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Back at work and in trouble/immodium side effects

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Ulcerative Colitis
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Posted 1/15/2012 7:37 PM (GMT 0)
I know what you mean Eva but if more people are aware that it exists, I would think maybe it would build some awareness. If people are interested and asking about it, maybe someday there will be a study where it can be used for UC. I try to keep the success stories thread varied. At the same time, I don't want t put it there and then have a bunch of people frustrated being unable to get it prescribed.
Posted 1/15/2012 7:43 PM (GMT 0)
Nososickly...I have no problem posting my story. In fact when I had time I was going to write something formal and it was suggested that I create a website. (It gives me further ammunition if the hospital pulls treatment)

As far as Eva Lous comments I personally have no problem telling people how IVIG helped my colitis. If anything what is needed is a voice, which will give patients and doc empowerment to try different treatments other than the standard. The more patients know, the more expressive they can be with their GI's. We should not assume that no GI will prescribe it or it will cause frustration. Info is what is needed. Last year I was presented as a case study at an Internal GI conference in Toronto. I was actually there and got the opportunity to speak with GI's from the US and around the world. A few even had children with UC/Chrons and didn't know that IVIG has been used and studied for it's effectiveness in treating IBD. I hope I made a difference. Eva is right the cost is prohibitive (in my case the hospital pays) but it is used for various autoimmune diseases. I can be added to that list and if even 1 other person is helped but it I'm proud to be a part of it. It has been done and there is efficacy in using this treatment for UC. I say more power to the patients!

Notsosickly...give me a few days to post something more succinct and then you can move it to success stories if needed. And a big thank you.
Posted 1/15/2012 7:52 PM (GMT 0)
That would be wonderful! Thank you so much.

I agree, the more we know, the more chance we can get our GIs to work with us toward making these alternative treatments available.
Posted 1/15/2012 8:21 PM (GMT 0)
I take immodium every now and then and it is a life saver. Like today I took my kids sledding and there are no bathrooms I took it and was fine. When we go on a cruise in April I will take it when we are on shore. I only take it when I have to. Which amounts to every couple of weeks. My gi doesn't want me to take it but oh well! My problem is I won't go to the bathroom all day and then tomorrow I will have problems going and will get cramps. So I choose of taking it is worth me feeling bad the next day.
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