Tuesday, February 23, 2016

Ok so this is what's going on and I am frustrated so yeah....

I am writing this because frankly I have already told my husband, a daughter, my mom, my mother in law, my brother, my male best friend and I am tired of repeating the story so I am putting it here, you all can read it and then message me or give me input if you would like.

I went to my GI doctor yesterday for my follow up for my colonoscopy. First off, they were not able to get a clean biopsy from my colon for the cancer test due to the fact that after 4 laxatives and 4 liters of drink, I was still partially impacted. So I have to redo the colonoscopy in a couple of months.
My Entocort steroid STILL hasn't been approved and my doctor took it upon herself to write my insurance to tell them why I need it.

My pills for my Crohn's are no longer working. So I have been given the options of the following...

1. The Remicade 3 hour infusion (at a hospital) every 8 weeks plus the Imuran pill.

2. The Humira Pen (given by myself) every 4 weeks to start plus the Imuran pill.

3. The Cimzia Injection (also given by myself) every 4 weeks to start plus the Imuran pill.

You are welcome to look these up, but I am warning you, the side effects are all the same and not good.

For starters, there is a 1 in 40000 chance of developing Lymphoma with all four of these meds. If you have dealt with prior cancer, which I am still dealing with through my primary AND obgyn on what they want to do, then the chance is greater.

I am looking at weight loss, losing my hair, or total alopecia, severe abdominal cramping, Multiple Sclerosis and Lupus like joint problems and pain, chest pain, fatigue, fainting and dizziness, respiratory infections, rashes, itching, tightness in chest and/or difficulty breathing, nausea, and vomiting after taking the meds...just to name of a few of the COMMON side effects. These are just what my doctor listed off the top of her head.

I am at a point in my disease where this is the next option. I really have no choice in this. I really have no choice in which one I take, it's kind of up to my insurance.

I am also meeting with a surgeon because I have scar tissue in my intestines that the disease has caused and that will have to be removed and my intestines put back together.

So yeah, this is where I am at this point. I am a little frustrated, no, a LOT frustrated that I wasn't at least notified that they couldn't get a clean biopsy for the colon cancer. My mom is dying from it. I feel that is a pretty important thing to let someone know. I went in to this appt expecting to hear results and I got nothing..again.

Luckily, the steroids they had me on for the bleeding, has gotten that under control so I am good there, Now it is just the waiting game to find out which two lovely mixtures of the meds my insurance will be covering, and if they are going to cover my steroids.

The final news about these medications is they are 100 percent immunosuppressive. Meaning they totally stop my immune system. So I am open to infections, colds, flus, and when they hit me, I will get them harder and they will take a lot longer to get rid of because of this fact. Fun times.

I will also be having a TB test (needed before I can take any of the meds at all) and an xray to make sure there is no more damaged intestines that were missed. So lots of fun stuff ahead.

Anyways, I could use some friendly words, I am just overly frustrated, and frankly, a little scared of the next part of this journey.


  1. I love you honey we will get through this.

  2. I am here if you need to talk or vent. /Hugs

  3. I am here for you, even though I'm far away :). You are a strong person!

  4. I am here for you, even though I'm far away :). You are a strong person!