A Stool You Can't Sit On in General Mental Anesthesia

In my previous entry I spoke of depression largely in regards to Ulcerative Colitis.

Although IBD AWARENESS WEEK is over, things are going on with me currently that I feel I should talk about from an educational perspective.

I had a bunch of Dr’s appointments yesterday and more today (mostly involving my UC).

One of those was with my primary care because of a hospital stay I had a little over a week ago with blood in my urine. A LOT of blood. They treated it as an infection (but in very severe cases of UC like mine, it’s possible for the UC to affect areas outside of the colon, such as the kidneys which is what they’re looking into.

The other was a blood test I needed to determine if I can go on chemotherapy treatments for my UC.

I had 2 significant blood draws an hour apart. Between that and the blood loss at home, I was really dizzy and feeling faint for some time afterwards. I had to eat something, but of course I was dreading it. (I’ve lost 28lbs in the last 5 weeks).

The 2 things I want to focus on are (the bullshit cure (there is no cure)) and responsibilities. Let’s start with the latter.

So I’m on C-Diff watch. What is C-Diff?

I’ve recently been on a couple rounds of antibiotics.

You take antibiotics to knock out a bacterial infection. But for some people, these drugs can trigger a potentially life-threatening infection caused by a type of bacteria called clostridium difficile, or C. diff. It can cause colitis, a serious inflammation of the colon. (Which I already have). Your intestines contain about 100 trillion bacterial cells and up to 2,000 different kinds of bacteria, many of which help protect your body from infection. When you take an antibiotic to treat an infection, these drugs tend to destroy some of the normal, helpful bacteria in addition to the bacteria causing the infection. Without enough healthy bacteria to keep it in check, C. difficile can quickly grow out of control. The antibiotics that most often lead to C. difficile infections include fluoroquinolones, cephalosporins, penicillins and clindamycin.

Once established, C. difficile can produce toxins that attack the lining of the intestine. The toxins destroy cells and produce patches (plaques) of inflammatory cells and decaying cellular debris inside the colon and cause watery diarrhea.

Other symptoms I have (and they’re also common with severe UC which makes determining if you have c-diff very tricky) are increased heart rate & white blood cell count, weight loss, nausea (possible kidney failure…) more.

I’m hoping that I don’t have it because if I do, that’s at least a week in the hospital because c-diff kills 30,000 people a year if not treated immediately and I’ve been showing signs now for a couple of weeks.

If I don’t have it, then it’s just the extreme severity of my ulcerative colitis.

Yesterday, my Dr. gave me a stool sample kit.

That’s right, I had to take a sample and then had to get it to the hospital in under 2 hours.

Me waiting at the hospital this morning with my sample.

Now, there is NO CURE for IBD (CROHN’S OR ULCERATIVE COLITIS) Let’s just get that out of the way. However, Gastroenterologists will tell you that surgery is a cure. That is 100% BULLSHIT!!!

I personally know about 15 people that have had surgery (the removal of the lower colon (stoma) or (what Dr’s want to do to me) take out the entire large intestine (j pouch).

Here’s the 1st problem.

1. I got ulcerative colitis on Aug 23rd, 1992. In 26 years, Dr’s still don’t know what causes it. Other than biologics (humira etc… and chemotherapy (remicade / entyvio) no advancements in the treatment of uc / crohn’s have been made.

2. Since no one knows what causes it, removing the diseased portion is a temporary fix, because at any given time, new areas can be affected, I know many people that this has happened to.

3. There are a great many complications from these surgeries and every single person that I know whose had one of the two surgeries have had 1 or more complications such as: infections, protrusions (requiring surgery) trauma, hernias, necrosis, obstruction, abscesses, leaks, inflammation, fistulas and more.
   

4. None of the people I know (except 1) are satisfied with their surgery and she just had her anus sewed up because of leakage since it doesn’t get used anymore.

5. EVERYONE that I know and dozens more that I’ve read about continue to have IBD related issues post surgery. They still require medications, even biologics and chemotherapy, some still require special diets and a lot of them still get hospitalized. Well what the fuck??? I mean really???!!! How in the hell is this a cure??? One of the women I know spent nearly 4 months in the hospital this spring / summer 2018 and this is a year after her surgery. She needed a feeding tube and other tubes, she was a mess and it was heartbreaking seeing her posts on instagram.

6. The inconvenience. In most cases you still need to go to the bathroom (change the bag if you have the stoma) 6 - 8 times a day. I wouldn’t be able to do my job if that were the case, just as I can’t now.

7. I know that there are a great deal many more people that speak highly of these surgeries. I read their posts and they are all extremely brave individuals. I applaud them, and I also feel extremely sorry for them because they all have 1 thing in common… they don’t know what I know. That their surgeries were unnecessary.

Why?

Because when I nearly died in 1998 from my uc. The J-pouch surgery (proctectomy with ileal pouch-anal anastomosis) was the only option according to my GI at the time. I was dying (much like I am now) and back then I was willing to have the surgery. Anything to get some relief from the constant pain and sickness. I totally understand why people go under the knife; I was desperate!!!

