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Hello, new here....have some Remicade+General questions...

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Ulcerative Colitis
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Posted 11/12/2009 3:10 AM (GMT 0)
Hello, I am almost 26 M and have had Ulcerative Colitis for about 12 years. All started right when I entered High school, great time huh heh. It was a known illness in my family as my uncle had it during his 20s as well. A few years later my sister was diagnosed with Ulcerative Colitis as well, but she is getting along with it a lot better than I am at the moment. This year has been a particularly crummy year for me as I was hospitalized for a kidney stone in which they took me off my UC meds (6MP) and a flare started up that hasn't stopped even though I am on 60mg of prednizone. A few days later I was hospitalized for the UC as my doctor wanted to put me on a pred. IV drip since the 60mg wasn't really doing anything. I was there for about a week and was sent home. However, nothing really changed much. I am going to the bathroom multiple times each day (seriously lost count heh) with a little blood sometimes, but mostly it's just gas. This is one of the worst flares I have had in my 12 years of having this disease. My dad, being the engineer that he is wants to fix this without harmful drugs IE natural medicines, stomach acid tests, pinworms, bacteria replacement and a few more strange things. I know he is just trying to help, but he is driving me nuts heh. My mom and sister are more inline with me going for remicade and so is my doctor (I discussed it with him during my week at the hospital, was also tested for TB while I was there and it came up negative) however I am very scared about the side-effects. My mom is also very worried about the side-effects after she read about remicade, but at this point I don't know what else I can do.

I guess my questions are has anyone tried those natural medicine, stomach acid, pinworms, bacteria replacement things? Also what I am seeing through a lot of these posts about remicade is that is either doesn't work, wears off or it works. For the people on remicade, how is it for you? I appreciate any thoughts on the matter. (Btw sorry for any grammar errors, I'm running to and from the bathroom heh)
Posted 11/12/2009 3:47 AM (GMT 0)
welcome to the forum.  2 things i will say.  First, get a book called "The Maker's Diet by Jordan Rubin".  I think it has a lot of merit and is sooooo much easier to follow than many diets out there.  Second, i would strongly reccomend the remicade if you want to avoid surgery.  I started it about a week ago tomorrow.  I had what the dr. called very severe colitis throughout my entire colon.  The doc basically gave me up for surgery and i even visited the surgeon for a consult friday after starting remi on thursday.  I have pretty much been sick with a bad flare for the last year with about 6 weeks of remission during the summer followed by a quick return which did not respond to 60 mg of pred and i wound up losing 30 lbs and having blood transfusions and pretty much in crummy shape.  The remicade was like a miracle.  Pretty much overnight i had dramatic improvement.  I am down to a couple bm's a day now from like 15 2 weeks ago.  No pain, urgency and starting to have formed stools especially since starting the maker's diet a couple days ago.....maybe you could give the diet a whirl before beginning remi....based on biblical principles of eating.  If you like meat, it is not too hard at all.  AS far as worrying about remi side effects.....if you decide to go that route, don't worry, just trust God and live your life.  Worrying about possible side effects will change nothing.  My doc said he has never in his practice had anyone have cancer on any real bad effects from the drug.  He said the real risk is those who are on a much higher dose than what colitis patients are on....so relax if you decide to go that way.  Like i said, it has given me my life back in only a few short days.  Hope you figure out the best path for you.  BTW, there are several people here on remi and i have never seen anyone post a bad effect from remi of any lasting significance, though maybe i have missed something.

Posted 11/12/2009 6:49 AM (GMT 0)
Hi, after a Severe bout of UC (Dr said one of the worst cases she had seen for someone in their 30s), my doctor was either going to remove everything or I could try remicade. Remicade stopped all symptoms immediately and I've been clear of UC for three years now with Remicade injections every 10 weeks.

I was on prednisone prior to that and that was a most miserable experience. Puffy fat cheeks, temper, gained 20 lbs!

As well, I am starting to suspect that a gluten allergy/sensitivity may have a role in UC. I tested positive (blood test) for gluten sensitivity. Have the blood test asap to see if you have a sensitivity. If so, stop all wheat and see if that makes a difference.

I believe in taking vitamins and anything/everything naturally possible - when UC is under control. As for the side effects of remicade, talk to your Dr. but i've heard so many, many positive results.

My life is better now after Remicade - I hope this is the case for a long time. :)
Posted 11/12/2009 2:24 PM (GMT 0)
     My doctor has been pushing Remicade for over two years.  I was scared to death because I remember back in the 60's I tested positive for TB.  I had an aunt through marriage who died from TB and I also worked in a hospital lab back then.  They did a chest xray and it was negative.  The doctor explained that I didn't have active TB but I must have been exposed to it at one time or another and it is dormant in my system.  Needless to say, that was the main reason I fought going on Remicade.  Well, the other day I was tested for TB in my doctor's office and it was negative!!!!  I am ecstatic about this but since I was placed back on prednisone the day before the test after only two months without it, I was wondering if the prednisone gave me a false negative reading.  The doctor doesn't "think so".

     Long story short....I am biting the bullet and going for the Remicade anyway...tired of living like this.  Prednisone has given me osteoporosis, high blood pressure and a few months ago while tapering my blood glucose shot up to 237!  Enough already.

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