Hi Everyone..............we leave Sunday FINALLY for the Mayo Clinic.
Oddly enough these past 2 weeks he has had far more better days than bad. (Kind of like bringing your car to the mechanic - stops making the noise or problem you made the appt for....lol). It really does appear to be the start of a remission with everything that is going on for him. Major improvement is 4-6 BMs a day which usually is 2 or 3 with well formed stool and the others are usually just gas related. My major concern is being able to get off the pain meds. I don't like the reliance on them but it is a touchy subject....that is what has allowed him to function and go out and play golf and do some "normal things" with frequency and not having to stay indoors due to pain or urgency.
The data base spreadsheet I have done up in prep for this was a good idea. It really does show the pattern (and major improvement overall) regarding the BM's. When you start to feel better and have a functional life you don't realize until you see it detailed on paper where you currently are and where you were only 4 months ago. He is maintaining a safe diet that seems to agree with him and not "rock the boat". He will have a little something here and there to test the waters and hasn't had any bad reactions that we can see.
I was kind of afraid that by the time we got this appt and would go there that possibly the combination of Asacol with the Imuran might take hold and make a difference which it seems to be doing. It was 4 1/2 months ago the Imuran was started and I know it is 3-6 months usually for it to help if it is going to help. If we didn't have this appt I think we would both be kind of satisfied where we are at the moment.
Regardless of the additional hotel expense and maybe some uncovered insurance expenses I'm sure it is still important to go and have them as part of the healthcare for hubby. Our local place is very good but it's a small practice in comparison and they urged us to get care there as well to make sure he is on the proper road to remission.
I am sooooooooooooooo overly prepared and have a number of things to inquire about based on info I have been collecting here at Healing Well.
Kind of jazzed about going there and getting their opinion on some of these things and insight for potential down the road stuff to consider as well.
I hope we are only there for the week or less and home by the weekend. We leave for Aruba the following week and would like to be back here to get the Aruba stuff ready even though I started already packing for there. (Our Aruba trip last year was not good as he was flaring and in the midst of alot of major discomfort so it is kind of nice that things have turned around for him at this point and w can look forward to this vacation.)
I will try to post an update with our results when we get back. And THANKS SO MUCH for all that you have given me to be able to advocate on his behalf even though sometimes I was a pain in the rear end (ha ha) constantly reporting back and forth to him about this and that as he just could not sit at the computer and still doesn't....I've won that job with Healing Well now!!!
Take care all. You've become my extended family and I appreciate you!!!
60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07 July 07 good days & bad days 75mg Imuran 40 mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg