It's been along time since I posted!! Remicade and Methotrexate

So, I have been on remicade since July of 2009 and while it has helped my symptoms it has never quite healed my colon and I still have very lose stools, very bad urgency, and I go to the bathroom about 4-6 times a day. If I am going somewhere on vacation or for a long day somewhere I still have to take immodium and when I take immodium I get very very bad pain from getting so backed up and all I take are two tablets if I take less I have to go to the bathroom.  So, my symptoms have been getting alittle worse lately so I had a scope done last Monday and they said that I had mild to moderate UC throughout my whole colon.  I am on remicade every eight weeks and am at the max dose of 10kg.  My colon is healed alittle from last time which was severe to mild to moderate thought my whole colon.  They were talking about upping my remicade to every six or four weeks but they want me to go on Methotrexate.  They said I have given the remicade enough time to heal my colon and it has never healed it.  They said that most of their patients are on double medications.  I am allergic to imuran and azathioaprine(sp?) and azacol.  They said I can not stay on remicade just by its self because it has been three and a half years and if it was going to heal my colon it would have.  I said what if I go on Humira and they said the chances of that working with out alone with out being on something else like I am with the remicade aren't that great.  They said that it will mostlikely more like the remicade.  They don't want to give up on the remicade yet but want me to go on the Methotrexate with it they said it is attacking your immune system from two different sides.  They wanted me to go on this a year ago and I didn't want to.  She said I need to to something else.  I would take three pills once a week and folic acid every day.  My problem is I am scared to take this.  It is bad enough I am on remicade now add this.  I have three school aged children and they come home with something all the time.  Since Sept.  they have had two colds and the flu just went through the house.  Now with the Methotrexate you will be lowering my immune system more.  Also, the cancer risk scares the crap out of me.  But so does surgery and if I have some issues with surgery or it turnes out I have chron's or get pouchitis and have to sit on these meds anyway I am going to be made.  I don't thing surgery is a cure all and doesn't have its own risks.  I told the doc this and she said it is my decision but the cancer risk is 8 out of every 10,000 get it.  With juse remicade it 6 out of 10,000 and with just methotrexate, imuran, etc it is 4 out of every 10,000.  I am just scared and don't know what to do.  I want to be around for my kids and don't want to get cancer or and infection and die all because of this medication.  But I could die in surgery or have major complations from it. Ugh  Some inside or encouraging stories would be nice.  I picked up the Methotrexate yesterday but haven't started it yet. Ugh!!!

I think you are overplaying the risks of surgery and underplaying the benefits. These meds are not helping you. It's bad enough to accept the med cancer risk when the meds are actually controlling your UC but in my mind it is absolutely crazy to accept the cancer risk of meds when they aren't even helping you. The risks of surgery itself are actually pretty small and the risks of major complications from the surgery are pretty small. There is a risk of minor complications from Jpouch surgery - anywhere between 25%-50%. Just about everyone who has had the surgeries wishes they had done it sooner before taking those meds and just about every one of them has said that the surgery gave them their lives back.

That is what she told me the chances of any other biologics working better than remicade is slim. I would still have to be on something with it. She said the Methotraxate gives the remicade a boost and those two together have helped people get into remission when they can't just on the biologics. So, I took it last night. I am scared but I know I will be mad if I have problems during surgery or end up with a bag that I didn't try this. I don't know that I will try all the biologics or just go with surgery next. I am getting to the point where it is sounding better and better. My goal was to by myself some time before surgery until my kids were older. My recovery time will be long. And painful and I was hoping they were old enough to understand that. When I was diagnosed my daughter was a new born now she is four and a half so a couple more years would be nice.