A Life or Death Update in General Mental Anesthesia

Needing to update the https://www.gofundme.com/jayeeryk that was set up by a friend on my behalf. A friend who has lost a close family member to the illness that is currently killing me (and I mean that literally).

1st day admitted to the hospital a year ago. I had no idea how bad things were or how much worse they would get.

I have several entries here on PB detailing much of my struggle with Ulcerative Colitis & not having health insurance etc… and I’ve also mentioned that I would do a separate entry on the illness itself.

When Open Diary existed I had a few of them. One that I had contained the following: it was just a few entries explaining my illness, a brief history and how I miraculously survived at a time when I should have died. I wrote it to help others who suffer.

So, I’m going to basically c/p those old entries in here because that is what the GoFundMe page is all about. The reason it exists is to see the person that can save my life because all other options and meds have failed leaving me not only completely broke, but broken.

There will be a lot to read, I’m combining several entries into 1, and I will update with any new relevant information as well, so without further adieu:

ENTRY 1.

Health, a major issue for all but especially for some

Ulcerative Colitis - Commonly affects adults, 15 - 40. More often later in life, but certainly not always. The exact cause of the Illness to date is unknown. (This still holds true in 2017).

Ulcerative colitis is an autoimmune disease that causes inflammation and sores, called ulcers, in the top layers of the lining of the large intestine. (In severe cases). Typically, the inflammation usually occurs in the rectum and lower part of the colon, but it may affect the entire colon. Ulcerative colitis rarely affects the small intestine except for the lower section, called the ileum. Ulcerative colitis may also be called colitis, ileitis, or proctitis.

The inflammation makes the colon empty frequently, causing diarrhea accompanied with extreme pain. Ulcers form in places where the inflammation has killed colon lining cells; the ulcers bleed and produce pus and mucus. With such intense inflammation, particularly in the more severe cases where the large intestine is ulcerated, the job of the large intestine to absorb such fluids is stopped.

Theories about what causes ulcerative colitis abound, but none have been proven. The most popular theory is that the body’s immune system reacts to a virus or a bacterium by causing ongoing inflammation in the intestinal wall. People with ulcerative colitis have abnormalities of the immune system, but doctors do not know whether these abnormalities are a cause or a result of the disease.

(Dr’s say:) Ulcerative colitis is not caused by emotional distress or sensitivity to certain foods or food products, but these factors may trigger symptoms in some people.

The doctor may do a colonoscopy. For this test, the doctor inserts an endoscope–a long, 6 foot, flexible, lighted tube connected to a computer and TV monitor–into the anus to see the inside of the colon and rectum. Again, in most cases, a sigmoidoscopy is only needed to look at the descended colon, a much shorter endoscope is used. The doctor will be able to see any inflammation, bleeding, or ulcers on the colon wall. During the exam, the doctor may do a biopsy, which involves taking a sample of tissue from the lining of the colon to view with a microscope. A barium enema x-ray of the colon may also be required. This procedure involves filling the colon with barium, a chalky white solution. The barium shows up white on x-ray film, allowing the doctor a clear view of the colon, including any ulcers or other abnormalities that might be there. Biopsies are important because those with this disease are at a much higher risk for colon cancer.

I, myself have had over a dozen sigmoidoscopies and more than 10 colonoscopies. (Most discomforting procedures. (though they are not nearly as bad now as they were 10 - 20 years ago)). The Sigmoid’s are done without any anesthetic, you are wide awake and can watch it on a television monitor. Unfortunately, this DOES NOT ease the discomfort, especially when they take biopsies. The Colon’s they knock you out for, but when you awake… oh the pain! At least, if you have an issue in that area otherwise it’s not so bad.

Treatment for ulcerative colitis depends on the seriousness of the disease. Most people are treated with medication. In severe cases, a patient may need surgery to remove the diseased colon. Surgery is the only ‘cure’ for ulcerative colitis…

… or so they think. Please, for all those who suffer, or know someone who does suffer… listen to my story. You CAN be helped! You CAN live a “normal life”. I will help put you or your loved one back on the road to health.

I am not a Doctor, but I have learned how to put colitis in remission, eat what I want, and not take ANY medications to do so.

I am living proof and soon you can be too.

“Never lose the fight within’“

ENTRY 2.

Wednesday, August 23rd 1:04 am. The exact moment in time when my colon practically exploded within the confines of my flesh.

