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- June 5, 2018 by AliWe Went LIVE
The post title says it all, right?
I obviously hate my new doctor.
I adore him.
After a few extra-frustrating days, I really needed a pick-me-up last night. I had booked this appointment with a new GI doctor nearly a month in advance, and I was looking forward to it with exceptionally high hopes. I have been desperate to find a doctor who would take the time to get to know me and my disease, and who wouldn’t just throw a cocktail of medications my way. Bonus points if he had good bedside manner, which is important to me.
After surviving a day at the office with plenty of stomach pain and discomfort, I headed up to The Mount Sinai Hospital for my 5:30 appointment.
I had prepared all my paperwork in advance, I had my insurance card ready to go, and I didn’t wear a belt because I knew it would get in the way when the doctor needed to push on all my sweet inflamed spots.
I was so ready to go.
And then I went to the wrong building.
Somehow, in my over-eager state of mind, I ended up in the hospital’s breast cancer center, which is not where I wanted to be.
After my initial fail to locate my doctor, or even his correct office location, I found where I was supposed to be and cruised up to the 11th floor.
Interesting little fact: I always find myself on the 11th floor of buildings. My first apartment in NYC? 11th floor. My office? 11th floor. The room I go to when I get Remicade infusions? 11th floor. New doctor? 11th floor. Very fascinating stuff right there.
Checking in for my appointment was quick and easy. Boom, here’s my completed paperwork. Boom, here’s my insurance card. Boom, here’s my $40 co-pay. Boom, where is your bathroom?
The bathroom in the waiting area was clean and had plenty of toilet paper. I guess that’s to be expected in the GI division, but I was happy with it.
All signs were pointing to excellent.
I got called into the exam room at 5:45 PM — not a bad wait for an end-of-day appointment.
The vital signs guy came in and said my stats were good. He wore turquoise sneakers. All more good signs.
And then I waited.
And I waited a little more.
Not long after 6 PM, Dr. Shah came into the room.
I hopped off my little waiting bed, shook his hand and liked his warm, friendly smile. I don’t know how you evaluate your medical professionals, but I think a good smile is indicative of a solid education and excellent IV insertion skills.
I gave him my completed paperwork with all my medical history, and he immediately complimented my “really impressive” handwriting.
Dr. Shah, you are my new best friend and my best-ever doctor, and I will write stuff for you all day in exchange for the good drugs. Whatever you want.
Seriously though, he was so nice right from the start, and as pathetic as it sounds, I need a nice doctor. My last doctor was a douchebag. Mom, I know you hate that word and you’re going to scowl because I just wrote it “in public,” but come on. That guy was the worst.
And Dr. Shah was kind and understanding and didn’t yell at me when I told him I like running.
Despite the appointment starting past 6 PM, Dr. Shah spent a full 45 minutes talking with me and getting to know me. He really seemed invested in my case right from the start.
Turns out, after three calls to my former doctor’s office requesting that my medical records be faxed over to Mount Sinai — one of which resulted in tears of frustration (shut up) — they never actually sent my information. So Dr. Shah asked me to walk him through every single symptom I’ve had since my diagnosis in 1992, and I happily obliged. I even added little funnies here and there to make the story a little more lively. Because if Crohn’s disease isn’t hilarious, I don’t know what is.
The whole time I was talking about my explosive bathroom experiences, I just kept thinking, “OMG he’s so nice.” He is not painful to look at, either.
I spend my workdays interviewing people and asking tons of questions to learn their stories, so when I’m put on the spot I like to think I’m overly-thorough. Apparently I wasn’t thorough enough, though, because once I finished my “Journey Through Crohn’s” tale, Dr. Shah politely asked, “Is it OK if I go back to ask some clarification questions?”
My heart melted a little.
The last doctor I tried out asked me two things and then sent me out with two different prescriptions — not having run a single test — and I was so discouraged. This guy? Total opposite.
I told him all about my history with Remicade, and I confessed all my medical secrets to him, like about the times in high school and college when my doctor prescribed me daily medications and I never actually took them. I also told him about the time I hated my doctor so much that I refused to go see him and instead went ahead and took Steroids on my own since I had them fully stocked in my possession.
He wasn’t mad. He said he “liked that I was telling him everything.”
A man who appreciates my flaws? What a gem.
He also did a really good job explaining certain things to me in a way no other doctor had. He said that since I’ve had so many flare-ups recently, even though I’m on Remicade, I may have built up antibodies to the drug, which does happen to some (unlucky) patients.
