6 years!

I celebrated my immune system's 6th birthday on the 26th! I finished with the trial last year, so no followup in Chicago this time. Dr. Burt wouldn't use the word cure when I last saw him, but did say that he doesn't expect me to have to worry about Crohn's again. That sounds like a lot of words for "cure," to me. I'm still symptom and medication free and, considering how much better the rest of my health has gotten over the last year, I'm not concerned about pursuing any testing.

I read one of the most empowering books I've ever read a few months ago called You are the Placebo, by Dr. Joe Dispenza, which helped me to understand and explore an aspect of my stem cell transplant that I tried to write about after my two year followup but I couldn't figure out. The book explores the placebo effect and how your past memories, states of being, thoughts, feelings, attitudes, beliefs, and perceptions interrelate to influence your health.

These ideas helped me recognized that, even during the worst parts of Crohn's during my teenage years, a small part of me maintained the belief that I would eventually be healthy, and not too far along into my life. I of course had no idea how this might happen at the time. It felt as if there was a block on my mind that kept me from imagining too far into my future. I remember daydreaming and finding it believable that I could become healthy and figure out how to trick someone into entering a relationship with me, which would give me the opportunity to explore the intimacy and love I was lacking (which happened). I didn't consciously imagine a lifetime of suffering, though part of me implicitly knew that's what was in store if something didn't come along to heal me, as is customary with an incurable, chronic illness. Amidst my daydreams and fantasies of my own demise that regularly accompanied dissociation from my pain and misery in hopes that something would remove me from that suffering, the blockage of imagining a prolonged, suffering-filled existence too far into the future allowed a more open space for me to imagine the possibility of becoming healthy. While I still have no idea how reality actually works, it is completely clear to me now that things are more likely to happen if you believe they are possible and things are less likely to happen if you believe they're impossible. These beliefs would not have taken root had I not sufficiently entertained them.

My belief in this stem cell transplant was amplified by seeing the promising results of the trials. It seemed too good to be true. I got as carried away as I could with the idea of a stem cell transplant fully restoring my health. I was all in. The two most likely outcomes, in my mind, were achieving a very high level of health or dying, both of which, at the time, were preferable to my dance with Crohn's. Still having a strong preference between health and death, I spent much more time imagining what I might get to do when I became healthy. The death option didn't evoke further potential imagining because I didn't understand death yet, which spared my attention for more productive, life-affirming uses.

Despite being allergic to one of the chemotherapies, I had pretty much an ideal transplant. Other patients I talked with generally didn't tolerate the chemo as well as I did and had other issues pop up. I fully believed the stem cell transplant would make it so Crohn's wouldn't be a problem for me again. Dr. Burt was even updating to a new protocol with the intent of getting even longer remission for patients which only fueled my fantasy of being fully healthy and never having to deal with Crohn's again. The fantasy, as I best understand it, was ultimately comprised of the past memories, thoughts, feelings, states of being, attitudes, beliefs, and perceptions that Dispenza explores. My memories of childhood before Crohn's helped me to recall that being healthy is possible in my life. These memories connected me with thoughts about living life as a healthy person, and what it might feel like. Through these thoughts and feelings my imagination had the capacity to take me beyond my typical state of being, which was rooted in fear and despair, and entertain a more peaceful, healed existence. While it feels impossible to quantify, I am left to suppose that these aspects planted and nurtured the tiny seeds that would grow quietly in parts of me that blossomed into an attitude of perseverance, that things would work out, which came with the optimistic belief that I would be healthy. Having a semblance of connection with this belief, seemingly enough to keep it functional, let me be open to perceiving the ways that life could orchestrate such a grand recovery for me if I was able to be open to it and work towards it.

