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Posted 12/30/2012 2:57 AM (GMT 0)
Hi everyone

I finally took the plunge and signed up as a member-The main reason was to thank those of you who have been posting encouragement and advice on here which I have been eagerly consuming for a long time. In particular during the last year most of which I have been in an active flare which I just cant get under control-Bloody bowel movements sometimes up to 7 or 8 a day that I have no control over-I am pretty much housebound. As someone whose family are all in another country and has no-one to talk to when it all gets to be too much you have been a lifeline for me-Also I'm so hyped up on pred I don't sleep much!! At the mo I have just taken the decision to stop taking the azathioprine I have been on since Sept becuse #1 its not working and #2 my latest bloodwork just came back showing that I'm at an increased risk for liver failure (would that be right) Next step seems to be Remicade-I will remain hopeful as have pretty much been told if that doesn't work it will be colon removal-Trying to eat healthy (wheat free for the last few days and No processed food) I hope I can be a comfort to others who may have just been diagnosed-It has been a LOOOOOOOng 12 years with this awful disease.

Posted 12/30/2012 3:00 AM (GMT 0)
This group is definitely a blessing, no doubt!
Posted 12/30/2012 3:09 AM (GMT 0)
Sharoro, welcome to the forums! What took you so long? You said you were creeping around for a year or so? This community is here for people like you! Sorry to hear of your recent findings through blood work. You said you've tried to eliminate wheat/gluten, and in the past few days how have you been feeling?

If you can, maybe experiment with less refined sugar and carbs, or grains in general, see if this is any help. Limit dairy except Kefir, leafy greens (unless you can tolerate) and sulfuric foods like onions and garlic that are gas causing.

Other members here are helpful at suggesting what meds may help you.

I could recommend a few supplements as you begin to get things under control: L-Glutamine powder, Slippery Elm, probiotics like VSL#3...
Posted 12/30/2012 3:20 AM (GMT 0)
Hi stereofidelic89-
The first couple of days I felt a lot better and only a couple bloody bowel movements-Now back to feeling awful and many more bowel movements-I am going to try and stick with it though because eating healthier just has to be better for me and Rome wasn't built in a day-right? My GI's nurse just actually reccomended VSL#3 so they are definitly on my shopping list-Thanks for your dietary advice, I have been looking into the specific carbohydrate diet but don't think I can be that disciplined :-)
Posted 12/30/2012 3:34 AM (GMT 0)
Your absolutely right on how Rome wasn't built in a day! Healing takes time. I started out with the (specific carbohydrate diet (SCD) while tapering prednisone and just by eliminating grains + sugar I found results. Start slow, allow yourself leverage over the diet so that you don't want to quit on the first day, lol.
Posted 12/30/2012 8:05 AM (GMT 0)
Welcome welcome. Glad youre out of your hidey hole? Doesnt it feel better?
Posted 12/30/2012 12:44 PM (GMT 0)
Welcome to the forum!
Posted 12/30/2012 1:15 PM (GMT 0)
I'm glad you stepped out of hiding too. I know only too well how the years tend to drag by when you're flaring. I've been on Remicade for about a year and a few months now and it literally gave me back my life. So I hope if you start on this that it will help you as much as it did me.

Welcome!
Posted 12/30/2012 1:22 PM (GMT 0)
Welcome to the forum!
Posted 12/30/2012 1:45 PM (GMT 0)
Thanks for the welcomes-and yes it does feel good to be officially connected to the support line I have been part of for so long :-) and Sherry, Hope I'm not disappointed but I'm actually looking forward to getting started on the remicade as it seems to be working for the majority of people and I SOOO want to be one of them. I had a period of about a week this past year where I seemed to be in remission and I remember just being happy and feeling on top of the world and making plans to do normal things-I want that feeling again!
Posted 12/30/2012 1:50 PM (GMT 0)
Sharoro,

Welcome to the forum.

Glad you've decided to finally officially join us.

As you probably already know, this forum is full of wonderful people, who are kind, supportive, helpful, and always at the ready to help out.

I won't be able to answer any questions about remicade, but will be glad to chime in on alternative approaches, as well as LDN, low dose naltrexone.

:-)  

Posted 12/30/2012 2:12 PM (GMT 0)
After being on so many different meds and getting my hopes up thinking this is the one, only for it not to work is so very disappointing. So when I went into my first Remicade infusion, I didn't have any expectations. In fact after my third infusion, I had a bad reaction (my hands and elbows swelled up horribly) that I almost threw in the towel. But my GI started me on a pre-med of Solumedrol and Benedryl before each infusion and its worked like a charm ever since.

We all want to feel better NOW, but you also have to keep in mind that not everyone responds the same. It's nice to have hope, no we NEED hope or everything seems bleak. So don't give up if in the event that Remicade doesn't work.
Posted 12/30/2012 6:05 PM (GMT 0)
Hi,
Welcome to the forum...glad you joined us!
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