Month: August 2022

What four educators have learned about life in the classroom with IBD

1 Comment

Life with IBD impacts our careers in many ways. Our disease can often dictate what path our future takes. As students, teachers, and families gear up for another school year, I thought it would be interesting to hear from educators who have IBD about what it’s like to lead a classroom while living with an unpredictable chronic illness. This week on Lights, Camera, Crohn’s hear the inspiring stories and perspectives of four unsung heroes who don’t allow their IBD to rob them of their career aspirations.

Sarah Rife has been a teacher for seven years, she’s also an IBD mom and an ostomate. She’s currently teaching eighth grade math in the Chicagoland area, but previously taught high school Geometry and Algebra.

“I have taught through many highs and lows Crohn’s wise. For the first 5 years, there wasn’t a single year that I didn’t use every single sick day I had (and then some unpaid days). I believe four out of five of those first years, I had at least one hospitalization where I missed consecutive days, as well. In this time, I was on four different medications and tried a clinical trial.”

While this was going on Sarah says she rarely ate at school and if she did, she stuck to 3-4 “safe foods” to help get through the day.

“I constantly taught with an escape plan in the back of my mind. You can’t just leave a room full of 28-32 kids sitting unsupervised, so I constantly had to think about things like ‘Who will I have cover my class?’ ‘What if I am gone more than 5-10 minutes?’ ‘What can they work on that they will know how to do if I have to step out in the middle of teaching them something new?”

Sarah is open about her IBD with students and their families and says having IBD has made her a more compassionate educator since she understands when students need to miss school.

“When I was younger, I was the student missing multiple days of school. I remember the things that some of my favorite teachers did that helped me to not stress when I felt like I had mountains of missing work. Whenever I have a student gone for health reasons, physical or mental, my standard answer when they come back is “Worry about everything else first, and then I’ll talk to you about what we can do to bring you up to speed in math class. Don’t stress, I will work with you on it.”

One year while being evaluated by her principal during a drop-in visit. He walked into her room, sat down, and started typing. He was aware of her Crohn’s, but Sarah panicked when she knew she needed to make a mad dash to the bathroom while he was in her classroom observing her.

“I ended up going over to him and asking “I really need to step out and use the bathroom. Do you want me to grab someone like I usually do, or do you just want to watch them since you are here” He agreed to watch them, and I ran out to go to the bathroom. Whenever I had to step out, I was also conscious of what time it was. This time, there were about 30 minutes of class left. In my head, I needed to get back ASAP because THE PRINCIPAL was in there and he was supposed to be observing me. When I heard the bell ring and I was still on the toilet, I panicked – I’m talking instant tears. I was able to finish and tried to hurry back to my room. My path crossed his on the way back and I started to say, “I’m sorry, I didn’t know I would be that long.”

Sarah says her mind was racing with crazy thoughts about her abilities as a teacher and what she was capable of. The principal could see she had been crying and more tears were starting to fall, and he interrupted her and said, “Sarah, I am not worried about it. This is your third year here and we know this happens. I am worried about what I see when you are able to be in the classroom and what I saw meets and exceeds our expectations. Please don’t worry about it.” – This reassured her so much more than even he will ever know, but the story replays in her head every time an administrator pops in her room for an unannounced observation – even 4 years later.

When Sarah taught high school, she was nowhere near remission, forcing her to be extremely transparent with her students.

“I told them that I had a disease called Crohn’s and that in a nutshell, my immune system was attacking itself, specifically my intestines. They knew that me having to step out of class and disappear to the bathroom was a possibility and witnessed it multiple times a week, sometimes in the same class period. They were also aware that often these bathroom breaks would result in pain, nausea, and exhaustion.”

Whenever Sarah would have an episode, she says the students went above and beyond to be empathetic and understanding.

“I had students volunteer to work out examples on the board so I could sit down, and they were extremely good at switching gears and changing the plan if I needed to do something with less walking around, standing, or talking – for example work on a worksheet instead of doing notes or bringing questions to me at my desk over me walking around offering help. I really do think high school students are more resilient and compassionate than people give them credit for.”

Since her ostomy surgery, Sarah’s life in the classroom has changed for the better.

“I feel like a completely different teacher. My energy isn’t nearly as much of an issue, I can teach without constantly having an escape plan or worrying how long I’ll be stuck in the bathroom, I can eat lunch at school like a normal person, without worry or only packing the same 3 things, and for the first time in my teaching career, I had paid sick days left at the end of the year. I had a chance to worry about the content I was teaching first and my health second, which I had never been able to do in the past.”

Sadly, this past week, Sara’s ostomy leaked while she was in the middle of teaching 30 thirteen-year-old students. Luckily, she works less than one mile from home so she yanked her shirt down as far as it could go and told the admin she’d be back in 15 minutes.