Fortunately, my mom wouldn’t allow it. She found a holistic Dr. but he had a 1 year waiting list and I didn’t have that long. He personally recommended Dr. Mackey who trained with him. I got in to see her right away (and I should mention that I was not a believer in this stuff at all, to me it was witchcraft (no offense to you wiccans out there)). I was just ignorant.

Without going into detail, that’s a whole other entry, she did for me what my GI and other Dr’s said was impossible. She got me into a 17 year remission. After 2 months of treatment, I was off of all 14 pills that I was supposed to be on until the day I died (prednisone & asacol). 5 months later I was working again and a few months after that I was back in college to finish school. I only saw her 3 times.

I could also eat whatever I wanted. Dairy, spicy foods etc… I actually had my life back! It was (and I still consider it to be miraculous).

I know that there is a better option out there than surgery. That’s why my friend set up this GoFundMe account. To go see Dr. Mackey again.

Just to catch you guys up. My remission ended in Nov, 2015. At the time I was living paycheck to paycheck and couldn’t afford to go see her. I was too sick to work, but somehow forced myself to, I had to. In the spring of 2016, I got a celebrity client

(I work in the film/ tv industry) and I desperately needed the paycheck. I don’t know how I got through it physically, sheer will and a very high tolerance for pain I guess, but once completed, I was way too sick to do anything else.

I couldn’t look at the camera in this behind the scenes shot because I was in a hell of a lot of pain (cramps) from ulcerative colitis at this exact moment. I was running to the bathroom all day, each day of shooting, trying to hide my illness (saying I needed to get more batteries or a light etc…). This is why it’s called “The Invisible Disease”. Had I not mentioned it, you wouldn’t have known. I had to hide it from my crew and the client; it’s a near impossible task.

I had no family or anyone to help me and I could no longer care for myself. My mom & sister said: “Come to NC, from So Florida for a week or 2 so you can de-stress” so that’s what I did.

Except everyday my health worsened and was forced to see a GI in NC. The day of that appointment, an elderly woman was walking up to the front doors, so I held the door open for her, but I was so weak from blood loss, that I fainted and fell backwards about 8 feet. I was immediately hospitalized.

From that moment on, things continued to worsen and I was unable to go back to FL. I lost my home, my car and had to sell off most of my belongings. I lost everything. Now, 2 years later, I’m 1,000 miles away from Dr. Mackey and I’m teetering along the edge of eternal darkness.

My current GI is trying to get me on Chemotherapy and I’m willing to do it because I’m too sick to travel and I don’t have the funds to do so anyhow to go see Dr. Mackey, but that is my ultimate goal. I want so very much to get well and she is the light at the end of the tunnel, not a scalpel.

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The last thing I’ll talk about is my back.

Speaking of surgeons, I saw my back surgeon today. Surgery is likely inevitable at some point with all the damage I have, but he did go over my bone density exam. Due to all the Prednisone that I’ve been on (which destroys bone mass) we both expected that my skeleton was an eggshell. Guess what? My bones are NORMAL!!! Likely because I took a lot of vitamins A, D etc… specifically to counter the effects of prednisone. Seems to have worked!

This means that (if I get approved for the $1100 boa brace) that’s the main course of healing the T-11 & T-12 compression fractures. Of course with my uc, I’m very anxious because just a t-shirt hurts let alone a fitted brace, but I know I need it because every time I move I can feel the broken bones in my spine shift. It is VERY painful!

He also put a note in my file for my primary care to write a script for pain meds to bridge the gap between now (or next week when I see her) and January when I start going to a pain management center. Right now I have nothing for the pain, combine that with the HELL that is UC and that’s why I’m up at 4:33am writing. between going to the bathroom, cramps, pain everywhere… there’s no sleeping, not even close. :(

To come full circle, I’m always thinking about the things I love to help me fight the depression; my work being a primary focus.

The last project I was working on that I was forced to cancel because of the severity of my colitis was a play. I worked at a place called “The Abyss Theatre”. We do horror themed plays. I’ve written and directed pieces, did the sfx makeup, filming (we also have a theater screen and incorporate video production as well).

I wrote a play called “Rock ‘n Soul’d” and was to not only direct it, but star in it and film about half of it, including music video’s. It was about the lead singer/bassist (a woman) who fronted an 80’s hair metal band that never quite found success. She threw her life away with booze and drugs and was a failure as a result. Until one night the Devil visits and everything changes, but not in the ways you might think…

So, in the play, I am one of her band members (guitar player) and in one moment we’re playing a song on stage live: Zakk Wilde’s “In this River”. I was just listening to it, thinking about how I was teaching myself how to play the guitar parts

Thinking about my script, and the crushing moment when I had to come to terms that I was too sick to continue and the entire project got shelved. I had it fully cast and everything… everyone was looking forward to it. To this day, I really feel like I let down a lot of people.

(sigh…)