Help Izzy Receive the Care They Need

Dear friends,

I’m writing on behalf of my partner, Izzy, who has had an incredibly difficult year healthwise. I want to add a disclaimer right off the bat that what I’ve written is long and it’s not even the full story. I’ve tried to take all of the relevant information and make it as concise as possible, but if you read on you will realize just how complex Izzy’s health history is, and how many details are truly important to keep in. Here goes:

If you have spent any amount of time with Izzy, you would likely know that they have been living with severe Crohn’s disease since the age of fourteen. What you may not know is that they’ve been struggling pretty intensely since coming off of chronic use of corticosteroids (specifically prednisone) since January 2023.

To give a bit of context, Izzy has been on corticosteroids (prednisone) for the better part of twenty years. Prednisone, immunosuppressive biologic drugs and antibiotics have been the only way to manage all the symptoms and complications of their illness for over half of their life. Having ileostomy surgery in 2018 allowed Izzy to start tapering off prednisone, and it took them five years to safely get off the drug. Since this January, the total absence of any corticosteroids in their system has been devastating to all of the health that they regained in the past couple of years post-surgery.

What’s happened this year can only be described as a domino effect of poor health. Izzy’s prolonged corticosteroid use has depleted their adrenal glands, and since there is no longer any pharmaceutical cortisol in their body, Izzy’s cortisol levels are extremely low (like, half of what a healthy person’s should be). Cortisol is the main hormone our bodies use to recover from stress and regulate back to homeostasis. This cortisol insufficiency has made it very difficult for Izzy to stay well. Crohn’s flare-ups, extreme fatigue, weakness, dangerously low blood pressure and brain fog have been leaving them bedridden for days each month, but things got even worse at the end of August. Izzy contracted COVID-19 during the late summer surge. This virus is devastating enough for anyone, let alone an immunocompromised person, but since Izzy’s cortisol levels are so low, it wreaked havoc on their body. Now, months later, they are still recovering, and their stomach is in pretty bad shape. We suspected as much, since they were throwing up blood when the virus was at its strongest, but a recent endoscopy confirmed that they now have severe gastropathy—their stomach is bleeding and has open wounds that haven’t been able to heal. The scope also showed that there is ulceration throughout their small intestines (aka a confirmed Crohn’s flare-up). This avalanche of health issues has been devastating on top of an already turbulent year that involved a lot of change, grief, and a move to Detroit. If you haven’t seen Izzy in a while, this is why.

What’s worse is that Izzy’s regular doctors have suggested that they take corticosteroids again as a band-aid treatment. Taking more steroids would simply perpetuate the vicious cycle of reliance, depleted adrenals, cortisol insufficiency, and an even weaker immune system. If Izzy continues to rely on corticosteroids, they will continue to suffer, and who knows what will happen the next time a virus enters their system.

But! There is hope! :)

Instead of taking more steroids, we decided to visit the Goldberg Tener Clinic in Atlanta for a second opinion.

Drs. Goldberg & Tener, board-certified doctors with over fifty years of experience between them, have a remarkable track record for supporting patients with severe autoimmune diseases, and have helped thousands of people go into remission and in some cases, reverse a lot of severe damage. Their treatment process involves an individualized health protocol that is not just a band-aid—it doesn’t just treat symptoms. It slowly supports the body back into health through nutrition and lifestyle shifts. Izzy really resonates with this approach, because Izzy actually studied nutrition science in college and has seen the benefits of nutritional support firsthand and typically supports themself through nutrition anyway. Furthermore, no additional prescription medicine is involved in Dr. Goldberg & Dr. Tener’s protocol, and barely any supplements, which is very appealing for someone who has experienced extensive medical trauma and has tried nearly every possible treatment on the market.

These doctors have been on Izzy’s radar for quite some time. Izzy first met Dr. Goldberg and Dr. Tener in 2017, when Izzy was really suffering from living with their J-pouch. (For more context: Izzy received an emergency colectomy at fifteen and an internal J-pouch was placed—a section of stapled-together small intestine that is supposed to function like a large intestine. Izzy refers to their J-pouch as a cesspool frankenstein organ from hell that took years off of their life. This thing became immediately inflamed and infected and they lived with it for 15 years, continuously taking antibiotics and steroids to survive.) In 2017, Drs. Goldberg and Tener were the first doctors to be truly honest with them about the trajectory of living with their J-pouch. The doctors told Izzy that the only way to improve their quality of life and to get off steroids and antibiotics for good would be to have the J-pouch removed and replaced with a permanent ileostomy. Since then, Izzy had the surgery and has been able to get off of those dangerous drugs and has been able to reverse the osteoporosis that the prednisone had caused.

So, this year, right after their scopes in mid-November, we took a trip down to Atlanta to visit the Goldberg Tener Clinic again, hoping that working with them would be an option now that Izzy has an ileostomy and is off corticosteroids & antibiotics. After a 4-hour interview, consultation and physical exam, where they just patiently listened to Izzy’s full story (let me tell you: this kind of care, attention to detail and sheer amount of face time with a doctor never happens), they feel confident that they can help support Izzy’s adrenal function and get them to a point where Izzy will be able to recover and feel better. The only issue is that they aren’t covered by insurance, so Izzy has to pay out of pocket.

This first round of tests and appointments, which have already been paid for on credit, came in at $5400. We expect to spend at least another $3000-$5000 on follow up tests and appointments. Izzy will have to follow the doctors’ protocol for at least 6-9 months, even up to a year since their case is so severe, but it’s worth it. The difference between Izzy’s past attempts at recovery through nutrition and this protocol is that Izzy won’t be alone. They will have access to these doctors everyday, and these doctors will be adjusting their protocol every step of the way as new information is learned through extensive testing and trial & error. This care will set Izzy up for the rest of their life. Having their life back is absolutely worth every penny, but because Izzy is on a very small, fixed monthly income with their disability payments, it will be impossible for them to pay for treatment without community support.

We’re asking for $20,000:

We are deeply excited and motivated by the assurance that finally, after 20+ years, Izzy will be getting the quality and style of care that they’ve always needed. It has been a rough, rough road. Since the age of thirteen, Izzy hasn’t experienced a single day in good health. By the age of fourteen they had been diagnosed with Graves disease, ulcerative colitis and Crohn’s disease. After several invasive and traumatic surgeries and medical treatments, they don’t have a functioning thyroid and they only have about 25% of their intestines left. For a long time, prednisone was the only way Izzy was able to survive. We are thrilled to finally work with doctors who want to break the cycle of covering up symptoms and actually focus on the root cause of Izzy’s complicated, extensive health history.

It’s really, really hard for Izzy to ask for help, so I’m asking for them. If you’re reading this, you know how special they are. If you’ve heard their music, if you’ve tasted the food they’ve grown, if you’ve ever heard their perfect, infectious laugh or witnessed their incredible generosity and kindness, or eaten their delicious gluten-free pancakes, then you get it. Some big plans are in the works, including their next full-length album that they’ve been too sick to record, and a print publication featuring artists and writers with Inflammatory Bowel Disease. I’m in awe of Izzy everyday for focusing on the future, for working towards something big and special, for seeking new treatments and better outcomes despite feeling so ill. They have been really sick for a really long time, and now they finally have a chance at getting better. Lots of good is coming. They just need your help getting there. Every little bit counts. Thanks in advance for your support. We can’t do it without you.

With love and gratitude,

Lyssie, Izzy & Jö