Fighting Chronic Pancolitis & Its Complications

UPDATED: 2022

A FRIEND OF MINE JUST MADE THIS VIDEO ON MY BEHALF, AND ASKED ME TO POST IT ON MY GOFUNDME PAGE. HE/SHE WISHES TO REMAIN ANONYMOUS.  I AM ABSOLUTELY HONORED AND HUMBLED TO DO SO.

I TRULY HAVE SOME OF THE MOST AMAZING PEOPLE IN MY LIFE AND WHAT A PLEASURE AND PRIVILAGE IT IS TO KNOW THEM.

I DON'T HAVE ANY FRIENDS WITHIN 800+ MILES OF ME RIGHT NOW, AND THAT IS TOUGH. EVERYTHING I GO THROUGH, I GO THROUGH ALONE.

THANK YOU FOR THINKING OF ME. THANK YOU FOR THE MEANINGFUL VIDEO, AND THANK YOU FOR YOUR FRIENDSHIP.

TO EVERYONE ELSE: THANK YOU FOR BEING HERE, THANK YOU FOR WATCHING, AND THANK YOU VERY MUCH FOR CARING.

THESE VIDEO'S MAY BE A TOUGH WATCH, NOT DUE TO CONTENT PER SE', BUT THEY MAY BE EMOTIONALLY TRAUMATIC.  I HAVE SEVERE BACK INJURIES EXACERBATED BY EXTREME INFLAMMATION CAUSED BY ULCERATIVE COLITIS (PANCOLITIS) AND LONG TERM PREDNISONE USE, THAT GI DR'S KEPT SHOVING DOWN MY THROAT.

THIS IS THE RESULT OF THAT.  

SITUATIONS LIKE YOU WILL SEE IN THIS VIDEO TYPICALLY HAPPEN TO ME A FEW TIMES A YEAR AND LAST ANYWHERE FROM 6 HOURS TO A DAY AND A HALF. THIS LASTED OVER 3 DAYS.  IN 2020, I HAD 9 OR 10 SUCH OCCURRENCES. EACH YEAR SINCE, THINGS HAVE INCREMENTALLY WORSENED. THERE IS A FULL WRITTEN ENTRY IN THE 'UPDATE' SECTION ON THIS PARTICULAR EVENT. IT HAPPENED IN EARLY SEPTEMBER, 2020.

THE LAST VIDEO BEFORE WE GET TO THE MAIN 'STORY'. JUST A QUICKIE ON ONE OF THE MANY SIDE EFFECTS THE BIOLOGICS (CHEMO-TYPE) MEDS I WAS ON TO TRY AND TREAT MY PANCOLITIS. SEVERE JOINT PAIN CAUSING AN INABILITY TO BEND MY FINGERS.

Hi.

It says: "Organized by: Jaye Eryk". That is not actually true. This fundraiser was organized by my friend Terri, who lost a close family member to this horrible "invisible" disease and knows intimately the lethality of it, so she put this together on my behalf because I was uncomfortable asking for help myself. I've always had this issue (asking for help (in all areas of my life)) and now that Terri has officially put me in charge of this account; I can make changes as needed and say thank you's etc... to all of you wonderfully and selfless people.

I am conflicted. I need the help, but I have a very difficult time sitting here asking for it.

I just want to keep the page active, and updated.

I'm going to try and update, but keep Terri's original page up (the main story) as she wrote it and update the photo's as well. Actually, I'm going to write an addendum at the end which is relevant as to the purpose of this page, so if you're familiar with my story, please scroll down to the end.

Lastly, I want to personally thank every single person that has either donated, shared, commented (and/or messaged, called, texted me (for those who know me personally)). Words of encouragement truly are very meaningful to me. Especially when it comes to work. Not being able to work breaks my heart, and when I get messages mindful of that and supportive of my desire to one day get back behind the camera, to help others and give back... I have no life anymore, and that is the only thing that moves me forward, so thank you.

Here is the original story of my life with this disease (updated) as written by my friend Terri, thank you for your help.

My friend: Jaye Eryk ("Jay Bird") is a writer / filmmaker and photographer whose dedicated his life to help the homeless, abused children and the environment is currently fighting for his life. He has been battling Ulcerative Colitis since August, 23, 1992.

Many people may not consider Ulcerative Colitis / IBD & Crohn's Disease to be as serious and/or life threatening as they are. In severe enough cases such as Jaye's; it can potentially lead to colon cancer, sepsis and even death! He technically has PANCOLITIS (which is the rarest & most severe form of ulcerative colitis).

C-diff is also common with this disease and Jaye has been hospitalized three times for that. C-diff alone kills 30,000 people a year within 30 days of contracting it if not discovered and treated immediately and the symptoms of it are indiscernible from the disease itself.