Having this knowledge of how the mind works, and my personal encounters with its dynamics, I am left being very cautious about how to optimally view my health. How would I consciously balance a grim prognosis of illness, and what we've learned about health and medicine, with the knowledge that I am likely to be healthier with a mindset which involves not believing that a terminal diagnosis means I will likely be unhealthy and die? How much do I choose to believe in myself versus a very real seeming medical diagnosis, with potentially millions, billions, or trillions of dollars of industry and research behind it? Given my experience with a previous doctor saying that I don't need a stem cell transplant and that my Crohn's was all in my head, and my experience with mainstream mental healthcare proposing ideas that were off the mark of the roots of my problems, I'm uncomfortably familiar with the need to reject ideas that don't ring true or seem like they will serve me well, even if they come from an authority figure with years of knowledge and experience. If I crumbled to my doctor and went with his assertion that I didn't need a stem cell transplant and it was all in my head, I would not be as healthy as I am today. If I never saw through the wild goose chase the Western approach to mental health sent me on, I would not have secured my scant grip on reality, and probably be medicated, thrown into a psychiatric hospital, or dead.

The farthest I've figured to take this so far is to hold conflicting viewpoints as holding essential elements of truth. I might be afflicted with an illness that comes with a set of constraints that I have to honor to restore my health, but I would temper any pessimism or fears of fatality, and rely more heavily on nurturing empowering, optimistic beliefs. Just because there "isn't a cure" for something yet doesn't mean it's a good idea to assume you won't be cured. There is a certain degree of value to installing productive, life-affirming beliefs regardless of how true or believable they may seem at the time. This flirts with questioning the validity of science and medicine, which can be terrifying to confront, especially from a vulnerable-feeling position of illness, but it's also freeing if you go through the process. Questioning what ideas you accept as reality and the beliefs you permit to function in your subconscious is a birthplace for harnessing power and control over your health. No matter how impressive their lab coat is or their credentials are, be wary of buying ideas from anyone who seems overly certain of how reality actually works, especially when the ideas are unfavorable to your life. There's no substitute in the world for your intuition based on direct lived experience.

Where I would be without having spent a period of life physically healthy for comparison. Where would I be if the rest of my mental structure was steering me away from health because I lacked appropriate mental inputs for believing I could achieve health? I'm not sure yet what advice I would give to another person about all of this, but I know what I'd do. If I were to get sick, you would find me stacking the deck in my favor; leveraging my mind as much as possible, imagining pathways that lead me to health, and taking every step along those pathways I could to strengthen my body and supply what it needs to heal. I now view medical professionals as people who are well intentioned, hopefully will be helpful, potentially incompetent and having blindspots, and ultimately capable of helping me figure out my health, even if I have to do work on my own. I am ultimately the one responsible for wringing out all of the life I have here.

I'm still in the process of exploring and understanding how my trauma relates to my experience with illness and health. I can't help but notice parallels between immune system and psyche. Something compelled my immune system to identify my body as a threat and attack it. In a similar way, my childhood trauma installed negative beliefs about myself and the world that would generate negative thoughts and feelings, unhelpfully attacking my mind (hello, inner critic!), causing more damage the longer this went unchecked. This also left me susceptible to other threats (unhealthy relationships, tolerating unhealthy behavior, abandoning my own needs, taking responsibility for others' emotions, to name a few), in a psychoemotionally weakened, boundary-broken state. In a similar way, my body was more prone to getting sick and other ailments due to an immune system preoccupied with attacking itself, on top of the disruption from steroids and immunosuppressants. Destroying my immune system with chemo to reset it did the trick for my immune system, but I haven't had the same kind of psychoemotional reset. I think psychedelics hold promise for achieving something like this, which I can hopefully speak to from personal experience in the near future. In lieu of that, a guerrilla warfare style of healing has moved me along my path to mental health. Meditation, yoga, therapy, writing, dance, intimate relationships, nutrition, exercise, marijuana, studying trauma, psychology, spirituality, and other tools have provided guidance for identifying and uninstalling the negative beliefs that still haunt me from the past. The good news is, there's no shortage of replacement ideas and beliefs to try on to see if they will help me get to where I'm interested in taking my health and my life.

