues of collective importance versus just what I think is important to study.

Thank you so much for your suggestions!
Megan

Dear Megan,
Yes. It's me.
You've mentioned your academic background and I think it's noble to approach the subject of these diseases and surgeries on not only the patients but their families.
I think studies have been done on caretakers of family members. If I'm not mistaken, I think Harvard may have done one a few years back, showing the increased risk of heart disease and stroke on those taking care of chronically ill family members.
But for UC and Crohns and the surgeries, it would be great if someone documented this. Specifically, I wish researchers would look into how someone with an IBD has their day/work/relationships/sleep broken up by constant involuntary trips to the bathroom. The sudden urge to run to the toilet really makes you feel like you're a puppet dancing on the devil's string. (I just made that up.)
These are terribly disruptive diseases, as you and Mark know. The other side of it is the success rate of these operations (which is very high at 93%) compared to the patient's expectation and outcome. How does the person's expectation match up to the reality of the surgery. Also, is their any correlation between the patient's attitude and the outcome of the surgery?
It's clear from so many posts that we've all struggled terribly and there's a mental or spiritual toll from years of physical abuse. Lots of talk about depression, perseverance, giving up, hanging on. Seems like someone should document all that at some point.
Sorry for the long reply. I hope Mark is doing well. I'm coming along slowly.
Jeffrey H.

Personally, I would be interested in learning what factors (personality or otherwise....age, sex, marital status, level of education, etc.) contribute to the quality of adjustment of individuals who have had the ileostomy takedown. It seems to me that some people expect much too much, much too soon. I often wonder why. I have a feeling there are probably more variables than practical to compare. Good luck on your study!