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Is "bathroom mapping" really the worst part of CD?

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Crohn's Disease
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HabsHockeyFan
Veteran Member
Joined : Jan 2006
Posts : 3240
Posted 9/6/2007 10:23 AM (GMT -7)
Our local paper had the full cover of the "Living" section on two "new" drugs to help Crohns.  Of course we already know about Tsyabri and Cimzia, but I guess it is news in this AP story about a San Diego man and CD in general.  What frustrated me was the article made it out that the worst part of having Crohns is that we have to "bathroom map" whenever we go somewhere so we know where the bathroom is because we likely have D and some cramping.

No wonder no one understands the ramifications of CD if finding bathrooms is listed as the worst part of the disease.  How about deciding on taking these "new" drugs and other drugs versus the side effects being more of an issue?  Why not tell about the awful other problems we can have like joint issues, bone loss. pyoderma, eye issues, fatigue beyond just being tired.

I am in a nasty flare and am more anemic than I have ever been.  My friend thought my exhaustion after a very short walk was becuase I was out of shape and we should do this every day.  I guess this won't help if my friends read this because they won't understand that internal bleeding is my concern right now not where the next bathroom is.  I am not just tired....I am lacking oxygen delivery to muscles and respiratory systems.

Wish I could share the article, but I could not find it in the online version of our paper.  Aaaargh frustrated again.  Yup not in a receptive mood am I.

Raise your hand if finding a bathroom is the worst part of CD for you

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dunny2
Veteran Member
Joined : Jan 2007
Posts : 3200
Posted 9/6/2007 10:59 AM (GMT -7)
No, not finding it is not the issue, being in it is!!! Still going 8-10 times even with pred. Oh, such is life.......
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dunny2
Veteran Member
Joined : Jan 2007
Posts : 3200
Posted 9/6/2007 11:00 AM (GMT -7)
No, not finding it is not the issue, being in it is!!! Still going 8-10 times even with pred. Oh, such is life.......
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dunny2
Veteran Member
Joined : Jan 2007
Posts : 3200
Posted 9/6/2007 11:02 AM (GMT -7)
Sorry about the double entry, seems to me my fingers have a mind of their own.
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FitzyK23
Veteran Member
Joined : May 2005
Posts : 4219
Posted 9/6/2007 11:30 AM (GMT -7)
Habs, it is an AP article so has been showing up in lots of papers. I read it in my parents paper too. I was also frustrated with it. It seemed to minimize the disease and did not do a great job of talking about the side effects of medications.
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pb4
Elite Member
Joined : Missing Key Value : en-US, 577 2004
Posts : 20577
Posted 9/6/2007 12:07 PM (GMT -7)
I agree, the worst part of CD isn't mapping out bathrooms but it's still a very important one in order for us to try and function in society....look at the positive, with people reading that bathroom mapping being one of the worst things with having IBD, maybe this info will make the non-IBD world more understanding to our needs...every little bit helps.

:)
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belleenstein
Veteran Member
Joined : Missing Key Value : en-US, 577 2007
Posts : 1010
Posted 9/6/2007 1:05 PM (GMT -7)
Remember these stories are written for consumption in general interest publications. It is perhaps asking too much to expect Associated Press to do a story that covers all the problems associated with crohn's. There are many general interest publications being fed by AP that would not run stories with graphic details about fistulas and abscesses and bloody-diarrhea. Just as they wouldn't run stories with graphic depictions of open-heart surgery etc.

I'm glad stories on Crohn's are reaching the health and focus pages of major newspapers because everytime one runs it gives each of us an oppotunity to further awareness.

Write a simple letter to the editor. Explain the seriousness of living with these diseases, the serious side-effects of medications we must deal with and the difficulties of the decisions we have to make in weighing the value of those medications against those side-effects. Fill in those gaps you bellieve are in the story.

We all have that power. Why not exercise it where it will do the most good.

If you can write to this forum, then you can write a letter to the editor.

Go for it.
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gachrons
Veteran Member
Joined : Mar 2007
Posts : 4527
Posted 9/6/2007 2:32 PM (GMT -7)
I remember once shopping and they would not let me use the bathroom and let me tell you it was use it or loose it and I guess they decided the bathroom would be the best place. Ouch!! what a day that was needless to say it did nothing to help my justly deserved good day out. I felt abused emotionally not to mention the panic of that old familiar pressure.Hope you feel good soon .lol gail
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gemini kiwi
Veteran Member
Joined : Nov 2006
Posts : 1136
Posted 9/6/2007 2:47 PM (GMT -7)
I liked it to a jigsaw, its just one part of the whole picture.
Tess
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sr5599
Veteran Member
Joined : Aug 2007
Posts : 1202
Posted 9/7/2007 7:18 PM (GMT -7)
I agree that's a lot of why people don't understand how Crohn's affects people. Being tied to a bathroom is only one part. The urgency and associated issues is much worse. Even worse than that is the pain!! Plus, for me at least, the night sweats and need for extra sleep all the time, even while on steroids, drives me nuts. The "D and bathroom mapping" definition seems to completely diminish the problem.
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coco9
Regular Member
Joined : Apr 2007
Posts : 68
Posted 9/7/2007 8:29 PM (GMT -7)
I think "bathroom mapping" is the easiest part of this disease.  I WISH it was the hardest.
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