Home > #doctorfail, News > Dear Rush University Medical Center… YOU SUCK, and here’s why.

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

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.

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Categories: #doctorfail, News
  1. Celeste
    01/03/2012 at 4:50 am

    Jo- once again, well done. You will be pleased to know I fired my GI last month and found one who not only supports my efforts with SCD but also has agreed to work in concert with my natiopathic physician and then went on to suggest I stop my suppositories because I’m feeling so good! No more $300 medication bills for me… just grocery bills. A nice trade I’d say.

    I appreciate how you have taken your health into your own hands and have supported the rest of us to do so. It’s empowering to read your successes and struggles. Thank you for your honesty and the thoroughness with which you write. The details really help.

    I did not have nearly the rough time you did but being sick sucks and was really scary and I too am grateful I can walk to the park with my son and not worry that I’m going to be too sick to go.

    – Celeste

    • 01/04/2012 at 3:16 am

      Godspeed as you continue your journey, C. 🙂

  2. 01/03/2012 at 4:55 am

    Amen! I was also told my best option was remicade and imuran. I said no, and had the doc look at me like I was crazy. 2 years later….I’m still doing great! Thanks for journaling. I think it’s important for us who are “going with our gut” in treating IBD to keep a record. Maybe, someday, someone will listen.

    • 01/04/2012 at 3:17 am

      Similarly, I love hearing success stories. After only 4 months of SCD and medication free, I’m nervous as to whether or not McFlare will pay me a visit now that I’m fully tapered off the predz. So far, so good. Will keep shooting for the stars.

  3. Apa
    01/03/2012 at 5:44 am

    This is an inspiration for anyone who is struggling with something….think things through, devise a plan, be courageous enough to stick to it, and good things will happen!

  4. 01/03/2012 at 6:09 am

    This is upsetting. I thought RUSH medical was better than this. They have a study going right now about the SCD that I am a part of. http://crohnsend.com/2011/06/become-a-scientific-pooperstar/

    • APA
      01/03/2012 at 9:28 pm

      I imagine that if they are doing a study, they are being academic and meticulous about it to get effective results and muster a good publication out of it. So as far as your study, it’s prob spot on–someone is funding it, and there’s an academic interest in getting a result–whether it’s that SCD is bogus or that it definitively helps. Otherwise, though, if you are part of the “farm-in/farm out” crowd of regular joes, good luck to ya if you don’t manage to find your voice through the havoc, like jo did.

      I was at a medical conference where the Rush big name GI’s spoke (along with the famous UofC doc, whose name needs not be mentioned, that’s how famous he is) that was sponsored by Abbot Labs (maker of Humira). All the testimonials in the brochure they passed out extolled the virtues of Humira (and Remicade.) And Abbot fed us a lot of food to be there (the goodies they had were not tummy safe either). As I saw everyone eating greasy meats, breads, sauces, and cakes/cookies/eclairs and as I listened to UofC doc saying that diet has no effect on Crohn’s (might have symptomatic effects, but no damage is done related to those symptoms) I felt really bad. I felt bad for all those people in the audience who felt they had no choice but to listen to these gods on the microphones. At question time, I KNOW that a LOT of people likely submitted questions on diet…at our table alone there were plenty of notecards on that topic handed to the moderator. Not one question on diet was entertained by the expert panel. I left there feeling a bit down, and not empowered. Although it was educational in terms of what drugs are out there, and on research that’s currently in the pipeline, I don’t think I would recommend anyone using a diet approach to attend one of these conferences.

      • 01/03/2012 at 9:54 pm

        APA, you were talking about University of Chicago Dr. David Rubin, were you not?

        I would like information on which conference this is. Is it open to the public?

        It’s time for some activism.

  5. Patrick
    01/03/2012 at 2:38 pm

    Wow, that’s horrible. I too thought Rush was better then that, but I would believe you above all. I would have thought they would praise your initiative and give you tools to add to it. Seems like any other hospital I’ve been to. Bl bla bla meds, bla bla diet doesn’t work.

    I’m still at the same week/month as you and progressing nicely. On Dec 15 I got my second nerve block but this one was directly into the damaged tissue. By Dc. 20 I was 100% nerve pain free! I’m now on day 14 of no nerve pain. Inflammation from Crohn’s is the only culprit left, but with SCD I’m not too worried about it. I just need to be patient.

