Tag: biologics

A Registered Dietitians’s Take: Diet vs Medicine for IBD

Leave a comment

Managing and treating inflammatory bowel disease (IBD) with medication is often necessary for those who live with Crohn’s disease or ulcerative colitis. But for many, it’s a difficult decision that often comes with pushback and worry. This week on Lights, Camera, Crohn’s we hear from well-respected registered IBD dietitian and ulcerative colitis patient extraordinaire, Stacey Collins, about how she breeches this subject with patients and caregivers and how she utilizes her own patient journey to help empathize with those who are struggling to take the plunge.

Holding space and helping patients accept their reality

When it comes to needing medication, oftentimes conversations are harder on parents or caregivers, than the patients themselves. Stacey tries to encourage caregivers to find the support they need to accept the reality of their loved one needing medication to have a quality of life.

She says, “If someone wants to work with me on their nutrition “instead of medication,” I try to understand where the person is coming from. Usually, it’s from a place of fear, or uncertainty, and I really affirm that experience and hold space with them. Medications, side effects, accessibility, and adherence…it can all be so…heavy. There’s plenty of room to hold those two truths: meds are hard. And they’re often necessary.”

Stacey says when having these conversations she always begins with listening and holding space and then she puts her clinical hat on to ensure that it’s understood that these diseases are progressive and inflammatory, and that science shows that it’s best to get ahead of the inflammation, often with a medical provider, rather than chasing down the symptoms and the inflammation while quality of life suffers.

“I see my role as a registered dietitian as supportive of both treatment goals: helping patients have a quality of life, while assisting with the inflammation. But, I can’t provide medical nutrition therapy without the medicine component, and since diet isn’t ultimately the cause of these diseases, it works best as a complementary therapy with the support of a GI team; not as a cure.”

If patients aren’t trusting of their GI provider, Stacey tries to encourage them to seek out an IBD-specific GI doctor, if possible, while ensuring there’s also frequent follow-up with their local GI team, if they’re living somewhere rural. She says a lot of these conversations are born out of not feeling supported by GI providers, so she tries to help patients find GI’s who specialize in IBD, who are that are a better match.

“I’m upfront about not feeling comfortable about using nutrition in lieu of medication. That puts a lot of non-evidence-based pressure on my job as a dietitian, removes a lot of joy from the experience of eating, and further perpetuates the stigma associated with medicine. IBD is not a preventative metabolic disease, and patients should never feel blamed for eating their way into an autoimmune disease diagnosis. It’s simply not true, and it’s harmful messaging.”

How Stacey’s IBD journey inspired her to become a registered dietitian
 

At the time of her IBD diagnosis, Stacey was desperate for anything to stay alive. So, when it was either steroids, a biologic infusion, or having her colon removed, she was thankful the outcome wasn’t terminal.

“I happily agreed to the meds without even thinking about it. Within a month, I felt like a “normal” college student again, and honestly the changes that I experienced within my body due to the disease itself (losing my long, thick hair in clumps from malnutrition; seeing my body change rapidly to look emaciated), were far more difficult than any side effects from the medication. I felt like it was very much a night-to-day scenario, and I was so grateful for the medications as a result.”

But once she started feeling a little bit better and opened up to some family members about her disease, she heard a lot of negative chatter about the aggressive nature of the IV meds that she had “chosen” and thought, “Hmm. Maybe I’ll try juicing and holistic wellness,” never mind the fact that she was 21 years old with no professional support in making that decision.

“I quickly ended up hospitalized and needing an emergency Remicade infusion (the good ole days when hospitals kept it stocked in their pharmacy). The attending GI doc gave me some tough love, and really took the time to explain to me how “this is lifelong” and “you can’t be late on an infusion, because your immune system will lose response to the medication” and that really clicked for me. It was a hard moment and a tough pill to swallow, but it was a lesson of “maybe my well-meaning family members don’t know what’s best for me, and I’m going to have to trust my body, this med, and this doctor.”

In the years after, she went on to lose response to medications, start new ones, and it was always a night-to-day scenario all over again.

“I think this black/white sort of dichotomy of my experience on and off medication helped me accept that this was my reality pretty easily compared to others’ experience perhaps where maybe they’re less sick and the meds (not to mention the insurance gymnastics required to obtain them regularly) might seem daunting and leave people thinking, “Do I really need this?”. I was able to truly see that meds (and a whole GI team advocating on my behalf repeatedly for access to them) absolutely are the reason I’m still here.”

The challenge of receiving infusions

Infusions were psychologically a little “icky” for Stacey at first. She went from being a young, fun college student on campus with peers one minute… to driving 5 miles away to an infusion center where she was the youngest by a longshot, usually next to someone twice her age receiving chemotherapy or dialysis, and then she would go back to campus and pretend like nothing had happened.

“My boyfriend at the time (now husband) and I had a favorite haunt: Homeslice Pizza in Austin, Texas. Before my diagnosis, we were there on a date, and I spent the whole time in the bathroom. This was one of those places where there’s only one toilet…so I’d immediately finish and get back into line for the bathroom.He was really kind and said, “It’s okay! We’ll take it to-go, and when you’re feeling better, we’ll come back and have a pizza day and celebrate!”

Stacey says they were both so grateful for the night-to-day improvement with medicine that they named infusion days “Pizza Days” and this gave her a reason to look forward to infusion days, instead of dreading them. Over the years, we started inviting our friends to “Stacey’s Pizza Day” everywhere we moved: from Austin to Houston to Oklahoma City, and her friends had so much fun celebrating her infusion schedule every 2, 4, 6, or 8 weeks.

Utilizing research to help back the need for medication

As a dietitian, medications are out of Stacey’s scope of practice. As a patient, she knows them to be helpful. She tries to connect patients to resources so they can make informed decisions for themselves with a GI team that they trust. Resources like the IBD Medication Guide on the Crohn’s and Colitis Foundation’s website are really useful, as well as IBD And Me if patients and caregivers are having some cognitive dissonance about finding a biologic that feels right for them.

“Then I’ll ask them about what their takeaways were. Sometimes, talking out these conversations really helps patients find useful, effective ways to communicate to their GI doctor, so while I understand that it’s not my role as a dietitian to provide guidance on medication selection, I’m happy to help patients sift through what sort of questions or concerns they need to express to their GI doctor. So often as patients we brush off our concerns or our fears because we don’t want to be a bother, and I really encourage patients to have these hard conversations with their GI provider; A good doctor will want to know.”

Why taking medication is not the “easy way out”

It’s fine to struggle with medications; medications can be hard. It’s not fine to feel shamed out of using them under the dogma of gut-health and over-supplementing, and unfortunately there’s a lot of misinformation in the IBD space of people professing left and right how they’ve “healed their gut” naturally.

