You’re No Wizard….

 

To my ears, the second knock on the door sounded like thunder…although the knock was actually quite soft. I think the anticipation of finally meeting the Wizard somehow heightened my senses and intensified every sound in the room. As the door slowly opened, my heart raced and I started to fidget in my seat. Unable to take it any more, I jumped up and walked toward the door to help open it faster…we have already discussed how patience is not really my thing. Well, before I could get my hand on the doorknob, a white woman with strawberry blond hair peaked around the door and softly said “I am so sorry to keep you waiting. I am Dr. Raffals”.

Friends, as I heard her speak her own name, it was as if all the air in the room left. Immediately, I felt unable to catch my breath. I was finally face to face with the one person, seemingly the only person, that could help me. Unable to speak, I simply smiled and extended my hand for a handshake. She looked a lot younger than her online photo, but she was definitely the doctor I came to see. I scanned her with my eyes from head to toe, trying to determine if this medical relationship would work.  

As Dr. Raffals made her way into the room, she shook my hand and said “so, I have reviewed your entire file…pretty interesting stuff going on. I also have spoken with Dr. Chaudrey at length. Listen, I think you do have Crohn’s, and just shared that with Dr. Chaudrey, but we will confirm. But, I think you have something else going on in addition to your Crohn’s.” Immediately I thought, “oh great, how is this going to work. You and your fellow aren’t even on the same page.” Dr. Raffals must’ve read my mind because she quickly said “I have shared with Dr. Chaudrey already that I do think you have Crohn’s, it is just not presenting in the way most anticipate Crohn’s will present…which is shockingly very much like Crohn’s”. We both let out a chuckle that broke the ice and lightened the air in the room. 

For some reason, while we laughed, I couldn’t stop thinking about Dr. Raffals’ words. Her words “something else” hit me like a knife to the heart. I sat back in my seat as I watched Dr. Raffals walk in front of me to her seat. “Something else”, I mumbled softly. “Yeah, something else” she said as she took her seat. As I looked down at the floor and started to feel defeated, I softly asked “then what else could it be?” Dr. Raffals sat on the edge of her seat, smiled and said “I think you have an evacuation disorder. If so, that is a easy fix…we have a program for that. We have a two week program dedicated to addressing evacuation disorders”. “An evacuation disorder?”, I asked, sounding like Dr. Raffals’ echo at this point. Dr. Raffals was clearly used to this type of reaction and calmly responded, “yes, I think you have Crohn’s and a evacuation disorder. I think your muscle will not allow you to go to the bathroom…which explains why you had to do 2 colonoscopy preps. Even when given colonoscopy preps, enemas and etc your body will not let you go. I think that because your muscle won’t allow you to go, the stool backs up into your colon and becomes impacted. The weight of the stool causes pressure ulcers in your colon which accounts for your pain and possibly the bleeding. The weight also cuts off blood flow to that piece of the bowel, which accounts for the limited ischemic colitis. Candidly, from a practical standpoint, it makes perfect sense.” 

Friends, I was completely blown away. Could the issue REALLY be this simple? I thought to myself, “is this really a thing? Surely this lady couldn’t be pulling my leg, could she?” I am familiar with shitting too much…that’s a issue I know very well. But, your body is capable of blocking the shit altogether, and that is harmful to? Who knew? Seriously people, who knows these types of things? Yes, I know there is such a thing called constipation…but this is different. This is kinda like the age old question of which comes first, the chicken or the egg? See, an evacuation disorder can result from chronic constipation, BUT, it can also CAUSE chronic constipation…which means this is not just run of the mill constipation folks. BOOM! 

I could not get my mind to slow down, it was moving faster than an 80s rocker on a acid and cocaine trip. Millions of thoughts and questions flew through my mind as I recited Dr. Raffals words. Surely looking crazy at this point because my eyes rapidly darted back and forth, I had to verbalize my thoughts. I scooted to the edge of my seat and asked “so, how do we find out if this evacuation disorder theory is right?” Dr. Raffals replied, “Dr. Chaudrey and I have ordered a colonoscopy with biopsy to once and for all look at this area in your colon no one could penetrate, an MRE, some blood work, and a test called a Anorectal Manometry. The Anorectal Manometry test will tell us if you do in fact have a evacuation disorder.” I continued, “what makes you think this is the issue?” Dr. Raffals quickly replied, “when you were speaking with Dr. Chaudrey you said something that struck us…that likely seems insignificant to most. You told her about how even with colonoscopy preps you are unable to go…that is bizarre but made us focus our review of everything.” 

