Month: December 2022

Colonoscopy Tips: My advice for you as a veteran Crohnie

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It’s safe to say every prep for a colonoscopy is a shit show. The show just looks a bit different each time. I completed another annual colonoscopy this past Friday, and the process still keeps me on my toes, even after more than 17 years of living with Crohn’s disease. As those of us with IBD know, it’s so much more than the prep. It’s the anxiety of wondering if our disease is active. It’s the worry about whether our IBD is going to act up and be triggered by the ungodly amount of laxative we are ingesting in one sitting. It’s the fear of going through more trauma getting an IV and dealing with nurses and a care team we’re unfamiliar with. It’s resenting the fact that you’re a young person needing a colonoscopy…and the list goes on.

I did my second-ever pill prep (SUTAB) this time. I find swallowing 24 pills to be easier than guzzling anything that tastes unpleasant. There was a bit of a monkey wrench in my game plan this time around, when my gastroenterologist’s nurse informed me over the Patient Portal that magnesium citrate saline is recalled. Because of that, my doctor created an additional prep to make up for that. For some reason, the 24 pills deemed worthy for the rest of society to take to get cleaned out isn’t good enough. I received instructions two weeks prior to my scope that quite frankly scared the bejesus out of me.

Along with the 24 SUTAB pills and 96-plus ounces of water, patients are expected to:

  • Take 1,500 to 1,600 mg of magnesium citrate pills, twice (This adds 12 pills to the prep, and they are horse pills)
  • 30 ml of Milk of Magnesia
  • Two enemas…yes, you read this correctly.

…the moment I received this news, my chest tightened, and I started to freak out. Regardless of the prep you choose (you’re “allowed to choose any one you like:”) …this is also “required”. Knowing this ahead of time made my mind race and I kept going back and forth about whether I was going to put myself through it or be my own advocate and go a bit rogue. It’s a bit daunting when the instructions are in CAPS and there’s the threat of needing to do everything over again.

Here’s what I did for my prep

It’s easy to talk a big game and say “there’s no way I’m doing this” …but at the same time, there’s a worry that looms that if you don’t, you may need to do another scope because you aren’t cleaned out enough. I’ve always been a bit of a rule follower, so it tends to take a lot for me to go against the grain.

I always do a self-imposed liquid diet to give me some buffer in case I encounter issues with the prep. My last meal is generally the Sunday night before a Friday scope. I allowed myself some crackers on Monday night, but other than that, I was strictly liquids all week. It’s brutal, but it always pays off in the end.

I bought magnesium citrate pills, the SUTAB pills, and the fleet enemas. I didn’t bother getting the Milk of Magnesia.

I took the first 1,500 mg (6 pills) of magnesium citrate, starting at noon the day before my 11:30 am colonoscopy. To me, it was a lot easier doing the pills than having to drink an entire bottle of magnesium citrate, which immediately causes me to vomit. I then timed out the 12 SUTAB pills, by setting a timer on my phone. I took one every 2-3 minutes. All you do is take the pills with 16 ounces of water and then follow that with drinking 16 ounces of water two more times over a couple of hours. I was “done” with my prep by 4 pm the day before my scope and wasn’t running to the bathroom too much.

I went to bed and set my alarm for 5 a.m. with the intention of doing the other 12 SUTAB pills + the additional 6 magnesium citrate. At this point, I was still on the fence about whether I would try an enema.

I walked downstairs in my dark house as my family slept and turned on a few lights so I could lay all the pills out on the kitchen counter. It was just me—all these enormous pills—and my thoughts. I got the 12 SUTAB down and after about 30 minutes I started feeling ill. I ran to the bathroom and vomited quite a bit…at the end I puked up bright red blood. It was petrifying. I screamed for my husband while I was on my hands and knees on the bathroom floor at 6 am. He ran down the stairs and could see how much anguish I was in. I immediately called my mom who is a nurse and she told me not to take anymore pills and that my prep was done.

My mom, who lives out of town, has been with me for every single prep since diagnosis, but this time around, she wasn’t since it’s so close to the holidays. Not having her by my side added a bit to the stress. I asked her if I should do the enema and had some choice words. She told me not to do it. I agreed. Hospitals are running low on enemas right now, so the instructions said to “bring an enema to the hospital in case you need it.”