“I feel like I’m uniquely in the middle of loving the science of nutrition and needing modern medicine to still be here. For me, it’s been damaging and debilitating to also make society comfortable with my need for medicine for so many years until I learned to let that go. Now I speak up when I can if it’s worth my energy. There’s nothing easy about needing medicine for life to stay alive, and the people who say otherwise just haven’t seen that in their life, and that’s okay. It’s not okay for them to think their experience can be applied to all people with gut health issues though. Would also love to have clarification on “gut health.” IBS? SIBO? Constipation? Nervous stomach? Gas? IBD? These are different things that can’t have the same, convenient solution.”

How we can rely on nutrition as a valuable tool in managing our IBD

Stacey sees nutrition as the shiniest, easiest available tool in a toolbox full of other tools: mental health, sleep, pain management/PT/movement, medicine, and surgery.

“Sometimes when I work with IBD patients, nutrition is not even the most important tool- it just depends on what’s going on in each person’s life. Maybe surgery is the most important tool, or it’s mental health. Different life moments with IBD will require different tools, and while my obvious favorite tool is nutrition, the other tools mean a lot, too.”

Nutrition is a tool that is compatible with all the other tools, and nutrition interventions might take some fine-tuning, mindset shifts, and some tailoring to each person’s lifestyle. But the beauty is that it can be picked up as needed, and that’s nutrition’s superpower: it’s a tool, and it’s also a bridge for connection, safety, comfort, and a quality of life within the context of IBD.

“I teach my patients individualized nutrition for IBD as the remissive/relapsing beast that it is, not just for what it looks like during the time that I work with them.”

Stacey’s advice for patients

  • Expect non-linear. Try not to compare. Feel the feelings, let the energy and the emotion move through you whatever way it needs to, brace for impact, and know you’re still here. Make room in your day to celebrate a good one!
  • Recognizing there can be two dualities that are true. You can hate needing medicine and be grateful that they kept you alive. You can feel deep sorrow for losing your health before you were old enough to acknowledge its presence and embrace this new, unprecedented, post-op reality, even though it’s different than what you expected.
  • Embrace your emotions. You can cryabout the reality of having needed an ostomy and be thrilled to eat a chocolate croissant in a moving car without pain BECAUSE the ostomy granted you a pain-free eating experience. You can be fearful about choosing a j-pouch and celebrate that it’s possible and wild to live with one.
  • Resenting the diagnosis is normal. You can resent your IBD diagnosis and be grateful for who you are with it (and thankful for all the people you’ve met because of your diagnosis!).
  • Lean on support groups and the IBD family. The support groups through the Crohn’s and Colitis Foundation have been helpful for a lot of Stacey’s friends, and for her personally. She’s a huge fan of Spin4 and Team Challenge. Finding a safe, welcoming community who gets your reality (wherever that may be!) can be powerful and uniquely helpful.

Putting Specialty Pharmacies on Blast (cough, Accredo)

Leave a comment

Ah, specialty pharmacies. Just hearing those two words probably makes you feel a certain way. I’ve been coordinating my Humira through mail-order shipments since July 2008. Nearly 14 years now. Since that time, I’ve dealt with several different pharmacies. Each job change or insurance shift has resulted in a specialty pharmacy update. Lucky for me, each transition has been seamless. Except for now. My husband’s company switched specialty pharmacy providers at the start of 2022. I went from using Alliance RX Walgreens to Accredo Express Scripts.

The first shipment went well, but my second month was a mess. I’ve ordered Humira monthly—163 times to be exact. This was the FIRST TIME I didn’t have my medication on time and had to do my injection late. This week on Lights, Camera, Crohn’s a look at the literal and proverbial headache countless chronic illness patients are forced to deal with month after month and my advice as a veteran Crohn’s patient for all specialty pharmacies moving forward.

Here’s how it all played out (This ordeal gave me a pounding headache)

I ordered my Humira over the phone like I always do, and I was told it would ship to me on Thursday, February 3 and arrive on my doorstep February 4. That day came and went. Radio silence. Crickets. No communication about a delay due to winter weather. Mind you, the roads were cleared, and the snow had stopped the day prior.

I called Express Scripts on Saturday, February 5th and spoke with 2 call representatives, or as they call themselves “patient care advocate representatives” …insert laugh. Both representatives were incredibly dismissive and told me conflicting information. The first told me the shipment went out FedEx on the 3rd…but that she didn’t have a tracking number. She insisted on giving me the number for FedEx so I could track down the shipment or go to a facility to pick it up. Um, no. I refused and told her she should be able to track it down for me and that this was not my responsibility. She told me I could talk with a pharmacist about my concerns about my temperature-controlled medication being out in the elements during the Midwest winter for five days.

She puts me on hold for 10-minute stretches, and finally after 3 times, I ask to speak to a manager. She tells me she has a manager on the line and that she’ll connect me through, but I end up on hold, again. Finally, she returns and tells me the supervisor can’t receive her call, so I tell her to just call me back directly.

While this is going on, I have another call going through on my husband’s phone in hopes of getting through to someone. That representative was even MORE dismissive. Did not apologize. Acted like I had an attitude and told me there was nothing she could do.

When the “Resolution Team Leader” called me back directly she informed me that shipments go through UPS, not FedEx. Wow. Good to know. Glad I didn’t waste more of my time trying to get through to a FedEx facility on a Saturday. She told me that unfortunately the soonest medication was able to be shipped to St. Louis through their Memphis UPS facility (I learned that’s where my Humira comes from) would be Monday, but most likely Tuesday (Feb. 8).

Here’s why this is so problematic

IBD patients and chronic illness “customers” of specialty pharmacies are on scheduled medications, in my case, a biologic. This isn’t something that you can just delay because ‘oh well, it’s sunny and 45 degrees, it will come in a few days’. Lucky for me, I’m in remission with my Crohn’s disease. What if I was flaring? What if this was a loading dose of the medication that I needed to receive? What if I was traveling and had planned to pack my injection with me? What if I had been off my medication to deliver a baby and needed to start it back up? What if I were pregnant and couldn’t chance missing a dose? There are so many complicated scenarios. This isn’t a pair of leggings I ordered off Amazon that can wait a few days. This is medication that controls a debilitating and unpredictable disease.

Here’s how Express Scripts and pharmacies can do better

Basic business etiquette with customers (aka your patients). Don’t belittle, diminish, or act like you could give two shits about the other person on the line. We are chronically ill people who are juggling a million balls in the air at once to function like the rest of society while managing our health. The last thing we want to do is waste our precious energy going back and forth on the phone and having to stress about getting the medication we depend on to function.

