Tag: Finding a GI

Tips and Tricks for Finding a New Provider

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It can feel like a bad break up. You build trust and rapport with a medical specialist who feels like family after overseeing your complex chronic health condition for years and then boom out of nowhere you find out they are moving away. Or maybe you’re relocating and trying to rebuild your dream team of health care providers. Whether this change is brought on by you or your care team it can feel a bit overwhelming to start anew.

My gastroenterologist of 8 years announced she was leaving on the Patient Portal in August. I was out running errands with my kids when a fellow IBD patient and friend texted me and shared the news. My heart sank and my stomach dropped, it never crossed my mind that she would ever leave. What do you mean SHE’S leaving? The doctor who finally got me into remission and has kept me there for nearly a decade. The doctor who oversaw all my family planning, pregnancies, and postpartum. The doctor whose rooted me on after each scope and always had an aggressive and thoughtful game plan no matter what twists and turns we face.

Unfortunately, this is the nature of the beast. I wrote a heartfelt “thank you” explaining my genuine gratitude for her efforts to always go above and beyond and all that she did to be extremely responsive and attentive to my needs. For the past 8 years when I send a Portal message, I always received a phone call from her—whether she was in clinic or on her cell. This time was different. This time there was radio silence and a one line canned thank you message from a nurse in the office. Just like that our worlds were not interconnected. I made a point to get my routine safety labs the Monday of her last week so that she could provide insight one last time. This time she didn’t comment on any of them and left September 15th without saying goodbye. It felt a bit like a slap in the face and stung.

As a chronic illness patient, we tend to feel a sense of comfort by care providers who help manage so much of our lives. This was a reminder to me that at the end of the day it’s a job for many and that even though we may feel that closeness, that bond may just be a façade. At the same time, I’ve also learned that some medical settings don’t allow doctors to communicate with patients, so who knows.

This week on Lights, Camera, Crohn’s I share tips for how I’m navigating finding a new GI that I think may help you along the way. I’m still feeling a bit lost and don’t know what the future is going to hold or what IBD Center I am going to land at, but I want to take you along for the ride.

The first steps to take

If a care provider is leaving the office or moving out of state, you will generally be placed with another doctor from the same team. This is not always a seamless transition though. Each doctor has a reputation. Some people want to be seen by a female care provider; others want a male. Years of experience and the college they graduated from and where they did residency may be of utmost importance to you. Just because the office says you can see “so and so” now, doesn’t mean you can’t speak up and advocate for what you’re looking for. In the realm of the healthcare world, you’re back to being “single” now and you can find who is the right match for you. Don’t feel pressured into anything. The long-term goal here is for a long-lasting relationship with a care provider who makes you feel like more than a number.

I have seen three different GIs in my 18+ years since my Crohn’s disease diagnosis. The first was incredible. I just so happened to meet him during my initial hospital stay, the day after I was diagnosed in the emergency room. He practices in my hometown (a Chicago suburb) and oversaw my care for a decade—even when I lived in Minnesota and Wisconsin while I was a news reporter and anchor.

When I moved to St. Louis in 2014 and my Crohn’s was flaring, I knew I needed to find a local provider. So once again, during a hospitalization for a bowel obstruction, I connected with the GI who was doing rounds at the hospital and loved his bedside manner. I felt safe and like I had found another great doctor. Unfortunately, while under his care I was very sick. We couldn’t figure out why my Crohn’s was so out of control. By the third hospitalization in 15 months, even while ramping up Humira injections to every week, and after several ER visits, his partner called me while I was in the hospital and said I needed an MRE to get to the bottom of what was happening. I did the MRE and was called back by that same doctor (not my GI) and he coldly told me over the phone that I needed a bowel resection—either the next day or in 10 days. He said I could go home and build up my strength. I chose to wait the 10 days. My actual GI never visited me in the hospital, never followed up…I knew it was time to drop him like a bad habit.

Enter in my most recent GI. Everyone raved about her. My colorectal surgeon and friends from the local Crohn’s and Colitis Foundation chapter all said she was the one to go to. So, I did…and now 8 years later I feel a bit stressed about starting the hunt for a great doctor all over again.

