It’s been a long long time…..

Well, I can’t believe it’s been close to four years since I last posted on my blog. So much has happened, so much has changed, so much has been done and so much more needs to be done. Let’s go back first to 2020, where I last wrote about how I was doing. I last wrote that I was getting a new team of doctors as I needed more surgery. I had gone with a new team of GI doctors at Tampa General, which at the time were considered the best in the region. Confidence was high that my next surgery would go well and my Crohn’s disease would be in remission.

Needless to say, with the Pandemic going on at the time, and I having my surgery, it didn’t go as planned and my body was literally at war with itself. I was feeling so defeated, depressed and just wasn’t in a good place. I started researching where in the US I could get better care and I found that that the University of Pennsylvania Penn Medicine had one of the best GI teams in the country. We (my family), were also looking to move to PA because Florida had become so toxic. Having children in school we realized that the education system in Florida had become so politicized that our kids just weren’t learning. So in the fall of 2021, we moved to Pennsylvania, and I switched doctors to Penn Medicine and met with their surgical team. Being an extremely high risk patient, my new surgeon was patient and thorough and after waiting for my body to calm down, she got to work.

It took a two surgeries, but she was able to put me back together and close everything up. Of course my body was trying to fight it, but after many, many, many hospitalizations and several hundred thousand dollars of hospital bills, my GI system is relatively working the way it should be. I switched medicines from Stelara to Rinvoq, and I think the Rinvoq is working. In general, I have less daily pain than ever before and my quality of life has improved. My only major issue now is fatigue, and intermittent pain, but it’s a vast improvement from where I started when we first moved to PA and for the past decade.

Crohn’s disease truly does suck. The past ten years, it became so active and caused so much disruption in my life, that I truly hope I can be and remain in remission for as long as possible. The difference between when I was first diagnosed twenty five years ago to today is incredible. I’m glad that now I at least have the availability of so many medications to try. It’s certainly been quite the journey.

Hopefully, I won’t wait another four years to write an update!!