  • If there is inclement weather or a reason for medicine to be delayed, you should be sending text and email alerts. I was told by the Resolution Team Lead that I was only partially opted in for these—mind you, this was my second re-fill of medication with Express Scripts. The first time a patient sets up an order this should be discussed with a patient over the phone.
  • I’ve been receiving specialty pharmacy medication in the mail since 2008. This isn’t my first rodeo, but this is the first time I’ve ever had medication delayed. Mind you, I’ve lived in Minnesota, Wisconsin, Illinois, and Missouri this entire time and encountered snowstorms and blizzards each winter without delivery issues. The snow stopped here on a Thursday…but my medicine can’t come until a Tuesday through UPS? Mind-blowing.
  • Since I was not notified on this delay, I spent all day checking my front porch, anxiously awaiting the delivery so it wouldn’t sit out and freeze on my doorstep. If I wouldn’t have proactively followed up the day after my medication was to arrive, I would have had no way of knowing when my shipment was going to arrive or what happened.
  • The onus of this should not be on the patient. We’re paying THOUSANDS of dollars for medications. The burden of this should be on the specialty pharmacy who has the job of coordinating prescriptions and making sure they are shipped.
  • Talk with patient advocates from all disease areas to help you learn how to best communicate and coordinate care. This blog is free advice. If you want invaluable insight like this moving forward, be prepared to compensate patients to share their viewpoints that you wouldn’t otherwise have. Give us a seat at the table to inform you of the shortfalls and the wins so you know where the improvements can be made and where you are successful.
  • Be kind and understanding when doing these phone calls. Think about the patient who is person on the receiving end who is calling about medication with a laundry list of side effects. It adds salt into the wound when your experience coordinating medication shipments is so negative and unempathetic. We are not just numbers.
  • As patients our hands are tied. We must go through the specialty pharmacy allocated to us through our insurance. You have that going for you. Now you literally have one job… to do yours.
“Sincerely” want to help, yet never reached out as they claimed they would over tweets and direct message. That “empathy” is clearly all for show.

I tapped into the IBD community on Instagram and was blown away by the number of direct messages and comments from those who have struggled to get their critical medication through specialty pharmacies. This is unacceptable and eye-opening. Here are *some* of the stories.

“I will never use Express Scripts for my Humira, again. When I started it, I couldn’t walk or stand or do anything really because of my ankylosing spondylitis. They had the audacity to tell me I can expect my first shipment of medication in 1-2 months because there’s a lot of “processing involved.” They were acting like they were making the drug themselves. It had nothing to do with pre-certification. Everything was already processed and approved through insurance. Luckily, I was able to get my injections from a local specialty pharmacy the same day I called.”

“The number of issues I’ve had over the years with specialty pharmacies is ridiculous. My GI has an unlimited expiration/refills for my prescriptions, yet every year we must “renew” and it’s never at the start of the year. It’s always some random time when my shipment doesn’t go out as scheduled and the only reason, I find out is because I call and question the delay. They’re NEVER proactive. One of my most frustrating situations was a delayed delivery. It was supposed to arrive via UPS per tracking. The driver never showed. I called repeatedly and no one could tell me where the driver was. Eventually the next day I learned the driver left it in the truck and brought it back to the warehouse where I was told by the pharmacy to go and pick it up myself. Mind you it had already exceeded refrigeration time so there was no way it was safe for me to use. I then spent the next two days trying to get a new shipment processed.”

“From personal experience with Express Scripts and their specialty pharmacy Accredo, my Stelara is delayed every time. It’s gotten to the point that if they are going to make me late on it, I make them do same day delivery. They can make this happen if it’s not a holiday. Insist the medication gets delivered and don’t back down, demand for a private courier service.”

“I have to use CVS Specialty Pharmacy for Humira, they are absolute trash. I confirmed twice that my Humira would ship, and then it never arrived. I called and they took my insurance information, again, and told me it would take three days to process before I could re-order my medication. I waited and called again and then they told me my insurance had been denied. I was on the phone for six hours trying to figure out what was wrong. They finally re-shipped the medication only for it to be delayed by UPS and 8 injectable pens got too warm and had to be discarded…so I had to start again with another shipment! By the time I got the package, my dose was a week late.”

“I recently switched from my hospital’s special pharmacy to CVS Specialty Pharmacy due to my insurance changing and I didn’t get my Humira until 10 days after I was due for my injection. It was such a frustrating process and anxiety provoking.”

“Express Scripts issue with Humira. I spent 30 minutes trying to work out a $1,000 billing error on their part. After a half hour, they told me that they couldn’t fix billing issue the same day and that I would need to call back the following day and have the same conversation all over again.”

“Optium RX makes me cry at least once a year. Every year I try and beat the pre-authorization loopholes to get my medication on time and there’s always something new. Having to push my medication schedule is so defeating.”

“It’s a mess trying to work with a specialty pharmacy. I have never had a pleasant, easy experience with them. I’ve had four medications (IV and self-administered) sent to Accredo within Express Scripts over the last nine years. To this day, I have to spend at least an hour on the phone so they can run the co-pay assistance information…so for a bit, my co-pay was $2,000!”

“I have been on biologics for about a decade, and I think I could write a book about specialty pharmacy debacles. The latest being that as I was checking out on the phone, the rep commented on my insurance because it had my husband’s company (a popular brand). Thing is, he left the company 18 months ago and at that time I contact the pharmacy with my new insurance, went through the run around of changing insurance getting pre-authorizations, etc. They had been charging the old insurance the entire time. They attempted billing me $18,000 which I am still fighting. I’ve spent over 50 hours on the phone dealing with this and had many sleepless nights.”

“I went without my biologic for nine months because my insurance company through John Hopkins Hospital said I required prior authorization, when in fact I had prior authorization for the 277 refills that my prescription had. I had to advocate for myself to both my GI and primary care physician and they sent 378 pages of my medical records along with a 3-page email about my medication for it to be approved. To this day, I still have issues processing my orders.”

“At the end of the year, I received an email from Express Scripts that said Remicade would no longer be covered, and I would need to switch to the biosimilar, Inflectra. I called to confirm this, and no one could help me. I spent 8 hours over the next two weeks trying to determine if this was really the case. I had to call Blue Cross Blue Shield who then said I should speak to Express Scripts…who then transferred me to the Specialty Pharmacy, Accredo. I was then told by Accredo that I should talk to Blue Cross. It was the most frustrating thing. All I wanted to do was confirm if Remicade was not going to be covered and if it wasn’t what the cost of the biosimilar was going to be for me. Finally, a pharmacist assistant at the infusion center was able to help me.”

“My specialty pharmacy was late with my FIRST maintenance dose of Humira by 3 weeks. The pharmacy said they could only find the prior authorization for the loading doses and not the doses after. Then, my doctor sent me the copy of what they sent the first time, and my maintenance doses were clearly part of the prior auth. The pharmacy argued with me that my doctor didn’t fill it out correctly. They finally sent it, but accidentally sent it FedEx ground in July…and had to re-send it.”

“When I first switched to Humira, Express Scripts, said it wasn’t on their preferred list unless there was a good reason. I told the call rep I had gone into anaphylaxis. She said that I was going to need an actual reason or something serious. I told her I was going to need to speak with her manager because last I checked…not being able to breathe was serious.”