Sara Margolin of New York has been a professor of psychology for 15 years, with a focus on neuropsychology, cognition, and aging. She says her experience with ulcerative colitis and two other autoimmune conditions has made her more understanding toward her students.
Sara says, “Robin Roberts said it best, “everybody has something.” And she’s right. I’m not the only person with a chronic illness. Many of my students struggle or someone they love struggles. Understanding that they deserve the compassion that I wish to have has only made me a better professor.”

Sara has had to leave the classroom on multiple occasions to urgently use the bathroom.

“I will either quickly show a film if I have one at hand or pretend to get a call from my children’s school and “need to leave to take it.” But in my smaller classes, where the discussion leads us there — in the discussion of medical trials, medications for chronic illness, or psychological issues stemming from chronic illness, I’ve discussed my condition. And there have been a handful of students over the years who have been diagnosed while in my class, and I share with them that I understand what they are going through. We bond over that.”

Now that classes are back to in person this fall, she has some concerns knowing she is not fully in remission and not able to teach remotely anymore.

“When I was teaching at home, I had a time or two where I turned my camera off and taught from the bathroom…. EEK! … and knowing that I may be in the position to need to do that but not be able to is nerve wracking. But I know that my colleagues will fill in for me if I do need them to.”

Madison Laspisa of New York has taught fourth grade for four years. She was diagnosed with Crohn’s disease in June 2020, during her first year of having her own classroom. Not only were schools shutting down when her severe symptoms began, but she was dealing with school closures and remote teaching, on top of being diagnosed with a chronic illness.

“My life was flipped completely upside-down to say the least. I was truly devastated at everything that was happening around me and to me. My first year in my own classroom should have been the most memorable part of my career (in a good way), but I sadly cannot say that. My life changed before I had a minute to truly process what was happening. However, since we were forced to stay home because of the Covid-19 pandemic I had the availability to see doctors and get procedures done as needed. Had it been a normal school year I would have had to take a leave of absence during my very first year of teaching.”

Since then, Madison says her IBD has impacted her experience as an educator in more ways than she’d like to admit.

“Aside from needing to take days off to receive my infusion, there have been days where I needed to take a last-minute half day because I desperately needed to see my doctor. At times, this can leave the main office scrambling to find a substitute for my class with an already existing shortage. Not to mention the schedule change my students have to now adjust to with their teacher leaving mid-day.”

Madison says the toughest challenge for her is the amount of time she needs to take off to receive her medication and meet with her care team. She does her best to schedule doctor appointments after school hours, but sometimes it’s not realistic. Right now, she receives her biologic every four weeks, which was changed from every eight weeks.

“This required change in my treatment plan will now require me to miss time in my classroom with my students twice as often. It’s not as simple as “taking a day off” as it is very time consuming to create thorough substitute plans on the days, I am absent. It makes me feel like I’m a “bad teacher” because I have to take time away from my students and classroom. I feel guilty when I’m making substitute plans because I know I am going to be absent the next day and my students have no idea.”

Madison says the weight of the unpredictability of her Crohn’s makes her anxious. She worries about waking up one morning and not being physically able to go into work and do her job.

 “I love what I do with a passion and anything that can hinder my ability to do my job to the fullest breaks me. Having the summer months off allows me to slow down and take a break from my rigorous work schedule. In a sense, it provides me with some relief because I know being home, I don’t have to worry about missing work because of my IBD.”

Madison hopes that if someone reading this article aspires to work in education, that they don’t allow their IBD to deter them from taking the leap.

“Teaching and being with my students is my escape from my reality with IBD sometimes. IBD has robbed me of so much and I refuse to let it rob me of my dream job. Do not let IBD dictate what you can and cannot do. Being a teacher and having IBD are both full-time jobs and can be extremely overwhelming at times but loving what you do makes all the difference.”

Krista Deveau has been a teacher in Canada for seven years, she recently became a mom and is an ostomate. She currently teaches kindergarten but has also taught third grade and worked as an intervention specialist helping students with literacy and numeracy. She started her teaching career three months after having a bowel resection surgery. She ended up landing back in the hospital three months later, weighing under 100 pounds, in one of the worst flares of her life.

“My GI team told me that I had to work part time if I was able to or else my chances of being back in a hospital bed were quite high. Working part time has really given me a work- life balance where I can take care of my health and myself and also focus on my career.”

Prior to receiving her ostomy, Krista tells me it was difficult to teach, as she was having accidents almost daily and was vomiting in a garbage can outside of her classroom. During her first year of teaching, she had a meeting with an administrator after school and happened to have an accident. Krista had forgotten to bring a change of clothes.

“I was so embarrassed that I stayed behind my desk all afternoon so students couldn’t smell me. I cleaned up at recess as best as I could. After school I went to meet with admin and told them I had to leave because I had had an accident and didn’t have a change of clothes. I had already told them about my situation and how I was experiencing incontinence, so it wasn’t a big deal, but I was humiliated.”

Krista says teaching is a stressful and demanding job—and that it’s important to be honest with your admin team so there are no surprises along the way.

