Fighting Chronic Colitis & Its Complications

UPDATED:  2021


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 A THOUSAND 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, THANK YOU 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 ULCERATIVE COLITIS AND LONG TERM PREDNISONE USE, THIS IS THE RESULT OF THAT.  

SITUATIONS LIKE YOU WILL SEE IN THIS VIDEO TYPICALLY HAPPEN TO ME ABOUT TWICE 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 OCCURANCES.  THERE IS A FULL WRITTEN ENTRY IN THE 'UPDATE' SECTION ON THIS EVENT.  IT HAPPENED IN EARLY SEPTEMBER, 2020.




THE LAST VIDEO BEFORE WE GET TO THE MAIN 'STORY'.  JUST A QUICKIE ON ONE OF THE SIDE EFFECTS THE BIOLOGIC (CHEMO-TYPE) DRUG I WAS ON TO TRY AND TREAT MY ULCERATIVE COLITIS.


Hi.

It says: "Organized by: Jaye Eryk".  That is not actually true.  This fundraiser was organized by my friend Terri, who lost a family member to this horrible disease and knows how bad it can get, 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 so that I can make changes as needed and say thank you's etc... 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 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 originally 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 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!  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 if not discovered and treated immediately and the symptoms of it are indiscernible from the disease itself.  Additionally, severe ulcerative colitis 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 GI 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 $319 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 etc... & even chemo) his body is literally shutting down.   Although you can live a long life with this disease (in mild to moderate cases) if the medications do not work and they're not a candidate for surgery, Ulcerative Colitis is a death sentence.  Jaye has ended the year + long chemotherapy for this condition because it too, hasn't worked, and it's taking quite a toll on him, leaving him with extreme dizziness, nausea, fingers that won't bend and that he can't use most of the day (see video above) he was so crippled by it that he could barely make it to the bathroom in time when attacks occur (and sometimes didn'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 he 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 to continue working, 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 and so much blood that standing was nearly impossible, and 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 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 three years!   Every attempt to ween off at home has landed him back in the hospital.  On multiple occasions with C-diff as well. 

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 osteoporosis of the spine which has led to many broken vertebrae and other major back injuries also caused by Prednisone use.

In 2021, Jaye found out that between ulcerative colitis and his former Prednisone use, they have both been linked to new diagnoses of Chronic Fatigue Syndrome and Hyperthyroidism (under-active thyroid).

Knowing that the ulcerative 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 ulcerative colitis as well as complicates testing such as colonoscopies and potential surgeries).

Additionally, Jaye has severe injuries to his back above and beyond what I just recently mentioned.  8 bulging discs, many of which frequently herniate (or rupture) leaking 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, spondylosis, damage to his cervical vertebrae and most recently, Jaye has been diagnosed with osteoporosis as a result of excessive Prednisone use to treat his ulcerative colitis.  Throughout 2020 and into 2021, Jaye has 6 broken vertebrae and a wedge fracture as well as scoliosis.

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 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.

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!  Even at church, school, synogogue, 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 4+ 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 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 2 of the visits would be by telephone to save money, but still a charged visit.  Visits may include blood work, 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 ulcerative colitis at its worst while also dealing with both extreme blood loss as well as blood clots in both of 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.  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.


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Organizer

Jaye Eryk 
Organizer
Jacksonville, NC
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