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Also newly diagnosed with UC

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Ulcerative Colitis
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Posted 7/6/2013 3:55 AM (GMT 0)
I also have been recently been diagnosed with UC and I am at a loss because it seemed like I was getting better and yesterday (one month since colonoscope and diagnosis) I'm in miserable pain again with diarrhea. I'm on a weaning dose of prednisone (down to one every other day) and a med called Asacol. I was told I have a severe case of UC and being tested to see if its Crohn's.
all I can say is I went 7 long miserable weeks suffering with the worst diarrhea and pain I've ever had in my life!! I was in and out of the ER and urgent care, very dehydrated everything before I took myself to a gastro doc.
So now, a month on this Asacol med and weaning off the prednisone and I'm aging pain and diarrhea again.......what the heck do I do now??? I've been considering Humira. Is anyone else on that and does it work well? I'm sorry but I can't see living the rest of my life like this. Pain, severe diarrhea and messing in my panties.....no no no!!! Any advise???
Posted 7/6/2013 4:17 AM (GMT 0)
lirosaj, UC sucks. I think everyone in this site can agree with that. pain has always been one of my worst symptoms with this disease and sometimes, it's unbearable. at my worst, I usually throw up while going to the bathroom because I feel like i'm dying. once you find something that works for you, it will let up.

most people on here end up on humira after remicade stops working. remicade has a pretty high success rate for UC. I did pretty well on it, but it didn't last too long. I wish it would've because my only side effects were frozen joints. i'd definitely try that before humira. I noticed improvement after my first infusion. it's definitely more time consuming since you have to go to an infusion place (office/hospital) instead of humira injections at home. just pick something and try it out.

some of us have had success with diet modifications. I have been doing well on the specific carbohydrate diet and the paleo diet. they are almost the same thing but with a few differences. usually though, when my pain and diarrhea is so bad- no diet modification is gonna bring me out of that mess. it seems that asacol is doing nothing for you, so i'd definitely try something else before you get worse. UC hardly ever goes into remission without you doing your part whether it's meds, supplements, or diet. my dad is a rare, freak of nature case where he got UC, went on prednisone for six months, and it's been gone for almost 25 years.
Posted 7/6/2013 12:13 PM (GMT 0)
lirosaj,

Welcome to the forum.

Glad you've found us.

Yes, Joanna is right - UC sucks!

Some meds work for some and not for others.

As for the pain, try a heating pad - that always worked well for me.

Until you get the symptoms under better control, you may have to work around them.

You could try l-glutamine amino acid powder for the diarrhea.

1 teaspoon in a little water or juice on an empty stomach.

when was the last time you had your vitamin d3 levels checked?

There's a big correlation between low levels and UC.

Probiotics are also important, are you on any?

If you are interested in any of these,  there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Posted 7/6/2013 12:24 PM (GMT 0)
You might want to ask your doctor about going back up on Prednisone for just a short time more while you add either a steriod enema or a mesalamine enema. I am a strong believer in treating this terrible disease from both ends.

If that does not work, then you could think about immumodulators or biologics.
Posted 7/6/2013 12:43 PM (GMT 0)
Welcome to the club.
Posted 7/6/2013 12:57 PM (GMT 0)
Lirosaj, I'm sorry you have UC, but glad you found us. I remember how much this site helped me when I was first diagnosed.

Unlike many people here, I found that diet doesn't affect my UC at all. When I was flaring foods high in spice, fat or fiber would cause increased pain, but they really didn't affect the course of the flare.

Probiotics do help most of us, and I was stunned to find that ordinary OTC Align helped me more than any of the expensive ones from the health food stores. Again, others are affected differently.

I'm a bit prejudiced toward Remicaid because it finally got me into remission after a continual five-year flare, and has kept me there for seven years. My last few colonoscopies have showed no evidence of active UC.

Good luck to you, and I hope you're able to find your answers amongst all the varying experiences here.
Posted 7/10/2013 12:16 AM (GMT 0)
I too was recently dx with UC. It does suck! I'm still not at the point where I am ok with it, but I know I'll get there and so will you.

Yes, it is something that is going to change the way we live our lives, but think of how it could be worse. We can still use our arms and legs. We can reason through life decisions and put a smile on our face even if we are on fire inside. There are going to be good days and bad, but boy when we have a good day, we are going to live it to the fullest.

I say all of this like I'm ok with it and have accepted it, but I am just like you. Newly dx, don't know what the right things to eat are, scared of losing my colon, depressed at times, etc. I don't know if you believe in God, but I do and I know that even on my worse days he is there and everything will be ok.

Hope this helps,

Emily
Posted 7/10/2013 1:50 AM (GMT 0)
Emily89 .... I like your way of thinking. It is hard to stay positive during a flare and you put it in perspective well.

I was diagnosed 5 months ago and I have also used this site for much support and information. It will take trail and error and time. Good luck in finding what works for you and welcome to the forum.
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