    The nerve pain was the worst… Erratic, random, extremely painful and uncontrollable. But now… Peace. I can’t express how good this feels. It only took Doctors, 8 years to figure this out.

    I’m Gi free, immuno meds free and nerve pain free.

    Keep up the progress and the updates, we love to hear from you. Much health to you in 2012. This year is Our year!

    Patrick

    • 01/04/2012 at 3:18 am

      This makes me SO way happy, P. You should let Jordan and Steve know how well you’re doing- I think they’d be happy to hear it! 🙂

  6. JAT
    01/03/2012 at 7:58 pm

    Wow,good for you. I only wish I had said something as well in my situation. About a month ago I had a follow up check up with my new appointed GI at U of C in Hyde park, since my prior got a better job at another hospital and hit the road. I had only spoken twice to that doc. Never did I get one phone call prior to me having contacting them for the appointment. But , boy, did they want their money. That’s who I spoke with last year, the billing department.
    I sat in the office expecting my new doc and wouldn’t you know it, a student came in. Looked clueless and I knew he didn’t want to be there just by the look on his face. After waiting 30 minutes the doc finally comes in with the student + 1. Spent maybe fifteen minutes and said to just keep going the direction I was going and the case was closed. The whole time was spent me staring at the underside of his nostrils as he spoke down to me. I know everything and you know nothing little man. He might as well of had said that straight out. At least that would have been honest. I am never going back to that place, thats what it is to me now, just a place. I have been on the diet for about 2 years now. Had a small set back, I faultered, but got right back on the train and it’s been smooth sailing. I have cut my meds down from 3 pills 3 times a day to 3 once a day. Still debating on stopping them all together. My wife worries since I am going against doctors orders, but I feel great even though I am practically not on them now. Good mevements and all.
    It is so disheartining when you express the posotive progress you’ve made on the diet and they just look at you with a ‘how dare you speek to me of this’ look. I did mention that I was on the SCD diet and all he could do was mock it. That’s what closed the deal for me, this diet is a blessing, not a joke.
    Thank you so much Jo, It feel so relieved knowing that I’m not alone on this topic.

    • 01/04/2012 at 3:21 am

      Again, love hearing success stories. I realize how difficult it is telling a doctor “NO”– especially the most reputable doctors. I tried going to U of C- would you believe there was a 3 week wait??? NO thanks. Honestly, I had such a much better experience at rinky-dink St. Francis in Evanston. The doctors weren’t world-known, but they were GOOD, and they actually gave a damn about my well-being, instead of being a number for ignorant / snooty doctors that need a serious taste of humble pie.

  7. APA
    01/04/2012 at 2:50 am

    Yep you got it…Rubin, Dr. H, and another guy who I thought was Rush, but is UofC as well.. Below is the link to the facebook invitation. Went with my mom and my sibling and we all left it on a major low. Diet was mentioned, but only in the context of “there is no conspiracy in the med world to not study Crohn’s and UC through diet” and they stated that although what you eat def affects you, there’s not necessarily damage being done to you as a result of the food….and explained the difference between IBD and IBS. They stressed maintenance through drugs as being paramount, talked about the low risk of cancer and the cost/benefit of using drugs as maintenance, and not one question on “diet” was entertained in the Q/A session, even though our table alone submitted 5 questions. I’m sure we weren’t alone! Never going to one of those things again. There is plenty of drug info available online! I left there feeling like I believed in aliens or something by having hope in SCD or natural remedies as part of maintenance. The topic of discussion was :”Navigating through common misconceptions toward effective treatments. Topics include prevention, therapies, and alternative therapies and nutrition. Light refreshments served.”

    Alternative therapies and nutrition apparently missed the agenda! (May Abbott scribbled them off at the last minute! lol. It’s a conspiracy!!!!)

    http://www.facebook.com/events/154540607970188/

  8. 01/05/2012 at 12:13 pm

    Congrats Jo! Powerful read from an amazing person!

    Glad you had a wonderful Christmas that was drug free! Your an inspiration for all so keep it up. Here’s a cheer to more people taking control back from the doctors and guiding their health in 2012!

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