“My workplace changed insurance carriers and promised me that coverage would remain the same through Cigna and Caremark, with the specialty pharmacy being Accredo. Suddenly, I got a call that the Entyvio I take every 4 weeks is not covered at that frequency and also not covered at the Family Health Center where I’ve always received it. Naturally, I raised hell. Had to submit a new pre-certification which took almost 28 days to get approved, switched to a new private infusion center and abandoned my tried-and-true site, and spent more than 8 hours on the phone to do one simple thing: be able to receive the medicine I’ve taken for years. It’s unreal how insurance and specialty pharmacies just make decisions without considering the inconvenience and stress it puts on patients.”

“Specialty pharmacies are just an additional hurdle between a patient and their medicine. It’s like you’re playing a game of telephone and more players are added to the circle and increasing the odds of a miscommunication. When a problem arises you now have to make sure you smooth it out with health insurance, your doctor’s office, and your pharmacy. Oftentimes you don’t know where the problem arises in the first place because of all the finger pointing. I haven’t had a Remicade infusion since December 16th…even though I’m due every 4 weeks.”

“I had a specialty pharmacy send me my Stelara injections without ANY cold packs. Just in a cardboard box. I had not refilled it in 4 months because I was on Entyvio at the time so luckily, I wasn’t going to use it, but it was a mess. The company was so accusatory when I asked to return it until I told them there were no cold packs…shut them up real quick.”

“I called Accredo weeks ago to make sure my medication was going to arrive because my GI sent in a renewed script. I followed up daily the week I wanted to place the order, but they kept saying it was in processing and delayed. My prior authorization goes to 2024, my doctor did everything he could, yet Accredo still couldn’t tell me what the hold up was. I’m 33 weeks pregnant and I really don’t want to mess up the timing of my doses. Person after person says they have it handled, but it’s never the case. I feel like they just give the runaround to get you off the phone. It’s unbelievable how much time gets spent dealing with this. It feels like phone call roulette. It gives me serious anxiety every month.”

“When the new year started my specialty pharmacy would not accept my new Humira Savings Card. It took 10 phone calls and all parties, and it ended with an hour and a half call trying to get $5,000 reimbursed. The provider laughed when I asked then I had him call AbbVie and within 10 minutes the guy did a complete 180 and I was reimbursed. It’s scary to think what would happen if a patient didn’t fight back or speak up.”

“Your post about Express Scripts is triggering. My daughter, age 25, was diagnosed with UC at age 17. She is on our insurance a few more months. Express Scripts became our new online pharmacy a year ago. They’ve been horrific to deal with. She’s only on basic medications—mesalamine, Canasa suppositories and enemas. I dread the thought of what it might be like with them for more complex medications.”

…and there were SO many more messages that I received. Are you seeing a pattern here? This is ridiculous. It’s heartbreaking, frustrating, and sad. The incompetence and lack of care is comical. DO BETTER. I spoke with five different call reps/managers at Accredo and each time it was like I was calling for the first time. Take notes when you’re talking to patients/customers, so you don’t sound clueless on the other line and waste everyone’s time. You can at least pretend to care.

Advice for handling specialty pharmacy issues

Document, document, document! If you are having trouble with your specialty pharmacy, you should document each call and issue. Take note of the date, time, and describe what went down. Then, send a log of all the issues you’ve had to your employer and whoever oversees insurance so that they are aware. If HR gets enough complaints, they’ll look into a new pharmacy for employees.

Advocate for yourself and don’t back down. Be a thorn in their side. Tell them like it is and always ask to escalate the issue and speak to a manager. Get your GI involved and have them go to bat for you, too.

Check with your GI if you’re in a pinch. Oftentimes GI offices carry a couple of injections. You may be able to go and pick one up at the office if you need one. Always worth an ask if you’re in a tough position and don’t know when your medicine is going to arrive.

Contact the pharmaceutical company who makes your drug. One of my IBD friends manages a large practice in Boston. She advised me to contact the AbbVie Ambassador, which is a program available to patients for situations like this. They can overnight you a Humira pen to bridge the gap while companies like Express Scripts figure out their mess.

“The AbbVie ambassador program is a lifesaver for many of our patients when the specialty pharmacies fail! It is soooo frustrating. We see it all the time in our patients, and I’ve experienced it personally, too.”

Utilize social media. Having an issue with your specialty pharmacy? Head to social media (Twitter is best for this) and tag them publicly with your complaint.

Never reached out…

The Patient Experience: What the IBD Community says about Entyvio

4 Comments

Starting a biologic or switching to a new one after a drug fails you is a stark reality for many with IBD.  I personally have been on the same biologic since July 2008. Lucky for me, my body hasn’t built up antibodies and it’s served me well in managing and treating my Crohn’s disease. Recently, a woman with Crohn’s disease private messaged me on Instagram. She’s been on Humira (adalimumab) since 2006, but she’s no longer responding to it. Her gastroenterologist has advised she start Entyvio (vedolizumab).

Like anyone who deals with a drug failing them, she’s reached a level of comfort giving herself injections and knowing the ins and outs of the medication she receives. Now, 15 years later, she feels a bit like a fish out of water trying to navigate a new biologic and all the unknowns that come along with that transition, especially because she hopes to start a family in the next year.

After hearing from her and wanting to help, I went out on a limb and shared the following on my Instastory—to try and comfort her as she embarks on this new chapter in her treatment. “Hey IBD fam! Let me know if you’re on Entyvio and what your experience on it has been thus far. Looking to get info for someone who has been on Humira since 2006 and is making the switch after losing response to it. Appreciate your help and insight.”

The overwhelming response from the community

Several people wrote me directly about their experience with Entyvio—everything from tips and tricks to minimize side effects to how Entyvio has improved their quality of life or been detrimental to it. The response truly blew me away. We all know, IBD presents uniquely in each of us. So, one person’s experience with a biologic (or anything for that matter in treating Crohn’s or ulcerative colitis) must be taken with a grain of salt. At the same time, there’s a sense of camaraderie in connecting with those who use or have experienced your same therapy.

Since I’ve never been on Entyvio, I learned a lot in the process…and wanted to share my findings from these direct message discussions with you. Entyvio is known for its low side effect profile, as it specifically targets the gut. My hope is that this will help alleviate people’s concerns and help educate the community, should Entyvio be offered up as a possible treatment plan presently or in the future for you. (NOTE: I am writing this on my own accord—with NO affiliation or guidance to pharma). This is strictly created from IBD patient experience.

Infusion: Dosing schedule + timing

Generally, the recommended dosage is a 30-minute intravenous infusion, every 8 weeks. Depending on a patient’s response, this can shift to every 6 weeks or even every 4.

“Been on Entyvio since it was approved by the FDA. It has been very helpful since it targets the gut. I am on supplemental IBD meds, but I like that it’s a fast infusion and has given me my life back. It’s the longest I’ve ever been on a biologic, too.”