Excited by Dr. Raffals words, but refusing to allow myself to be overly optimistic, I asked “well, what if it is not an evacuation disorder, then what”? Dr. Raffals’ smile immediately became a serious face, she looked me square in the eyes and said “then we will find out what else it is. You WILL leave here with answers and a game plan. I know you are scheduled for surgery on Monday to possibly remove a piece of your colon, and I don’t think we are there yet. I think this is a easy fix. Now, I want to be clear, I REALLY do think your Crohn’s diagnosis is correct and you will likely be stuck with those medications…and yes I know how bad you would like to come off them. But, I don’t think Crohn’s is causing this issue right now. I think it is something simple that we can fix without cutting on you. While you waited, I talked to my colleague who specializes in motility issues and we both agree that this is likely the issue. If we fix that issue, it resolves the other issues. To the untrained eye, this could look like a Crohn’s flare or even irritable bowel, but it is not. This is something altogether different..but your words to Dr. Chaudrey were key.” 

I softly pushed myself to the back of the seat to allow myself to take in everything I had just heard. This gave me an opportunity to mentally escape the conversation, and allowed my dad an opportunity to ask his questions. While he discussed his questions with Dr. Raffals, I mentally processed what I was just told. I said to myself “is it possible that I won’t have to have surgery? How did everyone overlook this issue when it seems to have just literally jumped off the page to the people here?” Again unable to keep my thoughts inside any longer, I blurted out “ok, let’s do what you suggest to get to the bottom of this”. 

Friends, Dr. Raffals’ thought was right. As she expected (although I didn’t know at the time), I failed each test miserably. The Anorectal Manometry, in particular, clearly showed an evacuation disorder. After seeing SEVERAL doctors, including 2 different surgeons, 3 hospitalizations, 3 colonoscopies, 1 CTA, 2 MREs, and 1 MRI, I had an answer and a game plan. Mayo did everything they promised to do. The Mayo Clinic was everything I had heard, read, and prayed it would be. 

Going into this Mayo trip, I was not a believer. I thought the Mayo doctors would be arrogant, rushed, and would give me the same run around I had received at home. I fully expected to be told I was faking or over exaggerating, and anticipated being sent home with a fluff solution that didn’t address the issue. Neither happened. Dr. Raffals, like every clinical professional I encountered, was professional, knowledgable, polite, and willing to take as long as needed to answer all my question and make sure I was completely comfortable with my proposed plan of care. More importantly though, Dr. Raffals and Dr. Chaudrey listened…and that is what lead us to the solution.

Friends, after being treated at the Mayo Clinic, I AM A BELIEVER. From the time I entered their building, the service I received was top notch. I was subjected to multiple procedures and test but EACH time I knew exactly why it was being done, had all my questions answered and NEVER felt rushed, and never waited longer than 15 mins for my services. I truly felt like I was FINALLY in a place that understood their patients…and the situation from their patient’s perspective. Finally I found a place where the agenda was TRULY patient centered. 

Dr. Raffals was no Wizard…she was far better. Unlike the Wizard who turned out to be a simple man behind a curtain passing off magic tricks as solutions, Dr. Raffals and the rest of the Mayo Clinic staff are true experts at what they do. I wasn’t given smoke and mirrors…I got real answers and a game plan.  So, if you battle with chronic illness and pain, or know someone who does, try Mayo Clinic. There is an actual place on this earth willing to take your concerns seriously…but more importantly there is a place willing to listen to you. Because Dr. Chaudrey HEARD me, she and Dr. Raffals were able to TRULY help me. 


19 thoughts on “You’re No Wizard….

  1. I read this with tears. To know that you were finally getting the treatment you deserved – both for your conditions and as a human being who is worth listening to – is amazing. I know the news wasn’t miraculous (i.e. still having to take the Crohn’s meds & such), but I hope it brings you some relief, physically and emotionally. No one I know deserves some relief more than you!

