Emaciated to the Point my Skeleton Aches in General Mental Anesthesia

Thank you for all the kind comments on my previous entry, it means a lot.

Due to several factors, In the last year I’ve lost 75lbs. For anyone that knows me or have seen photo’s of me throughout the years know that I don’t have it to lose.

In my mid 40’s, I’m now the same weight I was when I was 19.

In the Spring of 2020 I got off of Prednisone. Historically, every time I wean off of it, I get sick and am hospitalized and put right back on it. higher and higher amounts of it.

Over the years, Prednisone has caused avascular necrosis in my knees (rotting bones) and osteoporosis in my spine causing half a dozen broken vertebrae and more, so I decided that when I stop the Prednisone, I was going to refuse ever going back on it; knowing full well that it was going to make me extremely sick (re: ulcerative colitis).

And I was… violently ill all spring, all summer, all fall… I should’ve been hospitalized many times this year, but I stayed home just being in tremendous pain all year long, but I couldn’t go to the hospital, because the first thing they’d do is put me on a 125mg of Prednisone through IV, I couldn’t allow that.

Now, Predinsone does cause weight gain; water weight and it makes you hungry, extremely hungry, so you gain weight. At 5‘11 I’m usually about 165 - 170lbs. A year ago I was 210lbs. As of today, I’m 134lbs.

I lost the water weight, but then I was so sick, I couldn’t hold down food, going to the bathroom 15 - 20x a day. Then due to blood loss, I suffered recurring anemia. Anemia symptoms are dizziness, headaches, fatigue, malaise, generalized weakness, shortness of breath (and I already have respiratory disease) and uncommon, but I think it’s because of my UC, I always get extremely nauseous and throw up constantly. Another reason for the weight loss.

A couple of months ago, I was gifted through my GoFundMe page some Visbiome. Visbiome is an ulcerative colitis specific probiotic, but it’s very expensive. So I started taking that and I also thought… since I’m not on any meds for UC, no Prednisone or chemo anymore, I can start taking the holistic approach again. Now, I can’t get access to what I really need, that has to be given to me by a holistic Dr. but I did get a bunch of things to try and help. (Marshmallow Root, Slippery Elm, Licorice Root, Myrhh Gum etc…). Two months later it started helping (which is the sole purpose of the GoFundMe page). I was now going to the bathroom 8 - 10x a day.

This was a month ago, but I was bleeding so much, that I once again became anemic. I had an appointment with my hematologist, but it was a month away, I called to move up the appointment, but I couldn’t. I started vomiting after every meal, I began eating less and less. I would gag just thinking about taking pills (and I take about 60 a day! Between vitamins and prescriptions etc…)

I just had my appointment, I was severely anemic and got an iron infusion, my 8th of this year I think.

Waiting on iron like…

Of course, my luck followed me there, and by that I mean… They stuck me in one arm, and before they could hook up the iron, the IV failed. They kept trying to wiggle it around in my arm (Which fucking hurts!!!)

So then they moved to my other arm. I’m not happy by this point.

Last night (and I hadn’t eaten all day) I went to the pharmacy. I was wearing pants and a shirt and a winter jacket with gloves. It was just 40 degrees out, but I was cold. I could barely move when I got home, that was unusual.

I turned my heating pad on (145 degrees) and laid in bed (still fully clothed). I had a wicked migraine but I can’t take Advil (which is the only thing that helps my headaches because I’m on a blood thinner). So I suffered. After 2 hours, I was still freezing, my hands were ice cold. I drifted in and out of consciousness.

At 12 o’clock I got sick. I didn’t know if it was midnight or 12 noon; I have blackout curtains. I violently threw up in the bathroom. It was midnight. My heating pad had shut off so I put it to the side and got undressed. I laid down under the covers. It was cold in my room, but I got sick again at 3am, this time, I woke up in a pool of sweat. WTF??? When I got back to bed, I couldn’t even lay down because the sheets were soaked!

I’m so lethargic I can barely move. I miss having energy, feeling normal, just getting up and having a normal life, doing normal things. I so took that for granted when I was able to work and live my life. That seems like ages ago.

I write now and my skeleton aches. My shin bones, my knees, my back, just pain everywhere.

It’s #NationalCrohnsandColitisAwarenessWeek (The 1st week of December). Meant to explore what it’s like to live with this disease, so there you have it. Welcome to Hell!

Last updated December 05, 2020