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Ulcerative Colitis
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Posted 4/30/2014 5:27 PM (GMT 0)
Dear All,

I really need the help of anyone who passed through this. I recently got diagnosed with UC (last november), and I am still not accepting the idea that I will have to take meds for the rest of my life. I am 24 years old and feel too young to be sick.
I was given "prednisone" for 5 weeks and pentasa extract 2 mg and ASACOL supp when I get a flare. I am working in a remote location in the oil and gas field and I got a flare 2 weeks ago, I tried the ASACOL it ddnt help , and then I stopped going to the bathroom at all, with only blood discharge. I had stomach pain and discomfort,and fever so I had to leave on an emergency leave. I was given steroids in the IV , and then went to c 2 doctors: 1 said I should start AZATHIOPRINE ( IMURAN) and the other said its only 10 cm so I should start ASACOL supp twice a day before going on steroids and later azathioprine if nothing else works. I am currently feeling depressed and not wanting to leave the house at all. I have lost a lot of weight . I used to be very athletic and muscular, and now i feel weak , thin, and generally sick. The idea of having to wait for another flare, and interrupting my life like this is scaring me. I had many dreams to pursue. I don't know anyone with UC, so I don't know what types of food to avoid and what lifestyle I should follow. Please help me out here. Thank you
Posted 4/30/2014 5:32 PM (GMT 0)
I wish I had words of comfort but know this, you are not alone. I am pretty depressed right now too. I've had uc since 1999. I have long periods of remission sometimes but hardly any low level meds work for me. I am currently not on any of the meds and really only have biologics left and I can't bring myself to take those.

Look into the Paleo or Autoimmune version of Paleo diet. I take Ultra Infammix everyday but it's expensive. Also google LDN. It's helped me for a few years.

I felt funny this morning looser stool and pain and I am a wreck now just waiting for a flare.

I pray you find something that works for you. Big Hug.
Posted 4/30/2014 5:39 PM (GMT 0)
Are you saying that you're not flaring now and just waiting until the next flare? What exactly was it that did put you into remission since you said Asacol didn't help and you haven't started the suppositories or the Imuran yet? If you find something that works to put you into remission (other than steroids) then you should continue with those meds even while in remission. Don't wait for another flare and then start taking meds.
Posted 4/30/2014 11:31 PM (GMT 0)
I can 100% relate to your feelings about this crummy situation. Being diagnosed with a chronic disease is tough for anyone. I was told that rectal meds can take a solid week before you notice any improvement. If it were me? I'd try the twice daily suppositories first and go from there. We're you not on the suppositories as part of your maintenance plan?
Posted 4/30/2014 11:59 PM (GMT 0)
Yes, totally depressing and hard to accept. Btw, totally not glamorous but I would request the Mesalamine enema...more Med, gets up higher and you can use supp in the day. Good luck.
Posted 5/1/2014 11:10 AM (GMT 0)
thank you all for your messages. Now I started asacol supp twice a day , and 2 g Pentasa oral. I hope Ill b feeling better soon and stay in remission for a long period. I am not sure about the enema because I heard it is annoying more than the supp, and I am barely accepting the supp. I also don't know for how long I should be using the supp and if I should go to once per day if I feel better. Thank you all for your advice. By the way, I was on only pentasa oral once a day before, nd I had 2 flares so far. Good luck to all of you.
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