05-12-2014, 12:14 PM   #1
Kristakrz's Avatar
Join Date: May 2014
Location: Mississauga, Ontario

I am a mother of a 4 year old daughter, first diagnosed with UC in 2007 but I suffered for many years before I got diagnosed. Have tried everything from Salofalk suppositories, to enemas, to Imuran, Prednisone, Remicade, Simponi, Asacol and others I am forgetting. Nothing but prednisone has worked for me. I have not been symptom free since before I can remember. With two exceptions if I am on 60mg plus a day of Prednisone or when I was pregnant from 3 - 9 months with my daughter.
I have had some adverse reactions to medicine like Shingles in the eye x 2, drug induced lupus.............
Next they want me to have surgery but I am terrified. I feel more sick form the years of medicine then the original disease, but it is so hard to tell symptoms apart.
I'd love to hear from and connect with people that have had a full colectomy.
I also want to find a support group in real life to talk with others before I proceed with the surgery. But I fed up with feeling [email protected]#&*ty.
05-12-2014, 12:48 PM   #2
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

My Support Groups:
Hi kristakrz. Welcome to the forum. I have crohns so I'm afraid I don't have much to add. I'm sure others will be along soon. Sending you my support and best wishes.
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:

Living in Ontario with no drug benefits?

Trillium Drug Program:

05-12-2014, 05:21 PM   #3
theOcean's Avatar
Join Date: Jan 2014
Location: Toronto, ON, Canada

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Hello there! Welcome to the forum. We have a section for people who have stomas here, as well as a support group. Feel free to ask any questions there.

I'm sorry to hear you've had such bad experiences with medications... it really is difficult to tell the symptoms apart from IBD, though. What medication are you on currently?
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-12-2014, 09:19 PM   #4
nogutsnoglory's Avatar
Join Date: Sep 2009
Location: New York

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Wow I never knew you could get shingles in the eye, that sounds horrible!

I second what theocean said as the stoma forum is a great place to connect.

When are you going for surgery? Will You be getting an ostomy?

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