In truth, it started earlier in the day. I had a stomach ache, nothing more, nothing less. I decided to stay inside and rest while my family; Mom, Brother, Sister and stepfather had gone to the zoo. Later that day, my mother called me up to ask if I wanted to meet them for dinner. We hardly ever went out to eat, so I decided to go, I thought I felt a little better, so why not?

I ate a normal meal, but still wasn’t feeling (normal). Then at 1:04 am about 5 or 6 hours after dinner, I awoke, with the feeling of cramping and diarrhea… running towards the bathroom, I didn’t make it… Throwing up… the whole nine yards. I was crying and moaning in pain; food poisoning???

Over the next 3 days, we didn’t know what was wrong, could be the flu, just some sort of stomach bug, but it was worsening. After the first day, I had nothing left in my system. I was running to the bathroom every 10 minutes; intense cramping and expelling nothing but blood. I was bleeding internally, I could hardly stand on my own 2 feet, literally dragging myself into the bathroom, just to leave a trail of blood everywhere. I was in so much pain I could no longer bare it.

My mom took me to see a gastroenterologist as soon as she came home. He looked me over very briefly, not knowing what was wrong he knew the kind of shape I was in. I had lost 20lbs in the past 3 days, and was barely conscious.

The Dr said I had to be admitted to the hospital. Of course I didn’t want to go, I pleaded with him… “Please, can I just go home and stay there tonight and at least get a change of clothes, then if I have to; I can go into the hospital tomorrow?” His exact words to me: “You may not be alive tomorrow.” So…in I went.

I had to be carried to a wheel chair, because I hadn’t the strength to stand on my own. I was drifting in and out of consciousness, I was scared and I was dying....

ENTRY 3.

Saturday, August 26th (Afternoon) I was admitted to Mass General Hospital in Boston, Massachusetts.

Not knowing if I was going to live or die, (and on a personal note: this was a strange feeling, I also suffer with major depression, and at the time I was suicidal, so, really, I wasn’t afraid of Death per se’ as I was the pain associated with it).

Never-the-less, I was an 18 year old kid, about to go into college, leaving an abusive home, a competitive swimmer in training for the Olympics and now here I lay, uncertain of things to come. They performed test after test on me, stool samples, biopsies… I overheard them talking with my mom, saying I could have cancer, more tests needed to be done. I always wondered why Dr’s think a see thru curtain is as sound proof as a shut door.

For the 1st week, there was no diagnosis on my condition until I heard the words… (Ulcerative colitis). At first, I was relieved thinking, oh, well if it’s just an ulcer… thank G-D! Well… ‘twas a little more than that.

The severities of Colitis:

1. MILD: Where just the lower region of the colon is affected.
2. MODERATE: Where the entire colon is affected
3. SEVERE: Where the ulcerations are found all throughout the entire colon, and large intestine, sometimes up to the ileium.

Yes, I had the most severe case of ColitIs. 10’s of 1000’s of bleeding ulcerations all throughout my colon and large intestine.

Life was about to change forever…

I could no longer (according to Dr’s) ever have any dairy or food with lactose… IE: Breads, butter etc… I couldn’t have caffeine, nothing with seeds like strawberries or sesame seed hambuger buns etc… I couldn’t eat the skin of an apple, or any other fruit, no carbonated beverages, no spicy foods… no gassy foods, no green leafy vegetables…

What the hell was left? I might as well be dead.

They had me on Prednisone & Asacol, for the inflammation. These are both very dangerous drugs, I will post an entry solely on them next.

After 3 weeks in the hospital, 5 or 6 different IV’s, and a strict diet, I was able to go home.

Little did I know, my nightmare was just beginning.

ENTRY 4:

Most patients with mild or moderate disease are first treated with 5-ASA agents, a combination of the drugs sulfonamide, sulfapyridine, and salicylate that helps control inflammation. Sulfasalazine is the most commonly used of these drugs. Sulfasalazine can be used for as long as needed and can be given along with other drugs. Patients who do not do well on sulfasalazine may respond to newer 5-ASA agents. Possible side effects of 5-ASA preparations include nausea, vomiting, heartburn, diarrhea, and headache.

People with severe disease and those who do not respond to mesalamine preparations may be treated with corticosteroids. Prednisone and hydrocortisone are two corticosteroids used to reduce inflammation. They can be given orally, intravenously, through an enema, or in a suppository, depending on the location of the inflammation. Corticosteroids can cause side effects such as weight gain, acne, facial hair, hypertension, mood swings, and increased risk of infection, so doctors carefully watch patients taking these drugs.

