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03-08-2016, 10:56 AM   #1
kkaras
 
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Join Date: Jul 2013
Location: Michigan

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Experiences with Chronic Hospitalizations

Hey guys!

My name is Kyliegh and I have dealt with Crohn's for nearly 12 years now. Although I've haven't posted frequently (you can see my story in previous posts, but warning, it's looongg), I have followed people's stories here on the Crohn's Forum for about 5 years now.

I have struggled with particularly severe Crohn's that has left me hospitalized innumerable times; most recently 3 weeks ago in addition to the 4 other times I've been hospitalized in the last 6 months. Each time I'm there, however, I find myself really despising the experience because my comfort level is always so low. And each time I tell myself that I am going to do something about it so that others who must battle this terrible disease don't have to do it with as much discomfort.

So this time, I promised I would try. I would like to start simply by designing hospital gowns for people like us that are more comfortable, accessible, and practical given our needs. For instance, this will include: a closed back so we no longer have to expose our behinds accidentally as we're running to the bathroom; or a hole in the sleeve for our IV tubing so that we may finally wear long sleeves without issue, and holder in the sleeve for our IV tubing so we don't trip over our tubing as, again, we're running to the bathroom; it may also include access to ports or PICCs or ostomys. I want to customize comfort for people like us!

I realize this may seem spammy, but I promise it's not. I'm a college student who happens to have severe Crohn's, who wants to help others. So if any of you would be willing to take my brief survey, it takes literally less than 5 minutes, so I can determine the greatest needs, I would be so appreciative!!

Patient Survey link:
https://umich.qualtrics.com/SE/?SID=SV_eXuJmbeDeBxoeah

"Creature comforts" is a common euphemism from where I live that basically means an item or thing that brings comfort to someone (i.e. a robe or more tv channels, etc.) Whatever it may be.

I will also create a caregiver/parent survey that I can post later.

So many thanks to you all! I hope I can bring this to fruition! And if any of you have any stories you'd like to share or specific needs you need met, please feel free to share. I want to help in any way possible. Thank you!!

Kyliegh
03-13-2016, 01:09 AM   #2
Jennifer
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__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
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