Additionally, pancolitis can cause other major health related issues with which Jaye is also suffering a great deal of. If you are unfamiliar with ulcerative colitis; it is (in severe cases) dozens to thousands of bleeding ulcerations (open sores) in the colon/large intestine. You get very nauseous and dizzy, vomiting & fever are not uncommon. You bleed internally and then bleed externally. The cramping that you feel is absolutely excruciating and going to the bathroom can be so painful (think of labor pain type contractions in the gut) that you often whimper, cry, moan and can even pass out. Someone very close to me died from uc and I suffer with it as well.

Jaye is a dear friend and his case is extremely serious, the worst I've seen. I know that Jaye isn't the sort of person to ask for help, so I set up this Gofundme for him because I don't want to lose him too.

The disease has left him struggling for his life; leaving him not only physically (chronic pain) & mentally tormented (major depression, anxiety, stress) but morally & financially bankrupt.

Over the past few years he's lost his home, his car and most of his belongings having to sell off his bedroom and other furniture, jewelry, and even camera lenses required to earn an income when he's well (just so he could pay for Gastroenterology visits, hospitalizations and medicines as he had no health insurance). In fact, this continued well into the creation of this GFM page; the amount you see listed (what we have raised so far) isn't what Jaye currently has available. Because we were unable to raise the funds right away, it was imperative that Jaye see Gastroenterologists or he would not have survived long enough to meet the goal of this page. Those GI visits cost $349 EACH and that didn't include his medications, lab work & procedures which were many (and expensive). There was no choice but to use these funds, plus additional money from his mom to pay those bills. If that didn't happen, we wouldn't be here today.

Unable to work and dealing with multiple and lengthy hospitalizations one after the other over the past few years with none of the medications that Dr's have tried working; (Asacol, Apriso, Lialda, Humira, Stelara, Entyvio, Xeljanz etc...) his body is literally shutting down. Although you can live a long life with this disease (in mild to moderate cases) but if the medications do not work and they're not a candidate for surgery, Pancolitis is a death sentence. It's not a matter of "if", but "when". Jaye has ended the years + long chemotherapy-type injections for this condition because they too haven't worked. The side effects alone have taken a brutal toll on him, leaving him with extreme dizziness, nausea, vertigo, confusion, slurred speech, fingers that won't bend and that he can't use most of the day (see video above) he was so crippled that he can barely make it to the bathroom in time when attacks occur (and sometimes doesn't).

-A quick backstory: In 1998, Jaye came across a holistic Dr. (which he was not a believer in at the time) but it was his moms idea and so he listened to her; to his surprise it miraculously saved his life from this disease that at the time nearly killed him. All his internal organs were failing. His holistic Dr. after just 4 visits got him into a near 17 year remission!!! It was during this time that Jaye completed his college education and began his career in film/tv.

That was until November of 2015 when he started getting sick again. Living paycheck to paycheck (as many of us do) Jaye fought through the discomfort (running to the bathroom (15 - 20) times a day) bleeding profusely and with severe pain, he pushed through it to continue working. How? I have no idea! But by June of 2016 he was so sick that he could no longer care for himself and he had no family or anyone to help him. Defeated, he made the decision to take a break and fly to North Carolina from South Florida to be with family for a couple of weeks, hoping that rest and care would ease the symptoms a bit, allowing him to go back to Florida and back to work. Only, things continued to worsen for him and he was not able to leave. He lost 30 pounds in 2 months and so much blood that standing was nearly impossible. By September he was immediately admitted to the hospital.

He was hospitalized in Florida for a few days just prior to leaving, and now again in North Carolina. Without being able to work or get well, Jaye couldn't get back to Florida. He had very little in savings and was paying for a residence that he wasn't living in and he's not only lost his home; but a few months later his car as well. Everything the Dr's tried, failed. his body resistant to every medication. Jaye has done everything he could to pay for all these expenses on his own; he sold off what few belongings he had left (since his storage unit was auctioned off, he lost everything else) now completely depleted of not just his finances, but his assets as well.

Unfortunately, because of all he's been through, he's financially unable to go see his Dr. back in South Florida, which (at this point) is his only saving grace. Either her or someone like her. He listened to every local Doctor. He did what they asked of him, but his body continues to reject the medicines, and he's been on 40 - 60mg of Prednisone daily (and up to 250mg/day in the hospital) for 3 years going on 4! Prednisone is a very dangerous (short term medication). Every attempt to ween off at home has landed him back in the hospital. On multiple occasions with C-diff as well. In total, Jaye has been on high dose Prednisone for 10 years!