I was on all of the above… and had many hospital stays in-between. (Currently I have been on high dosages of Prednisone for over a year along with more mesalamines (Lialda, Apriso). Prednisone is killing me, but also the only thig keeping me alive, the other meds do not work at all, but Dr’s still want me on them. I’ve also been hospitalized several times since last September (2016)).

Other drugs may be given to relax the patient or to relieve pain, diarrhea, or infection.

Occasionally, symptoms are severe enough that the person must be hospitalized. For example, a person may have severe bleeding or severe diarrhea accompanied with vomiting that causes dehydration. In such cases the doctor will try to stop diarrhea and loss of blood, fluids, and mineral salts. The patient may need a special diet, feeding through a vein, medications, or sometimes surgery.

Prednisone - A medication I took, to aid the Asacol medication I took that wasn’t very effective or not effective at all. Both medications, I was only supposed to take for 6 weeks then slowly get off of them. Unfortunately, my system was in too bad of shape to survive unmedicated. Every time I tried to get off the meds or even slow down, I had a relapse and back in the hospital. I couldn’t live without them!

I was on these medications for over 6 years…

Prednisone Side-effects. (Short list)

Diarrhea, dizziness, flu-like symptoms, gas, headache, nausea, stomach pain, abdominal pain, acne, back pain, belching, bloating, chest pain, chills, constipation, fever, hair loss, hemorrhoids, indigestion, insomnia, itching, joint pain, leg pain, liver disorders, muscle pain, nasal inflammation, rash, rectal pain or bleeding, sore throat, stomach and intestinal bleeding, sweating, swelling of the arms and legs, tiredness, urinary burning, vomiting, weakness, difficulty breathing, closing of your throat, swelling of your lips, tongue, or face, hives, increased blood pressure, blurred vision, fatigue…

Asacol Side-effects. (Short list)

See all of the above, plus…

alveolitis, eosinophilic pneumonia, Interstitial nephritis, nephrotic syndrome, renal failure, aplastic anaemia, leucopenia, neutropenia, thrombocytopenia & Pancreatitis among lot’s more…

You can add even more for Liada and Apriso…

After years of losing the battle with Colitis, suffering with so many side-effects just complicated the issue, Sometimes 14 + pills a day with Dr’s frequently increasing the dose because my body grew accustomed to the meds and if I tried to get off the meds, I immediately got sicker and hospitalized. An average dose of Prednisone is 20mg/day, but by year 6 I was close to 100mg/day!

ENTRY 5:

Years pass… I would be feeling somewhat better, and seemingly in remission… (but not really). I would be healthy enough to go back to work, although I was still going to the bathroom 6 - 8x /day.

At least I could make some money as I was living on my own.

(This gets a little tough, bare with me here…)

I had a very abusive upbringing, daily beatings, severe beatings, choked, punched, thrown downstairs, dragged upstairs, my head put through walls etc… I was anorexic (not by choice however, caused by another illness) and my step-father that beat me was 6‘4 and 280lbs…

He never once called me by my name. It was always” “Hey dumbass, Hey stupid or shit for brains”.

Throughout my battle with Colitis, I tried to work, and stay in school. I really wanted my education. I had no money and a car that always broke down. At 21 I had moved back home, for a short spell, I had not been hit in a few years, not since a major fight on my 18th birthday when he threatened my life. But this one day, we got into a fight, another one for completely bullshit erroneous reasons, and he back fisted me in the jaw, knocking me down. My lip split open.

I was more in shock that he had the balls to hit me after what happened last time. He was in my face, and rage built up inside me… furious, rage! I knew he had bad knees and as soon as he turned and walked away, I side-stepped up behind him, and scissor kicked him right in the back of his knee; he never got back up, I cussed him out and got in his face, walked out and to this date have never returned home.

Thankfully he died years later and is burning in hell. (At least I hope there is a hell, because if that asshole is in heaven… then heaven is not a place I ever want to go!)

So, this was in September of 95’ (the fight). I left my mom, younger brother and baby sister, with just the clothes on my back. I had nowhere to go, and for the first time in my life, I wasn’t just a runaway; I was truly homeless.

Suffering with Colitis, working 50 hours a week, and homeless, I somehow survived. A few months into homelessness; I got back into school, doing homework in parks or parking lots under streetlamps or at Denny’s at 3am; however, in dealing with this illness, I learned one thing: that stress, though maybe not the initial cause of Colitis, does definitely cause relapses, which is what happened.

By March 96’, I had saved enough to get an apartment, but I was getting very sick again, and I had to withdraw from school just a month from finals, and I lost my job soon there after, because I was often late or spending too much time in the bathroom.

