Moving away from your care team? Social media to the rescue!

Hey there.

I’ve honestly been wracking my brain trying to find something to write, to divulge; something to tell all of you wonderful people out there. I’m a writer by profession and by pleasure, but until this evening, I’ve been experiencing a bit of a block. I didn’t know whether to tell my IBD story – a lengthy one at that – or to give some tips and tricks about managing IBD, or just a fun post to give you inspiration and strength, because if you’re anything like me, you seem to need that most often.

But, I’ve been hit with a spark of inspiration! How do you deal with relocating and essentially starting from square one? I've got a bit of insight on this.

I’m twenty-five now and at twenty-two I was diagnosed with left-sided ulcerative colitis. In that time span, nearly four years now, I’ve managed to have four gastroenterologists (GI doctor) in various places. I received my first colonoscopy and initial diagnosis in St. Louis, Missouri. Then I moved to Springfield, Missouri and got onboard with a different gastroenterologist on recommendation from my GI doctor in St. Louis. Then, the big move happened. I was getting ready to wrap up a master’s degree and I took a position in Chicago, Illinois. I eventually found an amazing gastroenterologist, who helps in taking great care of me, but it wasn’t easy finding him.

I couldn’t have been more excited to move to Chicago. It was a long-time dream of mine and when I found an amazing internship-turned-full-time job, it was an opportunity I was not going to pass up on. So I packed my belongings and with the help of my parents and one of my uncles, moved up to Chicago during the brutal Midwest summer. Hot, humid, no air conditioning in the apartment….well, you get the picture. It wasn’t pretty.

I moved all my belongings with the exception of my bright-yellow Dodge Caliber. I sold her off to the highest bidder on Craiglist and embraced the world of public transportation. It was the cheaper option, and as a fresh college grad, well, I realized scrimping is important.

So I got settled into a new way of life in Chicago and during all the craziness of relocating, I finally paused and took a breath. Uh oh. I didn’t have a GI doctor in Chicago. Hmm. I wasn’t really sure what to do. So first, I called my GI back in Springfield, Missouri, to see if he could recommend someone in Chicago. I mean, surely there was some kind of crazy gastroenterologist network, right? A meeting of the minds that occurred once a year where everyone knew everyone? Knights of the...colonoscopy table?

I called and no dice. “Sorry, I don’t know anyone out there.” Fantastic. So, I thought, why not call the GI doctor in St. Louis? Once a patient, always a patient? I crossed my fingers. Again, no dice. “Sorry, you haven’t been to see us in a few years and we transferred your records to Springfield.” Wonderful.

It finally dawned on me that all my higher education might pay off in the way of research. I knew the insurance company and coverage that I had, so I put fingers to keyboard and started searching. But I went to the World Wide Web with some criteria in mind.

The dream GI doctor would have:

  • A doctorate to start, that’d be cool.
  • A serious background in education. I wanted someone who studied at great universities, who had certificates, passed exams, all the good stuff.
  • A determined spirit. Someone who continues to conduct research. I didn’t want someone who wasn’t hip on today’s trends in GI medicine.
  • An awesome review. I wanted to read the Yelp! reviews and see nothing but five out of five stars.

I wasn’t willing to scrimp on any of this. Using Blue Cross Blue Shield’s website, I conducted a pretty extensive search. I looked at locations, different practices, types of medical offices, and tons of GI doctors. Until I found the one who matched my stipulations. I swear a beam of light radiated from behind my doctor’s picture when I found him – calling me to my new GI home. I called and made an appointment for a few months out. Issue tackled.

I had my appointment and it was great. He wanted my extensive medical history and I gave it to him. The initial appointment took a good hour of me rambling on about myself and my experiences with UC. He made detailed notes, had some students talk to me about research studies, the works. I felt like IBD royalty. It was awesome.

But then, of course, he wanted to schedule a colonoscopy. And soon. He needed to see firsthand what was going on. No big deal, I thought. So I got it scheduled on the books right away. I received the paperwork and the prescription for MoviPrep and called the office to let them know I had the kit, and they asked if I had a driver yet. “A driver?” I asked. “Yes, someone to take you home after the colonoscopy.”

Oh, crap. I forgot about that minor detail. “Well, I was just going to take the subway or a cab home,” I responded. “No, you MUST have a driver. The only other option is doing the colonoscopy without any sedation,” was the respone. My heart tried to make a break for it. Colonoscopy without sedation? Hell. No.

So now what? I need a driver. Crap. Crap. Crap. My nearest relative lived five hours away; I couldn’t ask a work friend to burn their time off hours to take me to the colonoscopy; and I was pretty sure Tinder didn’t let you rent out driver dates. Maybe I could become quick friends with an Uber driver? I was panicking.

Well, in this great age of social media, I found an answer. There’s a GIANT Facebook group – Crohn’s & Ulcerative Colitis Worldwide Support Group – that I joined right after my diagnosis. So I figured, why not post in there? Someone HAD to live in Chicago with IBD.

So I posted and told my situation – I need someone to drive me to and from the colonoscopy and I’d be willing to pay for gas, or give a gift card, whatever. And the response was overwhelming. Tons of people were commenting, liking, and sending me messages trying to help me out. I couldn’t believe it.

This community never ceases to amaze me.

After a few messages, I got in touch with a wonderful IBD advocate who happened to live in the Chicago area. She invited me out to a CCFA support group. The support group got me in touch with another awesome IBD advocate, and he wound up taking me to my colonoscopy.

This process wasn’t super easy. I had to talk to a lot of different people, and that can be difficult when you have no idea who they really are. I made sure to do my research on those people who were reaching out – for legitimacy and safety’s sake. And, of course, it took a little bit of schedule arranging to get the ride to work out.

Not only did I gain a ride that I so desperately needed, but I found an incredible group close to home. And this group introduced me to Girls with Guts.

It’s funny how small the world can be sometimes and the benefits that are out there for people in our community.

So what this all boils down to – if you move out of state, or away from your initial support group – there are plenty more out groups and doctors who will welcome you with open arms.

In your search for a new GI doctor, make your list of necessaries and don’t scrimp on those! Having a GI doctor who gets you, cares about what’s going on with your disease, and is willing to do whatever he or she can do to help you, makes a world of difference. Then, find support groups in your area. There are awesome ways to do this via social media and the possibilities are endless. Someone near you deals with IBD and knows the struggles, I promise! Be willing to deal with some trial and error. You may not get it right on your first try, and I definitely didn’t get it right until I moved to Chicago. Find what works for YOU.

It’s okay to be selfish when it comes to your IBD.

Until next time you beautiful, talented, brilliant, powerful musk-oxes.

(Did I mention Leslie Knope is my hero?)