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Ulcerative Colitis
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Posted 10/17/2013 8:37 PM (GMT 0)
Hi Everyone! I'm Jewels and new to this forum. I was recently diagnosed with Ulcerative Colitis a little less than 3 weeks ago. This was after about a month of being sick as can be to the point of ending up in the hospital for 4 days. I just turned 25 on the 4th so this was a shocker because up until now, I've never experienced any major health issues. I joined this forum looking for support and advice on how to manage the disease. I don't have anyone else in my life with the same issue so its hard not having someone who can relate with what I'm going through. I am currently taking Lialda and tapering off prednisone weekly ( started at 40 mg and tapering 5mg a week)  I absolutely hate the steroid, it is making my face puffy and I'm retaining water like crazy but I hear that's a pretty normal reaction to it. I'm looking forward to being completely Prednisone free in about 5 weeks! I'm sure many of you can relate to my feelings on this. However, I have to admit that the medications have done their job and I am doing a lot better than before. The healing process is a slow one though.

Anyways, enough of my rambling. Just wanted to introduce myself and hopefully get some advice :)

Posted 10/17/2013 8:47 PM (GMT 0)
Welcome, I just joined here last month, best thing I could have done. There are a ton of people with experience and knowledge on here that are more than willing to help.

I know what you mean by the side effects of the prednisone, I just finally was able to start tapering yesteday.

Managing the disease can prove difficult simply because it affects everyone differently. We all have different reactions to medications and diet. What works for one, might not for the other. It is more of a trial and error scenario, but at least on here you can get numerous ideas of new things to try if you start running into issues.
Posted 10/17/2013 9:20 PM (GMT 0)
Welcome to the group. You will find lots of great people,good data and advice. Use the search bar to seek topics. Everyone reacts differently, and we try to include our experiences without getting too preachy!
Don't worry about the moon face, it goes slowly away if you are able to ween from the pred. Don't be shocked if symptoms return as you ween. It would be good to have rectal meds on hand. Happy reading!
Posted 10/18/2013 2:27 AM (GMT 0)
I am fairly new here too and would have never been able to make the cross country tripI just made without the vast amount of knowledge I learned on here. I have been put on Penasta and Prednesone (and been on them since July) but I still had a lot of blood and mucus. I then started taking Thorne something (not near my med bag and my memory stinks) and oil of oregano and 3 days after I started those no more mucus and hardly any blood. I never would have tried those things without these guys. I also still have to watch my diet as it seems to be a big factor in how I feel. I also cannot take any of the probiotics I have tried so far or kefir as it makes me feel so bad I can't even get out of bed which I haven't found anyone else on here who has had that happen too. My advice is read as many of the old posts as possible and try anything you think will work til you find a great combination. This site has saved my sanity!!!!!!
Posted 10/18/2013 3:13 AM (GMT 0)
Yes, make sure you get on maint drugs ASAP cause when you taper all symptoms come back for most people! Good luck and sorry about your dx!
Posted 10/18/2013 10:47 AM (GMT 0)
Welcome to the forum! I can't imagine what I would be doing without this community. I'll often just browse the topics JUST so I don't feel like I'm the only one dealing with this garbage. If you haven't tried the SCD Diet, it's worth an honest college try. You can't cheat, though, and your perfect diet can and probably will differ from most people's on here. You just need to be patient and find what works for your gut. Be sure to stay active in here to tell us about your progress.
Posted 10/18/2013 10:02 PM (GMT 0)
I was diagnosed at 23, I'm 55 now. These days there are many better diet choices than when I was diagnosed. Also the exams are easier. Unfortunately Prednisone is still around! I haven't taken it in a while.

I've been through a lot, and I'm not so bad lately. I'm glad I never elected to get an operation.
Posted 10/18/2013 11:48 PM (GMT 0)
Hello and welcome. Your story is all too familiar. I went through the same thing when I was about 27. I had never even heard of UC and I didn't have any relatives who had it (that I know of). That's how I found this board too. I hope we are able to help you with any questions you may have. How much Lialda are you taking and how long have you been taking it for? Some people can get into remission with Lialda alone. I am surprised they put you on a steroid before seeing if you could get good results from rectal meds and lialda. Hopefully the quick taper works and you get into a VERY LONG remission.
Posted 10/19/2013 8:06 PM (GMT 0)
I've just joined myself and have enjoyed reading the threads. It's not an easy subject to discuss so it's been helpful. I don't always understand the acronyms used but i muddle through. I'm med dependent and have tracked and modified my diet with no change in symptoms. Tried paleo for 2 months with absolutely no change in symptoms, curious about SCD, another acronym i'm unfamiliar with!
Posted 10/20/2013 3:44 PM (GMT 0)
If you know paleo, have UC, researched diet...SCD is one of the first to pop up. The internet is an amazing tool with a search, as is this site (although it's not such an effective search I've found.

Any acronym I encounter, I search it first..amazing what I can find out. The latest was fml...ah, got it.

q
Posted 10/20/2013 6:29 PM (GMT 0)
So of course I had to look up fml. Hmmm.
Posted 10/21/2013 6:57 PM (GMT 0)
Welcome to the forum guys/gals!

From my experience diet inst that big a factor. Obviously chowing down popcorn and skittles for breakfast will get you into a flare pretty quickly, specialized diets don't really help much. Best thing you can do is more fruits and veggies overall.
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