I tried to get help from the government (financially) but they turned me down (twice) saying Ulcerative Colitis was not a good enough reason for aid.

When my lease was up, I could not renew. I was homeless once again and still very sick.

Skipping ahead; I couldn’t hold down a job and I couldn’t get back in school, The Colitis was winning; It was killing me.

Late 1997 into 1998, the Dr’s were telling me that there was a good chance I had colon cancer, because I had been so inflamed for so long. (An issue I am currently facing). There was an experimental new surgery where they take out my entire colon and large intestine. Basically removing the diseased portions, and cutting the small intestine and stretching it down to the rectum, then slicing it open to make a new colon.

There was a very poor success rate, a 50% chance I’d never wake up from the 1st surgery, it was actually 2 surgery’s, and excruciatingly painful. There was an 80% chance that 6 months after the operation I would experience negative side-effects or complete system failure, in which I could die.

Dr’s said it was my only chance to live, that if I didn’t do this, I would not survive more than a few months.

Bare in mind, to this day no one knows what causes the initial break out other than the disease being hereditary. They have not confirmed, but suspect that stress causes relapses. Think about this… if stress plays a major role, and they take out the diseased portion… what’s to stop this from happening again to another part of your body years later? And it has since been confirmed many times over when patients undergo surgery have these same issues occur elsewhere years later. I also know several people that have had surgery and still have to take Prednisone and other meds plus need to be hospitalized frequently. Well what’s the fucking point?

I was hurting so bad everyday, just in so much pain that I couldn’t take it; I was going to do the surgery while I still had insurance.

My mother wouldn’t allow it. She sought out a holistic Dr., (I didn’t want to go see some ‘witch doctor’. Unfortunately, the guy she wanted me to see had a 1 year waiting list, but he highly recommended me to someone, a colleague, and so, despite my ignorance and in desperation, I saw her…

ENTRY 6:

I saw Bonnie, in October of 1998, a certified holistic practitioner & Dr. (MSN, ARNP, CMT & HNC).

The woman who saved my life

(Please do not reach out to her. She is aware of my situation and that I am trying to raise the funds to travel and see her).

The very first thing she said to me was…

“I can cure you.”

I must have been bug-eyed. No one has ever said anything even near that positive to me. Certainly not any previous Dr. GI or otherwise.

(Technically, there is no ‘cure’ for Ulcerative Colitis) but this is the next best thing. We spoke for a few hours, she wanted to learn what my stress factors were and she did some basic tests. She could see I was extremely dehydrated, and had internal bleeding, inflammation, and blood in my urine as well. She said my kidney’s were failing, my bladder, my liver… I was severely malnourished and the heavy meds were killing me, not just the illness alone.

She discussed with me about meditation, relaxation, and dealing with stress. Then we talked herbs.

She put me on dozens of different herbal remedies. Herbs she grows herself.

One of which was a tea. I called it: “Swamp tea” because it was green and murky, and she gave it to me in brown bags, it was like dirt, and leaves, and sticks etc… ) a loose leaf tea, pretty crazy, I had to steep it myself for five hours and drink it warm 2x/day. I’ll be honest, it was the most vile, repugnant and putrescent thing I’ve ever ingested! It was absolutely horrid!!! I could sweeten it with honey, not that it helped. Personally, I would have rather of eaten a dirty sneaker, but she promised that it would help.

I was also given herbs in powder form, that I took. Things to aid digestion; Marshmallow, Myrrh powder, golden seal, psyllium seed, licorice root, slippery elm, flaxseed to name a few. So I took those as she recommended plus others as well, like adrenal tonics and bach flower remedies (red chestnut / white chestnut and rescue remedy etc…)

In two months time, I was completely off the 14 pills I was taking, and supposed to be taking for the rest of my life. I was now just on the herbs. I was getting sick less and feeling better never getting the surgery that I was told was imminent. I continued.

I drank that Swamp Tea for only 2 months, and after 5 - 6 months of treatment, I was well enough to get a job, and I did; working once again, full time; a few months later, I left my job, and went back to school full time. Living on loans etc… like many students do. My health continued to improve, and Bonnie had told me that I could eat whatever I want, that by no means should I stay away from all those foods I had done in the past. That I needed that nutrition. Boy it felt good to be with someone that really cared about “me”.

I only saw her a few times. Three to be exact; that’s what it took over a period of about 8 months to get into remission; although I was treated holistically for 2 years. She has changed my life around; from near death, to living almost as I did before this whole thing happened. Pre-August 23rd, 1992.

