Crohn's Disease & Ulcerative Colitis Support Group

Steve,
I'm sorry to hear of you troubles.
1. How frequent are your Remi infusions? Most people take Remi as long as they can before they have an adverse reaction. I would say that after 6 infusions with no change, its not working. (I'm NOT a doctor)
2.Have you tried smoothies? I find that when I can't eat, smoothies made with healthy ingredients help.
3. NO! He is not right if he has never seen you. Are you taking anything besides Remi? There are many other meds available for maintenance. It sounds like you need a second and third opinion (I'm on my 6th GI)

Also, please check out www.ldninfo.org it has made a huge difference in my life with Crohn's & UC.
Best wishes to you.

Thanks Fraz,
I've got appointment at Mayo Clinic, Rochester, MN next month to get their opinion.

Hi Steve - I am sorry to hear you are so sick. There are several self healing diets and programs out there that you could try, if you are not comfortable with continuing the medication or opting for surgery. Personally I am not comfortable with a drug like remicade or surgery. I reluctantly read the book "self healing colits and crohns" by Dave Klein, and even more reluctantly went on the program.....but it has worked wonders for me. The book and theory's in it made a lot of sense to me and after 3 months of being housebound and being on high dosages of drugs I was able to start living a normal life again (after one week of being on the diet), and am now off all medication. Just a suggestion to let you know that there are other options besides immunosuppressing drugs and surgery. I have had UC for 9 years, and while I considered myself in remission for most of that time, I am now more regular than I ever was!
Go to amazon.com and read the reviews on this book, they are convincing and and motivating.

Oh, and definitely try smoothies - banana's mixed with water. Yogurt might also work for you - it is more digestible than other dairy products - but get a high quality one from a health food store, or look for an organic brand at your supermarket....try to avoid a lot of sugar. Fresh juice will work wonders for you - carrot juice, apple juice, pear juice.

....and feel free to email me if you are interested in the book or getting more information on it!

I was on Remicade for many years. When I first started it, it took awhile for it it start working I think like after the 6th injection. No medication makes you feel good right away. you have to let them get in your system and to where your antibody's will recognize it. After my
6th injection I felt wonderful.
I think you do need to find a new Doctor tho. My GI tried everything he could over the course of 11 years since I was diagnosed before He finally suggested surgery. I had Surgery last year and have been in remission since. As of my last colonoscopy there is no sign of Crohns.

Steve,
Finding just the right combination can turn you around. I know with me none of the medications helped they only seemed to worsen the diarrhea. I hope you are staying away from dairy and sugars and giving things a chance to calm down. Broth was the only thing I sipped while inflamed. Go slow with any diet gradually adding things just to see how your body handles each. I am now able to handle most foods... I still avoid dairy and limit sugar. Nothing else seems to bother me now. I was told I have UC or a mild case of Crohns. I feel great as long as I avoid dairy. Try it see if it helps! Surgery is always an option... I'd rather watch my diet. Love & Prayers for you!

Thank You everyone. I 'will keep you posted.

steve