Well, after 5 years of battling the VA, they have finally given me my 40% disability for my knee and Crohns. I think it should be higher. I am on my fourth infusion of Remicade next Tuesday, I have a rash on each side at the hips, my belly button is bleeding worse now then it did in October, and now my insides hurt! The only pain I had before was my rump being raw from tenesmus (constipated diarrhea or "butt lightening") as another post has put it. Now everything else hurts. My hands hurt. My knee that wasn't bad hurts. All in all, I am to the point of saying cut the bad piece out and stitch me back up. I am getting separated from the military within the next year, just a matter of going through the motions of the MEB and PEB. I have my 3 LOD's for my surgeries. I found a nutritionist that agrees with my assessment of my intolerance for soy and that it may have triggered my first, and yet to end, flare. If anyone has advice regarding the bleeding belly button or what I can do, please chime in. I am spiraling into depression. I don't want my son to see me like this. The steroids made things worse, remicade isn't helping anymore, and the VA will not let me try Low Dose Naltrexone. :rof: Thinking of seeing a different GI doctor behind their backs to get it... :rof::ybatty:
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My story: Part 2
- Thread starter danieldresen
- Start date
Hi Daniel:
Thank you for your service to our country.
My 20 year old daughter stopped taking Remicade in October of last year when it lost all effectiveness. She takes no meds now and found taking 5,000 IUs of Vitamin D3 and 400 MCGs of Folic Acid have helped her the most. Check out http://www.vitamindcouncil.org/. She dropped out of college last semester and is returning to campus tomorrow to give it another try. Give the vitamins a try. It's cheap and you don't need a prescription so it's worth a try!
Wishing you all the best.
Lisa
Thank you for your service to our country.
My 20 year old daughter stopped taking Remicade in October of last year when it lost all effectiveness. She takes no meds now and found taking 5,000 IUs of Vitamin D3 and 400 MCGs of Folic Acid have helped her the most. Check out http://www.vitamindcouncil.org/. She dropped out of college last semester and is returning to campus tomorrow to give it another try. Give the vitamins a try. It's cheap and you don't need a prescription so it's worth a try!
Wishing you all the best.
Lisa
I drink close to 600 mgs of folic acid and get plenty of vitamin D. My GI doctor was surprisingly shocked by my labs. Even my C-Reactive is fairly low considering how many ulcers were discovered during the colonoscopy. I also have a fistula that, I thought had closed... is now open and bleeding again. I am guessing it didn't close all the way. I don't mind paying for the Naltrexone. The VA is giving me an extra 677$ a month, so I can afford paying for it. My C-Reactive was 6.5 which is slightly high, but not significant. They did labs just before my colonoscopy which it was an 8... considering that I was in pain up until they gave me the medicine it should have been high. I take just about every b vitamin there is, Folate, Iron (because I have been bleeding since 2007 from fissures and fistula), vitamin d, omega 3, golden seal extract, boswellia extract, echinecea extract, flax seed oil, probiotics... nothing has helped with pain. They have helped make the BM itself less painful, but not the pain in the intestine or perianal region.
I see. When your labs testing Vitamin D come back, what is your ng/nl number? Having a GI look at it and tell you that your D level is fine is not good enough. You have to know what your actual level is. Sometimes even if you take in lots of D, your body may be resistant and you need to take more. I'd like to know what your ng/nl number is.
Vitamin D is not a vitamin. I wish it was not labeled as a vitamin as that is misleading. It is a hormone that we all need an ample supply of to stay healthy. Folic Acid is a profactor that help D3 supplements to stay in your body longer to fight the inflammation that is causing your pain.
Let me know what you ng/nl level is of Vitamin D as that may be the key to solving some of your issues.
Vitamin D is not a vitamin. I wish it was not labeled as a vitamin as that is misleading. It is a hormone that we all need an ample supply of to stay healthy. Folic Acid is a profactor that help D3 supplements to stay in your body longer to fight the inflammation that is causing your pain.
Let me know what you ng/nl level is of Vitamin D as that may be the key to solving some of your issues.