Speaking up prior to the procedure

My scope wasn’t until 11:30 a.m., unfortunately it was very busy at the hospital, so I didn’t get mine until 1:15 p.m. When you haven’t eaten in nearly a week and your head is pounding from dehydration, every minute feels like an eternity. When the nurse finally got me from the waiting room, we got to the endoscopy suite and while I was still in my street clothes, she asked me if I had my enema with me. I froze in my tracks. I told her I forgot it on my counter (I purposefully forgot it on my counter) …and I proceeded to go into an explanation about how ridiculous it is to expect this of patients, how unnecessary and over the top it is and that I refuse to do it. She asked me if I did the enema earlier in the morning, I said no. To my surprise, she completely empathized with me and said she couldn’t agree more that it’s making all their procedures run late, that no other GI’s require it, and that she knows after 17 years with Crohn’s I know what I’m doing. She was whispering in cahoots with me, and it felt SO good to feel validated and heard.

When I told her I had difficult veins, rather than rolling her eyes or downplaying my fears, she listened and was so kind. She took a close look at all the options and ended up choosing a vein in my right hand. She got me with the first stick and immediately all my anxiety around the IV went away.

I informed my GI and anesthesiologist that I had vomited blood while doing the prep. They let me know that was from throwing up and it caused the capillaries in my esophagus and stomach to break and bleed. Because of that I was told prior to my procedure that in the event there was blood down below, an endoscopy would also need to be performed. Luckily that was not the case! I was given an antacid in my IV to help resolve any possible issues. I made the mistake this time of not taking my prescribed Zofran to prevent nausea. If you have a history of vomiting with prep, I highly recommend getting a script and taking this 30 minutes prior to starting your prep. In the moment, I was already taking so many pills I didn’t feel like adding one to the mix, but I wish I had.

The colonoscopy results

When I woke up from that amazing propofol nap I was thrilled when my GI gleefully walked into the recovery room with a huge smile on her face and told me that my small bowel and colon were “pristine”, that everything looked gorgeous, and that I was still in remission. The discharge notes state there is “normal mucosa in the entire examined colon” and that my “end-to-side ileo-colonic anastomosis” (where my small intestine was reattached to my large intestine from my bowel resection surgery in 2015) is characterized by “healthy appearing mucosa”. No biopsies were taken and the “quality of the bowel preparation was excellent”.

Remission is a complicated term and one I don’t take lightly. I reached surgical remission in 2015, after a decade of ups and downs. While I’m so grateful to continue the 7-year-streak of remission, I’m aware that tomorrow things can change. All any of us can do is focus on the right now and try not to dwell on what could be or what can happen. Remission is just a word—I didn’t do anything to deserve it, no one does. So much emphasis can be placed on being in remission, and I get that it can feel like a big deal—but IBD, whether you’re in “remission” or not is unpredictable, so there’s no sense in thinking you’re in the clear or invincible just because you’re told you’ve reached it. Remission does not mean you are completely free of symptoms.