“It’s about an hour total to get the IV, wait for the med to be mixed, and have the infusion. I am noticeably tired the day of the infusion, but then bounce back quickly by day two. No other side effects at all. Entyvio has been a lifesaver for me!”

While some people saw improvement after the loading doses, Entyvio is known to react slower than other biologics. While most of us are used to biologics taking 2-3 months to work their magic, several people stated their GI warned them ahead of time that Entyvio could take 8 months to a year to be fully effective.

Side effects: The consensus among those who responded

Headaches/Dehydration/Fatigue

“I take Tylenol and Benadryl at every infusion because I found when I didn’t, I ended up with really bad headaches. I seem to feel better if I exercise for a little bit after my infusion, like walk 20 minutes or do 20 minutes on a bike. Real slow and easy. I often feel tired that day and maybe the next day, but after that I’m pretty much golden.”

“A lot of people get headaches after the infusion—they think from dehydration, so it’s helpful to ask for an extra bag of saline fluids during the infusion.”

“My friend and I both get tired after our Entyvio infusions. We both need a good nap after and then we feel fine. Hydrating the day before, during, and right after the infusion helps a ton.”

Hair Loss/Growth

“I lost a LOT of my hair while on this and had to take a large amount of prednisone for almost a year to get back on track because this medication. Please do research on this one! I did not do much and read a lot of people lost almost all their hair. Thankfully, mine grew back while I was pregnant. It was a big bummer! I’m on Stelara now and it works just as well as Humira did for me before my response to it also declined.”

“Been on Entyvio about 2.5 years and it’s the only drug to get me into remission! Was on infliximab (Remicade) before and became allergic and lost response. Minimal side effects with the Entyvio as well! If anything, I just noticed my hair doesn’t really grow the same.”

Navigating infusions and life

While the shorter infusion time is a plus, nothing beats the convenience of an at-home injection. At the same time, several patients shared the benefit of setting up an at-home infusion, so that’s something to look into versus going into a medical facility to receive your medication.

“I have ulcerative colitis and I’ve been on Entyvio for almost a year now. It’s the first biologic I’ve been on and it has helped a little, but it hasn’t been able to heal my rectum at all. I’m in a teen support group and one of the group leaders has had the same experience. After the starter doses, I was on every 8 weeks, but my drug levels were too low, so we switched to every 6 weeks and that didn’t do anything either. Since my symptoms were increasing, I was moved to every 4 weeks as of November. I honestly wish I were on Humira or another at home injectable only because I’m 18 and want to have a normal life that isn’t tied to needing to be home or to go the hospital every month, but it is what it is. The infusions don’t take long, but I do come home and sleep for the rest of the day. I started a pediatric clinical trial about a month ago since the Entyvio isn’t doing enough, but I still have to stay on the Entyvio.”

Pregnancy and Breastfeeding

For guidance on pregnancy and breastfeeding in regards to Entyvio, you can find helpful information at the IBD Parenthood Project and through the PIANO registry study. You can also connect with IBD Moms and Mamas Facing Forward, social media communities comprised of women living your reality.

Prior to planning to conceive, it’s always a good idea to communicate your family planning goals and dreams with your care team. Let your GI and OB know that you’re hoping to get pregnant 6-plus months ahead of time, so they are clear on what your expectations are. That way, you can put your best care plan in place, especially as it comes to staying on top of managing your IBD while you bring a life into the world.

“It was the first biologic that actually showed healing on my colonoscopy. I was on Entyvio my whole pregnancy, and now I’m breastfeeding on it.”

“I have been on all biologics and have had the best response to Entyvio. It put me into a 3.5-year remission (my only remission ever) and allowed me to have my son. Unfortunately, it does not target perianal Crohn’s, so I have had issues over the last few years. After trying Stelara, I had to go back to Entyvio because it’s the only drug that treats my luminal Crohn’s. It really is an amazing drug. No side effects for me, and my immune system is stronger than it has ever been—on the other drugs, I caught a million colds and would get bronchitis and pneumonia several times a year. Since being on Entyvio, I think I’ve gotten a cold a year (maybe?!), it’s a dream!”

“I have been on Entyvio for about two years now and it has been lifechanging. In terms of my ulcerative colitis, it has been day and night, and it has even gotten me into remission! I do feel really tired after my infusion and a little bit into the next day, but since I only get them every 8 weeks, that is a side effect I am more than willing to take on! I was on Entyvio for my entire second pregnancy and that was a breeze compared to my first.”

Be a proactive patient

Like many biologics and prescription drugs, there is a patient savings program available that you’ll want to check out. Learn more about Entyvio Connect here.

Helpful Entyvio-Focused Facebook Communities

Several of the people who responded shared they’ve had positive experiences and found support in Facebook groups geared for those specifically on Entyvio. Check them out:

Entyvio Mommas

Entyvio Warriors

Thanks to everyone who went out of their way to share their experience and help a fellow IBD warrior in need. Having this type of intel is good as gold and extremely beneficial in empowering patients as they make drug and treatment choices.

The future of biologics and the changes coming down the pipe

1 Comment

This article was sponsored by SmartTab. All opinions and thoughts are my own.

The future of IBD care and treatment is constantly evolving and there’s a lot of hope on the horizon for the patient community. Think back to the moment your physician discussed starting a biologic for the first time and how daunting it was to imagine giving yourself an injection or getting an infusion for the rest of your life. It’s a heavy burden to bear for many reasons.

This is where SmartTab comes in. SmartTab is a digital medicine company focused on drug delivery and improving patient care, comfort, and compliance. Their main application, the InjectTab, would give people the option of using the current syringe or autoinjector used to give biologic medication or instead have a person swallow a capsule that would deliver the active ingredients to either the stomach or the small intestine. This initiative is making waves in a big way in both the patient, pharmaceutical, and technology industries. SmartTab was recently named a Tech Crunch Disrupt 2020 Top Pick.

This image has an empty alt attribute; its file name is picture1.png

As someone who has been giving myself injections for over 12 years, this is music to my ears. My next question was what this means for those on infusions.

Robert Niichel, Founder and CEO of SmartTab, says, “We will start with the biologics deployed through a syringe and needle and then move to biologic infusions. Imagine if you take that infusion dose and instead take a smaller dose of the same medication as an ingestible capsule once a day. You now have reduced the amount of drug to a daily amount, side effects would go down because you’re not having to process this entire bolus and keep in mind that some of these drugs, no matter what it is, when you have an infusion, whether it’s to treat Crohn’s or receive chemotherapy, your body has to process that out through the liver or the kidneys. It’s stressful on the metabolism and the organs. Our goal, is that one day, regardless of whether it’s an infusion or an injectable, that you’ll take those drugs via an InjectTab capsule.”