“Make sure to take care of yourself. Don’t stay late every day. Work smarter, not harder. Collaborate and share plans with other teachers so you aren’t reinventing the wheel. Lean on your coworkers. Find one good coworker friend that will have your back. Don’t work on weekends. Don’t take on too much of the extras, it’s okay to say no. Try to have a healthy work life balance. And find a school/school board that’s a good fit for you and where you feel supported.”

Helpful Tips for Educators with IBD

  • Be flexible and rework plans, not just in terms of being absent, but also what you can do instead if your energy level is too low to actively teach on your feet or if you need to talk for an hour straight multiple times a day.
    • For example: Create PowerPoint slides where every single step of a math problem animates itself with the click of a button so you can be sitting instead of standing up, exerting energy.
  • Teaching is a pleasant distraction. Teaching enables you to get your mind off your IBD and do what you love. Regardless of what you do professionally, your IBD is going to be a part of you, why let it take more from you than it already has? Enjoy the thing you can enjoy.
  • Make the appropriate accommodations for yourself. Once you are hired or work in a school district, provide school administrators with medical documentation as to why you are unable to work on a certain date. At the start of the school year, it can be helpful to turn in a letter stating your treatment plan along with a request to use the bathroom when needed stating your medical condition. Typically, teachers use the bathroom on their scheduled breaks, but this accommodation allows that in the event you need emergency use of a bathroom, someone will need to cover your class at any given time. This type of documentation for my district must be renewed every school year.
    • For example, if a typical teacher instructs five classes with an hour to plan and a 25-minute lunch, split with a 25-minute study hall, inquire about keeping your schedule consistent year after year and teaching two classes, then having a plan period, teaching two more classes, and then a ‘duty-free lunch’—meaning you get the entire 56 minutes for lunch, instead of having a study hall to give you a buffer for a bathroom trip along with minimal interruption to other classes.
    • Request a classroom close to a bathroom and department office so that there are people nearby in case you need someone to cover your class on a moment’s notice.
  • Try not to fear the worst. Being hospitalized is beyond your control and whether you have a chronic illness like IBD or not, life happens, and co-workers will need help from time to time. Rather than stress about who gave up what time to help you, focus on how to pay it forward and help other teachers when you feel well and when someone else is in need.
  • Teaching takes a village. Everyone is more than willing to help you out if you let them. Besides, it all becomes so much easier when you don’t feel like you must hide such a huge part of who you are. The sooner you realize people are willing to help you and you don’t have to try and keep it hidden, the easier teaching with IBD becomes.

How an innovative prescription app looks to change the game for IBS and IBD patients

Leave a comment

This blog was sponsored by Mahana Therapeutics. All thoughts and opinions shared are my own.

Did you know that two thirds of people with inflammatory bowel disease (IBD) also meet the criteria for a functional GI disorder? Dr. Aline Charabaty, Dr. John Damianos, and Dr. Katie Dunleavy recently presented a paper at the 2022 Guild Conference addressing the substantial overlap between Crohn’s and ulcerative colitis and the gut-brain interaction. You may wonder what constitutes a functional GI disorder, irritable bowel syndrome (IBS) is the most common.

“What we know is that up to 30-40% of patients with IBD in remission (absence of gut inflammation) continue to have GI symptoms such as abdominal pain, bloating, diarrhea, constipation, and fecal urgency, due to disorders of gut-brain interaction (DGBIs, also known as functional gastrointestinal disorders),” explained Dr. Aline Charabaty, director of the IBD Center at Sibley Memorial Hospital.

As someone who was diagnosed with Crohn’s disease more than 17 years ago, I’ve been told by multiple gastroenterologists that I have IBS as well. At one point I was told, “you have a touch of IBS” …whatever that’s supposed to mean. I know I am not alone in believing I have both IBD and IBS, especially since having 18 inches of my small intestine removed for bowel resection surgery in 2015.

Dr. Charabaty says this is the case for many patients because of the following:

  • Structural damage to the gut caused by IBD. Crohn’s disease can lead to small bowel stricture, which can cause cramps and constipation (by blocking or slowing down the stool flow); Long standing UC can create a “lead pipe colon” (where the colon loses its normal twists and turns that typically slow the stool flow down and become like a straight tube which makes the stool “fall” straight down), which can cause diarrhea and urgency. Resection of part of the small bowel and colon decreases the surface of the bowel that can absorb the water and solidify stools, which leads to loose stool. Finally change in bowel anatomy from stricture or resection, abdominal adhesions from prior inflammation, abscess, or surgery, can lead to small bowel bacterial overgrowth (SIBO) which can cause bloating, pain, diarrhea, or constipation.
  • People living with IBD can become intolerant to certain foods or modify their diet. This can lead to change in gut flora that affect gut functioning and lead to GI symptoms.
  • Recurrent flares or previous severe inflammation can lead to change in the gut sensation. Visceral hypersensitivity, gut motility, gut microbiome, intestinal permeability, and how someone perceives and tolerates all the sensations (pain, discomfort) that come from the gut. 
  • IBD affects people’s emotional and mental health and is associated with a higher incidence of depression and anxiety. We know that depression and anxiety can affect the gut functioning and lead to IBS symptoms.

