Well, where to begin?  I'm not even really sure!

I don't think I've made any mention about seeing this "new" doctor in St. Louis until now.  Many of you know my Crohn's has been on the downward slope since around January.  It comes on gradually, and the Remicade is simply coasting me for the moment.  After my 3rd colonoscopy in March, my GI doctor told me that I have active inflammation and in addition, they've noticed my blood levels on the rise, more specifically, my SED (inflammation) rate.  Oh joy!  So now, instead of going 6-7 weeks into my 8 week infusions of Remicade, and then getting sick, I start going down at around 4 weeks.  I get a treatment, and for 4 weeks I'm "normal," and then for 4 weeks I slowly get sicker and sicker.  Not ideal, but as I told the nurse today, 4 weeks is a lot better then 0 weeks.  She sort of agreed in a bit of a sarcastic chuckle, as if I was accepting defeat of the disease and wasn't seeing it.  See, honestly, I have not let this disease stop me.  But, from what I understand, MANY people let it defeat them.  Me?  I'm so stubborn, that Crohn's will have to do a lot more then what it has to me to knock me down permanently.  I'm too much of a fighter.

So, about 4-6 weeks ago, my GI calls.  Informs me we need to make a decision.  He wants to put me on the drug Imuran.  It's a controversial drug.  Some say it's not safe for pregnancy, some say it is.  Many of the OB/GYNs say not to use it, some read through the current minimal research, so just say NO because it's classified as a Category "D" drug, which basically means, DO NOT TAKE!  So, before I could make that decision, off to get a 2nd opinion we went, with my GI's blessing in hand.  Before today's appointment, I spoke with nurses from my fertility doctor (Dr. Gentry) and also the genetics counselor at my high risk ob (Dr. Turnquest).  Dr. Gentry said NO, Dr. Turnquest said, "We will follow the studies," which means she would allow Imuran while pregnancy, essentially.

I went guarded with questions and answers to St. Louis today.  I met with a renowned GI, Dr. Christian Stone.  My GI was going to send me to Dr. Stephen Hanauer, but kind of explained that Dr. Hanauer has quite a few more patients and he may not lend to my personality because I want to discuss and I need a doctors time.  I needed this 2nd opinion "because of our history."  I had a child with Cloaca for God's sake!  I don't rest easy with "controversial drugs."  Dr. Stone was the silver lining in everything!  His nurse practioner, Connie, was great.  Reminded me a lot of Dr. Prasads (GI) NP.  We had a discussion and we did talk about Reagan and all of them did indeed explain that they do not see any direct link, but it is difficult to say if they could ever link Remicade to that sort of birth defect.  Which leads us back to some of the answers from some of the top high-risk OBs and neonatologists, Reagan's anomalies?  Fluke.  God, I hate that word, but in the same token it gives me comfort.  The only reason I think I believe it was fluke and I don't blame myself is merely this: Addy was perfect.  Not a thing wrong with her little body.  How do you bear one child that is free of anomalies and another that is not in the same womb at the same time?  See my point.  That is my comfort and reassurance that Reagan's anomalies were "fluke" and that the Remicade had no influence.  Nonetheless, confirmation from doctors on top of their research is what I need to hear, and it's what I heard today.

But, guess what?  That drug Imuran that has bugged me for 2 1/2 years???  Dr. Stone doesn't think it's necessary.  In fact, he's ALL for doubling my Remicade.  I was shocked, and frankly, I'm a bit scared.  I'm scared that doubling it is shortening my "time" with Remicade.  With a lot of Crohn's drugs, you run their course and then it's done.  You move to the next drug.  But, 2 1/2 years ago when I was dx, I took nearly 30 pills a day, was bedridden for 8 weeks, on disability for 5 months, had every side effect possible, and then they pulled out "Remicade," but only after they informed me that it increased my risks for lymphoma (blood cancer) and that if I even had latent TB, it's possible to activate it.  Lovely.  And, Remicade is derived from rat protein.  Ya, we have had plenty of laughs over that one!   But, this drug has worked for 2 1/2 years and frankly, I'm scared it's going to STOP working and then we're back to the unknown and where do we go with that?  What drug is next?  How much does it cost?  What kind of insurance concerns do I have then?  What kind of side effects? What studies show long-term effects? You get the picture.  New drug=uncertainty.  So, I am very scared, yet comfortable with this decision.

