+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.

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.

Day +507, 1 Year Followup

I managed to get a cold a few days before going to Chicago, but it hasn't been that bad. I'm still not quite over it, but I think I will be soon. I saw my GI, Dr. Yun, on Monday. It was pretty uneventful - just a normal assessment. I'm going to take Aciphex every other day now and see if that's enough to take care of the reflux. I'm still not on any Crohn's medications. I got my blood drawn afterwards, including for one last chimerism test, which was just part of the protocol for the 1 year followup. No expectation for it to have changed since last time.

I had a colonoscopy on Wednesday. Everything went very well for that. There were no signs of active Crohn's Disease, just leftover scarring and pseudopolyps. Dr. Yun took biopsies all throughout and those showed no signs of active Crohn's, as well.

I had an MR enterography (same process as last time) and then saw Dr. Burt on Friday. When I met with Dr. Burt, he had the results. Again, no signs of active Crohn's Disease. Regarding the blood work results, everything was fine. My sedimentation rate and C-reactive protein (inflammatory markers) were barely above normal. That is most likely due to my cold, though, given the rest of the tests showing no issues.

Dr. Burt was, of course, extremely happy with how I am doing. So pleased that he won't let me have another colonoscopy unless I start to have symptoms. The results regarding whether or not I'll need my immunizations again will take a while longer to come back, as will the chimerism test. I'll post another update about that when the time comes. After that, there isn't much else to be concerned with other than how long I stay Crohn's-free.