My tips for going through a colonoscopy

  • Schedule your scope during an early time slot. Not only does this allow you to eat a lot sooner, but you’re also more likely to be taken right on schedule and not face any delays. For my 11:30 a.m. scope, I wasn’t at a restaurant until 3 p.m. I will say as an IBD mom, the 11:30 a.m. time was ideal in the fact I was able to get my two older kids ready for school and drop offs had already taken place before my husband and I left for the hospital.
  • Arrange childcare as you’re scheduling your scope. It’s challenging as an IBD mom or dad to have to worry about who is going to take care of your kids during procedures. Get the available dates for your colonoscopy and figure out childcare as you’re scheduling so there’s one less moving piece to deal with. My mother-in-law watched our kids from 9:30 a.m.-4:30 p.m. and it was comforting to know I had nothing to worry about while my husband and I were away.
  • Add in some buffer with a liquid diet for a few days. I’m not saying you need to go crazy with the liquid diet, but even doing one extra day of liquids will really ease your prep when it comes to what you need to pass. It also gives you a bit of leverage if things don’t go as planned when you’re trying to get it all down.
  • Listen to your body and do what you’re comfortable with. While there are guidelines and recommendations if you are vomiting, feeling sick, struggling to make it through the prep, just do what you can. Don’t push yourself to the brink of putting your health at risk. The SUTAB pills specifically say “Do not take other laxatives” … so how is a patient supposed to feel when their GI tells them to do a laundry list of additional laxatives?! The general population does the prep, without any add-ons. We should be able to do the same. I had to chuckle when I was told my prep was excellent, when I went off the grid and did what I felt was best. Before my procedure I smiled at my doctor and told her I did my best…and that’s all they can ask for.
  • Get labs ahead of time. The past few years my care team has tried to save me a trip to the lab and tried to get lab work through my IV. Each time, it’s been a nightmare. Last year the nurse in recovery stuck me 8 times and I was so dehydrated she never got any blood. She was unkind and rough and left me in tears. That was it for me. This year, I did labs the Monday before my scope. Having that checked off my ever-growing patient to-do list eased my anxiety and the nurse who did my IV said because she didn’t need to get labs through my IV, the needle could be a lot smaller—score!
  • Count the pills. I noticed this time I was given one extra SUTAB pill in my prescription bottle. I triple counted to make sure. There should be 24, total. Make sure not to take any extra.
  • Be cognizant of the time of year you get your scope. Get tests and procedures done prior to the end of the year when you’ve most likely reached your deductible, so you save money. I have a bone scan scheduled this week as well, crossing everything off the list when it’s covered.
  • Always remember gummy bears are a liquid. I share this year after year but so many people still seem unaware that this is the case. The day prior to a scope you need to steer clear of red and purple gummy bears, but you can eat gummy bears throughout a liquid diet and the day before your scope. The ability to chew something and have something sweet is a gamechanger. It’s a great way to chase prep that doesn’t taste good, too. This time around my sweet daughter took it upon herself to take all the red gummy bears from the bag so I wouldn’t accidently eat one…she made a pile of red gummy bears and proceeded to eat all of them.
  • Check about patient savings options. SUTAB is a bit pricier than other preps, you can save by going to http://www.sutab.com and printing off a coupon that brings the cost down to $40 with most insurances. Look into this regardless of what prep you do to make sure you’re not overpaying.
  • Feel empowered in what you’ve endured. Going through colonoscopies with IBD is not for the faint of heart. Chances are you have your own routine and know what works for you. Stick to it and speak up if something doesn’t sit right with you. Plan that post- scope meal ahead of time and reward yourself afterwards. You’ve been through a lot and deserve to recover and rest.

Til next year…

How to be your own best advocate during infusions

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You’re told by your gastroenterologist you need a biologic to treat your IBD and that medication is received through infusion. Thoughts race through your mind–what’s it going to be like hooked up to an IV receiving your medicine? It’s completely normal to feel anxious, nervous, and uncertain. I’ve done self-injections since 2008, and never have needed to receive my medication through infusion, but I know that’s not the case for many.

This week on Lights, Camera, Crohn’s we hear from patient advocate Jenna Ziegler. Jenna was diagnosed with ulcerative colitis in 2014 and has recently added enteropathic arthritis and a rare autoimmune non-alcohol-related liver disease called primary sclerosing cholangitis (PSC) to the list.

Over the years, Jenna has learned how to prepare for infusions so that she can walk into the outpatient center with confidence. Check out her empowering tips for doing so—whether your infusions are at a medical center or at home!

Do Your Prep Work

  • Know if you’ll be given Benadryl. Some biologics require pre-medications that help prevent adverse reactions. These meds may include Tylenol, prednisone, or Benadryl. Find out ahead of time if you’ll be given Benadryl. Knowing you’ll be sleepy at and after your infusion can help you decide if you’ll need a driver and if you need to make arrangements for the rest of your day.
  • Plan out the rest of your day. You may be tired after your infusion—especially if you’re given Benadryl! Weeks before your infusion, make proper post-infusion arrangements .Maybe you’ll want to take the day off work or arrange for childcare so you can take a long nap or reschedule that evening’s outing to another day. Jenna encourages you to schedule time in your calendar to recuperate after the infusion.
  • Know your dosing and required blood work. By knowing your dose and what labs that will be drawn, you’ll feel more in control of your day. Ask your doctor for your dose and what (if any) labs the nurse will draw at your infusion. Then, when you arrive, you can double check that these things are correct.

