HOME!!

I have never been so happy to be home as I am right now.

Biggest pet peeve. If you have the disease or if you are a medical professional who deals with people with the disease, LEARN HOW TO SPELL IT!!

Exactly one week ago today I walked into the Cleveland Clinic Main Campus to "get some IV steroids for a few days and end this damn flare". I was actually happy to be hospitalized and hopeful that within 24 hours I would feel like a new person; and within 3-4 days I would be back home and fully in remission.

Why wouldn't I think that?? That's exactly how it went down in 2008. It got bad, the oral meds weren't helping; I went to the hospital; got better; and stayed in remission for almost 4 years.

As you all know; this is not how it went down.

The medication started late Thursday/early Friday morning (around 1AM). Friday came and went and I was still having a lot of pain and blood. Saturday came around and they sent me for a procedure to take a look. Luckily not an entire colonoscopy. However, the "prep" for the sigmoidoscopy was so painful I could barely take it. The found that my colon was "very angry!", but still had hope that the IV steroids would start to kick in.

Blood to make me feel better....vampire??

Then it was Sunday and there was still no change. In fact (as I already mentioned in my previous post), my blood counts continued to drop and they eventually gave me a blood transfusion. The blood definitely helped my energy levels and I did start to just feel better, but all the other symptoms were still there.

The doctor came to do her rounds on Monday and told me that she felt it was time to get a surgical consultation. I lost it. This flare that I thought was going to get better after a few days was now still not better, and potentially resulting in me having to have my entire colon removed.

She explained that it seems to be presenting itself as potentially "just" ulcerative colitis, which would mean that the surgery could potentially cure it. However, its currently unclear as to what my disease actually is and there is no real way for them to know until the entire colon is removed. Great.

She also said there were other medical options that we could also explore. We discussed Remicade and she told me to start researching since that has its' risks and side effects as well. This was no easy decision. No one wants to lose their entire colon, but when someone makes it sound like this could be a permanent fix - no more flares, no more medicine - it ends up sounding like a good option.

Problem was (and is) - that no one has a crystal ball. That sucks. What's the right decision? Remove my colon and find out that it actually is Crohn's and the disease comes back anyway?? Take a medication that may or may not work, that could cause cancer or other things?? Not an easy decision.

Thankfully my family was able to speak with me and made me realize that we haven't exhausted the medical options and I should not "rush" into surgery (a very serious surgery) without being more conservative first.

My mom brought me a friend on Wednesday.

So Tuesday I asked my mom and husband to come to the hospital so they could listen to the surgeon as well. They were there when the GI doctor did her rounds and it was helpful. What they heard her saying was "try Remicade first", which was not what I heard the day before (I think she changed her story when I asked her what she would have me do if I were her daughter). She was careful to never actually say, "I think you should"....but, she did say numerous times, there is nothing wrong with being conservative.

She explained that we should know if the Remicade is working within the first 3 infusions - so about 6-8 weeks from now. I was (and am) overwhelmed at the thought of still being sick for another 6-8 weeks when I let it go so long to begin with. But, I'm starting to just be hopeful that it's going to work and I'm going to start feeling better tomorrow.

So, I was discharged this morning and completed my first Remicade infusion this afternoon. I'm happy to be home and hopeful this will work. The other stressor currently is due to the fact that I am such a tough stick that I had to be given a PICC line......but I can discuss that in another post! :)