Thursday, August 9, 2012

Doctor's and Appointments

Today we had a day full of appointments and doctors.  We left our house around noon and didn't get back until 5.  That is Day 2 of crazy medical runs.  The day before that we drove down the hospital picked up a new prescription and had to have some blood work done as well.  Then obviously today was packed too.  Those kinds of days are way too long for us at the moment, but they had to be done.

Our first appointment was with Dr. B, the colorectal surgeon.  He took a peek at Ryan and said that things look as good as they should as Ryan is still technically an untreated Crohn's patient.  Everything we've done at this point-surgeries, hospital stays etc have been to treat the side effects-not the actual Crohn's.  It feels impossible to keep playing catch up with such aggressive, mean symptoms and we're glad to FINALLY be treating the Crohn's.  Not sure why this didn't happen sooner...ugh.

Dr. B will not remove the cetons (the rubber bands keeping Ryan's fistula open) just yet but in September we have a chance at getting them out.  Ryan was also having another tender pain in the perineum area a few days ago which discouraged us big time and made us think abscess.  And another one of those means another surgery.  But Dr. B thinks it's just the cetons kind of poking around irritating the skin.  Nothing you can do about it really.

Ryan is down another 5 lbs which puts him at his all time low-144 lbs.  That pretty much was the cherry on top of the cake.  Dr. B was not worried however because Ryan did just have major surgery 9 days ago and his body is pretty thrashed at the moment.   His advice was lots of high calorie smoothies, drinks, shakes, and good fatty foods like avocado which is Ryan's favorite anyway.  He even said Ryan should have lots of Cold Stone which delighted my husband to no end :)  Not sure if I am in full agreement with that one though doc.

The second appointment was pretty useless but standard protocol before you start a major drug therapy like Remicade.  We met one final time with Dr. L (P.S. We switched GI doctor's because we realized we were so unsatisfied with this doctor's care-a good, needed switch) so he could explain the risks, side effects, expectations, and other information about starting Remicade.  Basically said there are not serious side effects that occur frequently, but to just expect fatigue or maybe an allergic reaction, but both are rare.

That starts Monday and we cannot wait!  That will officially address Ryan's Crohn's Disease.  We hope it just kicks him into high gear to feel good and strengthen him back up!  We can expect that they will start an IV in Ryan's arm and then the transfusion takes about 3-4 hours.  We'll pack his iPad and a good book and sit back to let the meds work their magic!

I think that is all on us.  Ryan is conked out in our room after our hard, tiring day.  Yesterday when we got home from 5 hours of appointments he promptly slept for 4 hours straight :)  Still sick but we're hopeful for what's to come!!


  1. Perhaps you can make your own healthy fatty cold-stone type of ice-cream for Ryan. Will be praying and having positive thoughts for you and Ryan on Monday.

    1. Ha it's true! Maybe using whole milk and peanut butter and things like that I can fatten him minus all the sugar. He is thrilled to only have the responsibility of fattening up :) So glad for you Kay, you always are so encouraging!

  2. Perhaps you can make your own healthy fatty cold-stone type of ice-cream for Ryan. Will be praying and having positive thoughts for you and Ryan on Monday.

  3. This is excellent that you are starting to treat the Crohns! :)

    1. I know Vee we are so excited!! Thank you for being so present in this!



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