College student w/ Crohn's

Hello everybody. I have had Crohn's for 3 years now. Symptoms started showing up when I was in my first semester of college away from friends and family. It was hell living in the dorms with this...

Doctor put me on pentasa, prednisone, and pain meds. This was in Dec 08. By March 09 I was in the worst pain I've ever been in. I ended up in the hospital for a week. The doc put me on Remicade and the pain went away in a day.

In August 09 I decided to give vegetarianism a try, as my GF at the time was a veggie as well. I slowly began to feel better. I got off my prednisone and changed the pentasa to apriso. The Apriso worked a lot better.

About 9 months ago I decided to do away with the Apriso leaving me with only one med; Remicade. To my surprise there was no difference. I felt great and didn't have to spend $50+ per month on drugs.

This summer I started becoming more aware of medications (and since changed my major to nursing) and learned of the cancer risks of such drugs like Remicade and Humira. I knew I had to get off of Remicade, but how would I feel?

I had my last Remicade treatment 3 months ago. I still feel great, but have the occasional stomach ache. I'm still vegetarian. I eat better. I exercise as much as possible.


The one good thing to come from Crohn's is realizing how unhealthy my life was. I'm now able to see what I'm doing wrong as well as help others do the same. I love learning about health issues and trying to help.

I should also mention that along with vegetarian, I also don't drink milk and try to avoid eggs. Eggs are a sure fire way to end up in the bathroom 10 minutes later.

Hi and welcome to the forum I so agree that having stomach issues makes you put diet and lifestyle into a whole new perspective! Out of curiosity, are you now completely off maintenance meds? This causes me some worry It is very important to have at least some maintenance meds on board (anything, even mild stuff like pentasa). Quitting meds may make you feel good in the beginning but if you stay off em, your Crohn's can often come back with a vengeance, even worse than it was originally. I know that many people on here, such as myself, have learned that the hard way.
Does your GI have a plan for long term drug treatment?

Greetings and welcome

Thank you for sharing your story! If you're doing the vegan thing AND have Crohn's, you need to get on vitamin B12 before that sneaks up on you in a bad way. People with Crohn's are already at greatly increased risk for deficiency and the only non supplemental source for it is animal products. If you already knew all this, sorry for the lecture

Anyway, again, welcome! I hope you decide to stick around and become a regular part of the community.

Hi there :welcome: ZP. Yes there are cancer risks but they are very low. As you know all placebo and double blind placebo's have to report them all. Who knows if someone got cancer because it is in their famlies? I am not a fan of Remicade personally only because I had a very bad reaction. I am not a big meat eater, and avoid red meat as much as possible. I have been on so many different diets and they dont work for me . As Emily says being off all meds completely could be a bit risky. Just hope it continues for you. Good luck.

Thanks for the responses. I have talked to my nurse about getting off of Remicade for a little while. She seems to think that if I'm off of it I will either need to start over or go on something like Humira. I do have some pentasa available in case things get bad. If things do get worse I will go back on the IV drugs. As much I care would like to not get cancer, I would also like to not live in pain the rest of my life.

It was a sort of... goal to get off drugs, or at least prove to myself that I can eat healthier and not be on drugs. I HATE DRUGS!

I do take multivitamins almost daily. It's more of a drug pack though. 8 pills. I don't take them everyday as some vitamins are 1000%+. I also take a daily whey protein shake, usually in a smoothie. MMmm.

I'd strongly suggest a daily sublingual B12 or oral B12 of 1000mcg. A multi vitamin probably isn't going to cut it I'm afraid.

You may also want to look at vitamin D

Just a suggestion of course

http://www.amazon.com/Spring-Valley-Maximum-Multivitamin-Packets/dp/B0052AJ4G4 this is what I take.

1000 mcg seems like a lot.. Is that safe to take long term?

1000mcg orally is indeed safe to take long term as most is excreted anyway. BUT, you shouldn't trust me 100%, I'd suggest talking to a trusted medical professional with a strong background in nutrition and supplementation. Even better would be to have all your levels checked.

That daily pak you take looks better than most, good for you That it has a separate complex B is a good sign but I couldn't find the actual manufacturer website that would give me info on exactly what's in it so I can't comment further.

This is one of my favorite sources to research vitamins and minerals: http://lpi.oregonstate.edu/infocenter/vitamins/vitaminB12/ - LOTS of great B12 (and other vitamin and mineral) info there

Vitamin A (5000 I.U.; 100% As Beta Carotene; 100% Daily Value), Vitamin C (1200 Mg; 2000% Daily Value), Vitamin D (200 I.U.; 50% Daily Value), Vitamin E (300 I.U.; 1000% Daily Value), Thiamin (Vitamin B1; 25 Mg; 16667% Daily Value), Riboflavin (Vitamin B2; 25 Mg; 1471% Daily Value), Niacin (25 Mg; 125% Daily Value), Vitamin B6 (25 Mg; 1250% Daily Value), Folic Acid (400 Mcg; 100% Daily Value), Vitamin B12 (25 Mcg; 417% Daily Value), Biotin (25 Mcg; 8% Daily Value), Pantothenic Acid (25 Mg; 250% Daily Value), Calcium (130 Mg; 13% Daily Value), Iron (4.1 Mg; 23% Daily Value), Phosphorus (100 Mg; 10% Daily Value), Iodine (112.5 Mcg; 75% Daily Value), Magnesium (50 Mg; 13% Daily Value), Zinc (12.5 Mg; 83% Daily Value), Selenium (12.5 Mcg; 18% Daily Value), Copper (1.5 Mg; 75% Daily Value), Manganese (1.5 Mg; 75% Daily Value), Chromium (625 Mcg; 521% Daily Value), Molybdenium (7.5 Mcg; 10% Daily Value), Inositol (5 Mg), Paba (2.5 Mg), etc..etc...

1000mcg is just 1mg. That's a good dose of B-12. But I am glad to hear that even though you hate drugs (we all kinda do) you are aware that they are a fact of having Crohn's. I'd personally recommend not waiting until things get bad, but rather to take them so things don't get bad at all. Really and truly, I promise, Humira will not give you cancer. I take it, it's amazing. But hey, try what you're doing but if you Gi or nurse recommends you start something, give it a go and see how you respond!

-emily

Thank you

zp108591 said:

Vitamin D (200 I.U.; 50% Daily Value), Vitamin B12 (25 Mcg; 417% Daily Value)

Click to expand...

Those are both way too low for someone with Crohn's Disease who is also vegan.