So frustrated!!!!!!

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jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 7/31/2010 5:51 AM (GMT -7)   
So far this week I've got a rip roaring yeast infection down there and have swallowed my temporary crown. On top of that, I am having a major flare up (again). I have been going to a doc at mayo for 1.5 years now and I think I am gradually getting worse. The nurse put me on antibiotics a few weeks ago and those seemed to help (flagyl.) but after being off them, the flare came back worse than ever. The doc called me back yesterday and told me to go on Rowasa enemas, so I started last night. I am supposed to go out of town on Tuesday for a conference and am so worried about traveling with this.

When I flare, my colon just shuts down and I can't go to the bathroom. I feel no different from using the rowasa for one night, in fact I am in worse pain than yesterday. I am so frustrated I want to get a consult from a colorectal surgeon. I have diverticulum with inflammation but a positive ASCA for crohn's. I don't think they know how to treat me and I think if they just cut out the diverticulum and inflammation, I might be fine!!!

I am thinking my other option is to go to another GI doc. But then, I'll have to get another set of CT scans (and I am allergic to the dye) and another colonoscopy (I've had 3 in the past 1.5 years.) Thanks for letting me vent....
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil, omeprazole for reflux, wellbutrin, 5 mg prednisone/day.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA, LOTS of joint pain followed by a recent set back with the colitis.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/31/2010 7:41 AM (GMT -7)   
I do not see that you are on any Crohns meds at all, only the 5 mg Pred. Maybe if you could get on one of the meds such as 6mp/Imuran or one of the meds like Remicade or Humira, maybe you might see some improvement. I am sorry you are feeling so bad, sending healing prayers your way.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 7/31/2010 9:09 AM (GMT -7)   
Thanks Gail. I need a new doc and a 2nd opinion for sure or perhaps a surgeon. My current doc does not think I need stronger oral meds or that I have crohn's b/c the biopsies haven't shown it. I will keep up with the rowasa and see how it goes. I am just anxious b/c I have to go out of town on Tuesday and don't know what to do if I am in a flare. I haven't had a bm in about 3 days now. I don't know whether to cancel my trip or not. I'd lose about 900 dollars if I did.

It is SO good to see you back Gail !!!!! I hope you have continued healing and recovery!!! BIG HUG back to you!!!!!!!!!!!!!!!!!!!!!!
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil, omeprazole for reflux, wellbutrin, 5 mg prednisone/day.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA, LOTS of joint pain followed by a recent set back with the colitis.
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