“All these changes are similar to what we see in people living with IBS and can cause IBS and IBS symptoms in people living with IBD. Sometimes the way I explain it to patients with IBD, is that IBS is like the PTSD of the gut. The gut has been inflamed, traumatized, manipulated, changed from prior flare and now it can’t go back to functioning properly, even if it’s healed and it looks normal,” said Dr. Charabaty.

This is where Mahana IBS comes in. The main mission? To empower people with chronic conditions to lead fuller lives through digital therapeutics. That’s why they debuted their new prescription digital therapeutic app, Mahana IBS, in the fall of 2021. Their wish is to destigmatize IBS and bring hope and meaningful solutions to patients like you and me.

Steven Basta is the CEO of Mahana Therapeutics. He says the app is safe, FDA-cleared, and has been clinically proven in the world’s largest trial of its kind to reduce IBS symptom severity.

“Cognitive Behavioral Therapy (CBT) has long been recommended in clinical guidelines as a safe and effective treatment for IBS. Access to traditional CBT with a therapist has been a huge challenge due to the limited number of IBS-trained therapists (less than 300 in the US). Now patients can access CBT and learn the skills it provides to help a patient manage their disease by using Mahana IBS on their smartphone, with great results: 3 out of 4 patients find relief and results for most patients are lasting. Mahana users can complete the program in 90 days or less at their own pace with daily lessons on their phone to create a healthy brain-gut connection and live life more fully.”

Both IBD and IBS negatively impact our quality of life. Our mental health, our psychosocial health, and our financial health (increased health care utilization, missing days of work, medications to treat symptoms).

“Beyond treating the inflammation of IBD, and preventing IBD-associated complications, it is important to recognize and treat IBS when it is present, so people can recover and optimize their quality of life. CBT is an effective therapy for IBS and reduces or eliminates symptoms of abdominal pain, diarrhea, constipation, and bloating,” said Dr. Charabaty.

Unfortunately, access to a therapist who can provide gut-directed CBT can be limited: lack of therapists trained in CBT in someone’s geographical area, limited time availability (many therapists are not taking new patients, or have long waits to see someone; or from an IBD patients’ standpoint—lack of “extra” health care time available, when we often juggle many health appointments), deal with lack of insurance coverage, additional costs related to taking time off work and the expenses related to travel and participate in CBT sessions. Which makes the app even more useful and beneficial for the patient community.

Bringing up digital therapy to your GI provider

Digital therapy is new, and Mahana Therapeutics is working hard to spread awareness in the clinical and patient community to ensure everyone who could benefit, has access, and knows about Mahana IBS. 

“It’s important for patients living with IBD to ask their doctor whether Mahana IBS is suitable for them and discuss how it can work with their treatment plan,” said Steve.

As a gastroenterologist who specializes in IBD, Dr. Charabaty says, “Having an FDA-cleared prescription app that provides CBT right at the patient’s fingertips is pure gold! Easy and effective access to CBT at a time that is convenient for the patient, in the privacy of their home, without the added extra time and cost burden of a visit to a clinician. I believe that with this technology/app, which removes many barriers to accessing therapy for IBS, that many more people living with IBS (whether they have IBD or not) will benefit from what CBT has to offer and will be able to improve their symptoms and regain their quality of life.”

Patients who are in IBD remission experiencing IBS Symptoms may want to ask:

“If my IBD is in remission and my symptoms are IBS related, could a digital therapy treatment such as Mahana IBS gut-directed CBT be suitable for me?”

GIs who want to understand more about the clinical evidence and indications for use for Mahana IBS can head this website to check out the medical provider welcome pack which contains all the clinical information they need to get started and to prescribe Mahana IBS.

While the app is a prescription, patients can also download the app on their own and show their gastroenterologist in clinic. But to gain access to the full program, patients need to get a prescription to unlock the benefits.

How the app is tailored to each patient

People experience IBS differently which is why Mahana IBS provides a personalized approach, regardless of type of IBS. In the early sessions of the app, patients create an IBS symptoms profile, take an IBS Symptom Severity Score assessment, and create their personalized model. 

“This means people get to identify and capture their own symptoms and associated thoughts, behaviors and actions that arise as a result of these. As patients progress through the app and unlock tools and content, exercises are provided that are tailored to people’s individual IBS symptoms. Progress is recorded through the IBS Symptoms Severity Score at the beginning, the middle, and at the end of the program to measure results,” explained Steven.

Reframing thought process to reduce IBS symptoms

We can all relate to how feeling anxious can leave our ‘stomach in knots’ but in IBS there is a disorder of the brain-gut communication which causes and perpetuates symptoms. For example, our guts can release hormones that change our mood, and the brain in turn sends a signal to our guts to change our bowel functions which then sends more signals to the brain.

