What a big week!

(As always....this post contains info that some people may not like reading about....  Just wanted you to know).  You were warned.  :-)

Well, this was a big week for us with lots of doctor's appointments...let me fill you in!

Wednesday, I saw my GI doctor.  This was the first time I had met with him since I started the Remicade infusions in August (and of course since I flared up before Christmas).  I went into this appointment unsure of what our options were going to be.  It feels like I've tried every type of pill specifically for UC and those didn't work.  Then, we tried an immunosuppresant that a lot of people have success with, but I was allergic to it and broke out in massive hives--not cool.  That's what led us to Remicade, which is a biological treatment--by far the most advanced and basically one of the "last stops" on his path of options for me.  Needless to say, when I flared up before Christmas, it was very disappointing because it felt like I had just wasted all these months on another drug that DIDN'T WORK! 

So, I am back on steroids (the only thing that works to calm everything down when I have a flare).  I am tapering off of them again, and since I am on some other drugs to balance them out (Lexapro and Klonipin), it honestly hasn't been too bad.  (Of course, to get an accurate picture of what I've really been like, you would have to talk to my blessed husband who is always so patient when I am on these nasty meds.  He might tell you a different story).

Anyhow, my doctor basically told me that there is a new blood test--like SUPER new that he just discovered in the last 3 weeks--that can test me to see if I have an antibody working against the Remicade.  That is our next step in the process.  I will do that blood test to see if there's even any reason to continue with it.  We didn't want to stop my infusions altogether (and I was due for one on Thursday of this past week), because if you stop and then start again, the efficacy of Remicade reduces dramatically...which is not good. Ugh.  

So I went ahead and had a infusion on Thursday.  Woohoo for meeting our deductible in ONE day! Ha. It went fine, and hopefully we will have the blood test and lab results back before I need another infusion again in 8 weeks.

If the test comes back that I do have an antibody, then we will have to try a different drug.  If I don't (and this recent flare up was just a random flare/fluke), then my doctor is going to try to adjust the dosage and/or frequency of my infusions, meaning I could get more of the drug each time or I could have them done closer together than 8 weeks to prevent a flare.

We told him our desire to get pregnant at some point in the near future, and he told us absolutely not.  It is just not safe when my body is having a flare, and we need to wait.  Obviously that is disappointing news, but I knew he would tell us that.  I have to be in "remission" in order to get pregnant, which basically means an extended period of time without a flare.  I don't think I've ever been in remission, which is why it is such a mystical idea to me.  Haha.  He did say that if I were to get to a place where he feels comfortable with me trying to get pregnant, he would be willing to do a "mini colonoscopy" in my lower bowel just to make sure there is no hidden inflammation lurking in the background.  That would give us peace of mind as we tried to get pregnant...that was comforting and helpful news!!!  Do I want another colonoscopy procedure?  Um....no!  But do I want to get pregnant and have complications that could have prevented? Absolutely not.  I think I would feel so much better knowing for sure that my colon was healthy before we tried to get pregnant.

So, basically we're waiting on the blood test to come back.  Once we find out the results, we will either go ahead with Remicade or we will try a different drug (that would still be through an infusion).  I can't remember the names of those drugs because we'll cross that bridge when we get there, but he did let us know that if that last drug doesn't work, we will need to go see a specialist at Mayo (or another specialty facility).  We will have exhausted all of our options, and he just feels like I would need to see someone else at that point.  I really appreciated him being honest and telling us that.  He never tries to predict the future, because obviously this disease is anything BUT predictable, but he at least told us what the next phase would look like.

I'm not really even sure how to ask you to pray.  Obviously, it would be great if the Remicade is an option for me, and he could just tweak it to make it work.  If it's not an option, then we're praying that the next drug works!  And if that doesn't work, you can start praying for my new doctor that we'll see (probably at Mayo because my mom had such a great experience there when she had her breast cancer surgery, and we just trust them immensely) and my heart as we anxiously wait to see what will happen.  Waiting is just hard.

I told my counselor on Friday that I sometimes feel like I'm living on "pause" waiting for the right drug and that once we find it, we'll be able to hit the "play" button and get back to normal life.  I can't continue to live just waiting on the next flare up because it is just so daunting and overwhelming.  I'm thankful for counseling and her listening ear.

Lots to be thankful for....a great support team (my GI doc, my nurses that do my infusions are wonderful, my primary doctor, my counselor, my husband, my family, my friends that are GREAT listeners and encouragers, and YOU for reading this ESPECIALLY long post and for praying for me along the way).  I am so blessed by each of you.

I'll leave you with this that has been my comfort this week:

"Yet the Lord longs to be gracious to you; he rises to show you compassion.  

For the Lord is a God of justice.  Blessed are all who wait for him!"