Today I got a second opinion at the GI clinic at UNC-Chapel Hill, which is a very well-regarded GI clinic. Learned lots of stuff I thought would generally be good to share with my fellow UC-ers, so here is so info I learned, in no particular order, followed by an update on my particular situation. Of course, this info is just from my GI, so take it or leave it, but I do know that UNC has access to lots of clinical trials and does lots of GI research, and is tend to be respected in the IBD world.... for whatever that's worth..... so, some interesting "facts," in no order, and not all related to one another:
1. there are lots of good drugs in the pipeline for IBD, but none that the IBD community thinks is a wonder drug. any marketing of a wonder drug for UC is being done by wallstreet backers for profit. from medical perspective the drugs are promising, but only incremental, and only provide more options, as opposed to batting UC out of the park.
2. methotrexate is more effective in Crohns than in UC.
3. ok to get pregnant on imuran but probably not great idea to breast feed on it
4. remicade usually helps about 50% of UC patients, and UC provides a really good remission to about 30% of UC-ers
5. there is an Abatacept clinical trial at UNC right now, for UC, which is interesting b/c I didn't think it was being tested yet in the USA
6. Prograf is not a long-term drug for UC-ers (though apparently liver transplant people are on it forever)
7. for a UC-er who has been diagnosed and has not yet gotten into remission - or for a UC-er who has gotten into remission and never flared again - it is possible, sometimes, that getting into remission will normalize the system and that the UC simply won't appear again because will normalize permanently. if have already cycled through flares and remissions, this probably won't happen to you, but if you are first in remission and can stay there, may be your system has normalized again.
8. there is a 30 - 40% chance of a woman becoming sterile after colectomy. There is no way to predict, and it is not because of the surgeon or the surgery. rather, because the colon is so close to the fallopian tubes, some womens' bodies respond to the surgery simply by the closing of the fallopian tubes, permanently.
9. surgery doesn't return the person to pre-UC life (if it did, he said, he'd obviously recommend surgery more often). he said the average J-poucher still has about 4 - 6 BMs per day, but they should have good control and not have frequency/urgency
ok, so that's the general info. as for my personal update (which may be less interesting to some of you... :) .....)
I saw this new GI today because I was feeling like my other GI just didn't have a game plan. I had seen this new guy twice before but because he is in a hospital clinic he is really hard to get in with, so I figured I would stick with the other guy. but this guy communicates better, and had a clear game plan for me. so, here is the deal. I appear to be failing Imuran. he said there is one more thing we'll try before making that conclusion, which is a combo of cort-foam in the AM and Rowasa in the PM, every night for a couple weeks (Quincy, I figured he was channeling you when he said the word "Rowasa"). If that works, he said I can stay on that combo indefinitely, as apparently the steroid in the foam is very very minimal and rowasa is proven to be effective even when only used every few nights instead of nightly. he said I wouldn't use the combo every night - we'd taper it down - but that I could do that for the next 60 years, and stay on imuran, and be safe. if that doesn't work... then he will do a scope, confirm it isn't crohns (though he feels confident it is not), and just see what it looks like in my colon, and then discuss remi vs clinical trial vs surgery. I suspect I'd do surgery, but we'll see.
in any case, I somehow just feel so relieved knowing that we have a plan for the next 4 weeks. I have a follow-up in a month (unless things get worse) and also a surgical consult with the main UNC surgeon in a month. I had arranged the consult awhile ago, and this GI suggested I keep it so that i can think about surgery at a time when I am not actually having to make the decision. he said that because I am only 30 and already headed towards remicade, he wouldn't want to put me on prograf because it wouldn't be a long-term option. he stressed to me that we are nowhere near having to decide about surgery, but he was also honest that Imuran hasn't worked for me as well as it should have.
so, all in all, I somehow feel very good today. i think I am just excited to have some sort of plan.
anyway, just wanted to pass all that along. please excuse the long post and I hope all of you are well today.
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!