“Patients may develop habits or use ‘coping’ techniques that perpetuate the vicious cycle of brain-gut miscommunication without knowing it. The Mahana IBS app uses a gut-directed CBT program that was researched and developed over several decades. It is designed so you can understand your personalized patterns and then learn skills to help support a healthier brain-gut interaction. The program delivers a combination of education and exercises so that patients identify and reframe thoughts, feelings, and actions related to IBS. Through the Mahana IBS program, patients can gain tools and habits for managing symptoms long-term,” said Steven.

Along with learning to reframe our thoughts, the app also features visceral relaxation exercises like diaphragmatic breathing or belly breathing, which can reduce visceral pain and improve GI function. Mahana IBS has easy to follow animations to help patients learn and practice these techniques.

While Mahana IBS is a treatment program designed to be completed in 90 days or less with lasting results, Steve tells me some patients may experience relief from their functional GI disorder within a matter of weeks.

“Patients go at their own pace, so they may complete the program more quickly. Once the 90 days have elapsed, patients can still access their personal data (for example goal setting, IBS-SSS score or their personal IBS Model). Patients can return to the app at any time to find support in any of the lessons, tools, and exercises they have completed.”

Accessing Mahana IBS 

Mahana is committed to affordable access. Some patients may be reimbursed by insurance. For those patients who are not covered by insurance, there is a subsidized program to ensure patients will pay no more than $90 out of pocket for prescription cost. That’s less than a single session with a therapist ($120/session) for the complete 10-session program.

Steven says it’s incredibly rewarding and a huge privilege to lead the Mahana team transforming access to treatments like this through digital therapy.

“As CEO of Mahana Therapeutics I am inspired by so many amazing patients with IBS.  One patient who had struggled for years with IBS symptoms that made her feel truly hopeless expressed that Mahana IBS changed her life.  With the lessons and skills she learned, she no longer avoids the food she loves, and the way she thinks about IBS has altered so completely, it no longer limits her life.  Our team’s mission is to make this story a reality for millions of IBS patients.”

Mahana IBS is available for download directly from the Apple App store and Google Play store—and the first session is free to try! To unlock all the specific features and benefits, you’ll want to get a prescription from your GI. Once you’ve been prescribed the app by your doctor, you will get a message from Blink Pharmacy with instructions to get started. 

Turning Over a New Leaf: The Lifestyle Changes This Single IBD Mom Made to Manage her Crohn’s

Leave a comment

**Disclaimer: This article is in no way meant to offer medical advice or guidance. Medication to treat and manage IBD is NOT a failure. Please understand this is one person’s experience and journey. Prior to going off medication, consult with your gastroenterologist and care team.**

She was diagnosed with Crohn’s disease in 1991 at 19 years old. As a veteran patient and IBD mom of two teenagers, Kelli Young says the COVID-19 pandemic, along with turning 50, inspired her to dig deeper into her health journey and look beyond the “cookie cutter” approach to treating IBD. After multiple surgeries and decades of biologics and other medications, she was determined to try a different approach.

Much like many of us in the IBD community, we often choose to hide our disease from others. Kelli says 15 years of that strategy often left her feeling misunderstood. Once she started sharing and opening herself up to support, her world changed for the better. Anytime someone is sympathetic and says, “you poor thing,” Kelli reminds them that Crohn’s disease molded her in the person she is today and that everyone has problems, hers just happens to be IBD.

“Having lived more than half my life as an IBD patient, I knew I didn’t want to live the second half of my life the way I did the first half.”

Taking a closer look into food sensitivities

It’s no surprise the importance of diet has become a larger part of treating IBD in recent years, but there’s still a lot of gray area.

“Diet is often the one thing that the medical profession overlooks or provides the same generic diet to everyone, assuming everyone is the same. Diet is the #1 factor that affects your health in every way imaginable. Your energy, sleep, weight, sex drive, bowel movements, heart rate, and mood, just to name a few.”

Prior to changing her diet, Kelli connected with her longtime friend of more than 20 years, Dr. Sean Branham, a chiropractor who specializes in functional medicine. Dr. Branham ordered the Oxford Food Sensitivity Test. The test measures inflammation in the body on a cellular level. Food sensitivities are unique to each person, so it’s impossible to determine what your sensitivities are without getting tested. Reactions can also be delayed or be dose dependent.

Kelli says, “The Oxford Food Sensitivity Test looks at all types of white blood cells (Neutrophils, Lymphocytes, Monocytes and Eosinophils) and measures release of all pro-inflammatory chemicals like Cytokines, Histamines, Prostaglandins and Leukotrienes. Certain groups of foods are pro-inflammatory to humans because we may not contain all the enzymes to thoroughly break them down (like dairy). Other foods are pro-inflammatory because of their processing, like many different forms of sugar. Some are inflammatory due to genetic modification like gluten. Some healthy foods can create inflammation once digestive damage has been done and these partially digested foods leak across the digestive barrier and trigger an immune response.”

