ImproveCareNow isabelle_linguiti


Gutsy 3 & 4 Take On The Learning Session!

As this year's PAC Scholars Bianca and I (Isabelle) got to go to the 2014 Fall Learning Session in Chicago. We had such a great time and just wanted to share some of our thoughts about the LS before, during and afterwards!The 2014-15 PAC Scholars Bianca & Isabelle

Before:


Isabelle: Leading up to the Learning session I was so excited! There were so many texts and e-mails and many plans to be made (plane tickets, hotel rooms, and most importantly snack choices). As it got closer I was a little nervous, as I am the only one of the PAC representatives who had never been to a Learning Session before, but mostly I was just so excited to see/meet my fellow PAC leaders and so many others!

Bianca: Before the Learning Session I was super excited to see everyone again and be able to meet my fellow PAC Scholar, Isabelle! Since I had already been to a few Learning Sessions, I knew what to expect (how busy it is, the amount of new people I would be meeting,etc.), but I was looking forward to working on a different level with the PAC. Before the Learning Session, I got to help out with the pre-work. "Grading" each center's vision for their ideal treatment center and picking my favorites was a lot of fun. I loved reading how big every center's dreams were for their own perfect IBD center.

During:


Isabelle: I met so many interesting people. It was so amazing how nice and down-to-earth everyone was, including the big-shot doctors. They all introduced themselves by their first names and seemed genuinely interested in hearing about where I go to school, what I am studying and my dreams for my future and the future of the PAC. There were many planning sessions with just the PAC and it really got me excited about our future projects and being in the Learning Session environment helped make those projects feel connected to a larger purpose.

Bianca: During the Learning Session, I met so many more people than I had anticipated! It was great to be able to formally meet everyone and see how passionate each and every center is. I also got to spend a lot of time with Isabelle, Jennie, and Sami, which was awesome to get to know them on a different level, rather than throught text/emails. The past few Learning Sessions I had been to were nice and helpful, but I like to be more involved, so this Learning Session was by far the best!

After:


Isabelle: I made so many connections and learned a lot about ICN at the Learning Session. It was a lot to take in but I really enjoyed the entire event and can’t wait to go back again, this time with even more knowledge heading into it. Meeting my fellow PAC leaders Jennie and Bianca and of course seeing Sami again was so much fun and I feel like I am so close with all of them already. I am very excited for our future and the future of ICN!

Bianca: Afterwards, I was beyond excited for what this year would bring. This LS was great becuase, like I said, I got to spend a lot of time with the PAC leadership, being introduced into the PAC leadership position, setting goals, ordering room service, and just hanging out with each other.  Though the few days were fun and enjoyable, things did get hectic at times, but overall a great, well spent, work filled weekend. I cannot wait until the next LS, because the experience of each Learning Session is like no other - the connections made, the work being done, and of course the laughs and tears shared. I am beyond excited for this year!


Hi, I'm Isabelle

When I was first diagnosed with Crohn’s at age 15, I had absolutely no idea what that meant. For the first three months after my diagnosis I thought the medicine I was taking would just make it go away. I can still remember the day I asked how much longer I would have to take the medicine. My doctor looked surprised and then told me most likely for the rest of my life. After that I still lived in ignorance, thinking that taking the medicine forever would keep me totally healthy. It took months of intense illness to rid me of that notion. That’s when I fell into a deep depression. Everything seemed out of control and scary, and all I knew was that the rest of my life was going to be filled with this pain.Isabelle Linguiti

 

Of course I was incredibly angry about having the disease, but what made me even angrier was that nobody ever explained to me how IBD is not curable but it can be manageable. Nobody ever told me that while I will have it for the rest of my life I wouldn’t necessarily be in this much pain or this debilitated for all of it. Nobody ever invited me to give input into my own care.

 

I am not someone who takes well to being left in the dark so I starting spending all of my time stuck in bed researching and learning everything there was to know about IBD and its treatments. I read every study I could find and started bringing my ideas to my doctors. It was so frustrating because at every turn it felt like we were in uncharted territory and they didn’t know what to do but they still weren’t turning to me for help figuring it out. My opinions about what course of treatment I should take continued to form and in time I became more assertive.

 

I pressed my doctors to allow me to get a g-tube placed, something they don’t generally use in Crohn’s patients. It was the right choice for me. Despite resistance or at least hesitance on the part of my doctors, it ended up preserving my health during many periods of acute illness. There are other examples but I just share the g-tube as an example of why the knowledge and feelings of a patient are so important to consider in the decision-making process. I knew what my body needed and I was right.

 

Obviously I’m not a doctor and I should not be unilaterally deciding on the care plan, but I know that if I had not been advocating for what I felt was right for me in my unique situation, I would not be anywhere near as healthy as I am now. Now I feel like I have a really great team-based approach with my doctors. I want everyone to have that and I don’t want anyone to have to fight as hard as I had to in order to make that happen. I don’t blame my doctors for their resistance. I think they’re great and I believe they really respect me but including a patient’s perspective in decision-making is simply not the way things are done - especially in pediatrics. In my opinion having informed patients and a collaborative relationship between patient and doctor is the best, and frankly the only road, to optimum health.


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