Ileostomy Research-please participate!

This is the place to post announcements for chat rooms, support group special events and newsletters (please do not post such messages in the regular discussion forums).
Anyone can read. Only registered users can post.
No commercial posting allowed.

Moderators: Bob Webtech, Jimbob

Forum rules
Before posting, please read our Discussion Board Terms and Conditions and our Code of Conduct.
Post Reply
ldenz
Posts: 10
Joined: 2010-07-30 17:37:19

Ileostomy Research-please participate!

Post by ldenz »

I am Nurse Practitioner student at Malone University, Canton, OH, conducting research on body image of people with a temporary or permanent ostomy that is a result of ulcerative colitis. This research also aims to explore what healthcare providers have done to impact that body image. The reason I have chosen this research is I have watched my father and sister both go through this surgery, with great success physically, but with some emotional struggle. I want to learn more, from you. If you are interested in being a part of this research, and are 18 years or older, please click on the links below, clicking on the first link (personal information form) first to provide some brief information about yourself, and then continue to the questionnaire. Thank you so much for your time and participation!
Lauren Denczak

Personal Information form: http://www.surveymonkey.com/s/KRD8CLB
Consent/Questionnaire: http://www.surveymonkey.com/s/KR7VNJL

This post has been approved by the UOAA Board of Directors.
buzzqrd
Posts: 6
Joined: 2011-02-04 07:10:42

Re: Ileostomy Research-please participate!

Post by buzzqrd »

I've had a Urostomy since 1994.
I had NO idea I'd see what I did when I woke up. I thought "there goes my sex life" and embarrased because I thought everyone could see especially in summer, no swimming or thin shirts
I was so depressed I really wanted to die. Lucky for me theses feelings slowly passed and I adapted to my situtation. 6 mo-1 year
My best advice to the health community is to be sure to explain everything in detail and show them what it looks like before surgery and that healing won't happen over night.
My surgery saved my life.
chefsusan1
Posts: 5
Joined: 2009-08-17 15:30:51

Re: Ileostomy Research-please participate!

Post by chefsusan1 »

Very good idea about letting the health community give the patient a full understanding what will happen during and after the surgery. I think many of the hospitals now have DVD's that explain the surgery and the outcome in detail. A picture is worth a thousand words.

Susan B
User avatar
SeaQuest
Posts: 106
Joined: 2013-12-10 20:08:04

Re: Ileostomy Research-please participate!

Post by SeaQuest »

I apologize for not answering while you were still in search of survey participants, but for those who might just be surfing questions later on I'll provide a little background on what happened in my case.

After a few years of doctoral speculation, my doctors in Jackson MS stated that I may have had ulcerative colitis and that I did have Crohn's. At this point, I obtained a second opinion from Vanderbilt University who after about 6 months decided that my Jackson doctors were correct - both wanted me to have an ileostomy. However, the main difference in the two hospitals is that Vanderbilt required that I see one of the psychiatrists prior to any prognosis. I joked about this to no end, even after having seen him, I still saw no real use in the session I attended. HOWEVER, after receiving the same diagnosis, I decided to have the surgery closer to home and had it near my home in Jackson.

I have since told my hospital here that they need to institute the same policy of requiring that psychiatric screening. It took me two weeks after the surgery for me to even touch my stoma - I wanted nothing to do with it. I've always prided myself in how tough I was - especially mentally. But this change was beyond anything I had prepared myself. My wife has seen me cry once in my wife - watching The Pride of the Yankees. Well, the two weeks following my surgery had me crying probably 300 times. I hated every minute of my day. When not crying, I was praying that I would die in my sleep.

It took about a month before I slowly started adjusting and now realize that I feel better today than I've felt in years. There are even times now where I can appreciate my situation. For example, while at a recent estate auction, everyone else in my family was forced to sit in the dreaded port-a-potty a some point during the day - not me. I was able to walk in and not have to worry about anyone else's poor aim nor touch anything I didn't want to touch. I no longer have to keep toiletry supplies in my vehicles so I can pull over on the side of the interstate with 20 seconds of notice, and I can now participate in activities that I had pulled away from while sick.

I'm not certain of the percentage of hospitals that require psychiatric screenings prior to this surgery (nor other similar surgeries), but I think the few dollars spent in that session were well spent.
Colectomy with Permanent Ileostomy - July 2013 (due to Crohn's and Ulcerative Colitis)
Post Reply