This image has an empty alt attribute; its file name is profile1.jpg

Keeping patients in mind every step of the way

SmartTab is determined to limit the anxiety associated with managing diseases like Crohn’s and ulcerative colitis. The diagnosis and living with a chronic illness can be challenging to cope with, no matter how many years you’ve had it. It’s exciting to think what the future will hold for the IBD family.

“If physicians could go to people and say, we are going to start you on a biologic, you will take one capsule, every week, that’s a lot less of a burden than finding out you need to give yourself injections or spend hours with an IV getting an infusion. Your compliance goes up, patient outcomes, go up. At the end of the day, we’re trying to figure things out so people can lead better and more comfortable lives,” said Robert.

Getting InjectTab FDA-approved

SmartTab has the technology of the capsule finalized and they are starting a pre-clinical animal study next month. The InjectTab will inject an active ingredient into the side of the stomach.

“We will then do blood draws to collect the different levels of the active ingredients. Once that is complete, we will move on to human clinical trials and then onto FDA clearance, meaning approval of a device. Once we have that clearance, then we can combine our InjectTab with other active ingredients. Then we would seek out strategic partners to combine a prescription drug with our InjectTab. We would then do human studies.”

A lot of the heavy lifting for the actual technology has been completed, now it’s all about the clinical studies. Robert says the good news is that they’re not working on getting a new drug approved, since existing biologics will be used with the InjectTab technology.

“We believe that five years from now, if you take a biologic, you will no longer need to be doing a self-injection, there will be more options than syringes or needles to get your medication. You could just take a capsule. Whether it’s once a day or once a week, it will be as easy as taking your vitamins and moving on with your day.”

The cost benefits of a capsule vs. an injector

Right now, autoinjectors are typically hundreds of dollars. The InjectTab will range from $10-$50 a capsule, so right away there’s a significant cost reduction per use.

Robert says SmartTab is really counting on the insurance companies to look at this and say they’ll reimburse for the technology to deploy the drug because now patients are compliant and have reduced office visits and disease progression that can lead to hospital stays and surgeries.

SmartTab is currently in talks with several pharmaceutical companies, because that is the path to commercialization and making InjectTab a game changing reality for patients. Initially, the capsule technology will be available in the United States and then Europe. InjectTab will be geared towards the adult population first.

Life with IBD can be a tough pill to swallow, but the future possibilities surrounding InjectTab may prove otherwise. As someone who has given myself injections for more than a dozen years, this type of technology blows my mind in the best way. When my GI walked into my hospital room in July 2008 while I was battling an abscess the size of a tennis ball in my small intestine and he told me I had two options—Humira or Remicade, I was devastated. I didn’t want to give myself injections and I didn’t want to sit with an IV in my arm and feel sickly. It was a lot to process then and is still not always easy now. Hats off to companies like SmartTab innovating and changing the landscape for the future of IBD and beyond. As a patient, it means the world to me to see the tireless work going on behind the scenes that will change the future for those living with Crohn’s disease, ulcerative colitis, and other conditions.

This image has an empty alt attribute; its file name is humira-loading-dose-day.jpg

Interested in learning more about IBD innovations? Check out the virtual IBD Innovate: Product Development for Crohn’s and Colitis conference November 17-18. Register here.

Click here to learn more about Tech Crunch’s Top Picks for 2020.

Check out my podcast interview about living life powerfully with Crohn’s disease and the future of IBD treatment.

12 years on a biologic: What I’ve learned along the way

7 Comments

It’s been 12 years since I apprehensively went to my GI’s office with my mom, trembling in fear about the what ifs and worrying about the pain of the injection and how my body would respond. One dozen years ago I threw caution to the wind and knew I needed to take the leap. I trusted my physician. There was no other choice. I knew I needed more to control my Crohn’s. I realized my quality of life depended on it. My present life and my future deserved more. IMG-4785

I wish I could tell that frightened 24-year-old girl that a biologic would enable her to fulfill her dream of working full-time in television, that she would go years between hospitalizations, that she would meet the love of her life, travel out of the country, and have two healthy children…all while on a biologic.

This week—I share my 12 tips for navigating life on a biologic and what I wish I knew 12 years ago today.

  1. Needing medication is not a failure. Not everyone has the luxury of being able to “heal their gut” solely with food and that is ok. You are not less than because you need to be on a biologic. You are not giving up or taking the easy way out.
  2. Side effects are unique to each person. Just because one person responded beautifully to a biologic, doesn’t mean that you will. The same goes with horrible side effects. One person’s experience has nothing to do with yours. IBD is unique in each one of us. While some people get a “Humira hangover” and are in pain leading up to their injection, others like me, deal with no side effects whatsoever. Don’t base your experience off anyone but your own and remember to consider the benefit vs. the risk.
  3. Google is not your friend. Prior to starting a biologic or when you are on one, it does you no good to Google and read all the doomsday laundry lists of “what ifs” and horror stories. If you want to educate yourself and truly learn more, communicate with your physicians and connect with fellow IBD patients who understand your reality.
  4. The drug fails you; you don’t fail the drug. Time and time again, I see patients say… “I failed Remicade. I failed Stelara. I failed Entyvio. I failed Humira.” You did not fail anything. This is not a blame game and how your body responds to biologics is completely out of your hands. If a drug doesn’t help limit inflammation and control disease progression, it fails you and you move on to the next.
  5. Have a routine and be compliant. Life gets hectic and being on a biologic must become a part of your routine. It’s helpful to keep track on a calendar or to set up an alert on your phone. I’m old school and write R or L in my day planner…meaning “Right Leg” or “Left Leg”…you’d be surprised, you won’t remember which leg you last injected two weeks ago. I’ve done my Humira injections on Mondays since 2008. I’ve always liked that day of the week because it doesn’t interfere with the weekend and I get it out of the way. No one likes Mondays anyways. Biologics aren’t just something you skip or can forget like a daily multivitamin. For the drug to work you must be compliant and stay on schedule.
  6. You can get pregnant and breastfeed while on a biologic. The most common question I receive from women with IBD is “can I get pregnant on my biologic?” and “can I breastfeed?” …the answer to both of those is a resounding YES. To safely bring a baby into this world, the mama’s health must come first. You need to be a safe haven for your baby and keep your IBD well-managed. By going off your medication, you put yourself at much greater risk for flaring while pregnant and after you deliver. I was on Humira until 39 weeks with my son and 37 weeks with my daughter. To learn more about biologics and family planning check out the IBD Parenthood Project and IBD Moms. IMG_6037
  7. Communicate openly with your GI. Check trough levels every now and then, especially when you’re feeling symptomatic to see if your drug level is therapeutic, if your dose needs to be increased, or if you’ve built up antibodies and need to possibly start a different biologic.
  8. Think about your lifestyle if you’re having trouble deciding which biologic to try. Back when I started Humira in 2008, there were only two biologics for IBD on the market: Remicade and Humira. At the time, I was a morning news anchor and did not share my Crohn’s disease with the public—so choosing to do an injection in the comfort of my home vs. being in public getting an infusion was a no-brainer. Now as a mom of two, I’m grateful for that choice. You can’t beat the convenience of being able to do a 10 second injection on your couch. I have so many friends who spend hours upon hours getting an infusion—having the stress of lining up childcare and allocating that much time and resources to get my medication would be a struggle for me. Let alone needing to get an IV…I know I’m not alone when it comes to having bad veins! I understand you need to go with what your body responds best to and what your physician recommends for treatment…but if the decision rests on your shoulders, I would absolutely choose injection over infusion.

