Introduction

Just wanted to say hi as it looks like I might be moving here from the UC boards...

I was diagnosed with UC pancolitis, moderate inflammation, in May of this year. Started Asacol with no improvement, added rectal meds, no improvement, added prednisone and after about a month at 40 mg went into a 'delicate' remission -- 1-2 soft, painful BMs per day, but no more blood or mucus. My symptoms came back as I tapered, but with the addition of short courses of Cipro I was able to get down to about 15 mg still feeling OK.

By August my GI decided that I was prednisone dependent, had been on it too long, and had to just come off of it and decide between 6MP and Remicade. I was really scared of immunosuppressants so I sought a second opinion with an IBD specialist who felt that my disease wasn't severe enough to warrant 6MP or Remicade yet. By that point I was completely off of prednisone, so only taking oral 5ASAs (cycled through all of them over the course of the fall) and using rectal meds. I was also diagnosed with SIBO, so we tried Xifaxin and Cipro again.

From September to November I was in a gradual decline, but got much worse in October after having a bout of the flu. I started 6MP but couldn't wait the full month to see it kick in, so my doctor had me try methotrexate. I saw some improvement with mtx at first but then regressed and continued to decline. Next, Cimzia. Had two sets of loading doses, the second set early, and saw absolutely no change.

The day after my second Cimzia dose I was admitted to the hospital -- 30+ BMs per day with huge pieces of bloody mucus, unbearable pain, and a resting heart rate of 130. I was on an NPO order for three days, then finally started IV hydrocortisone and saw a pretty big improvement immediately -- I slept for like four hours straight for the first time in months! A week after the last dose of Cimzia I had my first infusion of Remicade, 5mg/kg... and took a turn for the worse. After a couple more days things seemed to settle down and I was able to switch to prednisone PO and leave the hospital.

Since then I've come down from 60 mg prednisone to 40 mg prednisone, and had two more Remicade infusions (bumped up to 10 mg/kg). I am doing a little better than when I was discharged from the hospital, but I can't seem to get fewer than 10 BM/day, still see blood and mucus in the morning, still have urgency, pain, gurgling, a burning sensation in the middle of my abdomen... My doctor wants me to add methotrexate to 'boost' the Remicade (similar to 6MP+Remicade), which I am going to try but am really scared about being on three different immunosuppressants all at once.

Now that I've had three Remicade infusions and am not seeing a huge (or, any?) improvement I am really losing hope that I will respond to it. It doesn't seem like there's anywhere to go from here besides surgery, especially since I can't even get under control on so much prednisone, which I've now been on for 4.5 out of the past 7 months. I have a consultation scheduled with a top surgeon in early January. I wish it weren't the holidays because waiting even until then seems like too long :(

Before I was diagnosed I was extremely active, working out 5x/week, and in excellent health (except for the frequent bouts of strep throat requiring antibiotics that I believe led to my IBD, along with family history). I've lost 30 lb, can no longer work, and had to move in with my parents. I feel like everything has happened so quickly that sometimes I just can't believe that I'm so sick.

That's my story in a [large] nutshell, looking forward to getting to know everyone here and thanks for your support.

I'd like to offer some words of encouragement and hope.  I am 7 weeks post op from my proctocolectomy with an end ileostomy and anal closure after suffering from pancolitis for 6 years.  Your story and mine have things in common in that I to had been through the mill of meds that lifted me up but eventually brought me back to all the UC misery.  4 years into the UC, Remicade gave me 10 months of blessed remission but it eventually failed.  Humira did give some relief but definitely no remission.  Prednisone was part of my life for 6 years with 2 episodes of hospitalization for IV steriods to stop severe bleeding and diarreha.  Every aspect of my life revolved around my UC.  I had a great GI doc but in the spring of this year, she looked at me sadly and said....."it's time to consider surgery".

I had an evoluation at the Mayo clinic and it took them about 3 hours to decide that surgery was my only way out of this misery.  I chose to have my surgery done in the Twin Cities by an awesome surgeon from Colon/Rectal Assoc.  Man, did I hit the jackpot with her.  Surgery is not an easy route to take and I had to be off the Prednisone for 3 months and off the Humira and Imuran for 1 month before surgery to ensure a good outcome.  That last month was hell and I was homebound for most of it. 

My surgery, so far, has had a very good outcome.  Yes, it's early in my recovery but so far, everything has gone extremely well.  I know that for some, that is unfortunately not the case and you certainly read on this board some heartbreaking stories but I want you to know that there are some great outcomes too.  Surgery is a way of putting all the misery of UC behind you and allowing you to reclaim your life.  I am 61 years old and I am so glad I made this decision now instead of waiting and suffering any longer.  I'd just plan had enough.

Those of us who have chosen surgery know its not an easy decision so we are here to support you in yours.  Hopefully someday there will be a cure other than surgery for UC, but that cure is not just around the corner and I just couldn't wait any longer.  In a few months I know I will be fully back to all my normal activities, feeling strong and well for the first time in 6 years.  In fact, I feel pretty great right now.  Good luck and know that we are here for you.