Posted 1/4/2008 3:59 PM (GMT -6)
Hi. So, two weeks ago I posted about how I was nearing remission..... maybe I jinxed it by saying something, but in any case I am definitely slipping away from remission as we speak. starting to have gurgly tummy, lots of diarrhea, frequency, losing appetite, the whole bit. I called my GI today (who I really trust and who I am scheduled to see in 2 weeks), and explained what was happening. He said that given the time of year and all the bugs/flus that arise, he said to see if I improve or deteriorate over the weekend, and call him next week with an update and let him know if I need to see him before our scheduled appointment. as you may recall I am still new to this disease (Relatively) and have been on Imuran now for almost 6 months. So, when my GI said that it sounds like I may be "brewing a flare," I asked him if that meant Imuran was failing. He said no, but that it might mean a drug like remicade would work better for me, and that we could just discuss it at my appointment and talk then about other options (like switching my 5-ASA). so, having said all that, here is what I am asking you, my brothers and sisters in IBD whose opinions I value:
1. any suggestions that may not involve switching to remicade? (I weigh 140lbs, so could I up Imuran?)
2. for those of you on remicade, how did you make the decision to go for it instead of surgery? I know that surgery is a big deal, but I also know that long-term remicade use is also a big deal. everyone around me thinks I am crazy for what I am about to say, but part of me is more comfortable with the notion of adjusting to surgery and the concept of life with a bag (or a pouch) than with remicade..... anyone else feel that way? if so, how did you decide to try remicade?
my fiance (who is a wonderful man, so this statement shouldn't imply otherwise), is concerned that I have started putting too much hope in the idea of surgery as a cure-all, and that given that I haven't even had the disease 10 months I should try to give my GI some more time to try some less extreme measures. I don't know what to think. I just know that some people have different fears with this disease, and for some reason the thought of life without a colon is easier for me than the notion of the unknowns of the biologics. lastly, I am 29 and hoping to have a baby next year, which is another reason to avoid remicade. ugh, I am so confused. thoughts?