The Day Before Your Infusion

The day before your infusion is critical: make sure you’re drinking enough water! 

“Infusions require IVs, so it may ease your nerves to do everything in your power to make your veins as plump and visible as possible. I drink one gallon of water the day before my infusion. I chug 32 ounces every three hours and set reminders to keep me accountable. When I do this, my infusion nurse almost always gets my IV in with one poke! Also, a nurse told me that sodium retains water, so eating salty snacks the day before will also help keep water in your veins. Of course, run this by your doctor first!”

The Day Of your Infusion

Today’s the day! Here are three tips to help remove some of those infusion-day nerves.

1. Eat a proper meal. The day of your infusion, you want to fuel your body with healthy foods. This means a balanced meal with both protein and carbs. This is especially important if you’ll receive Benadryl or get blood drawn! 

2. Dress in layers. One of the best things you can do for yourself is make sure you’re comfortable for your infusion. 

“I find infusion centers very cold, so I suggest you dress in layers—just make sure you choose something where your veins are easily accessible. I tend to wear warm shoes, comfy pants, a long-sleeved shirt over a tank top, and a sweatshirt. Cozy and practical!”

3. Bring entertainment. Different biologic infusions vary in length, so if you’ll be there for a while, bring something to keep you entertained! Some of Jenna’s personal favorites are: books, journal, laptop, headphones, and snacks. If you receive home infusions, be sure to gather your supplies by your couch or the location in your house where you plan to receive the medication.

At Your Infusion

When you arrive at your infusion center, you’ll check in, probably sign some forms, and your nurse will show you to your chair. It’s okay if you’re feeling nervous. But remember, as the patient, you are empowered. Here are Jenna’s top tips to ease your nerves.

  • Ask for a warm blanket and pillow. Not only will this help you get comfortable, but placing a warm blanket over your arm will help prepare your vein for the IV.
  • Tell the nurse which arm/vein you prefer. Don’t be afraid to tell your nurse which vein you want them to poke. They’ll probably ask, but if they don’t, don’t be afraid to voice your preference.
  • Take your Benadryl slowly. If Benadryl is one of your pre-meds, they’ll probably either give you a pill or push it through your IV. If it’s via IV, ask the nurse to go slowly. Pushing the syringe too fast may make you feel lightheaded or nauseous. Again, don’t be afraid to speak up.
  • Confirm the info on your medication bag is correct. When the nurse is hooking your medication bag to your IV, it may make you feel better to see the label for yourself. Ask the nurse to show it to you, and you can personally ensure it has the correct patient name, medication, and dose. 

After Your Infusion

You did it! Your infusion is over. Best of all, you’ve already planned out the rest of your day, so now you don’t have to stress about your to-do list. 

“I encourage you to listen to your body—you might want to take a nap, take a hot bath, or have a relaxing night in with your family and pizza delivery. You’ve had a long day and you deserve to destress and relax.”

Remember, You Are Empowered

Over time, getting your infusions will become easier. Normal. Routine. And, one day, maybe even relaxing.

“I would have never thought that I’d find peace in my infusion days—these days that once made me nervous and stressed. But I now see my infusion days as relaxing, self-care days. This will come with time, and it starts with one thing: remembering that you are strong, empowered, and your own best advocate.”

Connect with Jenna:

Website

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Twitter

The Disability Showdown: How those with IBD in the US can get the benefits they need

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This article is sponsored by Atticus. All thoughts and opinions are my own.

Navigating federal disability like Social Security Disability Insurance or Supplemental Security Income with inflammatory bowel disease (IBD) can be complicated and overwhelming. Those with chronic illness in the United States face roadblocks when it comes to being on the receiving end of benefits. Did you know 80% of people are denied the first time they apply for federal disability benefits and an astounding 90% are denied during the next stage of appeal?!

This week on Lights, Camera, Crohn’s we hear from Sarah Ashmore, an attorney at Atticus who has Crohn’s disease. The firm’s core mission is to “tear down barriers between people in crisis and the aid they need.” The social safety nets that exist are quite difficult to access. Atticus strives to help people in the IBD community and beyond get the assistance they deserve.