Amazing doctors can fall right into your lap, but sometimes you need to do some digging and research.

The behind-the-scenes work

At the end of the day, I find the most helpful advice comes from fellow IBD patients. There are several ways you can approach this.

  • Look up GIs in your area who specialize in IBD. This is key. You don’t want a run of the mill GI, if you have Crohn’s or ulcerative colitis you need a GI who specializes in IBD.
  • Check out online reviews and what people have to say about them.
  • Do a call out on your social media and see if anyone locally has any recommendations or personal experience. You want to hear the good, the bad, and the ugly. I have gained incredible insight this way. I had one fellow IBD friend message me about her experience with the provider I made an appointment with—and it made me a bit concerned. This week during my well woman visit, another IBD mom, who happens to work as a nurse practitioner in my OB’s office, told me about her awesome GI who is in the same group—so I plan to switch my appointment per her recommendation. This insight is GOLD.
  • Interview several GIs. Don’t feel pigeon-holed by only meeting with one possible new provider. Make a few appointments and see who jives the best with you. I have two appointments in January with two new GIs. My last clinic appointment was March 2023. I was supposed to be seen in October…that’s the soonest I can be seen.
  • Come up with a list of questions and see whose responses give you peace of mind and make you feel empowered to take on your IBD.
  • Be mindful of the office staff and how they treat you on the phone.
  • Make a pros and cons list of staying with your current GI team or starting fresh.
  • Decide if the doctor’s gender matters to you. I’ve had two male GIs and one female. I personally enjoyed having a female during my family planning and pregnancies, but now that my family complete it’s not *as* important to me, but still preferred.
  • To switch offices all your records and a referral will be needed by your current office, so make sure all your ducks are in a row and that the two offices have communicated. I made it clear with my current office that I am being seen by both IBD Centers, to see who is the best fit for me.

What questions to ask possible new providers

You may be wondering what to ask a new doctor or where to even start with your saga-long health history. We all know how rushed clinic appointments can feel. Here are some of the questions I plan to ask in January once we get the basic health questions out of the way.

  • How often will you be seeing me in clinic?
  • How often do you like patients to get labs? What kind of labs will you draw?
  • Will I keep my current medication regiment (ex. Biologic)? Will I stay with the originator/reference product biologic or are you planning to switch me to a biosimilar. Note: For you to be switched, your GI has to write a script for that to happen.
  • What days of the week are you in the clinic to see patients? If you have childcare or work conflicts, this can help so you know if their schedule/availability matches with your needs.
  • What hospital(s) do you treat at?
  • Are you apart of any research studies going on?
  • How often do you like patients to get a colonoscopy?
  • If I need pain medication to manage my symptoms, will you prescribe it? My last GI refused to—and I found that to be ridiculous.
  • Do you perform intestinal ultrasound here and if you don’t yet, when do you plan to?
  • If I run into insurance issues, will you go to bat for me and write an appeal letter or do what it takes to make sure I receive my medications on time?

Final thoughts

It’s jarring and takes a lot of time and energy to find a new provider but stay positive and know there are so many incredible gastroenterologists out there who genuinely care about patients and about helping our community out in any way they can. You are not civilly bound or married to your doctor—it’s not about hurting feelings or trying not to be a bother, be bold and do what’s best for you. I’m grateful to be in remission right now. My heart hurts knowing so many patients going through this same ordeal, while flaring, don’t have the luxury of taking their time or the privilege of living near an IBD Center with options. I always try and tell myself and I think this perspective will help bring you clarity, too—think of yourself at your sickest, lying in a hospital bed. Would you want that person leading your care? If there is any doubt or hesitation, keep looking for the right doctor for you.

How to find a dream team of specialists to take on IBD

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Living with an unpredictable and often debilitating chronic illness like IBD can be overwhelming. Being confident in the care team who leads the charge in managing your disease is incredibly important. Life with IBD is a marathon, not a sprint. The variables and challenges change with each year. You need a team of doctors who listen, advocate for you, see you as more than just a number, and guide you with personalized care.

