It would depend very much on how bad my UC got before I tried Tysabri. I would also want someone experienced to administer it. I have no fear of dying, only of dying painfully, so the idea that I might be the 1 in 200 who's brain wacks out doesn't bother me in the slightest.
To rebut the earlier comment by seconder:
What about keeping your diseased colon makes you want to try a drug with potentially fatal consequences at a practice where you will be the only person to have ever tried it?
I do agree that the patient should be given the final choice, but this is major surgery and has about
the same odds of killing you, especially when your UC is as bad as it is for jamo0001. (Judilyn is the wiz with the stats so please correct my numbers if I am wrong here).
You only really hear about
j-pouch etc when its successful. There are a lot of other health risks and deficiencies you stand a good chance of inheriting by having your colon removed. J-pouch is often not successful in the case of someone like jamo0001 as the rectum itself suffers from UC.
James is 21 years old and impatient to get better I know, but often waiting can be worthwhile. I've had "diagnosed" UC for 12 years now, since I was first diagnosed we have had massive breakthroughs in research and understanding of this disease that have resulted in drugs from the 5-ASA series to the biologics such as remicade, humira, golimumab and tysabri.
What jamo0001 proposes is permanent, no going back and good chance he'll have a colostomy bag for the rest of his life. His doctor seems to be looking out for him and trying every available option before taking such drastic action.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
- 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
- Participating in the Golimumab trial as of 1st May, 2008;
- 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
- 1x teaspoon of Metamucil 3 times a day;
- 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.