    Liked by 1 person

    1. Thank you so very much! Yes, I DEFINITELY got some relief emotionally for sure. I am optimistic that the physical relief will come soon…more optimistic than I have ever been. After having visited Mayo I am in disbelief that I accepted the medical care I had received to date. In my mind, given my persistence, I thought I had managed to squeeze out the best…I could not have been more wrong. The trip to Mayo changed a lot of things for me, but in a great way. All of my adventures seem to confirm that I should keep pushing my doctors, no matter how frustrating or exhausting that is.

      Liked by 1 person

  2. I was WONDERING what had happened at the Mayo Clinic, ESPECIALLY when you didn’t post for so long. Kindly DO NOT keep your loyal readers in suspense, ESPECIALLY when you have such GREAT news to share!! 😉

    It’s wonderful to know that there are places where expertise is combined with CARING and LISTENING to patients!

    I must say – your experience with the Mayo Clinic is esactly like what others have reported to me. Wow!

    Merry Christmas, indeed! And keep us posted!

    Liked by 2 people

    1. Yeah, it started out as giving people time to read…the I got sick. But, I was so surprised at the amount of people interested in my journey. So, you are absolutely right I will NOT force my loyal readers to wait that long again. I am still smiling ear to ear about my trip. While my body does not yet feel better…my heart is SO happy knowing that the biggest goals have been accomplished. This next part, in my opinion, is the easy part now that we know the issue. Merry Christmas to you as well!!!

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  3. I was WONDERING about what happened at the Mayo Clinic. Kindly do NOT leave your readers in suspense like that again, ESPECIALLY when it is such GREAT news! 😉

    I’m SOOO happy for you. There really is NOTHING like the REAL experts – and where those experts work in a place (and role model for their fellows) that expects such competence AND respect AND listening to patients!

    I must say, EVERYTHING I’ve heard about the Mayo Clinic is in keeping with your experience.

    Keep us posted!! And…Merry Christmas!!

    Liked by 1 person

    1. LOL. You know, I STILL find myself shocked that people actually read my blog…seriously. I received well over 30 emails asking me about what happened so it light a fire for me to write the ending. I never envisioned that so many people would care what I had to say…let alone read my thoughts and experiences on a consistent basis. So, THANK YOU SO MUCH FOR CONTINUING TO READ MY JOURNEY. Yes, you are absolutely right…NOTHING like getting an expert. I really wish everyone could have access to the level of care I received. That was the only depressing thing about the trip. I immediately started to think about people that are not as fortunate as I am that cannot afford to go to Mayo. Those people deserve the same type of care I received but will likely never get it. I feel like every doctor should have to work, intern or something with Mayo. It was mind blowing the things I saw and the standard of care.

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  4. I am soooo happy for you…..thank God you gave the Mayo a try….good for you…so have you had all the test?? or still in the process? Answers, how wonderful and to feel heard and have answers…YAY…..great post…and I am so happy for you….kat

    Liked by 1 person

    1. Thank you so much! Yes, all tests are complete I am just waiting for my date in the 2 week program. I am sooo very excited…especially to have a answer that does not involve surgery for me. I am so thankful that I was fortunate enough to get there.

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      1. Thank you so much and HAPPY HOLIDAYS to you as well. Yes, two of my prayers were DEFINITELY answered…three actually. I prayed for God to: (1) send me to someone that would finally hear me; (1) show someone what was wrong with me; and (3) give a way to fix what is wrong wit me without me being cut. All three have been answered so I sit here smiling ear to ear as I type. My heart is so full. While I still feel horrible, my heart is happy and I am more encouraged than I have EVER been.

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  5. What a wonderful experience! I will say that I have had mostly great experiences at both Georgetown and in the old days at Johns Hopkins. But then, I didn’t stump any of the doctors. I am delighted that you have your answer and hope that it leaves you able to better cope with the Crohn’s part. That’ll be easy peasy for you after what you’ve been through!

    Happy Holidays!

    Liked by 1 person

    1. Thank you so much. Yes, generally doctors are nice to me when my issues are straight forward. But, when they are rare, which is typically the case with my stuff, it is a whole different ball game. I was choosing between Mayo, Cleveland, and John Hopkins…I am so happy I chose Mayo. I wish everyone could have the experience I had and had the resources to do what I did…it was such a blessing.

      Liked by 1 person

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