Customizing diet with Food Sensitivity results

Kelli’s tests results showed mushrooms, cashews, trout, mangos, green peas, coconut, among other foods, triggered an immune reaction. Once Kelli had her Food Sensitivity results in hand, her and Dr. Branham started to customize her diet.

“We first started by removing the bigger classes of pro-inflammatory foods like; dairy, sugar, gluten and soy and then assessed specific foods that were causing a problem for me individually.”

Along with removing these food groups from her diet, Kelli did a whole-body digestive cleanse that involved a specific diet with supplements, a shake, and a cream to rid the body the body of toxins, decrease inflammation, and cleanse the liver and digestive tract.

“Testing revealed that there were more than just digestive issues going on. I also had a blood sugar regulation problem, Estrogen dominance, nutrient deficiencies, a need for: digestive enzymes, immune support, and microbiome support. Once I completed the cleanse, we customized a supplement regimen specific to me based on my test results. We started with what Dr. Branham considered the most important things first and then as we corrected those issues, we moved on and tackled the next issue and so on.”

Celebrating a “new way of life”

As a single mom of a 19-year-old and a 16-year-old who have supported her through her IBD journey every step of the way, Kelli calls these lifestyle changes her “new way of life”.

“When my son was between the ages of 8-12 years old, he was showing IBD symptoms, but he didn’t have IBD, he was experiencing empathic pains. He watched me, a single mother, battle with the daily struggles. I tried to hide it, but he saw right through me. Today he is 16, growing, thriving, and enjoying his healthy mother. My daughter, 19, the age at which I was diagnosed, is thriving as well. I am now able to truly be present in both of their lives.”

When Kelli and her husband divorced, her children were only 8 and 5 years old. As an IBD mom it made an already challenging time that much more complicated. She never dreamed she’d be at this place in her life health-wise.

“Back then I wondered how I was going to give myself my own shots, how I was going to care for two small children 50% of the time when I was always sick. Being a single mother with IBD forced me to take a good hard look at my life, not only for me, but for the sake of my children. My motto used to be “expect the unexpected” and “no expectations.” Today, I no longer worry about the future bad days or wonder if I’m going to be around to be a grandmother someday. Yes, it’s difficult at times to follow such a structured lifestyle, but it’s even more difficult living a life being chronically ill.”

Going off all meds

Kelli has been off all IBD medication since May 2021. She says her GI of 30 years is reluctantly supporting her decision to go this route on her patient journey. Kelli had a colonoscopy in June 2022, and after the scope in recovery he said, “Well Kelli, your new way of life is working. I’ve never seen your scope results look this good.”

While this lifestyle may seem “extreme” to some or difficult to follow, Kelli says she was sick and tired of being sick and tired.

“The definition of “remission” varies depending on who you ask. I am celebrating three years of a “disease free” diagnosis. The Crohn’s will ALWAYS be very much part of my life, but now, the only time I have a “bad day” is when I cheat on my new way of life, eating something I shouldn’t be eating, not getting enough sleep, not exercising, and not managing my stress.”   

The Patient Experience: Trauma and worry surrounding blood draws and IVs

Leave a comment

Take yourself back to your most vulnerable moments as an IBD patient. There’s a good chance you’ve experienced an upsetting situation that involves getting an IV or a blood draw on more than one occasion. What may seem simple, can be complicated and traumatic. Back in December 2020 I shared an article on Lights, Camera, Crohn’s entitled, “Sticking to your guns: How to Speak up During Blood Draws and IVs”. This past week, I received a reader comment that quite honestly, made me angry.

The comment read, “Phlebotomists are only allowed 2 sticks anyways. After 2 unsuccessful attempts they should be getting someone else. No need to tell them they only get 2 tries lol. “I’m a hard stick” ok cool lol like we’re not going to figure that out while looking for a vein. Don’t be this annoying patient that everyone arguing who’s turn it is to deal with every time they walk in lol. Try being nice! Healthcare workers have to deal with too many shitty people. We only wanted to be in healthcare to help people! Not to hurt them!”

This comment inspired me to connect with the IBD community to hear firsthand what it’s like from our side, the patient experience. Shocker—we’re not “annoying patients” or “shitty people” …many of us have dealt with unimaginable pain and suffering related to our diseases. We’re tougher than nails because what we’ve been forced to endure, but that doesn’t mean we should be proverbial pin cushions made to feel guilty for making someone’s job a bit more difficult. It’s not a matter of placing blame or pointing fingers, it comes down to basic human decency, showing empathy to the person who is sick, trying to manage a complicated, unpredictable disease, who needs help.

In an Instagram poll I asked, “Has it ever taken more than two tries for a blood draw/IV? In a 24-hour period, 530 patients responded. 85 percent voted YES, 15% voted no. I followed up by asking “Do you share ahead of time that you have tough veins?” 76% of people voted YES, 24% voted NO.

In my own 17-year journey with Crohn’s disease, I’m your textbook patient with “bad veins”. It’s always an ordeal to get an IV started, blood draws often take multiple tries. I’m no stranger to this patient struggle, but I’ve learned to speak up respectfully in the moment and offer guidance rather than suffer in silence.

