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02-26-2013, 09:34 AM   #1
Mo2Willow
 
Join Date: Feb 2013
Location: Maryland
Newly Diagnosed

Hello all. I was just recently diagnosed with LC after getting really sick after Christmas. I lost 20 pounds and nothing was helping. I am coming up on my 4th week on Entocort. I have seen an improvement, but I am still taking 1 loperimide every day with it. I also tested negative for celiac. So far the only side effects I have noticed on the entocort is excessive thirst and a runny nose. Nothing I can't handle. I am glad to have found this forum and hope to be doing lots of learning about this condition.
02-26-2013, 10:22 AM   #2
David
Co-Founder
 
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Join Date: Feb 2006
Location: Naples, Florida
Hey there and welcome to the community! I'm sorry to hear of your Lymphocytic Colitis diagnosis but am pleased to hear you're doing a bit better.

Have you been working to see if there are any dietary triggers for you or are you just relying on the Entocort for now?

All my best to you.
02-26-2013, 11:01 AM   #3
Mo2Willow
 
Join Date: Feb 2013
Location: Maryland
Thanks David. I have been working on food triggers. So far red meat and anything really high in fat have been eliminated from my diet. With the exception of cheese, I am staying away from dairy. It's a learning process.
02-26-2013, 11:04 AM   #4
David
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Join Date: Feb 2006
Location: Naples, Florida
A learning process indeed. I'm three years into my Lymphocytic Colitis and I'm still experimenting with triggers.

Best of luck to you with it!
09-19-2013, 08:40 AM   #5
Mo2Willow
 
Join Date: Feb 2013
Location: Maryland
It's been a while, but here is my update. I did excellent on the entocort. I wish I could take it forever. I tried to wean off of it once, and my symptoms came back so I met with the doctor to come up with a long term plan. He prescribed me Asacol 2 800mg 2X a day, in addition to the entocort 9mg/day. The plan was to wean off the entocort a few weeks after starting the Asacol. I have been taking the asacol for a little over a week and since yesterday I am having a massive flare up. Pretty much where I was when I first got sick. Am I have a bad reaction to the asacol? I left a message for the doctor this morning, but haven't heard back yet.
07-06-2014, 05:27 PM   #6
iriechic
Senior Member
 
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Join Date: Jul 2013
Location: St. Petersburg, Florida

My Support Groups:
I have had LC since 2011, which was officially Dx'd in 2/2012 (b/c I couldn't be scoped while pregnant in 2011). For many of us, Asacol does not work. Many claim diet is everything. I wish that diet fixed things up for me as I have tried many, many elimination diets (I mean down to only four foods for five months). I hope you have found a good longterm plan or diet. If so, please let us know.

All my best!
07-09-2014, 07:18 AM   #7
Mo2Willow
 
Join Date: Feb 2013
Location: Maryland
I think I have found a good plan for me. I am down to 3 mg of the Entocort, and I take 1-2 immodium a day, depending on how I am feeling. So far, it is doing a pretty good job of managing my symptoms. I just wish there was a cure.
07-09-2014, 08:40 AM   #8
WarrenVex
 
Join Date: Jul 2014
I am a 13 year old and was diagnosed 1 weeks ago. I have been on steroids. My doctor say I should not play sport for now, but I feel good enough to start. I run 4km crooks countries. Any feed back? I have a race July 22 and I would love to do it.
07-09-2014, 03:43 PM   #9
iriechic
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Join Date: Jul 2013
Location: St. Petersburg, Florida

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Me too, me too, Mo2Willow! Glad you are maintaining well. Boy, do I wish there were a cure. It would save me and my family any suffering.
07-09-2014, 03:55 PM   #10
iriechic
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Join Date: Jul 2013
Location: St. Petersburg, Florida

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Good luck in race WarrenVex! I used to do 5Ks often. And generally ran 4miles 4x/week. I miss it. Hey, if you can do it, why not go for it! Enjoy
07-09-2014, 04:44 PM   #11
WarrenVex
 
Join Date: Jul 2014
I'm just worried I'm going against Doctor's orders and it will affect my treatment. Has anyone else been in tis situation and had different advice from their Doctor? After about 4 days of treatment, I went to the Toilet only twice during the night and then once all day. The race is still over a week away. Not sure if there is a doctor on this forum also?
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