He said we basically have three options moving forward that he wants to pursue:
- Increase the frequency of my Remicade treatments (getting the IV infusion every six weeks instead of every eight weeks — sorry, job, see you never).
- Increase the dose of my Remicade treatment (instead of however many mg/kilo, I’d get a heftier amount).
- Add the pill 6MP in addition to the Remicade, which aids in long-term remission.
But he doesn’t want to do any of that just yet. First, we do tests.
After we chatted for a while, Dr. Shah checked me out (not at all in a fun way — lame) and pushed on my stomach to check for inflammation. I hate that part. It always hurts and I always say, “The pain’s not too bad” through gritted teeth.
The medical assistant came in to take a handful of viles of my blood, and I forgot to compliment his turquoise sneakers. I’m so rude.
In addition to testing my inflammatory markers (to see just how bad this flare-up is), Dr. Shah is going to be able to read my blood samples to see exactly how much Remicade is in my body right now. I thought that was awesome. My last treatment was four weeks ago, so he will be able to see how much of the drug my body has absorbed and if it’s too much, too little or just right.
Going forward, I’ll get Remicade at Mount Sinai (so much more convenient for me!), and so I asked the most important question of the day: “Is your infusion suite cool?”
I like to be comfortable when I’m sitting there for three hours. I don’t think that’s an outrageous request.
He told me that the chairs recline, and that “more than anything, we have really nice, knowledgeable nurses.”
Further sold on this guy. I love when people adore and give credit to their fellow workers and support teams.
Dr. Shah is fine with me running, and agreed that if it makes me feel good mentally, it’s good for me. So ha, all you crazy non-doctor “experts” who like to lecture me for working out when I’m sick. Suck it.
(For the record, I haven’t run in…a long time. Or engaged in any physical activity whatsoever. I even take cabs to work in lieu of walking to the subway. Rest Day Queen over here.)
I asked the doctor if being on Prednisone (the steroid) would affect my running. He said it won’t put me at risk for injury, but that it may affect my body’s ability to heal and repair wounds. So if I were injured now, it would be harder for my body to come back from that injury. But I’m feeling pretty good in the bones and joints and such, so that shouldn’t be an issue.
I popped my first dose of Prednisone last night and felt immediate mental relief.
I’ll be doing a month-long taper on the drug, decreasing my dose by 5 mg every four days. Fascinating stuff, I know.
I said I never wanted to go back on steroids after my last traumatic experience. Remember the rage? It was so bad. But I felt so awful all day Monday and yesterday that at this point, I’m semi-desperate. I will take anything.
I am also very interested in EPO and blood-doping, so if anyone has information about that, I think it’s a viable option for me in lieu of actually running and training in preparation for that whole marathon thing coming up.
Dr. Shah and I briefly talked about nutrition and what types of foods I should be eating, and while he didn’t specifically suggest Moose Tracks ice cream, I’m sure that’s what he meant to discuss.
He did, however, prescribe a “low residue” diet. No raw veggies for this girl. Mount Sinai has a nutritionist available to consult specifically with Crohn’s and colitis patients, which I also love. I accepted lots of reading material.
I have a follow-up appointment in three weeks, and from there we’ll do all the really fun stuff: MRIs! Colonoscopies!
Even though I gleefully took four little steroid pills last night, and spent a long time chatting with my favorite little guy…
…it was still a rough night of “sleeping.” I was restless all night — which is a steroid side-effect that I most definitely didn’t think would kick in after, um, an hour — and even though my fever only peaked at 101.7, I had some pretty legendary night sweats. Those sheets will be getting changed…
I tossed, turned, didn’t sleep very much and hoped to wake up at 5 AM feeling OK enough to run.
Great joke, right?
I did not, in fact, feel OK to run.
I’m trying not to get too down about the fact that I’m feeling too weak and in too much pain to do physical activity, but I’m countering my sadness by reassuring myself that this is what my body needs: rest. Time to repair. Time to heal. And then, when my body says go, I’ll friggin’ go. And I know my runs will be stronger as a result.
(Someone remind me of this in an hour when my damn Twitter feed is clogged with all your brags about incredible morning runs and spectacular sunrises. I hate you all.)
So that’s where things stand now! I’m steroiding, I’m resting, I’m spending ample time in the bathroom and I’m sweating more in my sleep than I might during a run anyway.
I’m very, very happy that I liked Dr. Shah and I’m eager to see what yesterday’s tests reveal. Dr. Shah seemed to really want to figure this all out and help me, and even though my body is still in a state of distress, I feel a great mental weight lifted.
Gotta start somewhere, right?