Friday, December 7, 2012

Metastatic Crohn's

As I was mentioning in the last blog post, I have been dealing with a knot under the incision site since February. My drs were hoping that as the Stelara increased, this lesion would not come back.  I had the Stelara on Oct 10.  By the first week of Nov, this lesion was back.  

On Nov 13, I went back to Mayo Dermatology. Everything went fine at the Derm office. Was expecting a steriod shot. She and the head Derm said this was the strangest thing they had seen. Even though it was dx'd as Metastatic Crohn's (by my local gastro), the biopsy didn't prove it or deny it. With it coming back after raising the dose of Stelara, the derm thought that it had to be something more.

They suggested it could be a fistula from
the skin to a cavity somewhere else in the skin. So they suggested a surgical consult. I told them I saw one on Sept 9, 2011. She called over there and he was free so told me to come on.

I got there and he suggested it could be a suture that didn't disintegrate from Jan 2010 surgery. So, without any numbing, he cut the skin and started digging around in the area with something similar to a crochet hook. I was near passing out from the pain.

Then the worst part - if you have ever had an open wound, you know what Silver Nitrate is. It is this gray looking stuff on a q-tip. And it burns like fire. He placed the silver nitrate in the hole and around. My whole stomach felt like it was on fire - all the way from the center to the ribs. I was dizzy and crying when I walked out of the office.

And still no closer to resolution!

Here we come a few days later.  I started coughing (and so did my son).  His dr said he was fine, just allergies, but I was told that I probably had viral bronchitis, but due to the meds I am on, she wanted to put me on an antibiotic and a medrol steroid pack.  I had a Roboxin shot and a steroid shot. This was on the 15th (the Thursday before Thanksgiving). By Tues, my son was burning up with a fever and aching.  He had the flu.  Started him on TamiFlu, 2 weeks of antibiotics, and a cough med. 

Several days after Thanksgiving, I had to call back to the dr and she gave me a 2 week round of another antibiotic.  Here we are Dec 7 and I am still coughing, though getting better.  Mucinex makes things a lot worse for me.  Started taking it and I felt like I was dying - not really, but I couldn't breath and wanted to do nothing but lay in the bed and sleep. Stopped that Tuesday night and can actually breath again.

Well, due to being sick, I can't have the Stelara shot at this time.  Supposed to have taken it on the 6th, but will probably be around the 17th-21st. And the lesion is BACK.  Only this time it has come back about an inch from the wound (the one that came up in Aug and still hasn't completely healed).  I have the wound with a scab over it, yet it has a hole in the center that is about 3mm deep and 2mm wide. 

This area above is sore, red, and hard.  I called back to Mayo today and spoke with the surgeon's office. When I get the Stelara appt, they want to see me.  The derm office as exhausted their resources and research.  The surgeon mentioned last time that they might have to do exploratory surgery to see if they can find the cyst/lesion.

I will know more in the next couple days on when my trip will be scheduled.  Will post another update as soon as I get this information.

 God bless

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