This week on Lights, Camera, Crohn’s, we look at the steps you can take to ensure you’re in good hands and feel comfortable with the specialists in your arsenal. Much like a support system, having a care team of medical professionals who genuinely care for the IBD community makes all the difference in how you’re able to cope and make the best decisions for your health through all the peaks, valleys, and lows.

When you meet your GI by chance

Since I was diagnosed with Crohn’s disease in July 2005, I’ve had two chance encounters in the hospital with gastroenterologists (GIs) who ended up being my doctors for years after our initial meetings. The first time—when I was diagnosed in my hometown (Chicago suburbs), I hit it off immediately with the GI who was given my case. He ended up being my doctor for a decade.

Prior to moving to St. Louis in 2014, I was hospitalized with a bowel obstruction. My GI was 5 hours away, so I had to rely on a stranger to guide my care locally. The GI who looked after me in the hospital had a wonderful bedside manner and as much as I didn’t want to switch medical providers, I knew I would need to find a GI in Missouri. That GI looked after me for about three years, until I had my third bowel obstruction in 15 months, even after switching to weekly Humira injections.

At that point, one of his partners called my hospital room and spoke to the fact that I kept having hospitalizations for the same issue, but no changes were being made. He ordered an MRE (Magnetic resonance enterography) to find the underlying cause of the issue and see if bowel resection surgery was on the table. When the results came through, this doctor CALLED my hospital room, and casually told me I needed at least 10 inches of my small intestine removed. My actual GI never followed up. Never reached out. Never followed up with me after my surgery that ended up involving the removal of 18 inches of my small intestine, my appendix, and my Meckel’s diverticulum.

I knew after that surgery it was time for me to advocate for my care and get a different GI. I desperately needed to make a change. While it’s not easy to break-up with a doctor and it can be hard to navigate the medical provider landscape in a new city, I knew it was necessary. You must stop worrying about hurting someone else’s feelings and put your health—both physical and mental, first.

How I switched to a different GI

Whether you’ve recently moved to a new state or know in your heart it’s time to make a change. It’s important you feel empowered as you switch your specialists. When I had my post-op appointment with the colorectal surgeon, I asked him which GIs he would recommend. He gave me two names. I then reached out to my local Crohn’s and Colitis Chapter and while they couldn’t give me names of specific providers, they connected me with fellow patients who could offer up advice. I went to lunch with a few ladies with IBD and I was given the same name. That GI has been my doctor ever since (November 2015).

Since that time, I’ve been in deep remission. My GI is extremely proactive and aggressive with her approach. She leaves no stones unturned. She calls me directly if I write her and the nurses a question on the Patient Portal. I’ve had three healthy pregnancies and three healthy babies. She’s helped me navigate so much of the unknown and listens to my questions. She knows I’m a patient advocate who follows the research and stays on top of my health and rather than talk down to me, she takes what I have to say into consideration, always.

Discovering what matters most to you

Everyone has a different preference when it comes to the personality and approach of their doctors. Some prefer a gentle bedside manner. Others want no fluff and a direct, business-like approach. Some like a little mix of both. Think about what matters most to you. I’m a bit of a softie and bedside manner matters a lot to me.

Try and think of it this way—at your worst, when you’re hospitalized, what kind of doctor do you want leading the charge, walking into your hospital room, and guiding your care? If your GI is intimidating, lacks empathy, and is cold, it could add insult to injury and make your already dreadful experience that much worse. On the flipside, having a straight shooter who tells you like it is and doesn’t sugarcoat what’s going on can also be beneficial. Envision who you want by your bedside as you fight a flare and go from there.

There are GIs who do not specialize in IBD, so when you are seeking a new one, try and make sure their focus and expertise is Crohn’s disease/ulcerative colitis.

