Tuesday, April 21, 2009

It's up to you readers...

The first ever online Crohn's chat went off without a hitch last night and was great! We definitely need more people next time. It was great to know we aren't alone in this and others who have actually been there can really understand how we feel. I would like to thank Bright Side for setting us all up and getting us all together and thanks to the gals that joined in!

Now for a question...
I have finally gotten down to 5 mg of prednisone but I am not doing so well. I am going to the bathroom anywhere from 8 to 15 times a day and it's waking me up at night as well. I am exhausted and my stomach is hurting off and on. This has been going on for about a week now...probably longer if I think back. I want to get off the prednisone. Others feel I need to go back up to at least 10 mg. What do you think? My goal was to be steroid free by May. Other than the above mentioned symptoms I feel good. I have felt worse. I'm not supposed to see Dr. GI until May 4th or sooner if I reschedule. Got any opinions?

Let me just say this about the prednisone:
I'm sick of the weight gain (30+ pounds in 6 months this time around!!!)
I'm tired (no pun intended) of the insomnia
My skin is starting to break out like I am 17 years old or something
I don't think my head has stopped hurting totally one time in the last six months
I am so full of different emotions all the time I want to cry and laugh and scream and dance all at the same time. I feel totally CRAZY!
I believe there has to be another option besides prednisone
All of my tests so far show my Crohn's is not active...so where is all the diarrhea coming from?

Let me know what you think. Survey says...

1 comment:

BrightSide said...

Thanks Jenni!

I think you need to ask your doctor to give you some new things to try. Prenisone is evil, but it sounds like your doc is a one trick pony. There are other drugs out there, is he transitioning you from Pred TO something, or from Pred to nothing??

Also, I know I say this alot, but are you experimenting with food triggers? Food is my # cause of diarrhea.