During a hospitalization for an abscess the size of a tennis ball in my small intestine in 2008 it took EIGHT tries to get my IV started. That moment still rocks my world when I think about it. Two nurses, rapid response nurses, and finally an anesthesiologist got the job done. That hospitalization I was told I needed to start a biologic—the only options back in 2008 were Remicade (an infusion) and Humira (a self-injection). One of the main reasons I chose Humira was because of my newfound fear of IVs.

Prior to an MRE in 2015 to see if I needed bowel resection surgery, I was so sick and rather than attempting to re-start an IV mid-hospitalization, the nurses brought in the vein finder—it was a game changer during an already stressful time.

In the recovery room after my colonoscopy in 2021 I had a nightmare of an experience with a nurse that I later reported to the hospital. My GI had asked for them to do labs through my IV (which is always a nightmare and never works because I’m so dehydrated from the prep). They decided to wait until after the procedure to get the labs. I was out of it and woke up to a nurse poking me SIX times. I kept pleading with her to let me go to a lab and to stop. She didn’t even respond to me; it was like I was invisible. Instead, she was ripping my well-respected GI apart and complaining to other nurses loudly about being asked to draw labs on dehydrated scope patients. I asked for my husband, she rolled her eyes. When he came back and told him I needed time to “calm down” before we left. I was hysterically crying. When I reported her unprofessional and heartless behavior, by the response on the other line, pretty sure I had the last laugh. Moving forward this fall with my colonoscopy I won’t be allowing labs to be drawn prior to or after the procedure. I’m more than happy to go to a lab at a different time and save us both the headache.

Let’s hear what fellow patients have to say about it

I was overwhelmed by the response from our community regarding this issue. I’m not able to share all the input but appreciate everyone taking the time to share.

When healthcare professionals say the darndest things

“I have so many memories of nurses/lab techs ignoring me when I say I’m a hard stick and dismissing me when I point them to the tried-and-true vein. I’ve heard everything from “I never miss” to “I used to work in the NICU, if I can get an IV started on a newborn, I can get one started on you.” And still, my veins will blow, and they’ll take more than three times to get it. These experiences have made me regret choosing Inflectra infusions as my first Crohn’s medication, as it forces blood draws and an IV every 8 weeks.”

“Some healthcare workers have rolled their eyes at me and were like “Well, let me just see what I can find” and then act irritated with me in the end when they need to ask me where to stick me anyway.”

“Usually they tell me something like, “I like a challenge!” or most recently, “Do I look like the kind of nurse who would be afraid of veins?”

“Nurses will always tell me “They’re the best” …yet they’re usually the ones who can’t find the veins. Then it’s almost like a disappointment in the patient because they always get everyone’s veins but can’t get yours?! It creates so much hoopla over nothing.”

“One hospitalization a nurse asked me if I “don’t want to get better” and if I “just want to keep getting sick.” She said, “Let me do my job and grabbed my arm hard.” I tried to suppress the screams as it was extremely painful. She tried seven times. My GI was livid. He put in a warning to the hospital about her. It was extremely scary to have someone be so rough when I’m so vulnerable and to be at their mercy. In contrast, I just had an amazing experience during my iron infusion. Each nurse tapped my veins for ages and then said they were going to call someone better than they were. I ended up with the head doctor from the ICU!”

“In the early stages of diagnosis, anytime I would go to the ER in pain, I would give the nurses a heads up that my veins were hard to get a successful IV started in. I know they hear that comment a lot, but they should just smirk and brush it off. It took eight tries one time before the nurse decided to get a vein finding machine. As she walked in with it, she said, “You weren’t lying when you said your veins were a hard get.”

“I’m often made to feel guilty. I’ve been asked why I don’t have a port if I’m such a hard stick. One time I was sent home from a scheduled treatment because the infusion nurse was so flustered that she couldn’t get a vein and I had “messed up her patient schedule” for the day. I found myself apologizing on the way out and now realize how wrong that entire situation was. The blame is usually placed on me for not hydrating properly.”

“I always tell them there is typically the most success in my hands and on several occasions the nurses in the ER will say “Oh well, this vein looks better, and I’m more comfortable doing this location.” This usually results in getting poked three times and blowing my veins and then finally trying my hand and being successful. When I tell phlebotomists or any of my surgery prep team, they take me seriously and usually use an instant heating pack to help and get it first try. They take their time and make sure they only do one stick. It’s really only nurses in the ER or Urgent Care settings who give pushback which is WILD because every time I’m admitted I am severely dehydrated so it’s going to be even harder than normal, and that’s basic knowledge nurses should have.”

“When I had a colonoscopy, the anesthesiologist poked me three times after I told her where my good vein was and she said out loud to the doctor, “Doc, your patient is telling me how to do my job!” Luckily, the doctor ignored her after he saw two blown veins.”

