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

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HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   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
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


dunny2
Veteran Member


Date Joined Jan 2007
Total 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.......
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


dunny2
Veteran Member


Date Joined Jan 2007
Total 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.......
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


dunny2
Veteran Member


Date Joined Jan 2007
Total 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.
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


FitzyK23
Veteran Member


Date Joined May 2005
Total 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.
25 Year old married female.  Diagnosed w/ CD 2 years ago, IBS for over 10 years before that, which was probably the CD.
 
I started getting a ton of junkmail after putting my myspace profile link on here.  Im taking it off but if you want to contact me just email me and Ill give you a link to my myspace.  Sorry!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   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.

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


belleenstein
Veteran Member


Date Joined Feb 2007
Total 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.
Belleenstein:

30+ years living with Crohn's.


gachrons
Veteran Member


Date Joined Mar 2007
Total 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

gemini kiwi
Veteran Member


Date Joined Nov 2006
Total 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

sr5599
Veteran Member


Date Joined Aug 2007
Total 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.

coco9
Regular Member


Date Joined Apr 2007
Total 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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