Question about remaining medication options....

So I am having a current flare and wondering where to go from here.  I have been diagnosed with UC for about 10 years.  The last 2.5-3 years I have been on Imuran and been in remission.  Really that is the only remission during the last decade and it felt wonderful.  This current flare seems to be quite resilient in that it is not responding to pred nor did it respond to the IV steroids when I was in the hospital.  I don't respond well to the mesalamines although I may ask my GI when I see him this morning if we can try Colazal since some that are sensitive to the 5ASA's seem to tolerate it.  We tried Remicade before I went on Imuran and while I didn't have any side affects at all it had no affect on my disease.  The current flare is different in that the frequency isn't as bad (about 10-14 times) but the pain on BM is really bad (a lot of the blood is bright red so I am thinking hemmy as well.  When I say pain is really bad that is actually an understatement).  It is also different because I do have some formed BM and I am not having a lot of cramping.  The others are just blood, a little residue and mucus.  I have been doing a low residue diet right now because any fiber is really painful.  It is also different in the scope this time showed the problem is mostly left-sided.  Given I am having some formed BM I tend to think my colon is pretty much working; hence my hesitation to have the surgery at this point.

I also tried the Rowasa enemas and at first I thought they helped but now I have almost an instant reaction - spasm and lots of blood - almost immediately after.  I am doing the steroid enemas right now as well and they don't seem to be helping, although we are switching from the regular enemas to the foam which I am picking up today because retention has been a real problem.  Also, we didn't try a real high dose of the pred this time.  The highest we went was 60 mg because he said he didn't want to risk my blood sugar going higher.  At the time it was about 180 and we will be redoing the CBC today.  Previously when I had a flare we did 80 mg for a few days, then the taper and it seemed to work.  I know some have started higher than 80.

Me and my GI are now talking about the surgery.  This is obviously a big deal and before I commit I thought I would get some opinions.  I know this:  I can't keep going like I am going because I am missing too much work and we need a long-term solution.  My office has been great but it can't be the neverending story (yes, I am aware of the FMLA rights and they are willing to work with me.)  I also fully understand the nature of our disease and how we have to deal with these and outside of surgery sometimes there isn't a long-term solution.

Opinions on the surgery and possible remaining medication options?  What about trying Humira?  Can you take Humira and Imuran at the same time?  What do you think about trying Colazal?  What about going higher on the pred short term?  Other thoughts?

Thanks gang.  The opinions on here really mean a lot to me because I feel like you are the only people that truly understand.

 

I cycled through all the drugs and opted for j-pouch surgery. Looks like you have a few more drug choices to try, IF YOU WANT TO. You can opt for surgery any time if you feel you have a low quality of life. I had surgery 11 years ago, best decision for my life. I was very active and gave up everything to UC. Post surgery I am active again and take no meds. There is a great life out there post-UC should you have to go that route.

Sue

I highly recommend VSL #3 DS before giving up.

     Like Suebear and ByeBye UC, I had surgery, but I was not a candidate for j-pouch because of my deteriorating health.  I was so sick, I told my surgeon I had no problem with the idea of having a "bag", and believe me...it is NO problem at all.  Compared to living ...I should say existing....with UP (proctitis), having a "bag" is a cinch.  I only needed one surgery and even with that, my surgeon would not operate on me unless I passed a stress echocardiogram, which, thankfully, I did.

     Back to your treatment options.  I have a friend who is doing great on Rowasa enemas and VSL #3.  She was on 6MP for ten years and in a complete remission.  I have no idea why her GI doctor took her off the medicine, but when he did she flared within a short period of time. 

     I took Colazal for ten years.  While it did not keep me in remission, I believe it did keep my ulcerations confined to the rectum.  In all that time, my disease never spread into my colon.  However, when the rectum has to go, so does the rest of the colon .  All I had wrong with my colon was a bit of diverticulosis.  Oh well.  My surgeon said my rectum was badly diseased.  That statement came as no surprise, since I bled profusely and could not even hold in the rectal meds.  If you are having a hard time doing so, you could try the Canasa suppositories.

     Whatever you decide, I wish you the best of health.  I know surgery is a scary thought.  If I didn't agree with that statement, I would have had the surgery back in 2000 instead of waiting till 2010...oh well.  Everyone is different and many people have wonderful success with different meds.  If you do decide on surgery, make sure you do your homework.  Research the medical facility where you intend to go for your operation and your colorectal surgeon.  I live in south Jersey and would not dream of having a local surgeon do the operation OR go to a local hospital.  I had my surgery done by the head of colorectal surgery at Pennsylvania Hospital in Philly.  He has over 30 yrs of experience and trained at the Cleveland Clinic.

     God bless and good luck !!!