Today, (mid 2000’s when this was originally written) I’m not on any medications, I’m not even on any herbs. nothing, I eat whatever I want. Ice cream, salads, & spicy Thai food… I love it!!! There are a few exceptions, but aren’t there some to every rule? For example: I can tell if my body will allow me to have breakfast or not. If my stomach doesn’t feel right… I simply wait to eat or drink and I take it easy on carbonated beverages, I’m not as big on soda as I once was, and I’ll have beer on occasion but I’ll generally take a product like Phazyme when I do. I also like to use a digestive enzyme (which you can get on Amazon) for certain meals or if I’m questioning something).

I can still get relapses, so managing stress is essential, however it is bound to happen from time to time, although if and when it does, (If it’s a minor relapse I learned that I can go to any health food store, spend about $80/month on specific herbs and start to feel better. After 2 - 3 months I’m generally in full remission again. In the few more severe relapses… I just get in touch with Bonnie for more tea etc… and I’m well again in no time. Homeopathy not only saved my life, but the quality of it as well.

It feels good to get this off my chest. But it will feel a lot better to know I may help others who suffer as I did. And please… even if you don’t have colitis, (I can’t promise that holistic treatment will work for everyone or for every illness) but it is worth a try. It’s certainly better than the alternative! Be open to it; It can’t hurt, but oh the benefits…

Lastly, I have experienced zero side effects from all the holistic treatment I’ve received.

Health and happiness to everyone.

What I’ve been going through over the past year is the worst relapse since 1992! As just previously mentioned, when I tried going back on the herbs, for the first time, they didn’t work and when I called Bonnie she was unable to help me or send me the tea for a couple of reasons.

1. She’s a Dr. Legally she has to physically see me within a 3 year time span to treat me. She is in Florida, while I am stuck in North Carolina currently.

2. Physiologically my body is different now than it was 20 years ago. She may have new ways ways to treat my condition now vs what she did then.

To recap all my recent entries on my health condition:

I have been hospitalized numerous times. I have done everything Dr’s want me to do. I have taken every medication, but nothing has worked. Dr’s do not know what to do for me. My colitis is too aggressive and severe; how they typically treat colitis patients is ineffective on me.

One thing that has changed in the last 20 years in regards to treatment are things like humira & Remicade (the latter being chemo for ulcerative colitis). That’s what these Dr’s are pushing on me, but even if I had excellent insurance it costs over $6,000/month and without insurance: $14,000/month!

In the past year I’ve lost my home, my car & most of my belongings and colitis isn’t my only health concern. I have major back injuries as well as needing tens of thousands of dollars of dental work. I have been hospitalized multiple times for a dental abscess and a good friend of mine back in Florida “Mark” died from a dental abscess when the infection got into his bloodstream, to his chest and caused a heart attack. Additionally, my whole life I have had perfect blood pressure, but several times over the past year (including today) my bp is 155/105! Sure some of that is because of pain, but it’s worrisome. All the Prednisone I’m taking is certainly a factor. The last thing I need is a heart attack!

There was so much more to this sunset, but I had to sell my wide-angle lens to pay for meds and dr bills, so I couldn’t capture it in full or as cleanly as I would have liked :/

I’m the sort of person that puts others first. I like to help people and if you know me than you are familiar with my volunteer efforts and work with abused children, the homeless and the environment.

I took part in and filmed a meeting with members of the EWA (Everglades Wildlife Alliance).

I just want to get back to that, but in order to do so, I’m the one in need of help. I’ve exhausted every resource, I’ve sold everything I can and I’ve nothing left (literally).

If I want to survive, I need to see my holistic Dr.; it’s as plain and as simple as that. She will also get me off of all these dangerous medications and thanks to my friend Terri, and your shares / donations; I hopefully will be able to.

If you would share this page / my story on your social media accounts (Facebook / Instagram / Blog / Twitter…) and ask others to share it as well, It would mean a lot. The further the reach the better the odds of attaining the goal of seeing Dr. Bonnie Mackey.

Please Click here to help me out

Feel free to rip one of my pics from PB if you need to. If you want to ask me any questions, please do so here. Unfortunately I’m currently sick (cold / cough / bad sore throat) so I can’t talk on the phone) but I’ll respond to any messages promptly.

I apologize for the length, but I thank you all for reading and I hope you get to enjoy your weekend!

Story Continued: Latest update on my health.

Last updated December 23, 2018