need advice on medication

Hi All...I need some advice as to what to do...to sum up my history: UC 1991, Jpouch 1992-chronic pouchitis since 1996 but managable and lived a good quality of life on and off cipro for the pouchitis...In the last 3 years I have been diagnosed with gerd and had my gallbladder removed....in the past year the cipro has become less effective and they found a stricture above the pouch which led to the Crohn's diagnosis....allergic to sulfa, pentasa...flagyl is difficult to tolerate but I take it for short periods...quality of life has become quite poor over the past 6 weeks..while I continue to maintain my 2 jobs (I'm a medical social worker), it is becoming more difficult....started entocort in november, helpful but not doing it all...my GI discussed the heavy hitter meds (imuran, methotrexate, 6mp, remicade, humira, etc)...although I didn't want start these meds, I knew I needed to as I wasn't getting better on the cipro and entocort...so I tried imuran for 2 weeks and landed in the ER due to side effects...so I agreed to start humira...I haven't started yet as I need to get preapproval from my insurance...now while I wait, I added xifaxan to my cocktail of cipro and entocort....and while xifaxin never did much for me with pouchitis, somehow I appear to be holding my own with the addition of the xifaxin...pouchitis is not my problem right now, it's the inflammation/stricture above the pouch...so as I near approval for the humira I'm wondering if I should hold off and stay on my current meds of entocort, cipro and xifaxin...I know my doc wants to wean me off the entocort as he doesn't want me on it longer then 6 months...if I start to wean I will most likely get sick, but who knows?...I would like to try and hold off...everyone else says that I am just prolonging the inevitable and I know I am but I'm really frightened to start humira/remicade....I don't tolerate meds well and unfortunately I know too much about the side effects and what could occur...so I don't know...I know I need to bite the bullet and move forward...just scared...

I'm glad the Xifaxan is helping you. I have been on it for almost 2 years and it literally has made a world of difference in my life. As far as when/if to start humira/remicade I just have a few things to say. Do you trust your doctor's opinion? Do you feel like you need a second opinion? Or that a second opinion would change the course of treatment? And Do you think if you held off starting humira/remicade for a month or two to see how the Xifaxan does it would do significant harm to your disease?

Personally I tend to trust my doctor, but that is just my nature. When I felt that my doctors advice wasn't in my best interest, I changed doctors to someone who was more in line with my personal thinking.

This is a big decision you have to make and it shouldn't be taken lightly. You have had a rough road, I hope it gets better soon.

Here's what I've found with Imuran... if a person has adverse effects with it, then they will probably be fine with 6MP and vice versa... I take 6MP and have been fine with it; a while back, for financial reasons, I switched to Imuran and had really bad side effects, so I switched back and was fine. I know of at least 2 other people who have been able to take one but not the other, so this might be something you could mention to your doctor.

I think its individual - i couldnt toleralte 6mp at all but was ok on imuran for a few yrs. so could be worth a go - at the end of the day they are not the same med otherwise they would b the same! :) I empathise with ur med issues - i've gone through them myself, side effects and the like- its hard to know sometimes. I'm on entocort @ the mo as well & feeling the same as you! As for the taking long to work yup - i had to take imuran for a yr!! but the entocort is prob a good option to tide you over while building up on the imuran type meds. Also ur dr may not be increasing the dose enough if its not working - i learnt that one the hard way!! keep them upping it faster, i'm no dr but i think it would make a difference! I used to be worried about the side effects as well but i just had to make my peace with it - otherwise i would have really bothered myself. personally i learned to accept some side effects when i was getting them and this really helps. before i was like they have to go, now! & it seemed to make them worse. My side effects have become much more tolerable as a result. I totally get where your coming from tho & I really hope things begin to settle down.