Discharged

The Tylenol they gave me last night helped with the fever and it was gone by this morning. My white blood cell count and heart rate had been lower since the 103F fever so Dr. Craig guessed it wouldn't be as much of a problem. The medical team forgot to change my diet restrictions so I ended up with liquids for breakfast. I was happy with whatever they would give me at that point. That still went down fine, and I had solids for lunch: honey glazed chicken, cooked carrots, and grapes. It was actually really good, and I was able to eat without any issues. After the medical team checked in about how the meal went, they worked on the discharge process and I was out within 2 hours.

I'm still feeling much better than Monday, about the same as before the colonoscopy, and better than yesterday since I've been able to eat. The only difference I've noticed so far is that I'm burping more than before when I eat. Not a major issue, just an annoyance. I'll be on Cipro and Flagyl for another 8 days and keeping an eye out for any change in symptoms. I don't have any more appointments scheduled with Dr. Craig or Dr. Burt, but I'll probably call to check in with them sometime next week.

While I was in the hospital, a ton of medical students and residents kept up with things, asking questions, listening to my heart and all that. Dr. Craig checked on me regularly, Dr. Burt came by, as well as a surgical team. After Dr. Burt saw the x-rays and talked with everyone else, he said it was a "minor setback" and things should play out about the same. The stricture will pose a bit more of a risk as it's another possible place of infection while I'm immunocompromised, though. The surgeon talked to me about the possible options on her side of things, not being pushy, just sounding grim, so I would have more information to base my decision on. Dr. Burt sounded comfortable with going through with the stem cell transplant, assuming things don't get much worse. Again, since it's a trial, he isn't going to be taking risks he isn't sure about for the sake of the patient and the trial itself. From what I understand, major complications and/or death are huge reasons why trials are stopped and don't make it as approved treatments. He doesn't have a problem saying no to a patient who isn't a good candidate.

Dr. Burt also said that he has seen strictures end up healed after the transplant, more often in the colon/large bowel, where mine is located, compared to other areas. The surgeon's opinion was that it was unlikely that the stricture would heal, but possible. I'll want to talk to Dr. Burt more about it but I'm still going with his word. He's the most involved and most knowledgeable with the transplants so I trust him most. Surgery really would be my last resort, even behind finding hookworms. I haven't heard anyone make surgery sound like an attractive option, especially compared to the possibilities of a stem cell transplant. With a colostomy and ileostomy, they can get rid of the diseased parts of the intestines, but that comes with its own drawbacks.

There's nothing stopping Crohn's from spreading to what's left of the intestines, so you may not stay symptom free for long. It's normal for people to still need medication to help what hasn't been taken out and, with no medications left that are treating much, that doesn't even seem like a long-term situation. A large percentage of people who have surgery will require more surgery in the future, and there's only so much you can take out. Each subsequent operation can be more difficult. If you're facing death, surgery seems like a far more reasonable option. The quality of life surgery may lead to isn't anything I want to settle with yet. If the stricture doesn't end up healing, a resection to remove it will be worth considering. That's something to deal with in the future, though.

I'll work on updating/correcting information on the what is a stem cell transplant page with some of the free time I have between now and the transplant. I'll post an update sometime next week unless something else comes up before then.