Navigating Medical PTSD with new care providers

Medical PTSD is real. Oftentimes due to the nature of IBD we are put into vulnerable positions because of where our disease presents. You may be asked at a research hospital if medical students can watch. You may feel uncomfortable or uneasy starting fresh with someone new. This is all normal and justified. Each time you have to re-tell your medical history you are forced to re-live your trauma. A friend of mine in the IBD community recently told me that her therapist advises her to write out your medical history.

This way you simply hand over a document to your care team that lays out your full story without any key details missing and without having to talk about memories and experiences that can be harmful to your mental health and well-being. Along with bringing a printout version, it can be helpful to upload the document to the Patient Portal. This takes the pressure off you to give a high-level explanation of your IBD journey and allows you to focus on the right now. The right now being the questions you have presently and what issues you want to tackle. Say goodbye to the elevator speech that tends not to include the nitty gritty.

Do your homework prior to the appointment by writing down your questions ahead of time. You can either have pen and paper handy to write down notes, ask the doctor if you can voice record the appointment so you have the details, or type the notes right into your phone.

Building your dream team

With IBD we all know a care team is made up of more than gastroenterologist. It can be helpful to ask your GI who they recommend within their hospital system so that all the records are readily available. By following up with a recommendation from your GI, you know the other specialist is someone they respect and someone who they would have effective means of communication with.

Trust word of mouth—but also trust your gut. If a medical provider feels dismissive, rushed, or like they aren’t listening to you, move on to the next. You are in the driver’s seat to build your team. Depending on where you live—I know it can be tricky and complicated to find accessible care and leading IBDologists. It may mean you have to drive a couple of hours every few months to receive the type of care your IBD demands. Ideally, your GI will be local so that when a flare up requires hospitalization you can go to the hospital and know who will lead your care. But not everyone is afforded that luxury. While I was finding my GI in St. Louis, I would contact my GI in the Chicago suburbs and keep him aware of what was happening. He provided me advice every step of the way and I’ll always remember how he called me from his cell phone the night before my bowel resection and assured me the surgery would be a “fresh start”. He was right.

While IBD is often out of our control, building your care team and finding specialists who do all they can to help improve your quality of life, understand your individual disease process, and constantly look to do more than status-quo, will give you the confidence you need when symptoms start to go awry or when you need to make major medical decisions about medication, surgery, and beyond.

IBD on the College Campus: Getting the Medical Logistics in Check

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Moving away from home and embarking on a college career is bittersweet. You’re excited. You’re anxious. You’re curious. So many emotions. The world is your oyster and you quickly discover what a small fish you are in this big world. For those entering college with an IBD diagnosis, life comes with many more challenges and fears. Medical concerns are a biggie. You are often forced to find an entirely new GI and care team that is local, in case you flare. You may have always counted on your parents to do your injections, now you may have to do them on your own. If you get infusions, you’ll need to find a new place to receive your medication, that may be out of your comfort zone and be complicated due to your course schedule.

That lack of comfort and consistency in care with a GI you know and have built trust with can be a scary chapter in your patient journey. IMG-0902Jennifer Badura’s son was diagnosed with Crohn’s while in high school. As a parent, she found her son’s transition to college challenging.

“It’s difficult to find a new place for getting lab work completed and a new place for infusions. Getting insurance, prior approvals, etc. along with the unknowns and anxiety about going to a new place for treatments and trying to get everything scheduled is tough.”

Dr Fu

Nancy Fu, BSc.(Pharm). MD. MHSc. FRCP(c), University of British Columbia

is a GI based in Vancouver, with research interests in IBD, infection and adolescent transition. She recommends making sure your primary GI connects you with a GI close to where you are attending school in case a flare requires urgent assessment.

“As a GI who sees adolescents, I make sure I am at least electronically available for my patients via texts or emails. Studies have shown young adults prefer to communicate via email as opposed to over the phone.”

Other recommendations that may be of help to you:

Get acclimated. Set up an appointment with a GI local to campus over the summer months or at the beginning of the school year, so you can build a solid relationship with a new physician. Keep your “hometown” GI’s number in your phone in case you’re flaring, hospitalized, or if your current GI has a question. hospital-840135_1920Use the patient portal to your advantage. Never hesitate to reach out if you have a question or medical issue going on. Listen to your body’s signals and don’t wait until it’s too late.

