I’ve almost made it to one month mark! its definitely been a stressful month, but I’m starting to see improvements everyday.  Of course, once I started making positive steps, something had to go wrong. Last week I noticed a small rash on my back that was unlike any rash I had felt before. It was small, but it was extremely painful. I watched it for a couple of days and realized that it was becoming raised up and growing. I’m majorly paranoid that something is going to go wrong; every grumble of my stomach is an obstruction, every rash is an infection, etc…  My main concern with this rash was that it was a sign of a bigger problem inside, my first though was I had an infection that manifested itself as this rash on my back. I got a hold of my surgeon and sent his office a picture of the rash and they told me it looked like shingles and I needed to go to a dermatologist immediately. Upon researching shingles it made absolute sense, all my symptoms matched. For those who don’t know much about shingles, its essentially the chickenpox virus that stays dormant in your body from childhood. It can “wake up” later on, and comes in the form of shingles. Typically it occurs in older people or people whose bodies are stressed out or have a weak immune system.  I’ve dealt with some pretty painful things in my day…like a major surgery just 3 weeks ago…but the pain from this rash was absolutely UNREAL. I would just cry for hours it was so painful and nothing could relieve the pain. It literally felt like someone was stabbing me with a burning hot knife over and over again. It was also extremely itchy, but I got no relief from scratching it, only more pain. Basically misery. Luckily I had a dermatologist who hopefully could get me in quickly. With my luck, when I called I was told that my derm had left the practice. COME FREAKING ON. Getting to these appointments is a huge struggle these days. Although I’m more mobile now, its hard to be up for long periods of time and in the city it takes forever to get to my appointments. Taking the subway is extremely difficult and this was just one more thing that I did not need to deal with. When all was said and done, yes, I was diagnosed with shingles and started on an anti viral. A week later the rash has definitely gotten smaller, but the pain is still there. Shingles grows on nerve roots (why its so painful) and people sometimes experience pain for weeks, months, or even years after the rash is gone. Hoping this doesn’t happen to me…

            Earlier this week I met with my GI doctor for the first time post-hospital. At this point, because of the surgery, the crohns is in remission. I achieved remission because we were able to remove all the areas that had active crohns (colon, rectum, anus). This doesn’t mean, however, that the crohns cant come back in my small intestine. Originally I had active crohns in my small intestine, and had 9 inches of it removed in 2012. After my first surgery my doctor chose to not put me on any medication. Looking back, this was a major mistake and makes me think that this surgery could have been potentially avoided if I was put on a drug post surgery. The goal of this GI appointment was to brainstorm what maintenance drug they wanted to put me on. They explained to me that we would be able to try some of the meds that hadn’t worked in the past in hopes that they would work now that ive had the surgery. For several months leading up to the surgery I was taking a drug called 6mp, which is actually a chemotherapy drug that is used in severe cases of autoimmune disorders, like crohns. This is a pretty intense medication, and not necessarily what I wanted to take long term, but it was plan A. When my doctor found out I had shingles he was very concerned and said I needed to stop the 6mp immediately as it was a rare and serious side effect of the drug. That means, another drug to cross off the list. I had been taking the anti viral for the shingles for a week while also taking the 6mp, which my doctor explained was essentially feeding the shingles virus. Greattttt. We eventually decided on humira, which is an injectable anti TNF drug that I had taken for a couple years with mixed results. It worked for a while, but then stopped. They are optimistic now that my body is healthy it should work in keeping the crohns from coming back. We have to totally wait until the shingles virus is completely gone before starting the Humira, I have an appointment in 3 weeks at which time well start it.  

            As far as the recovery goes, I am right on track where I should be. My appetite is back, but I’ve had to reteach my body how to eat. I’m only able to eat very small amounts, so I’ve been eating around 5 small meals and snacks a day. I still am not able to eat many fresh fruits or veggies aside from bananas, potatoes, and cooked carrots. It seems like every girls dream to be able to eat nothing but garbage and not have to worry about getting fat (im trying to gain 10+ pounds) but once junk is all your able to eat it gets old so fast. I would die for a giant salad nowadays…The major struggle is energy. I’m working on getting up and doing something small everyday. I’ve been able to take the dogs on very short walks during the day, which they love. Its amazing to me how tolerant they have been of me. They know something has changed with mommy and they are very gently and patient with me. Ive also started pushing myself to do some bigger things. We went out to dinner with Rivers mom, Arden, Amber, and cousin Cori a couple of weeks ago and this past weekend we went to the dog beach. Although these “excursions” are exhausting and hard, they give me a glimpse of how fun life will be when im back to normal. At the beach I was majorly proud of myself for showing off my bag, no shame!

            In the coming weeks I have another appointment with my surgeon, dermatologist, and then GI in a few weeks. Everyday im setting small goals to achieve to start building my endurance back up. In the middle of October im taking a trip to Cleveland for a week to do some recovering with my family and get out of the city for a little bit…cant wait.

Until next time, C