I intend to explore and share more as I glean more understanding of these disorienting experiences that I can put into (hopefully) coherent words. I know there's still much more to uncover, and I'm extremely grateful to have the physical and mental health to put these puzzle pieces together.

5 Year Followup

Finally getting around to posting an update. I had my fifth and final followup in August, and celebrated my immune system's 5th birthday. The followup went really well. Everything is still fine. No signs of Crohn's, and I'm not on any medication for it. I hadn't thought to use my right to opt out of the parts of the trial that I didn't want to do until the day before my colonoscopy was scheduled when, during a moment of clarity, I thought, "why the hell am I going to get a colonoscopy when I don't want or need to?" So I skipped it. I had already done the abdominal MRI by then, so they had some data, and I got to enjoy my time (and eating) in Chicago more.

After reflecting, now that the I'm finished with the trial, I realized this treatment gave me a new problem. My expectations for my health drastically increased, and I now take it for granted at times. Which is a much better problem than expecting to be sick indefinitely, so I'll happily take it. Before discovering that a stem cell transplant was an option, my prognosis was grim, so I had penciled in suffering and misery pretty much indefinitely for my future. A life of sitting on the toilet, playing videogames, and going to the doctor certainly wasn't what I dreamed of, but seemed most likely. I am extremely fortunate that all of the many pieces came together for this and to be so healthy today. It is still weird to think about the gloom of my diagnosis when I was 10 and that I escaped what's usually a life sentence. I am humbled and so fortunate that the world conspired for me to have a second chance at life without this horrible disease.

I haven't healed from all of the damage Crohn's inflicted, but regaining my physical health put me in a position to discover the psychological trauma that was lingering. It managed to go unnoticed by any of my healthcare providers over the years, including a psychiatrist and therapist. It turns out that emotional neglect/abuse and years of a severe chronic illness that left me disabled gave me a lot of wounds to heal, and many doctors are unprepared to help. I wonder how much less severe my case would have been if I had a good therapist alongside my physical treatment. Given the incompetence (which I don't mean insultingly anymore) I encountered with my physical and mental health issues, I have to urge you to take charge of your own care. I'm afraid to think of the condition I would be in right now if I surrendered to what my doctors and therapists had to offer. Good intentions do not equal good care.

For other patients reading this, I finally started to get a handle on what I was experiencing with the trauma model, and I hope you find it valuable if you need it. The framework of the DSM and its diagnoses didn't give me a detailed enough picture to make real progress. I "had" depression, anxiety, ADHD, suicidal thoughts, no self-esteem and the rest of that wonderful package, and the cause was a lifetime of unprocessed emotions and pain. At this point, I honestly believe my trauma caused and/or worsened my Crohn's as a way of trying to save me from suffering (yes, that's as morbid as it sounds). I'll probably never know for sure, but it wouldn't be the most shocking consequence of trauma I've heard of.

Thank you to everyone for the support over the years. I'll update this if anything significant about my physical health changes, or just to say I'm still doing fine at some point in the future. I'm not expecting any health issues because of the stem cell transplant to crop up, but you never know. I still don't have the best immune system on the planet, but it's not trying to kill me anymore. And I plan to be able to say the same about my mind soon, too.

Year +4

No update since last year because there hasn't really been anything to say. I'm still symptom free and Crohn's medication free. I had my 4 year followup at Northwestern a few weeks ago and, as expected, all of my tests (blood work, MRI, colonoscopy and biopsies) came back fine.

I asked Dr. Burt again about his thoughts on remaining Crohn's free long-term. He previously told me he expected that I would remain Crohn's free for "a good number of years," which wasn't particularly quantifiable. With the data he's collected and the transplants he's done since, he said he doesn't think I'll relapse. That's obviously not a guarantee given how little data there is, but I don't think he would have changed his prediction without good reasons. He was very hesitant to use the word "cure" in the past and, to me, it's semantics. Not relapsing and being cured are effectively the same as far as my quality of life is concerned.

