Big breath...

Today has been one of the most insightful days of my life. I sit here in my hospital bed at Mt. Sinai full of more emotions than I thought possible for one small human to feel. A little pre cursor this post will contain some TMI medical info for those who are uncomfortable…For those of you who have been checking in with my last couple of blog posts, I have been struggling through one of the worst crohn’s flare-ups to date. I was admitted to the hospital last week and discharged in order to get my entyvio infusion. I knew when I left the hospital I wasn’t ready to go as I had yet to feel any relief from my symptoms but unfortunately this disease is a guessing game with no right answer and we decided the infusion was the best option I had. Upon getting home from the hospital Saturday my body just continued into a downward spiral to the point I wasn’t able to swallow a sip of water or leave my bed to go to the bathroom. Getting hit by a bus would pretty much sum up how I felt. I tried toughing it out for a couple of days in the hopes that I was just having a rough hospital to home transition. I also had developed a new abscess in my arm pit which was painful and just in general strange to appear overnight. By Monday, it was very evident that I was progressing downhill and needed to be re-admitted. I took a couple of hours to get some things together (including packing as much as I did for my honeymoon) and after river got out of work we once again trekked it to the ER. I was in the ER from 8 PM-7AM alone and unable to sleep. River stayed as late as he could and tried to get me comfortable but the dogs needed him and one of us needed to get a good nights sleep. That was the first official sleepless night I have ever pulled and I would recommend it to no one. The only upside to that entire disastrous night was the fact that as the light at the end of the tunnel I was given a private room. Hallelujah. The following day was one of the most frustrating days of my life.  River stayed at home to study for his CPA and spend time with the dogs and was planning on coming in the evening to spend it with me. All day long I felt invisible. No doctor came to visit me and my nurse was non-existent. I don’t really think anyone knew why I was here or what was happening at that point but the care I received was insane. I was complaining of pain all day that despite the IV pain meds I was receiving was not going away. Im talking cant open your eyes screaming pain. I then began to feel tingly on my left side and said I couldn’t feel my fingers. This was pretty much irrelevant to the nurse until river walked in the door and said my entire arm was black and blue and the size of a watermelon. My IV had not been going into a vein for who knows how long, but into my arm. It was and still 3 days later is extremely painful.

The next day was more eventful in the first 5 minutes I woke up than the first day. I finally met with my doctors for the week and came up with a gameplan. Unfortunately, my GI doctor and surgeon were both on vacation this entire week, so I was seeing members of their staff which was fine, just ironic and my luck. Basically the same thing weve  been attempting which is IV steroids in hopes the entyvio starts working. To me, this is a bandaid on a bullet wound…Within the first two days of being here my face has beyond tripled in steroid “moon face” and the amount of water weight I have put on from the steroids makes me look about 6 months pregnant. Its uncomfortable and painful to say the very least. Not something I was thrilled about my any means.

Some new symptoms had arisen when I came here, things that just medically were unusual for me. Being unable to pass gas or have a bowel movement despite eating and a general feeling that I just didn’t have much muscle control of my bottom as usual. The concern with this was a potential obstruction. They did a CT scan and found there was no obstruction so the next test they wanted to perform this morning was a scope in which they could see my rectum and colon and compare It to my last scope before I started the medication. This is a procedure done under sedation so I didn’t feel anything. Unfortunately and much to everyones surprise they were not even able to perform the procedure because I had an anal stricture, or extreme narrowing. This is a rare but not surprising side affect of the crohns. It explained a lot as to why I wasn’t able to control my anal muscles as well as why nothing was able to pass. The treatment for this was a small surgical procedure in which they dilated a balloon in my anus to help the muscles expand.  During this procedure the GI team was also able to perform the test they wanted. I woke up in the recovery room, high as a kite, and waited for answers.

The answer walked through my door at 7:00 PM on July 29. July 29 is six years to the day that I found out about this disease. 6 years of what now feels like a prison term. I knew the news the second the doctor sat on my bed. “Things don’t look good”. The very doctors who were doing everything they could to try to get my body to hold up enough to let this new drug they themselves designed looked me in the face and said it wasn’t good and it wasn’t working. They then told me they were recommending me for surgery as my only option. My heart sank and I lost my breathe instantly. I felt sad. I felt scared. I felt heartbroken. But then I felt relief. I felt joy. I felt vindication. I felt like someone was offering me my LIFE back. In the upcoming week I will be undergoing a proctocolectomy in which I will have my colon and my rectum taken out of my body. I will wear a colostomy bag for the rest of my life.

Take a second and digest that.

I have.

And I am thrilled. I feel like this is the solution to a new quality of life that I have never gotten to experience because this shadow called crohn’s disease has followed me around for the past 6+ years. I have done a significant amount of research on this surgery as well as belonging to many support groups in which most people have said that this surgery SAVED THEIR LIVES.  This is what I ask of all of you. Research the surgery. And please do so with an open mind and a heavy heart. In society it is often not talked about and looked down on as gross. Lets change that, I know I will and I am asking all of you to help me. This is not a pity party, this is the first day of the start of my life and I CANNOT wait to begin living it with those that I love.

More to come in the next couple of days as I get more information, I promise. I don’t know where exactly I found this strength, but I know I will need it as I begin this new journey of my life. Kiss those you love. Life is short and sweet and too precious. Im going to sleep with a smile on my face for tomorrow and my husband holding my hand.

Until next time, C