The Prednisone was the only thing keeping Jaye alive and it's such a dangerous medication, that he's suffering greatly with many of its nasty side effects including, but not limited to severe joint/muscular pain, blurred vision, insomnia, dizziness, tiredness, depression, headaches, chronic fatigue and hurts the bodies ability to fight off infection. Combine that with an auto-immune disease and Jaye is frequently sick and struggles to ever get well! In fact, Jaye had been complaining of chronic and worsening knee pain; a recent MRI revealed Avascular Necrosis in several areas (Rotting bones caused by Prednisone). He was also diagnosed with severe osteoporosis of the spine (and other areas such as his hands, which has led to many broken vertebrae and other major back injuries also caused by Prednisone use.

In 2021, Jaye found out that between pancolitis and his former Prednisone use, they have both been linked to new diagnoses of Chronic Fatigue Syndrome, Hyperthyroidism (under-active thyroid) worsening eociniphilic asthma among other things.

Knowing that the colitis would worsen, he chose to stop the Prednisone since walking without pain has now become impossible and his lethargy, loss of memory and concentration is so bad that he simply can't function as he once did.

To complicate matters further, in August 2018 after 5 months of non-stop coughing, Jaye was just diagnosed with Pulmonary Embolisms (Blood Clots in both of his lungs and is now on blood thinners which is exacerbating his bleeding condition with pancolitis as well as complicates testing such as colonoscopies, bronchoscopies and potential surgeries).

Additionally, Jaye has severe injuries to his back above and beyond what I just recently mentioned. 9 bulging discs, plus a herniated disc of which leaks spinal fluid onto his nerves (which is pain that I can't even imagine!) He also suffers with spinal stenosis, degenerative arthritis of the spine, ankylosing spondylitis, damage to his cervical vertebrae, both suprascapular nerves and most recently, Jaye has been diagnosed with severe osteoporosis as a result of excessive Prednisone use to treat his colitis. Throughout 2020 and into present day, Jaye has broken over 20 vertebrae and a wedge fracture (mostly by simply sneezing or coughing).

When he can work; Jaye donates his time & talent to many non-profit organizations, he helps others, even creating TV series to help the environment, the homeless and abused children, but has been unable to pursue that dream because of his failing health. Jaye knows he needs assistance, but has a hard time asking for it. He didn't want to start a GoFundMe account on his own, so I felt compelled to do one for him and to provide you all with as much information as I can.

Aside from financial aid (which of course is why we're here) if you, or someone you know has any methods to help this page go viral and outside of our limited social circles, it would be gratefully & humbly appreciated! Fiverr / Social marketers etc... Be sure to read the updates for things Jaye may have already tried. I know he attempts to update frequently with pictures and video's. If you really want the full scope of how his life has gone since the creation of this page, please read his many updates or reach out to him personally, though I know it's often difficult for him to talk and/or type/write.

If you are able to donate, THANK YOU! That's awesome!!! If not, that's perfectly fine too, though I ask that everyone at least help by SHARING this page on your social media accounts (Facebook, blog, Twitter, Instagram etc...) and ask others (friends and family and coworkers) to share it on theirs... it's so important! Jaye deserves the help. Even at church, school, synagogue, and not just once, but repeatedly so that it is seen. Talk about it with others, people need to see this page and read his story. The more eyes we can get on here, the better the chances of our campaign being a success! I know that together we can save a person's life! A little care can go a long way.

Anyone with Ulcerative Colitis is already at a higher risk than most for colon cancer. With such severe inflammation in Jaye's colon and large intestine especially over the course of 6+ years, that risk goes up exponentially!!!

Please help in any way that you can.

~Namasté

To breakdown the $10,000 (which is the starting goal, hopefully we can surpass it).

The funds do NOT include any of Jaye's losses (Home, car, belongings etc...) it is to literally save his life addressing this immediate and dire health concern. Ulcerative Colitis. Once he can get that into remission, I pray that Jaye can slowly get his other health issues taken care of and soon after that, back on his feet!

This includes 3 or 4 (hopefully more) visits to see his holistic Dr. back in Florida so he can be treated. As she is a medical Dr., Legally she must physically 'see' him within a 3 year span to treat him. She'll have to see Jay at least once, likely twice, and we're hoping that future visits would be by telehealth to save money, but it would still be a charged visit. Visits may include blood work, urine samples & procedures possibly as well,

This is where Jaye would be going and whom he would be seeing.

www.mackeyhealth.com

The donations are going directly toward his visits, his treatments (including any and all updated lab work required) and the travel involved. Medical emergencies caused Jaye to dip into this account, for if he hadn't, he would not have survived to current day. His daily battles are ferocious!

A second option would be for Jaye to be seen by someone with similar credentials which is being researched.

Please keep in mind that GoFundMe does take a percentage as well. Up to 2021, it was nearly 10%

For more details and information in regards to what Jay has gone through recently, many updates will be and have been posted to this page. Jaye usually writes them himself.

(From Spring to Winter of 2020 - Jay has lost over 70lbs and an additional 10lbs leading into 2021) He is currently undergoing several iron transfusions (almost monthly, due to extreme blood loss.

