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?
MY GI doc is also at Mt. Sinai and I love him and I also get my Remicade infusions on the 11th floor there. The nurses there are great. The chairs are comfy. And they even have snack time!
Yay for a new Doc that cares! 🙂 I hope you start feeling better and get all the answers you need. May I ask how long you’ve had Crohn’s? (Not that the length really matters, the fare-ups are all the same no matter how long you’ve dealt with it.) Try and stay positive and you will be back to running in no time. 🙂
Yay new doc! I was diagnosed with Crohn’s when I was 7 years old. I had flare-ups every other year for a while, but since I entered my 20s I’ve had them far more frequently (like, um, nonstop in 2012). Optimistic for the future though!
Hopefully new doc can prevent you from having flare-ups every other year…. I feel your pain though. I’m in the middle of a flare and the new medication isn’t working just yet. I will cross my fingers and toes that we both start feeling better SUPER soon! 🙂
Ali- I’m happy you found a new doctor. I’m in the process of getting a new GI as well for my Crohn’s/Colitis (they haven’t determined it!) and I think we’re going to be MRI-ing at the same time…mine is in 3 weeks too. FUN! :s.
Hope the ‘roids kick in soon and you are back to running! 🙂
Glad you made it for the appointment. Looks like things are going well for you. Happy for you.
He sounds like an awesome doctor! so glad someone is finally listening and trying to do something other than fill you with drugs! fingers crossed this means a better, faster ali on the run soon!!! x
oh my gosh…happy that at last u met with an awesome doc and looks like u’ve got some ‘hope/help’ on the horizon!! i don’t have Crohn’s but suffered from a slew of other med issues and u’re so right: if u can’t make light and crack jokes at times like royally stink and really ‘aren’t funny’ then u’ll NEVER get thru it! love ur wit and hope that the med’s help!! 🙂
Ali, thank you so much for sharing your story and experiences. Can you share your steroid dosage? Just curious?? Also, we know all of the ‘un-fun’ side effects of the steroids but if it makes you feel any better, I felt best with my runs while taking them. I typically don’t go over 20 mg though. Good luck to you! I’m praying That the steroids help quickly, that your mind truly let’s you relax, and that your runs days are in the very near future.
Tiffany, a follower with the same passion and disease
I’m starting out at 40 mg/day and then tapering down 5 mg every four days. Hoping that’s enough! I usually start much higher.
I am seriously so glad I ventured over and read this post. I am supposed to be running the Chicago marathon in October and upon coming off of a 6-week break due to my IT band, I was diagnosed today with mono.
Lifelong illness? No, I’m not sure I could handle something like what you deal with, but it still put a damper on 🙁 I’m glad I read this post instead of eating my feelings…which could taste like Moose Tracks.
Ugh, I’m so so so sorry to hear that. Absolutely awful timing. Mono SUCKS. Take good care of yourself, drink all the water and rest. And yes to Moose Tracks. So much Moose Tracks. Sending you speedy healing thoughts.
Great news about the doctor. Here’s to hoping you’re back on your feet and running again soon.
I think a doctor’s bedside manner makes all the difference in the world. I had a scary, random, mysterious health problem last winter, and my doctor was incredible through it all: super thorough, understanding, and compassionate. When you feel like shit and are scared and confused, you need someone who knows what they’re doing and will go out of their way to make sure you’re feeling better. Hope this works for you!
He sounds like he could be THE ONE! I like how thorough he was.
Fingers crossed on the new doctor! I think bedside manner is really important (thank you doctor who introduced a disease by saying, “It’s not a big deal, it just might affect your fertility in the future.” THAT IS A BIG DEAL, thanks. Moving on.), it’s also important that he knows what he’s doing, and it’s great that he took the time to ask you questions and will get tests done (as unpleasant as a colonoscopy is…). Hopefully this one works out and you get some answers/relief!
I wish you were my doctor. Can you come hold my hand when I get my colonoscopy? Or, even better, while I’m prepping for it?
I’m glad you had such a positive experience with your new doctor. I hope he gets you exactly what you need. Good luck!
So so happy that you’ve found a doctor you like! Looking forward to hearing more good news from the doc.
I miss you.
I was so happy to see the title of this post! Yay Ali!
I am so glad that you found a good doctor!
YAY!!! This post made me so happy!! I’m so glad you found someone who will listen to you! Can’t wait to cheer you on at the NYCM!!!!
Hurrah for Doctor Shah. Great news!! Glad he is listening and asking questions and working with you, rather than working on you!!! A glimmer of hope, eh?? NYCM…here comes Ali!
I’m glad that Dr. Shah listened to you and seems to care about your health and well being. Your former doctor’s office should be providing you with a copy of your medical records. You are within your rights to get a copy of the entire medical file. You may need to pay copying fees, and they may not want to fax it, but you should be able to go to pick up the copies or have them sent to you. That doctor and his office suck — don’t let them make you cry, get angry instead. You have rights and the only reason you’re switching doctors is because they gave you marginal medical care.
I feel bad about not running or trying to run and having to stop — going to the doctor today to have my foot/ankle examined. I don’t know what the problem is, but I figured I should let the person who went to school for this kind of stuff tell me what’s going on. Maybe he’ll have a magic wand and I’ll be able to run pain free again.