Juggling a flare and disability benefits 

Since being diagnosed with Crohn’s disease in 2005, luckily, I’ve only needed to utilize short term disability through my former employer after my small bowel resection. In the moment, surgery recovery and dealing with Human Resources unexpectedly from my hospital bed was stressful. I went from speaking at an all-employee event to blacking out from abdominal pain in the bathroom and going to the hospital. When I left my work office in July 2015, little did I know I would not be healthy enough to return for more than two months. 

At the time, I was completely naïve to short term and long-term disability benefits and how to get the support I needed to fully recover from surgery and maintain my position at work, while receiving a portion of my salary. I was like a fish out of water, learning as I went. I received my benefits and didn’t have issues, but that’s often not the case. Luckily, I’ve never needed to explore this further, so I did not need to utilize Atticus’ services.

Sarah’s experience

Sarah was diagnosed with Crohn’s disease in 2019 after dealing with symptoms for a year that left her feeling weak and powerless.

“At the end of that year, my symptoms were so severe that I had to take short-term leave from my job and move in with my family to help take care of me: I was so sick that I couldn’t wash my dishes,” she said.

Sarah applied for short-term disability while awaiting her official diagnosis. Thankfully, once she received her IBD diagnosis and was put on medication, she was able to return to her old lifestyle and work.

“I think one of the biggest roadblocks is that applying for benefits requires organization, persistence, and patience and trying to access them on your own while dealing with the types of symptoms from an illness or injury that make it difficult for you to work can be extremely hard. I needed that support from my family and friends while I was applying for short-term disability and, for many people, applying for Social Security Disability Insurance (SSDI) is a harder and longer process.”

What makes someone eligible for disability? 

There are multiple options and they get confusing fast! You may wonder Which Benefits Do I Qualify For? Both short-term and long-term disability are often private insurance policies, while SSDI and SSI are provided by the government. 

Short-term disability, like what Sarah and I accessed, is generally private disability insurance that you purchased or was provided by your employer before you became disabled. It normally lasts 3-6 months and pays a percentage of your salary. There are also five states that offer short-term disability separately from private short-term disability. Long-term disability is very similar to private short-term disability, but it often pays a smaller percentage of your salary and, of course, lasts longer than private short-term disability. 

Social Security Disability Insurance and Social Security Income are both federal programs and, really, where Atticus can help. 

“Both Social Security Disability Insurance (SSDI) and Social Security Income (SSI) are federal programs designed for people with a diagnosed medical condition that will prevent them from working for at least 12 months. The technical eligibility (such as how much money you make or your age) is different for each program, as is what a beneficiary gets. The medical eligibility for both programs is the same: you must have a diagnosed medical condition that will keep you from working (although you can do some limited work) for at least a year,” explained Sarah.

The rules around eligibility are quite intricate and there are exceptions, if you are struggling to work due to your chronic condition or disability, make sure to talk to a lawyer about your specific situation to see if you’re eligible for coverage.

For SSDI a person should generally be making less than $1,350.00/month at a job, be younger than 66, and have worked about five of the last ten years. If you are awarded benefits, you get Medicare and up to $3,300.00/month depending on your work history. 

For SSI, a person should generally be receiving less than $841.00/month from any source of income and have less than $2,000.00 in assets (not counting things like your home) if you are single. The income and asset limits are a bit higher for married couples. If a person is granted SSI, they get Medicaid and up to $841.00/month depending on your sources of income. 

You can apply for both programs at the same time, and, in some cases, a beneficiary can be on both programs at the same time. 

“While there are general rules for eligibility, the evaluation is involved and there are exceptions to the rules, so please reach out to us at Atticus to determine your eligibility because we can offer individualized advice based on the specifics of your situation,” Sarah said.

Dealing with the disability denial and when to seek counsel

Getting an initial denial does not mean that you won’t get benefits or that you have a bad disability case. Don’t let this stop you from going through the process. If you get a denial, Sarah tells me you should request reconsideration within 60 days. This is when it’s optimal to get legal counsel involved. The lawyers at Atticus can walk you through the next steps in detail and get you connected with someone who can help you.

 “Ideally, legal counsel would not be necessary for getting disability benefits but, unfortunately, many people do need it. Although having a lawyer can be helpful at any stage of the process, if you are at the hearing stage, you are three times more likely to get benefits if you have an attorney or legal representative with you. Good lawyers will have the experience to understand what the Social Security Administration is looking for when determining whether to grant benefits: they should understand what documents you will need and what questions you will need to answer to help your application,” she said. 