Right now, I receive a dose of Remicade at 5mg/KG.  Now, I will receive a dose of 10mg/KG.  They said it could last 2 or more years, or 2 months.  It's anyone's guess.  The other option after this bump is to go from every 8 weeks to every 6 week infusions.  There IS one last step to Remicade after this move.  So, that gives me some comfort.

And, back to Dr. Stone?  Well, today, we decided, for my health, it would be best to make the switch and transition my care from Dr. Prasad to Dr. Christian Stone at Barnes Jewish in St. Louis.  A scary move.  I remember having to make this decision last year when going from my regular OB to a high-risk OB (this was before Reagan's condition).  I was scared to death.  Scared of "hurting" my doctors feelings, but realizing it was probably a smart move.  I remember Dr. Turnquest asking me last year "So, are you wanting me to take on your care?"  It took me a long time to respond a simple "yes!"  Same thing today.  In fact, Dr. Stone left the room and I made the decision with his NP, Connie, before we left.  I feel like I'm not trusting my prior GI, but I do.  I feel a sense of guilt about these things, no idea why.  And, the funny part of this?  Dr. Stone & Dr. Turnquest are 2 VERY top notch doctors that are VERY difficult to get into see (just a regular visit with Dr. Stone is a 2 month wait!!!), and they BOTH have asked, "Do you want me to be in charge of your care?"  Basically, saying, "You are worthy of my practice because you have a serious enough case."  And, I question it!  Crazy...absolutely crazy!  There we go again, I never let this silly disease knock me down.  I stand back up and keep going and I don't think I have ever realized JUST how seriously sick it has made me in the past few years.  I'm a walking anemic, I have joint aches, I have constant cramping, I have bruises all over, my veins are so tiny they fight getting IVs and blood samples, I tire so easily sometimes, etc..etc..etc.. (and that doesn't even include the whole "Crohn's" part!" 

So, now I am Dr. Christian Stone's patient and I will have to travel to St. Louis (about 3 hours) at least once per year, more if I'm ill.  They will administer my Remicade at the same place with no troubles there.  They gave me a written prescription just in case of troubles at my next treatment we have any hold ups.  I have a blood draw before they start meds and they will consult with Dr. Stone about any issues with my levels and if Dr. Stone feels the need to see me, back to St. Louis we go.  We just felt that Dr. Stone was more up to date on research and with the rate my disease has been failing meds, we felt it was a necessary step to assure that we are on the cutting edge of research.  In fact, today, I even signed papers to open my medical charts and give a blood sample to be involved in a study on Crohn's.  I was THRILLED to do that.  They blew 2 veins trying to get blood and I told the nurse if she needed to prick me again, no biggie.  She told me the hospital would only let her prick me twice and that I should NEVER let someone stick me more than twice!  Well, I don't usually end up with more than 2 sticks by the same person, but needles do not bother me, period.  They did get enough blood though.  Anyway, my identity is private, but I was excited to be able to give back to the same research that has helped me get where I am now.  Without it, things like Remicade would not be here to improve my quality of life.

As for the pregnancy?  Again, we reviewed "You need to be healthy in order to get pregnant."  All is okay there because I have an AMAZING fertility doctor that understands and works with me on this.  But, I do have a concern because even though I was "healthy" with the girls, it does NOT mean I will be healthy with future pregnancies.  Yes, the odds are good that I'll do well, but just because you have one pregnancy that is healthy with Crohn's, does not mean the next will be.  But, Dr. Stone, Connie, Dr. Turnquest, and Nicole (genetics counselor) all agree that the odds are in my favor at this point because the girls were of good size for 29 weekers and my Crohn's was in complete remission while pregnant.

Wanna hear the best news of the day?  I DO INDEED HAVE CROHN'S DISEASE.  No longer is there ANY confusion on whether I have Crohn's or if I have Ulcerative Colitis.  Everytime I go to the hospital, they would change it.  But, the VERY first thing the NP cleared up with me today.  Perianal disease (which is the bulk of my disease) is ONLY present in Crohn's.  PERIOD!  Do you know how great it feels to have a FIRM diagnosis after 2 1/2 years?  Words can describe!!!  Not that I'm THRILLED to have such a risky disease, but at least we KNOW exactly what it is now!

We drove 6 hours and spent about 10 hours total for the day with this whole process and it was entirely worth it. 

I am a patient of Dr. Christian Stone.

I have Crohn's disease.

I have a new start.

I am EXCITED!