Make sure you remain compliant and manage your disease. Have enough medication on hand and have a game plan in place for how you’ll receive refills—whether it’s your parents bringing your prescriptions to you, mailing them to you, or you physically picking your medication up from a nearby pharmacy. laboratory-313864_1920Set reminders in your phone or utilize apps that track your symptoms and whether you’ve taken your medication.

Keep your prescriptions in a safe, undisclosed place. Let’s keep it real. Chances are there will be someone on your floor or even a roommate who may want to get their hands on your prescriptions, specifically your pain medications. Don’t flaunt them. Keep them hidden. Count your pills each day if you need to.

Discover local support and build a new support community. Being away from home and away from your personal support network is daunting. Check out the local Crohn’s and Colitis Foundation chapter near your campus and connect with local people who understand your reality. See if new friends from campus want to join you for a local IBD charity event. Not only will this be uplifting for you, but it will open their eyes and give them a bit of perspective about what life with IBD entails.

Click here to check out IBD on the College Campus: The Challenge of Academics.

The patient physician dynamic: 5 tips for finding your match

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Raise your hand if you’ve considered switching physicians. Raise your hand if you’ve driven more than an hour to seek care. IBDSocialCircle2While attending IBD Social Circle at Digestive Disease Week in San Diego, I listened to a panel with Dr. Neilanjan Nandi, MD, FACP and Dr. Aline Charabaty, MD about the patient and health care practitioner dynamic.

It was an enthralling discussion that opened my eyes to the medical care available to the IBD family. They talked about how physician and patient relationships should not feel like speed dating. Seek a physician who truly cares about how IBD is impacting your life, someone who wants the context behind your symptoms. Rather than a physician wearing a white coat and sitting in front of you, look for one who sits next to you and leaves the white coat off.IMG-2081

If you’re constantly feeling like your GI is being complacent with your care or that you are just a number, you may want to consider finding a physician who’s a better fit. When doing so, it will take some effort on your part. Here are some tips to make the transition a bit less stressful.

  1. Look for a GI who specializes in IBD. Not every GI is passionate about Crohn’s or ulcerative colitis, it may not be their specialty. Finding an IBD specialist will put you in the hands of a care provider who knows the ins and outs of your disease.
  2. If you’re making a road trip to attend the appointment, let the office know. Before you drive hours for an appointment, let the nurses in the practice know that this isn’t a run-of-the-mill appointment. Maybe they can allot more time.
  3. Have your records sent over before you go. Provide the new physician with your back story, so they can familiarize themselves with your patient journey before your first face-to-face.
  4. If tests will be needed, see if they can all be arranged in one day. Save yourself a trip (or two) and check with your physician to see about them getting preauthorization for any tests or procedures ahead of time. This way insurance is notified and it’s one less headache to deal with down the road.
  5. Build a rapport with the nurses in the office. Don’t be afraid to lean on nurses for support. They are often the “middleman” between you and the physician. I rely heavily on the nurses in my GI office. Nurse Penny and I are buds!
  6. BONUS TIP: See if a family member or friend can attend the appointment with you. As the patient, sometimes it can feel as though the teacher from Charlie Brown is talking while we’re sitting in an appointment. So much is being thrown at us, so much is being said—but we’re not comprehending what it means for the present and the long term. By having a loved one by your side, they can take notes—so you can focus on asking the questions you need answered. That extra set of ears and eyes works wonders.

IBDSocialCircleSwitching physicians and entrusting someone new with your well-being is not easy. Trust your gut (for once!) and advocate for care that makes you feel like you have a voice. Think about how you feel leading up to an appointment, while you’re face to face with the physician and the emotions you may experience on that drive home. If anything makes you feel less than or not heard, connect with fellow patients in your area to see who makes up their care team. Do research about IBD specialists within drivable distance and take the steps you need to feel like you have your best ally against this disease.