Wow, can't believe it has been over 6 months since the last post. A lot has happened since then. More than I can begin to tell in this update.
I did get the Stelara shot in Feb and while at Mayo, discovered a small lump in the incision site. Was a bit concerned that it was pyroderma. The drs didn't seem concerned at all. After a couple weeks, it went away. Then it came back in April, just as I was going in for the Stelara (which was moved to every 8 weeks). This time, the lump was large. I was admitted to the hospital for observation. A CT scan was done and they found a large mass slightly smaller than a golf ball with inflammation to the stomach muscle. They discovered that the crohn's was still active, but was under better control than in Aug (when this blog started)
A biopsy was done and everything returned negative. Slowly, it started going down again. I made it through June with no returning of the mass. But Aug came around (and time for the Stelara shot), the mass was back and very painful. It was 3 more weeks before I could get the shot. I had 3 Mayo trips that month and 2 to Macon, Ga back to my surgeon. I had hoped that he might have a clue to what was going on. Sadly, he didn't either.
Mass did the same as before, it would open and drain for a week and heal over. Had the Stelara on Aug 28 and things began to improve (except for the whole family getting the flu - dad had it a few days before we went) Before long, mom had pneumonia. Finally in late Sept, I went back to my hometown gastro. Within minutes, he knew what this was. Cutaneous crohn's, also called metastatic crohn's. I finally had an answer, but it was not what I wanted to hear. Crohn's again was attacking another part of my body. If it could not attack the intestines, it was going to attack my skin. And the bad thing is, metastatic crohn's doesn't respond to prednisone and the traditional treatments. Usually only heals when intestinal crohn's is under control and has to use biologics to bring it down. Also, it is very rare. My hometown gastro said I was the 3rd patient in over 25 years of practice that he had seen with this.
I am still fighting this, as Oct came around and nearing shot time, it has reappeared. I went back to Mayo last week and the derm department did another biopsy (and a much deeper one at that) to look for granulomas. And the gastro dept called and got the Stelara several weeks early - and they were able to double my dose. I am now going to be taking 90mg every 8 weeks.
I am not sure what this dose is going to cost, but I found out that the 45mg that I had been taking costs $11,001 per shot! Yes, you read that right, 11 thousand dollars. I will know next month when we see the bill from the ins company what the actual cost is. Thankfully, I only have to pay $76 for the shot. In Jan, that will go up again to $135 each shot, but will be for a few months before we get a discount again.
I just got home Fri morning from this trip. We are all pretty exhausted. Especially my son Elijah. He wound up with some form of food poisioning on the way down there. He ate a half a buscuit around 9am Tue and by 1 he was sick as can be. Later that night, he spiked a fever of 102. This lasted till late Wed. It was Thurs afternoon before he finally ate anything. He seems to be over it now, but I can tell he is still a bit dehydrated.
Guess we are now getting back on our feet after this trip. Gonna take it easy this weekend and be lazy. Then Sunday morning, I am getting myself and Elijah back in church. I miss my church family so much.
Love you all and God bless
~Joy and Elijah
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