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

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

No, not finding it is not the issue, being in it is!!! Still going 8-10 times even with pred. Oh, such is life.......

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.

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.

I liked it to a jigsaw, its just one part of the whole picture.
Tess

I think "bathroom mapping" is the easiest part of this disease.  I WISH it was the hardest.