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Dear Rush University Medical Center… YOU SUCK, and here’s why.

01/03/2012 15 comments

Despite the solid reputation the Rush University GI department has, they can go suck an egg, and here’s why.  Cheers to a hospital-free 2012, hopefully.

Saw a GI on 08/15. Told me that I was fine, but I should take a couple of tests. Took a stool sample on 8/19. Calprotectin test, after insurance cleared, cost $452.77

When I got the results of the calprotectin test, I get a lovely voicemail from my doctor with the results: “Young lady, you have the single highest level I’ve ever seen. Congratulations, you have one flamin’ colon.”  THANKS Doc- for freaking me out about my flare even more than I was already freaked out- and also, for letting my super-high calprotectin levels serve as a laughable matter to you.  This doc wasn’t even sure what to do with me, so he transferred me to “super GI.” Made an appointment, but there was a 3 week wait to go see him, so I scheduled a 09/09 appointment.   I was so sick, I couldn’t last the 3 weeks- my flare and infection from Humira landed me in St. Francis Hospital on 09/01 .  In short: thanks for having the treatment process take OVER A MONTH, Rush Med Center.  Not sure it’s good practice to say “Hm, you’re so bad I don’t know what to do with you– so here, let me refer you to someone better than me and make you wait 3 weeks to see him.”

Stayed at St. Francis in Evanston for a week and they got my infection down, but I was still flaring, big time.  On 09/09 I left St. Francis to go see the “Super GI” at Rush that I was waiting for 3 weeks for while I got worse, and worse, and worse.  Super GI looked at my file for FIFTEEN MINUTES and determined, immediately, that I should go take Remicade, knowing full well that I reacted dangerously to Humira and developed immunity to it after less than 8 months!  In addition to the Remicade, he also wanted me to start Imuran and take it in conjunction with Remicade infusions.  In short, he wanted to pump me full of ALL types of drugs after a 15 minute diagnosis, and admitted me into Rush Hospital that afternoon to get on Remicade immediately.

I was going to take the Remicade, too.  It’s a good thing the staff effed up and made me stay overnight because they couldn’t get the infusion ready.  It started with the one med student interviewing me for over an hour about my history (she didn’t bother me too much, she was a nice girl).  Then I had to deal with annoying young med school students trying to “act cool” with me, when they were even younger than I was, and I could give two shits about their opinions  <<nor should they even offer their opinions, because they’re not even licensed physicians yet>>.

After all these young, grubby med-school kids’ hands poking my tummy for hours, along came “Dr. 2nd In Command to Super GI” who was the first person I started asking questions about diet to.  He immediately dismissed me and said, “After Remicade, you’ll be able to eat whatever you want.” And then I asked him what if I didn’t want Remicade- what about this Specific Carb Diet?  He told me that diet had no proven effect on Crohn’s, and he was going to set up my Remicade infusions.

This lead to young Dr. I’m-a-Dick scolding me a few hours later for trying to ask questions as he set me up for Remicade.  I pretty much threw him out of my room.

Dinner time! I was told that Rush has a “diet division” that focuses on people with special dietary needs.  I could even have a nutritionist help get me foods that were more comfy on the tummy. WRONG!  This “diet” division turned out to be a disgruntled cafeteria worker.  To quote “No, we don’t come up with no special diets, but we can send you a menu.”  There were no options for someone with IBD on that dinner menu.  I was sent processed turkey full of gravy, mashed potatoes, and a BROWNIE.  Which my husband ate.  After explosive big D that resulted from that meal, which I called “the last supper”- I was aghast, and decided right then and there, that Specific Carb Diet was the route I wanted to go.

In the morning, after they gave me an AWESOME breakfast of super-greasy-eggs-and-bacon, Dr. I’m-a-Dick came back with a more subdued approach in trying to get me to take the Remicade. I loved looking him square in the eye saying, “Thanks but no thanks- this isn’t the route I want to go.”  He ended up going and escalating my push-back with Dr. Second-in-Command-to-Super-GI, who was pretty understanding about the push-back on the Remicade. He said he’d allow me to leave the hospital without taking it, but I’d have to sign a waiver.

Enter annoying med-school GI students who were trying to “act cool” once again.  One of them actually had to say something along the lines of: “There’s this one med student I know with Crohn’s who knows that his diet makes him flare.  Sometimes he’ll miss school because he’s in a flare, but he drinks a lot anyway”  I laughed it off at the time, but inwardly I was thinking “AH yes, these are our future GIs- getting wasted, ignoring their own colons / feeling like crap, and telling people like me that actually GIVE A SHIT about their bodies that diet doesn’t help.  Thumbs up to med-student-that-talks-too-much for having diarrhea mouth for giving me the insight to finally realize that doctors are just regular Joe-Schmoes like me, that make stupid decisions and bad mistakes.

That one night hospital stay over at Rush cost me $520.53, after insurance cleared.  Yet I stayed at St. Francis for 8 full nights and only paid $865.90 out of pocket.  Rush supposedly had a “nutritionist” to help me determine what to eat, and that never happened.  St. Francis made sure to give me lactose free and gluten free meals!!!

So guess what, crappy Rush GI team? I’m not trying to sound cocky- because you could be right- I can flare any time.  But I will say this.  4 months on Specific Carb Diet.  Med Free.  Feel Great.  So thankful for how I feel that sometimes I’ll start tearing up, just because I feel so lucky.

But I also know that it’s more than luck. I haven’t cheated ONCE on this diet. I get pricked with a needle once a week and drive to the hospital to measure my blood- rain, snow, or wind. I make lunches for myself and cook every night, even as busy working professional.  I’m still excelling at my job and can now facilitate meetings without having to worry about stomach pain at inopportune times.  I quit drinking, even socially, and enjoyed a Vegas vacation with friends without one sip of alcohol. I listen to every inch of my body and now have learned to know the exact extent of my inflammation, based on how I feel.

I will say this, docs: I understand that most people don’t have the gumption / will power to do what I’m doing. But dammit, why can’t you give people like me, that are WILLING to do the work to avoid these drugs that we react badly to, encouragement to try following the Specific Carb Diet?  Why should the people that REALLY give a damn about their health and their bodies be given the chance to try a totally natural approach??

To anyone reading this that is unsure about their treatment options for their IBD- if you believe you have the strength and the gumption to try the Specific Carb Diet and make it work to your body’s needs… if you TRULY feel you can make that lifestyle change, then I implore you to give it a shot!! You have nothing to lose… because if it doesn’t work, the Remicades, Imurans, and Humiras of the world are not going anywhere.  Give it a formidable attempt- say you gave it your all!  If there’s a chance you can be like me- med free and so thankful to have your life back that you are on the verge of tears each day- then the success you taste will be sweeter than any processed, sugary crap that the diet forbids you to eat.

Categories: #doctorfail, News

DOCTOR FAIL PAGE IS UP- & I Encourage You to Add to It!

10/25/2011 1 comment

Here are all my “Doctor Fails” throughout the course of treating my Crohns, or Colitis, or whatever the hell it is I have. I’m sure some of you will read them and recall your own experiences in retrospect, like “Huh. Yeah. That’s what they told me too.”

The objective is to document all these #doctorfails, and others out there, and post em here, so that others dealing with IBD can tell their doctors their concerns should any of the following situations be prevalent to their respective condition.

If you have a story of an epic doctor fail, email me at jothecrohn@gmail.com , or click here and add your own #doctorfails in the comments section.

Categories: #doctorfail