Why Atticus is completely free to clients

All SSDI and SSI attorneys and legal representatives get paid on contingency, so they only get paid if they win their client’s case. If they don’t win, the attorneys (and Atticus) get nothing. The federal government actually sets how much an SSDI/SSI attorney can get paid so it is the same across the board: 25% of only the first check that someone gets from the Social Security Administration should they win their case, capped at $7,200.
 
“Atticus gets paid by the attorneys that we refer a case to the same way the attorneys get paid by the Social Security Administration. If the attorney or legal representative wins, we get 25% of whatever the attorney got from SSA. That is never passed on to the client (so the amount of money taken out of the client’s first check is always the same). Getting paid this way allows us to provide free advice and resources to folks we speak with whether or not they are eligible, want an attorney, or end up using our services,” Sarah explained.

Click here to connect directly with an attorney at Atticus.

Coming to grips with the emotional struggle of realizing you need help

The stress of life and career can make this entire ordeal feel endless. As we all know it can be humbling to have to express how sick you are to those who often don’t understand the severity and complexity of IBD. There’s no need to suffer. There’s no need to be a martyr. Recognize when you need to wave the white flag and realize needing disability, whether SSDI, SSI, or short term does not make you less than your co-workers or peers.

Much like myself, Sarah and I don’t consider our Crohn’s a “disability” per se, but we did know that we could not work or live the way we were when we needed support. 

“It’s a common theme we hear a lot from our clients. Especially if they don’t identify with the term ‘disability;’ or if someone feels like they are taking a government hand out after spending years working hard to make it on their own. SSDI is forced insurance designed for people who can’t work due to an injury or illness. Most workers have been paying into it every time they get FICA taxes taken out of their paycheck. It is designed to be there when you need it. If you would feel comfortable using private insurance, you should feel comfortable using SSDI. Asking for help can be hard but doing it can be so good for you in the long run,” she said.

Demystify the process of applying for disability benefits

Atticus’ goal is to get as many eligible people connected with federal disability benefits (SSDI and SSI) as they can. 

“We function as the equivalent of a patient navigator for anyone in the disability application process. We are like a primary care physician, but for legal issues: someone will often come to us and say something like “I have this medical condition or had this injury; I can’t work anymore, and I am not sure what to do next,” Sarah said. 

When someone calls Atticus for assistance, they will speak with an intake specialist who can help determine what benefits they are eligible for and recommend next steps.

If you want to continue the application process on your own, Atticus can provide resources and input on next steps for applying (for example, letting folks know they should get specialist care and then call back or apply).

“We give out our Guide to Applying for SSI to folks doing their initial SSI application. If they are not eligible, we can often point them in the right direction for other resources they may be looking for (for example, help with housing or signing up with Medicaid).”

If you are eligible and want legal help for the process, Atticus connects you with a legal representative or attorney who they think would be a good fit based on the specifics of their case, such as: location, case stage, medical condition, etc. 

“We only work with attorneys that we have hand-picked and vetted. Those attorneys and legal representatives don’t pay to join our network or sign up for a membership with us; we thoroughly vet every lawyer and representative we work with and form relationships with only those we trust and respect,” Sarah explained.

Testimonials from IBD warriors

Jeremiah: “I have been dealing with IBD for 13 months. Atticus was able to help me with my legal issues while I was too sick to fight for my own rights. I was able to receive the best representation while becoming healthy again. They fought for me and today I am receiving SSI and disability for my condition. These programs are dedicated to people like us, who are suffering. Now I do not have to fear the future or what I will do when I flare again. I’m able to focus on my health and live my life. I urge anyone to ask for help, it’s out there. Atticus is one phone call or e-mail away.”

Joni: “I was diagnosed with Crohn’s almost 2 years ago, but lived with IBD for years not knowing what it was. Treatment is not 100% as I still tend to get flare ups that usually put me in a hospital, missing work. With that and other health issues, I decided to apply for SSD, being denied twice, I reached out to Atticus to get legal help/representation. I emailed them and within an hour they reached out. By the end of the day, I had an attorney representing me. They’ve been a great and fast help! Very professional!”

Helpful resources

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

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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.