Chronic Illness: The Doctors You Already Know Can Impact Future Care

I have been thinking about something for a little while now.

When I was growing up, I heard my parents say a lot that it is all about who you know. Meaning, if you know people with a lot of connections, that will obviously come in handy if you are pursuing a job or trying to get involved in something for various reasons.

The anniversary of my ulcerative colitis diagnosis is coming up (July 6th) which has led me to think about all sorts of things; A lot of which is the course of events that occurred and what led me to them. I started thinking abut where I was now in terms of my medical status also.

Right now, I have seen and had a couple tests done by the top IBD Gastrointerologist at a major metropolitan hospital, have another coming up in a couple of weeks, and also have an appointment with a top Rhumatologist in a couple of weeks (also at the same hospital that my new GI is affiliated with.)

Long story short is I have found out more answers in the past two months with this new medical team than I have for years with others. I really believed for a very long time that all I was experiencing was “normal” or rather, not out of the ordinary for someone who has had the types of surgeries that my body has.

This has led me to think about how even in the medical world, in some cases, it really is about who you know. This GI has such a full case load and schedule that when I originally called to make an appointment, I was told he was no longer taking on any new patients. After a lot of hemming and hawing over this, I decided to reach out to my surgeon (since he had been acting as my GI for years) to let him know what was going on and ask for his guidance/help. I trusted him and he really listened and understood the complexity of my situation (both physical and emotional.) This doctor was my savior in a lot of ways when I was both inpatient and trying to manage certain situations from home. I would bet a lot of money that he never would have been in my life had my first surgeon never asked for his help on my third surgery. He could have requested anyone who specialized in what he does since I was never even supposed to talk to him following my discharge. My follow ups were all with my original surgeon. But, things changed and this doctor being in my life has been more help than I can put on paper.

My surgeon (who ended up becoming my primary colo rectal surgeon) and I had a very good, in depth conversation which led to him to asking me if I wanted him to reach out to this doctor on my behalf. I never asked about it or even eluded to it. I did not even mention the physicians name until my surgeon asked me who “the big guy was over there.”

As I said before, seeing this new doctor has been a game changer in many ways. I don’t want to jinx anything but it has been nothing but positive for me. Prior to seeing him, I saw another doctor in his practice who also made me feel like this was just “my life” and there wasn’t much that could be done about it.

She never looked deeper. She never looked outside the box.

Within ten minutes of speaking to the GI I am currently under the care of, he asked me questions that alluded to other things that another doctor had mentioned also. You could tell if anyone could put the pieces together, it would be someone as smart as him. He told me the next step (after my endoscopy) was getting in to see the best rhumatologist. The earliest appointment when I called in the beginning of June was the last day in August. I know it doesn’t seem like that long to wait for a great doctor and in theory, it isn’t too bad, but when you are suffering so badly and each day is merely getting by/existing, it seems like an eternity.

I spoke with my new doctor and explained to him how much pain I was in and what my quality of life was like and asked if at all possible, there was anything he could do on his end so I could see the rhumatologist he referred me to sooner than the very end of August. All I want is a diagnosis to be made, know what treatment there might be, etc. I just want to feel better so I can DO better. I hate who I am when I don’t feel well and am in pain.

But anyway, I received a phone call a week ago saying that the rhumatologist could fit me in early a little after the holidays. I was surprised given I know my GI has no say in her schedule but I did get the feeling from talking to him about her that she was a caring person.

So yeah.. it just made me feel thankful that I am pretty well connected with doctors given I desperately need the best of the best on my case, thinking outside the box (as Frank always says), in order to get me past this point – and boy do I need to get on the road to figuring some definitive things out ASAP ; )