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mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 8/20/2007 9:46 PM (GMT -7)   
Is there a family guide to help family members understand uc?
Presnidone 30mg tapering
Asacol 2x 3 times per day
Canasa suppositories 1x per day
Hydrocortisone Enema 1x per day


Kanditron
Regular Member


Date Joined Oct 2006
Total Posts : 148
   Posted 8/20/2007 10:50 PM (GMT -7)   
There's nothing that I have personally been able to find.
My family has actually been very studious about the subject also, I'm fortunate in the fact that an Aunt of mine has an IBD and a good portion of my family already understands.
The best suggestion that I can give you would be printing out some information from ccfa.org highlighting the ailments. It's a great information resource.
Recently diagnosed 9/06
http://www.myspace.com/kandice789


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 8/21/2007 5:20 AM (GMT -7)   
My GI's office usually has some decent brochures that lay out general UC information. I actually picked up one for my parents last time I was there.
Tabitha

100mg Azathioprine, 2 Fibercon, Colazal-9 a day (attempting to cut this down to 6 by slowly tapering), acidopholis pearls, just added Prilosec OTC

http://www.healingwell.com/donate
Co-Moderator UC Forum


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 8/21/2007 6:29 AM (GMT -7)   
I don't know of any family guide. There really should be though. I put together an info pack for my dad years ago and my mom did all her own research. My husband has learned through asking me questions. I wish I could get him on here!!!

Any questions you or your family have are welcome here. I think this is a great place for families. I know my husband feels as though I exagerate sometimes but when he sees a thread of people complaining about the exact same thing he understands better.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, back to 30 mg pred.
Waiting for prometheus test to start Immuran
Prontonix once daily for acid reflux, zofran twice daily for nausea


quincy
Elite Member


Date Joined May 2003
Total Posts : 29859
   Posted 8/21/2007 9:23 AM (GMT -7)   
There's tons of information on the internet which can be printed out. Make sure you include some awesome pictures of a raw colon..etc just for impact.

Some just don't want to "get it" because that's the way they are.. It would then mean they'll have to actually become emotionally connected to someone's butt and suffering. Not all people want to go there.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


AshNH
Regular Member


Date Joined Jul 2007
Total Posts : 208
   Posted 8/21/2007 2:33 PM (GMT -7)   
This may help you and your family...

http://www.amazon.com/Questions-Answers-Disease-Ulcerative-Colitis/dp/0763739677/ref=sr_1_1/103-1627232-5907820?ie=UTF8&s=books&qid=1187731754&sr=8-1

I found it to be a good book answering many questions that I had when I found out about the disease. You may wish to check it out at the local bookstore before purchasing it.

The name of the book is "100 Questions & Answers about Crohn's Disease and Ulcerative Colitis: A Lahey Clinic Guide"
Ash 39 NH, vegetarian
Diagnosed with UC July 06 (I think 6/6/6) during 10 day hospitalization
Current meds: Asacol 12, Imuran 150mg
Centrum Silver, VSL #3, olive leaf extract, DHA-Omega 3, L-glutamine

Post Edited (AshNH) : 8/21/2007 4:00:19 PM (GMT-6)


birdiem
Regular Member


Date Joined Aug 2007
Total Posts : 326
   Posted 8/21/2007 2:46 PM (GMT -7)   
this may sound a little unorthodox, but you might want to look at some books/information on alcoholism. i have been doing some reading on the subject (my father is in recovery) and there is TONS of information on how to explain a disease to someone who doesn't consider what you have a disease (did that make sense?) i know i have trouble getting my family and friends to believe what i have is "real" and not just a weakness or being dramatic. alcoholics often have to deal with the same problems and there is so much information about alcoholics and family, you may be able to use some to help them understand UC. let me know if this is of any use to you--or what anyone else thinks about this connection. i'm very curious...
diagnosed with cecal volvulus, 2006; two colon resections in the same year
diagnosed with colitis 2007
malrotated colon
no cecal valve, removed during surgery
 
 
probiotics


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/22/2007 7:19 AM (GMT -7)   
The CCFA has some great resources that might help your family. www.ccfa.org

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 

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