Are You Kidding Me?

I feel like the last couple of weeks have definitely been a whirl wind and my health and has not gotten any better but not any worse.  I have been doing weekly iron infusions as ordered by Dr. Rasmussen to try and get my iron levels back up to par. I have had several labs done and those also revealed nothing alarming besides the low iron levels.

Weekly Iron Infusion

I had a follow up appointment with Dr. Frech and Dr. Rasmussen this week as well.

DR. FRECH:

Since my last appointment with Dr. Frech, I have lost 11 pounds. He’s not super excited about this fact but my weight is what it is. I try my best every day to eat and just sometimes forget or am so nauseated that the idea of putting anything into my mouth seems out of the question. Dr. Frech has also switched medications around again to try and relieve the symptoms of being chronic constipation (sorry for the TMI moment…haha). He believes that if we can get this under control that it will relieve my symptoms of reflux. However…he suggested something I have never even thought would be an issue in my life. He says that for people who have chronic constipation they can do a subtotal colectomy.  When I heard these words come from his mouth I just stared at him in disbelief. I cannot believe that this is a maybe down the road. I am so against this. I think at this point, I would have to be near death for this to happen. I am 28 years old and do not want to deal with having this done. Let alone the fact that nothing to this point has gone right. He also suggested doing a test to pinpoint the problem areas of my colon to which I refused. I am against having anymore testing or procedures done. I am tired and I am tired of this being my life. I can still function everyday just fine. It’s something I have learned to accept and deal with and I try to not make it anyone else’s problem. So at this point (at least on Dr. Frech’s end) I am just on medication symptom management until my follow up in February next year!

DR. RASMUSSEN:

Dr. Rasmussen is not concerned with my weight loss because I am still with in normal limits. I will just have to be careful to not dip too low. He did talk to some of his colleagues about possible procedures and there are a few things that can be done now but none of them have long term success. He also said that at this point, he would adamantly advise against having a subtotal colectomy. If I was dying, and couldn’t deal with what I do every day, then maybe. And that’s the biggest maybe of my life! I also told him that at this point, I don’t want any more testing or procedures done. I am at the point that I want my life to be something different than this story it has been for the past 3 years. So on Dr. Rasmussen’s end, I will have my yearly labs done in March and we will go to that point.

MAYO CLINIC:

I have also been pre-approved to go to the Mayo Clinic in Arizona. They are basically waiting for me to decide what to do. It will be a game changing decision and I don’t know if this is what I want anymore. I feel like I do pretty well every day and I don’t want to be anyone’s guinea pig anymore.  I definitely have my moments and days but it’s nothing that some medications can’t cure.

GAME PLAN:

So here’s where things stand today. I will finish my iron infusions next week and continue my B-12 injections monthly and then all of my numbers should be stable at this point. I don’t want to do anymore testing for anything. I will try my best to manage symptoms. I also will need to make a decision about the Mayo Clinic and then we will go from there.