butt-eze
Superstar
- Joined
- Dec 28, 2007
- Messages
- 642
Yesterday I attended an IBD Educational conference. The professional who spoke varied from nutritionists to well known doctors in the area of IBD research.
The strongest thing I walked away from there believing is that I would never try Tysabri. The physician there explained that the potential for a neurological infection exists and at this time the infection that can develop in your brain is untreatable and irreversible. Not something I'm willing to risk. I will go back to chemotherapy well before I get that desperate. He did make it clear why those with MS would go this route but because Crohn's patients are inflicted with anything that is neurological I don't feel we need to ingest a medication that targets our brains the way Tysabri does(it also targets the digestive tract).
They also had a nutrionist there who specialized in working with patients with allergies, asthma, diabetes, IBD, and other inflammatory conditions. She had many unrealistic and "George" type theories. She suggested that such things as spicy foods and even nuts should be used as anti-inflammatory. I'm not suggesting she wasn't well educated or perhaps helpful to others. I am simply saying that the answer just isn't the same for all of us. If I added chili pepper, garlic and onions to my food in the midst of a flare there would be hell to pay. If I ate nuts I would think that wouldn't be beneficial to the ulcerations in my intestines.
The overall experience of being at an educational conference amongst those suffering with similar ailments is great. People asked questions that we've all asked and pretty much got the answers we've all received.
I will continue to go to these conferences because it has pushed me to face my next question: should I start Humira despite being in remission? I don't know! What if I'm like some patients who can go years without symptoms? Kev hasn't had a flare in over 10 years. Why should I take medicine if I have the potential of being just fine for a whole decade?
The strongest thing I walked away from there believing is that I would never try Tysabri. The physician there explained that the potential for a neurological infection exists and at this time the infection that can develop in your brain is untreatable and irreversible. Not something I'm willing to risk. I will go back to chemotherapy well before I get that desperate. He did make it clear why those with MS would go this route but because Crohn's patients are inflicted with anything that is neurological I don't feel we need to ingest a medication that targets our brains the way Tysabri does(it also targets the digestive tract).
They also had a nutrionist there who specialized in working with patients with allergies, asthma, diabetes, IBD, and other inflammatory conditions. She had many unrealistic and "George" type theories. She suggested that such things as spicy foods and even nuts should be used as anti-inflammatory. I'm not suggesting she wasn't well educated or perhaps helpful to others. I am simply saying that the answer just isn't the same for all of us. If I added chili pepper, garlic and onions to my food in the midst of a flare there would be hell to pay. If I ate nuts I would think that wouldn't be beneficial to the ulcerations in my intestines.
The overall experience of being at an educational conference amongst those suffering with similar ailments is great. People asked questions that we've all asked and pretty much got the answers we've all received.
I will continue to go to these conferences because it has pushed me to face my next question: should I start Humira despite being in remission? I don't know! What if I'm like some patients who can go years without symptoms? Kev hasn't had a flare in over 10 years. Why should I take medicine if I have the potential of being just fine for a whole decade?