    IMG-4722

    Injections at home make chronic illness mom life a bit easier.

  9. Consider yourself “lucky” if you’re starting Humira now. The first 10+ years I was on Humira the injection was very painful. I know of people who had to take anti-anxiety meds just to feel comfortable receiving the injection. In 2018, the Citrate-free (pain free) version was released in the United States. Click here to watch my emotional experience doing an injection with the pain-free formula for the first time, while pregnant. This has been a game-changer for everyone on Humira, young and old. Self-injecting takes some getting used to, but it’s a hell of a lot easier now that you don’t have to deal with any pain. Chalk this up as a big win for the patient community—and if you haven’t made the switch to Citrate-free yet, make sure you do now!
  10. Drown out the Debbie Downers and the naysayers. You are going to come across friends and family who most likely have good intentions…but will question your decision to be on a biologic and offer useless, worrisome advice or stories of their friend’s friend who died from lymphoma or their boyfriend’s dad who had a bad reaction. I remember people questioning me about being on Humira when we were starting our family. We’re already worried enough, having to deal with the background noise can be the biggest pain of all.
  11. Be inspired by the possibilities. We’re all quick to expect the worse or struggle to imagine a life that doesn’t involve daily setbacks. Think of all the good that can come of this and the quality of life the medication can afford you with. Be patient with your body. Be patient with the drug. Be patient with yourself on this journey.
  12. Get preventative screenings. Stay on top of your appointments outside of your gastroenterologist. See your Ob-Gyn and get annual pap smears. See your dentist every six months. See a dermatologist and get an annual full body screening. Talk with your GI about getting “safety labs” every three months to keep a close eye on your results and make sure nothing is out of whack. See an eye doctor annually, even if you think you have perfect vision. Steroids can cause cataracts and IBD can cause inflammation around the eye. If your child has IBD, make sure to stay on top of pediatrician appointments. Being well-informed about all aspects of your health helps protect you from falling victim to any serious side effects.

BONUS: Reward yourself. Let’s face it. Giving yourself an injection or getting an infusion is not the most enjoyable experience. Think about how you can treat yourself when it’s over. Get some ice cream. Get a manicure. Order that cute pajama set online. Lord knows, you’ve earned it. If you struggle self-injecting, stare at a photo of a family member or friend that exudes strength and resilience, they will inspire you to be strong.

I’m not sure what the next 12 years will bring. Will Humira continue to be my go-to? Will there be a different treatment option? Only time will tell, but for now, I’m incredibly grateful that I’ve been able to stay on the same course of treatment for this long and I don’t plan on doing anything to rock the boat. My wish for you is that you’ll find a treatment that works its magic and shows you all that you’re capable of, despite your IBD.

Celebrating a major patient victory: Citrate-free Humira

49 Comments

I still remember the first time I felt the pain. Sitting in my GI’s office with the nurse and my mom. Fresh out of the hospital after having an abscess the size of a tennis ball in my small intestine. Knowing I had to inject myself with a painful biologic drug, four times in a row, for the loading dose. The feeling when the medication entered my body was like nothing I had ever felt before. It was an unthinkable amount of pain. It was overwhelming knowing that for the rest of my life, I would endure this same pain, multiple times a month…with no end in sight.

Fast forward more than ten years later. A total of 122 months, hundreds of injections. My reality as a Crohn’s patient just changed. IMG_2966It changed in a way that I never knew was possible. I have so many flashbacks of my journey with Humira. The tears as I felt sickly in my 20s sitting alone in my apartment and wondering why me. The dread, anxiety and anticipation every other Monday and the strength I had to muster up within myself to once again receive my medication. Holding the injection in my hand, getting in the zone and focusing my thoughts on brave family members and friends as I held down the plum colored button and felt the burn. The sad look on my son’s face as he looked in my eyes and witnessed his mama hurting.

Now, all this is a distant memory. Thanks to the Citrate-free formula developed by AbbVie and approved for adults and pediatric patients in the United States, this reality is over. A matter of days ago, I experienced my first pain free Humira injection. I had heard all the hype and excitement around it, but it was so difficult to fathom such a change in my patient experience. Here’s a video of me experiencing my first Citrate-free injection:

I’m here to tell you it’s completely painless. Less pain than a blood draw. Less than a flu shot. You feel nothing. The process, effectiveness and outcome are the same, but you don’t feel anything. It’s emotional and overwhelming in the best way. I cried for a good half hour after my first one, happy tears. Tears of joy from a woman who now knows her children will never see their mom struggle in pain. Tears of joy from someone whose eternally grateful for a medication that keeps a painful and debilitating chronic illness at bay. Tears of joy knowing that I will never have to feel that awful pain again. A pain that’s too much to put into words, that was part of my life for so long.

The sun is shining a bit brighter today. I feel a load has been lifted off my shoulders that I didn’t even realize had been there for more than 10 years. When I heard about the Citrate-free formula being approved and available in the States, I was excited—but, didn’t realize the true extent of what a difference it would make in my life. joy-2483926_1920

If you’re on Humira and living in the States, make sure you talk with your GI and specialty pharmacy to ensure your script is changed to “Citrate-free”. The extra leg work will be so worth it. It brings me so much happiness to know that young children on Humira will never have to feel the pain. It gives me peace of mind as a chronic illness patient to know that developments like this in treatment are possible and happening right now.

My call of action to doctors, specialists, healthcare teams and specialty pharmacies—please communicate this with patients. I’ve heard from countless people around the United States who heard about this for the first time from me. That’s not the way it should be. My GI gave me a heads up three months ago.

Fellow patient advocates, please feel empowered to share what this means to you and reach out to your individual communities and support networks, so people can get the ball rolling and experience this for themselves. Our voices are strong, and word of mouth is powerful.

Humira was approved for Crohn’s in 2006. I started taking the injections in 2008. Now, it’s 2018 and patients in the United States have access to the Citrate-free (pain free) formula. What’s next? Now, we can truly continue to dream.

Navigating IBD from age 12 to 22: How Emily landed her dream job at Disney

Leave a comment

Navigating inflammatory bowel disease as a pediatric patient brings on additional stresses, concerns and worries. For 22-year-old Emily Gavol, this was the case. At 12 years old, she was diagnosed with Crohn’s disease. EMILY2This week, a look into her life and how she took on the disease as a preteen, went to college out of state and landed her dream job in California with Walt Disney, after growing up in Wisconsin. My hope is that Emily’s story of perseverance, brings comfort to parents and fellow children and teens experiencing IBD as their life story unfolds.

