Well, finally got home after 9 days in the hospital. Went in on Sunday Sept 11 and was dismissed on Mon 19th. Pretty much slept Tuesday and Wed. I honestly don't think I even ate those days, if I did mom brought me a popcicle or something.
When I started coming to, I realized I had another pyroderma lesion on my leg (that was late Thursday night). Friday morning I called and got a work in with my derm. By Sunday night I had 6 new locations and 1 old one flaring up.
Had 4 cortisone injections in the ulcers. Hurt like crazy. Then later I had a work in appt with my gastro there. Had a great discussiom with him. We are going to try for the Stellara (the psoriasis drug). There is no promise I can get it as the clinical trials are over, but he is going to talk to the manufacturer and see if they can do what is called a "Compassion Rx". This is where the Pharm co gives the meds any way off label.
Problem is getting the ins company to pay. Since it is off lable, they many not want to. The Pharm comp will work with me on an amount though that we can afford. I won't know till Mon if I am approved through the Pharm, then it goes through Ins. This could take a few more weeks.
Dr Camgemi raised my Prednisone to 30mg to bring this under a little more control so I can be comfortable till this is approved or surgery. He is willing to try this as the surgery will be permanent. He says he stands behind me in any choice I make, as this is a difficult desicion, he would be willing to try anything first.
I mentioned the food intolerance diet to him and he said that though he was not familar with this particul program many people did remove foods from their diet and had better control of crohn's. He said as long as I was still able to eat something from all major food groups and maintain calores and nutrients, he was all for it.
He said he felt like I would have to eventually have the surgery, but if through these measures it gave me 6 months or even 4 to 5 years, it would be worth the try.