The photo below is Jaye dealing with pancolitis at its worst while also dealing with both extreme blood loss as well as blood clots in his lungs. Jaye also has eosinophilic asthma, so just breathing normally is very difficult and painful for him. Covid, has not made his life any easier, that's for sure. He struggles to breathe without a mask, but is now and perhaps permanently forced to wear one wherever he goes. If he were to contract that virus, Jaye's chances of survival are just about zero. He has to tread very carefully these days, as do we all.

Please wear your masks, remember; it's not just for your safety.

ADDENDUM:

Hi, it's Jaye. Thank you for reading. I haven't been updating (well, I have, but on other platforms).

For those who don't want to read the updates (I don't blame you, it's a lot!) I thought I'd mention a few things here.

1. The reason I stopped accepting donations is because a few years ago, I finally (after several attempts dating back to the spring of 1996, got Medicaid & disability). I was explicitly told that I could have no income & that all my accounts were being monitored. If I kept this open, I'd lose the disability, so I immediately stopped accepting donations.

2. Regarding disability; I was expected to live on a paltry near $500/month. My medical expenses are $350 to $400+ a month depending on how many Dr. visits there were and how many meds I had to buy. I couldn't have my cake and eat it too as they say.

3. Not all the funds were used on my GI appointments & meds, but gfm doesn't allow you to keep the funds online. I was forced to put the funds in my bank account. Between that and disability, I was pinching every penny, skipping meals etc... because I NEED to see a holistic Dr. Also, I need tens of thousands of dollars of dental work (surgeries) which Medicaid doesn't cover. I thought I was being fiscally responsible. I'm a crusader of truth, and my promise for this page is extremely important to me. YOU are extremely important to me. The goal is the goal and I put every cent aside. All I want is to get some semblance of my health back.

4. I received a letter in early 2023 from social security saying that I had too much money in my bank account as a result of this page, and that if I didn't spend it by "xyz" date, I would lose my disability followed by Medicaid.

Medically things have taken a turn for the worse. Travel was impossible, I was practically living in the hospital. I was being stabbed with needles multiple times a week, connected to tubes, tubes down my throat; I was coughing up blood... and to be honest, I'm currently coughing up blood having been sick for a couple of weeks ago. Looks like another bronchoscopy may be needed. I also just had an endoscopy, and still getting iron infusions regularly.

6. Disability said I can buy whatever I want. I could buy a bicycle or a $2,000 Gucci belt, but I couldn't withdraw or transfer the funds. I don't know why, but that's illegal. Long story short; I didn't want to frivolously spend. I need this money to get well, so lost disability and soon to come, Medicaid.

I couldn't reopen this crowdfund page because when it's time to reapply for disability, I can't have income or money in my bank account. I was between a rock and a hard place. The system has failed me completely. They don't want you to get well, they did everything in their power to keep me sick by constantly denying major surgeries I need or tests done etc... They make you take every drug invented and wait for them to not work before even considering covering procedures and surgeries.

There is no care in healthcare anymore, and this is definitely the wrong country to be sick in.

Unaliving myself has been a constant thought the last couple of years; I dream of it, but I can't do that to my immediate family, I'm already a burden on them and we recently had a close death in the family. I can't do it to you guys either because I made you a promise, and I keep my promises.

I'm not a liar, a cheat or a deceiver. I'm open and honest with everyone. Uncommon traits these days, but I am.

Since the last update (which I should've read before updating this addendum because I forgot what I wrote). I've broken about 10 more vertebrae, diagnosed with fibromyalgia, had several minor surgeries due to cancer scares. Been scoped in I think every hole (had a couple of holes drilled for good measure).

I'm severely allergic to wasps, and in the summer of 2023, I was swarmed by them getting stung 13x in a few seconds. Had to call 911 and stab myself with my epi-pens for the first time. Panicking while your throat closes and you're shaking violently while having an asthma attack wasn't fun.

I could go on and on, but my promise to you is to at least survive long enough to complete the purpose of this page. (Hopefully longer). No matter the physical pain and mental anguish. No matter the blood loss or inability to walk. I'm not even doing it for me at this point; I'm doing it for you, because I owe you and I'm a man of my word. To my dying breath... a promise is a promise (and that might not mean much to some people) but it means a whole hell of a lot to me.

Recent photo after a torturous and sadistically agonizing nerve conduction study and EMG procedure. Over an hour of screaming and non-stop crying in pain while dozens of nerves get electrocuted one by one and repeatedly more aggressive as it went on. I'm not doing this again! I was literally traumatized for days! Nuh uh... No Freaking Way!!!

And now you're basically caught up. It's 8am, and I haven't slept yet because I needed to do this for you guys and it took all night between pancolitis attacks and spasmodic coughing episodes, but you're all worth every minute.