Keep your head up. Think of Tyler’s cute little face and smile when you’re feeling down. Lucky for both of us, the NYCM is still a few months away.
So happy to hear that you have a new doctor that you actually like! I have gone through my share of GI docs and some are for sure the “D” word – (Sorry Ali’s mom…)
I am now on day 4 of Entocort EC and have been restless at night and not able to sleep. I gotta look up and see if that is a side effect of the drug. Never thought of it till I read your post.
Have you thought of having your doc test you for Osteoporosis as well? Only mention it because Crohn’s patients are prone to it (even at a young age). At the ripe old age of 35 I had a dexa bone scan done and the results were pretty bad – yep, I have osteoporosis in both my spine and hips. Just saying. It is worth bringing up with your new doc since he seems so on top of things and caring.
Get better so you can get back to running girl!
I’ve never been tested for osteoporosis, or even thought of it. Thank you for the tip — that’s good advice!
Sorry to hear about the restless nights. I hope the side effects quit soon and you start feeling better (and sleeping!). Hang in there!
I’m so glad you found a good doctor. I’ve had several awful doctors. I am so happy for you!
and by anybody soon, I obviously meant anybody else… wah wah.
I’m so glad you found a doctor that you like!! My brother was diagnosed with crohns when he was 16 and it took forever for him to find a doctor he likes. He still flies back across the country for his checkups because he doesn’t want to see anybody soon.
Steroids are no fun, but I’m so glad you’re starting to feel better!
Such good news. Glad you found him and are able to feel hopeful again!
Ali! I am so, so, so happy for you! And jealous… my GI appointment was the opposite. It’s tough to find a doc and when you wait months for an appointment, it gets very discouraging.
I hope Dr. Shah helps you get through all of this. He sounds amazing!
Keep your head up. You’ll be running again (consistently) before you know it!
Oh I am SO GLAD that this doctor is already working out so much better for you!! it makes such a difference when you can trust them and they actually LISTEN and help and work with your unique case, not blanket statement everything. This is awesome! And I am glad you recognize the need for your body to rest. Hang in there!
woo hoo! glad you found a doctor who LISTENS! so great when that happens. and that he’s not so bad looking doesn’t hurt either. I hope you both can figure it all out 🙂
So glad to hear you seem to have found the right doctor! There’s nothing worse than feeling horrible and walking out of a specialists office feeling defeated.
YAY! i’m so excited for you! good fit doctors are seriously so hard to find, i’m in the process of trying to find a decent one for my foot.
typically the words ‘ i need you not running at all ‘ send me right outta there.
hope he helps you, fingers crossed! hang in there!
so glad the appointment went well! answers and solutions are on their way!
I’m really happy for you Ali! I think this guy seems to have a good handle on what to do with you and it’s great to see you so encouraged! Hoping you are on the road to long term recorvery now!
This post actually made me smile at my desk!!! So happy you found someone who actually listens to you rather than assume. Good luck with the upcoming diagnosis / treatments!
Oh, that is so awesome you found a doc who isn’t a douchebag (I love this word, too, sorry Mrs. F.) I also understand the hate with the Twitter feed. I am sorry, but things are looking up! Hope to see you soon! More importantly, hope you FEEL BETTER soon! xoxo
As soon as I stop Crohnsing, I need you to take me on the QB. YOU’RE RUNNING!!!
Congrats! It’s always hard to find a specialty MD who isn’t a d-bag. My co-worker used to work at Mt. Sinai and she always raves about the GI docs.
Quick question- does your doctor only focus on IBD patients?
He’s a GI, so he does all gastrointestinal stuff, and actually some geriatric work.
Congratulations on finding a doctor who actually listens!! Isn’t it wonderful!? Yay!
I was in the same boat. I felt like I was always in tears when I visited my GI because I was so frustrated, but he’s so kind and caring and that makes a HUGE difference (he always apologizes when he the stomach pressing portion of the appointment arrives). I had my Remicade dropped from eight weeks to six last fall, had the dosage upped to the max amount for my weight in the late winter and two weeks ago was put on 6MP. This Crohn’s and colitis business is no fun! I hope this new doctor has some answers for you. And I hope he keeps wearing turquoise shoes! 🙂 Good luck!!!
I know that 11th floor office VERY well (I had two doctors on that floor who I visited quite often) and I also know the nutritionist there! Our lives run parallel again! I’m glad you found a doctor who listens to you and is helpful and wants you to get better. Looking forward to hearing how this all works out!
Haha. You guys seriously are twins.
Oh Ali I’m so glad to read this! It makes a huge difference to have a good, understanding doctor in your corner and I’m excited that he seems to “get” you. I hope you feel better soon and I’m so happy for you!
I am a resident at Mt. Sinai, and we are the best at treating IBD, if I do say so myself. 😉 This post makes me so happy – glad you finally found a doctor to partner with!
Yup. So far I’m a big Mount Sinai fan. You smart people do good work.
finding a good doctor is the absolute most incredible feeling in the adult to-do-list world. there are so many crappy ones, and i’ve often walked out of appointments not only poked and prodded physically but pretty emotionally roughed up, too. it has taken me years to find a good GP, and when i found one, i was excitedly chatting about it for days. (I’ve yet to find a decent GI doc, though. Too bad I’m not in NYC!) I’m psyched for you! Chronic stomach pain is no joke. I hope this guy helps get your insides back on track!