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zeb
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/17/2009 3:48 PM (GMT -6)   
Hi. I was diagnosed with UC in Feb. 2008 after symptoms beginning in Dec. 2007 after starting Synthroid. I am up to 12 Asacol a day, been on Pred since July of 2008 and just coming to where I have a week left of 2.5mg. I have a terrible moonface, pitting edema in my legs, my abdomen is huge and I just keep on gaining weight. I was dancing a dance the other morning when I saw that I had gone down a pound, but two days later it was back on the scale. I am also a diabetic on an insulin pump [which the Pred. is really messing with.] I am 37 years old with a 7 year old daughter.

I have never been so depressed and frustrated in my life. How are you guys handling this? I don't know where I am. My "loose" stools are back, not sure if it's considered a flare up or what. My urgency is horrible and I average about 20 trips to the bathroom a day, if not more. I have no faith in my doctor, which I will be dealing with shortly. She did start me on 6MP back in Jan and just two days ago upped it to 75mg. a day. I don't know if it has kicked in or not. I am also using Canasa suppository every night. I know I am rambling and I apologize in advance but I just don;t know what to do. My husband is incredible but this is getting so old. I have lost me and I want her back but I just cannot seem to find her while I'm spending my life sitting on a potty.

I found that taking Immodium at the max dose helps me get by but I'm scared to do that long term. Why is no one mentioning that in all of these posts that I am reading? WHat do you know that I don't know? I have tried to do the Spinach/Sunflower seed diet..just having a really really hard time with the Spinach but doing great with the Sunflowers. Any ideas here. I'm desperate to get off the Pred. and will not go back on it for a very long time. Seems I'm having all of the problems with the Pred. that I had without it...

AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 4/17/2009 4:01 PM (GMT -6)   
I'm so sorry you're not feeling well. I just got off pred a little while ago and am still trying to get over the depression and anxiety it brought on. I believe that Immodium is not good to use in the long term b/c of the possibility of getting toxic megacolon. Hopefully the higher dosage of the 6mp will help you. How has the 6mp been working for you so far? Have you had many side effects? I'm getting ready to start it myself and am nervous.
31 yr old female currently breastfeeding (weaning so I can start 6mp)
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon


zeb
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/17/2009 4:06 PM (GMT -6)   
I have seen no use to the 6MP that I know of. I'm sure it's helped, just not sure how. I wonder how long it takes to get to the toxic megacolon? I haven't heard of that before...will have to google that! Thanks for your reply and good luck on your 6MP.
Mother of 7 year old
Diagnosed with UC in Feb 2008, been in flare up ever since?
Diabetic for 30 years years on insulin pump
Asacol, 12 tablets a day
6MP since Jan 2009
Canasa suppository once a day
Prednosine...at 2.5mg now, been on it since July 2008


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/17/2009 4:22 PM (GMT -6)   
If the drugs aren't working, and you are struggling so much -- understandably, with such a long period of flare and misery -- with trying to cope with all that's involved in managing this disease, maybe you should consider surgery, get cured, and get on with your life. Ask yourself, do you still want to be dealing with this 20 or 30 years from now?
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, seasonal? Back on prednisone, 40-30-25-20-15... Humira denied, started Remicade 4/12. 

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