I need to draw on your experiences

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

brghtii
Regular Member


Date Joined Aug 2008
Total Posts : 24
   Posted 9/22/2008 5:41 PM (GMT -7)   
I have been trying to read as much as I can.  I have some questions and wonder what you direction you would go.  You each have had so much more expreience in this.
 
I don't have the common D, mostly jsut pain.  The only time it really went away was when I took the Prednisone (20mg) my GI gave me a script for.  He only gave it to me to "try" to see if that would take care of the pain.  He told me my symptoms were not consistent with crohn's.  Iw as diagnosed back in Feb with it in my decending and sigmiod colon.  He sent me to my GYN who told me I was not suffering from anything female.  I then went to a family practice doc who said maybe it ws my gallbladder.  (wrong side)  Had an US done, everythign looked great.  Went back to GI he said well "take the pred and see if it works".  It did, i felt WONDERFUL!  The dosage was low enough I didn't have the horrible side effects I had 5yrs prior on it (pg with #4).  The symptoms began to return on day TWO of weaning down.  I am on 10mg till tomorrow supposed to wean down to 5mg for the week then go off.
 
He gave me a script for Entocort, I started it on Saturday.  My pain is mostly in my back and on the left side (decending /sigmiod colon areas).  It does move to the right side somewhat.
 
While takign the pred the swelling in my gut decreased and I felt awesome.   I had the high that Veebo wants with the entocort.  I felt great!  I was/am still snappy and a wee bit of insomnia (minimal).  The pain is constant.
 
I have 5 kids the oldest is 10, youngest 2.  I stay home, luckily.
 
What direction would you go?  OH and I had blood work done before I started the pred.  It came back ALL NORMAL.  I have them all confused.  The pain is real!  I am begining to doubt myself though. 
 
I know you all have this DD worse than I do.  Mine has been labled mild.  I just feel that they are jsut trying to test meds on me, not seeing what is really wrong.  Is that normal?
 
Sorry for my rambling.
shelley
Shelley
______________________
Mom to 5 little ones.  First dx of crohn's in 2003 (while pg with #4), then it was changed to IBS.  2/08 I was rediagnosed with crohn's. Most of my crohn's is int he sigmoid colon and decending colon.  I'm responding to crohn's treatment, so they say it isn't my Endo.  It is very hormonally charged though.
 
I'm currently taking Pentasa 4 2X daily 
3mg Entocort
weaning off small dosage of Pred.


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 9/22/2008 5:52 PM (GMT -7)   
your journey sounds a bit like mine. I have been diagnosed and undiagnosed and maybe diagnosed, and my main problem, by far, was pain. I finally went off gluten (I don't have celiac) and after a few weeks my pain became very mild and has stayed that way for 6 months. I just have to throw that out ther. also, I had (probably still have) adhesions from previous surgeries that also added to the pain. not much can be done about that, but I am happy how I feel now with dietary changes and am off all meds.
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


brghtii
Regular Member


Date Joined Aug 2008
Total Posts : 24
   Posted 9/22/2008 6:01 PM (GMT -7)   
hmmmm....i went to a NAET doc (not sure about him still) he said I had sensetivies to lots of stuff.  Maybe I should give gluten the boot.  Dang!  I'll look into it.
 
Thank you for your reply.


Shelley
______________________
Mom to 5 little ones.  First dx of crohn's in 2003 (while pg with #4), then it was changed to IBS.  2/08 I was rediagnosed with crohn's. Most of my crohn's is int he sigmoid colon and decending colon.  I'm responding to crohn's treatment, so they say it isn't my Endo.  It is very hormonally charged though.
 
I'm currently taking Pentasa 4 2X daily 
3mg Entocort
weaning off small dosage of Pred.


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 9/22/2008 7:46 PM (GMT -7)   
I have to second YogaProf's vote for dietary changes. If your bloodwork is fine, and your ultrasound came back fine, I'd keep tapering the prednisone and look into some dietary modifications. I went gluten-free too (it was a last resort and I was NOT happy about it), but it's working. I'm down to 5mg Prednisone in my taper and my symptoms have NOT increased like they usually do when I taper down. It's worth a shot, anyway, especially if you can find a good doc that's willing to help you make the modifications. I went to an "Applied Kenesiologist" (sp?), and he does intense surveys of ALL of your symptoms and then takes all modifications very slowly with intense observation.

Good luck to you, whatever path you follow!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 06, 2016 3:08 PM (GMT -7)
There are a total of 2,733,713 posts in 301,146 threads.
View Active Threads


Who's Online
This forum has 151279 registered members. Please welcome our newest member, kimbercin.
378 Guest(s), 14 Registered Member(s) are currently online.  Details
Katie95, 3HumpedCamel, div@, KAR90, kimbercin, northerner, dismissed, Tick41, Hoshie, JohnBa, Tudpock18, ks1905, Tim Tam, Tall Allen


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer