Tuesday, November 22, 2016

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.

Wednesday, August 26, 2015

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.

Tuesday, August 26, 2014

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.

Wednesday, January 15, 2014

+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.

Wednesday, November 27, 2013

+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.

Thursday, June 20, 2013

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.

Sunday, February 10, 2013

Day +534

I got over the rest of the cold reasonably quickly. As expected, the chimerism results came back 100% my own cells. The fertility testing came back completely normally. I misunderstood how the immunization titer testing would be handled. They actually didn't test for it at my followup, so I'll see my PCP at some point when I'm not at school and get that done. Dr. Burt didn't say it was terribly pressing and that I need to take care of it right away so I'll wait until it's more convenient. Other than that, I'm still feeling great. No symptoms whatsoever.