Becoming An IBD Advocate

I’ve been asked several times what made me decide to become an IBD advocate. It’s a story I don’t think I could ever forget.

It was Christmas 2011 and Domenic was having one of the worst flares of his life. We had already spent over fifty days in the hospital that year, including Halloween and Thanksgiving, and I was determined to keep him out of the hospital for Christmas. I didn’t want Santa to have to visit Domenic in the hospital on Christmas morning.

The week before Christmas, Domenic was having fevers due to the flare. They were mostly low grade fevers, around 101 to 102 degrees. Tylenol would help greatly in bringing the fevers down but they would usually come back again hours later.

On December 22nd, 2011, just prior to Domenic going to bed at 8:00 pm, he had another fever. I gave him some Tylenol and tucked him into bed. I stayed up to do some work and decided to go to bed myself around 10:30 pm. Before I went to bed, I decided to check on him one last time and after touching him I could tell that not only did his fever not break, it felt like he was hotter. I got his thermometer and took his temperature again. This time it showed that it was 106.5 degrees. My immediate thought was that the thermometer was inaccurate, so I took it again. It again read 106.5. I knew I had another thermometer in the house so I went and got that one, only to have it give me the same reading. A huge wave of fear came over me and I think I was almost paralyzed about what to do. Instinct must have taken over because I found myself calling my parents, a resource I find invaluable when I’m either not sure what to do or need advice. My parents suggested that I use the thermometer on myself to see what it would read. I took it and it came back normal, 98.7 degrees. This was no longer a minor flare fever but a real emergency!

I ran to the bathroom and got three wash cloths and soaked them in cold water. I put one wash cloth on his back and one wash cloth on his chest, then I placed his younger brother’s shirt on him knowing it would be very tight keeping the wash cloths in place. I placed the remaining wash cloth on the top of his head, grabbed my “go bag” ( something every IBD parent should have for those unexpected hospital runs ) and headed to the car.

Domenic’s GI doctors and hospital is the Children’s Hospital of Philadelphia. Roughly an hour car ride away from where we live. I could have taken him to one of the two local hospitals but I have absolutely no faith or confidence in those hospitals. Domenic was able to talk to me and was understanding what was going on, so I felt I had the time to get us to the hospital that would be best for him. While we were driving I called the GI Fellow on call at the hospital and explained our situation and that we were coming in to the emergency room. He was promptly waiting for us when we arrived. Domenic was taken directly back to a room and was admitted within 45 minutes.

They got Domenic stable and his fever started coming down. It was by no means gone yet, but it was down enough that we were out of the danger zone for the moment. We were taken up to an in-patient room at about 4:00am on December 23rd. Domenic was asleep and I was just getting myself settled in. As I laid on the parent bed, unable to sleep, depression started to set in rapidly. I knew we were going to be in the hospital now over Christmas, something I desperately didn’t want for Domenic.

We spent most of the day meeting with GI doctors, scheduling tests, and still fighting his fevers. I never felt more helpless. My son was laying on the hospital bed basically motionless. He was in so much pain and so lethargic that he couldn’t even speak. My depression and sorrow quickly started to change to anger over the situation. Why couldn’t I do anything about this? Why couldn’t I keep my son out of the hospital for Christmas? Why couldn’t we get this flare under control?? These were just a few of the questions I spent the day asking myself.

Later that night after Domenic went to sleep I found myself unable to sleep again. I decided to log on to Google’s social network, Google+, and do a video hangout with some people I talked to on there. Shefali Burns, Robert Redl, and Ron Jackson came into the hangout and I explained everything that was going on. They allowed me to vent and helped me to get everything off of my chest that I had been bottling up. I thank God they were around.

Before we ended the hangout, Shefali asked me if she could interview me after we were released from the hospital. Google+ has a feature called Hangouts on Air where the hangout is recorded and live streamed to YouTube where everyone can see. She knew there had to be others out there going through the same things Domenic and I were going through plus it would be a good idea to raise awareness about it. At this point, I had never talked to anyone, outside a chosen few, about IBD and Crohn’s. I had never put myself out there for the world to see and wasn’t sure I was comfortable with it. I said I would do the interview but had already told myself that I was going to have to find a way to back out of this.

On December 30th we seemed to have the flare under control. Domenic was in better health than when we came into the hospital and the medical team, including myself, felt like we could manage the rest of it from home.

The next day, Shefali sent me a message saying that in five minutes she was going to invite me to the Hangout on Air so we could do the interview. I had all but forgotten about it at this point and I immediately started to think of all the excuses I could give real fast. At the last moment, something inside of me just said do it!

I got the notification that Shefali started the Hangout on Air. I pressed the button to join and every emotion was running through me. Would I be able to articulate Domenic’s story correctly? Would I embarrass Domenic or anyone else in my family for that matter? And what if I came off sounding like I’m whining or complaining rather than trying to help raise awareness about it?

As we went through the interview, Shefali couldn’t have made me feel more comfortable. It was just as if we were in a regular hangout, talking about what Crohn’s Disease was… How it affected me and my youngest son Anthony.. Plus what some of the challenges were and how we were dealing with them. The interview lasted for seventeen minutes and when it was over, I felt like I had done an alright job.

The truly amazing part was still yet to come…..

When the Hangout on Air was over, Shefali and I went back into a regular hangout with some of our other friends. As we were talking and having a good time I started to receive e-mails. E-mails from people who had watched the interview. Then I started to get notifications that comments were being made on the YouTube video. I was amazed!!! People had actually watched the interview. Not only had they watched the video but they took the time and energy to actually send a response to it.

Almost every type of person reached out to me. Those that had IBD… Those that knew someone with it… Parents who also had a child suffering with it… And even those that had never heard of it before and wanted to know more about it. I spent the next day and a half responding back to each and every one of them. I felt obligated to do it but I also felt the want to do it. Here were people who had never met me before, had no idea who I was, but because they could relate to me or wanted to understand more about it, they took the time to send me a thoughtful message. Responding back to each of them was the least I could do.

By the time I was done responding to everyone I felt completely empowered. I no longer felt like just a victim to IBD!! As I wrote each response, I felt like this was a tool. As I was connecting with others I was learning… I was taking in other people’s experiences and they were taking in mine. We were becoming stronger!

I didn’t want to get caught up in the moment. I feel that when emotions are running high, regardless if they are positive or negative emotions, it’s best to take a step back for a minute to ensure what you are seeing and feeling is real. I took the next couple of weeks to decide if becoming an IBD advocate was the best thing for Domenic and would it be the best thing for my family?

My conclusion was yes… And so, The Crohn’s Colitis Effect was born.

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  • Christina Matthies

    Wow, Frank, this is amazing! Thank you so much for sharing the beginning of your incredible journey. As always, I feel lucky to have met you!

    • Thank you so much Christina!!! I am equally as lucky to have met you! I love the work we do together on the IBD Round Table and find your blog a wealth of information too!