Overall, the transplants using umbilical cord blood weren't doing exactly what Dr. Burt thought they would, so he is revising the trial protocol to achieve better results in terms of lasting remission with future transplants. He now thinks the key to long lasting remission is the chemotherapy regimen, so he's proceeding with trials using sibling donors and autologous stem cells because they are safer to use. There may also be a characteristic of the umbilical cord blood stem cells that is important in long-term remission, but not enough is known yet for him to be sure. That sounds like what he will investigate if just the chemotherapy protocol doesn't do the trick. My chemotherapy protocol was almost identical to the one he is going with for the new trials, and I received umbilical cord blood stem cells, so that, from my understanding, is why he thinks I won't relapse. Just have to wait and see what the new data says.

I'll have one more followup next year that technically counts for the current trial since the primary concerns are safety and efficacy. Beyond that, I'll happily continue to followup if the logistics are feasible.

Year +3

It's been a while since the last update but, again, there hasn't been much to say. I almost made it through my ~6 month trip abroad without getting sick, but I ended up with a cold at the very end of it, most likely due to too much exercise and not nearly enough rest for a week straight. If I remember correctly, my last cold happened over a year before that, and I've been far from a germaphobe.

I had my 3 year followup at Northwestern in the beginning of August. MRI and colonoscopy showed no sign of Crohn's. Biopsies and blood work were normal. Dr. Burt ordered another chimerism test. He said he has had patients who didn't show any of the donor's immune system until later on, so he wanted to check it again. The results for that should be back within a few weeks. I'll post another update if anything is different, but I think the chances are low for the chimerism to change at this point, so I'm not expecting it to. My reflux stays in check as long as I remember to take Aciphex, and I'm still symptom free and medication free as far as Crohn's is concerned. I'll post another update around the end of the year if nothing noteworthy happens before then.

+2 Years, 4 Months, 19 Days

No real news on the medical side of things. Still doing very well - no symptoms except for reflux when I forget to take my medication.

+2 Years, 3 Months, 1 Day

I didn't mean to go so long without posting an update, but you can continue taking no news as good news. Counting the days is a bit too annoying now, but it has actually been 27 months as of yesterday since day 0. I celebrated my second "birthday" 3 months ago, and things are continuing to go well. I'm still symptom free and medication free. I have been having a bit more of an issue with acid reflux when I'm more active (weightlifting, specifically) but taking Aciphex twice on days when I need it seems to be doing the trick. I haven't been sick since my last cold in May, aside from food poisoning/a short GI bug. Hopefully there's not much to report before my next followup in the summer, but I'll try to post an update in January.

Some other exciting news is that I will be studying abroad at Uppsala University in Sweden for the spring semester. I have kept my blog posts pretty dry and to the point purposely so the stem cell transplant can speak for itself, so I intend to start another blog that will have some more substance for those interested in keeping up with my adventures, which I will link to here when the time comes.

Day +664, 2 Year Followup

It's been a while since my last post but that's because there hasn't been much to say. Since then, I came down with the flu in March, for which I got Tamiflu, but that passed without any issues. I also had a sinus infection in May, which went away a bit more quickly than previous infections and without an antibiotic. It would appear now that I'm lactose intolerant since milk hasn't been sitting well with my stomach but I feel fine when I don't drink it. Still no Crohn's issues.

I had my followup at Northwestern last week. I had bloodwork, an MRI, and a colonoscopy for testing, and saw the GI and Dr. Burt. All of the tests showed no signs of active Crohn's. Dr. Burt said that the chimerism may not actually be an overwhelmingly important piece to staying Crohn's-free long term, which may be good news for me since I didn't inherit any of my donors' immune systems. They've had varying degrees of success with transplants since mine, it seems, but I don't know much beyond that. They just need more patients to collect more data to figure it all out.

I won't have another followup until next summer, but I'll try to remember to periodically post updates even if not much has happened.