Well the day of my first resection is tomorrow. I can't believe it is really here. There have been so many setbacks I have to keep looking at the calender now to prove to myself it is really time. I'm actually looking forward to drinking the 4 liters of prep.
As many of you know, I was supposed to have my first Crohn's surgery in May but a surprise brain aneurysm was discovered on an MRI and MRA and so I had to have that taken care of first which ended up to be a precarious 3 days in the neuro ICU and a tremendous amount of pain due to the fact that I had to spend most of that time flat on my back immobile . They had to put a stent in my brain to fix the aneurysm and so I had to go on Plavix and regular aspirin and rest until 2 weeks ago when I had another brain angiogram and I am doing so well that they have taken me off the blood thinners and I only have to take a 'baby' aspirin now which I have to stay on even through my surgery.
Before even all this, right after my diagnosis, they discovered I had latent TB (I needed 3 tests to confirm this) so I had to go through 6 months of INH therapy. I must have picked it up in Central Asia when I was there on business. I was already on Entocort and Pentasa and had made an appointment to see one of the bigshots over at Mount Sinai for my second opinion when I wound up in the ER with what I thought was a heart attack. After 3 days in the cardio wing and a heart angiogram my new cardiologist was convinced that I had pericarditis an inflammation of the sack surrounding the heart due to all my auto-immune diseases.
So second opinions had to wait another month or so and then finally I was told what we all knew all along.. I had to have surgery to get this stricture out of me. He also said that I should get off the Entocort because my stricture is already all scar tissue so the Entocort wasn't helping anything.
So now it was time to actually call the surgeon I had been researching on the net. Most people go to Mount Sinai in NYC for Crohn's issues but after meeting with this sinai doctor I decided I liked the one I found on my own. He specializes in saving as much small bowel as possible and has created his own technique for strictureplasty that he teaches around the world. I am just lucky he is in NYC. He only sees people 2 days a month and I saw him the first time in March. Then all this brain stuff happened and surgery was postponed. He will be finally removing my ileo-cecal valve, cecum, and about
8" of terminal ileum laparoscopically (we hope). He is also going to take a look around in there as no one has ever seen inside there before.
I can't wait to eat normal food again! I also want to thank all of you that helped both me and my boyfriend along during this tenuous time just 2 months ago or so... seems like a year. I also made lists of all the things you told me to bring and wear and all of your other great suggestions for before and after surgery. I don't know what I would have done without the support of this forum.
It feels equally strange to post this and be talking about
myself knowing that our friend Gail (Nanners)
is herself going through one of the worst times in ages. While I worry somewhat about
what will happen with me I can't help but think about