What was it like to be diagnosed with Crohn’s disease when you were in seventh grade?

Initially it was a relief to know that there was finally an answer as to why I had been so sick for months. But it was also difficult to hear that I was diagnosed with a chronic illness that I had never heard of before. Being so young I didn’t really full grasp the severity of being diagnosed with a chronic illness.

How do you think the disease impacted your childhood and your perspective on life?

Getting diagnosed so young forced me to grow up very quickly. I had to learn to manage my symptoms while still attending school, doing homework and other normal activities. My perspective on life also changed, it became clear to me that health is something to never take for granted and appreciate it while you have it. Along with realizing quickly that the little things in life are not important. While most of my friends were worried about what to wear to school, I was just hoping I would feel well enough to make it to school. Additionally, this disease has taught me that there are many things that are out of our control and you just have roll with it sometimes.

How did your family and friends handle your diagnosis and how have they been there for you throughout your patient journey?

My family and friends were always there for me to lean on during my diagnosis and have been ever since. EMILY3While I know that my parents were scared, confused and upset that I was going through this, they never let that show to me. They were and always have been the ones that lift me up when I am down, and never fail to stay by my side through all I have endured.

How did it feel to “fail” so many biologics?

Over my nearly 10 years with Crohn’s disease, I have struggled to find a medication that works for a continued period of time. When I first failed Remicade, it was frustrating because I had been getting better, then backtracked to experiencing more symptoms again. That frustration has continued and morphed into annoyance, as I have continued to fail more biologics. It is frustrating to feel like all these medications are being thrown at me to knock down this disease and nothing seems to work.

What inspired you to leave home and attend college in Minnesota, despite your illness?

Since I was nine years old, I knew that I wanted to become an Imagineer with the Walt Disney Company and work as an Interior Designer. As I got older, I knew I needed to attend a good school that would set me up for success. I researched the best programs in my area, and the University of Minnesota was the best fit for me.  Their program and campus seemed to be everything I was looking for, so I wasn’t going to let my Crohn’s disease stop me from trying to achieve my dream.

What’s it like to attend college away from home, while battling a chronic disease? What roadblocks/hard times did you face?

Attending a school so far from home without a doubt was a big challenge. EMILY4And there were times when I wished I would have decided to go to school closer to home, because that would have been easier. The biggest roadblock was the physical distance, because it meant a lot of back and forth travel. Especially, during flare ups. I found myself needing to make the 4-hour drive home more often than I wanted to, which resulted in the need to miss more classes.  Additionally, learning to manage my symptoms completely on my own and having to adequately communicate with my medical team from so far away, was challenging at first.

How do you overcome the setbacks that come your way and not allow them to de-rail your goals and plans?

I have always been a very determined and strong headed individual. I will always do my best to achieve my goals and not let anything stand in my way. Despite, all the setbacks my disease has thrown my way, I have just rolled with the punches and kept pushing forward. I do my best and my best is all I can do.

Talk about what it was like going through the ileostomy and knowing you are getting a permanent ileostomy? How do you feel about it–why kind of emotions does it bring?

Going through my transition of getting an ileostomy was the most difficult thing I have gone through as a result of my Crohn’s disease. 20171123_182143002_1534121126326My health took a drastic turn and it became clear that I would need an ostomy sooner rather than later. I initially was very scared and upset that this was happening. I didn’t know what an ostomy was or anyone that had one, so I had little idea of what to expect going into it. By the time I was a couple weeks away from surgery, I was honestly ready to have it done.  I had been experiencing more symptoms and was ready to have the surgery behind me and be feeling better. I was doing my best to go into things with a positive outlook and think about it as a fresh start, but this was no easy task for me. It was an overwhelming and emotional couple of weeks following the surgery getting used to having and caring for an ostomy. I am not afraid to admit that I was scared to look at it and care for it myself after my surgery. But then I realized, this isn’t going to go away anytime soon, so I had to start doing things myself. The more familiar I became with everything, the more comfortable I was and began to realize that I was actually feeling better than before the surgery. This was hard for me to admit to myself, because I didn’t want to be put in the situation of having an ostomy or needing one for the rest of my life.  While I am now on the road to needing a permanent ostomy, it still has not sunk in that it will actually happen yet. And I don’t think it is going to fully sink in until that surgery happens.

You landed your dream job post college. Speak to what it’s like to live across the country, away from family and friends–while living out your dream job…with Crohn’s.

I am literally living out my biggest dream. EMILY5This is something that I never thought I would get to experience, and I think having Crohn’s has made me appreciate this opportunity more than I could ever imagine. The last year has been a wild roller coaster ride. I am just thankful to be here, because there were many times where I didn’t think I would even be able to graduate last year. My family and friends have been very supportive because they know how much this opportunity means for me personally and professionally. It is hard to be this far away from my main support system, but they are always just a text or phone call away. Additionally, my providers were very encouraging to me, pushing me to continue to live my life to the fullest and not let my disease slow me down. Hearing them say that to me, was really the last push that I needed to make this a reality. Knowing that my medical team wanted what was best for me, and was willing to work with me to get me where I am today, helped give me the confidence that I could do this.

Do your coworkers/did your college roommates know about your Crohn’s? How are people towards you when they hear?

In college I deliberately chose to live on my own with no roommates in order to give myself the best environment to thrive in.  Over the past few years of having different jobs, I have told my coworkers about my Crohn’s disease. I don’t usually share it right away, because I want people to get to know me for me and not just my disease.  When the time feels right, I do tell people about my Crohn’s disease. After I tell people about my Crohn’s, I always feel like a weight is lifted off me. Once people know my story, they have been as sympathetic as they can be.  There always seems to be the range of people who know a friend that has it, to the people that have never heard of it before. For those who have never heard of it before, it is a good opportunity to teach them about it.

What are your hopes for the future?

My biggest hope for the future is an easy one, a cure for this disease.  Aside from that, I hope I can continue to live my life and do my best to not let my disease stand in the way.

Advice for newly diagnosed patients?

My advice for newly diagnosed patients would be to find a good provider that you trust.  20130923_135906001_1534122952628It is important to trust their advice and recommendations, as scary as they can be sometimes. Additionally, try your best to not dwell on the negative things that are currently happening and think about what your future can hold. Always do your best to roll with the punches and keep moving forward, your best is all you can do.

What would you tell yourself at 12 years old…looking back at what you know now?

I would go back and tell myself that this is only the beginning.  Life will be a never-ending roller coaster of ups and downs. Some of the downs will really take it out of you and knock you so far down you won’t think you will be able to find a way back up.  And the some of the ups will be achievements you never thought were obtainable. But things will get better and there is always something better to look forward to right around the corner.