To disclose about “tough veins” or not to

“I warn everyone who is going to try and stick me. They usually try everything to get my veins to pop, sometimes it takes one try, other times it takes five. I can’t remember any nurses or phlebotomists giving me attitude, they usually try and make me laugh so that they don’t feel much pressure.”

“I do give them a heads up that I have thin veins and require the thinnest needle. I have certain veins that are more successful. I’ve allowed them two chances, but if it requires a third try, I request the best person they have. This can be super painful. I think it’s extra important to bring it up for colonoscopies when you’re dehydrated.”

“I’ve never had any issues when telling nurses or phlebotomists that I have bad veins. They’re usually happy I have told them because it makes it easier on them. I have decent veins, but they can roll and if I don’t mention it, more often not, it won’t be done right.”

“I’m a hard stick and after a recent 17-day hospitalization, I came home with SO many bruises and scars from IV’s and blood draws. Every IV infiltrated. I’m always outspoken about my veins and while some nurses believe me, I’ve faced pushback. Despite me telling them I know my veins and which ones are easier. The best part is when I’m right, my veins roll, and they miss and then they’re amazed because I told them so. The most resistance I’ve encountered as a patient has been with anesthesiologists—ego is often an issue. For a surgery in 2020, one was trying to place an IV and it hurt me immediately once it was in. So much so that I was crying. I asked him to remove it and try elsewhere and he refused. I had to ask for an attending doctor to step in.”

“I went in for an MRI and told them I had terrible veins and I’m a hard stick. The gentleman was kind and when he started to look for a vein said, “Oh, you actually DO have bad veins.” He said they often have patients tell them they have hard veins when they don’t. They called in the IV team, and it took them two tries.”

“I usually start by saying that they usually have a hard time getting it and I need to use a butterfly needle. I have been told several times that they know what they are doing and refuse to use butterfly needles. One time a needle was causing me such discomfort that I vomited. The nurse never apologized even though I had been pleading with her to take it out and try elsewhere.”

“I tell everyone I have baby veins that move and have been traumatized. I get a lot of pushback because most people think they are the one with the magic touch. I have a 2-stick rule before they must get the next best person.”

IBD hospital visit and infusion center horror stories

“The most common pushback is that the first person that tries sees it as a challenge. But not in a good way, in a prideful way. I had one guy refuse to let someone else try after 3 or 4 failed sticks and then made the executive decision that I would just orally hydrate with Gatorade in the ER…for dehydration. I also have had a lot of trouble with people not believing me when I tell them the IV has infiltrated. I was crying in pain from an infiltrated potassium IV. They didn’t believe me because potassium is known to burn. They were running it at the same time as iron and after a little while there was a stain in my arm from the iron.”

“I straight up told a nurse once she couldn’t poke me anymore because she blew all my veins and instead of getting someone else or getting an ultrasound machine, she just wrote, “Refusing Treatment” in my chart and I went over 12 hours without antibiotics until the resident intervened. “

“I have tiny veins and I’m a tough stick. Sometimes they have to move to a different spot and multiple times I have had someone else come in to try. My worst experience was during a scan with contrast dye. I told the woman repeatedly the needle was not in, and she wouldn’t listen. They put me in the machine, and I had to yell to the radiologist because I had a golf ball size lump on the back of my hand. She then started slapping it until it went down, which was incredibly painful, and I now have a small scar from it.”

“One time I warned a nurse when getting an infusion and she made a snarky comment that she’d been a nurse for 20 years. She injected Benadryl into my arm making it swollen and blue for days. I was crying and she told the doctor who was on call that she’s a “good nurse” and I was overreacting.”

“I once had to get stuck the week before my wedding 32 times. It took four nurses, anesthesia, and peds! I was so bruised the make up artist had to cover my bruises for my wedding and the photographer had to edit them out.”

“I usually have okay veins, but one time was sent for TB bloods before starting a new biologic. The abuse I got from the phlebotomist when they had difficulty getting a vein left me in tears.”

“I went to the same infusion center for 2 years and it was always the same two nurses. Every time I had to tell them about my fear of needles and tell them not to tell me what they were doing. I don’t even know how many times I cried there.”

“I’ve dealt with enough nurses at my infusion center and in the ER that I have ridiculous PTSD and anxiety when it comes to getting poked. I’m 42 and cry like I’m 4 when I get someone who doesn’t take my guidance about my best vein. What makes it extra frustrating is that I used to be a phlebotomist. I know firsthand patients know their bodies better than me and for both our sakes a one and done poke is worth everything.”

“After years and years of infertility and countless blood draws, I’ve seen too many nurses, medical assistants, and phlebotomists being rude and pushy. Everyone seems to “love a challenge” and sometimes their cockiness and attitude to never miss a vein make me their punching bag and experiment.”

“One nurse wouldn’t listen to me and keep rooting around. I told her she was going to blow my only good arm vein. We got into an argument, and she stormed out with the needle dangling out of my arm and my vein blown.”

Bringing out the IBD mama bears

“There is a nurse known for being good at inserting IVs at our Children’s Hospital’s Radiology department (i.e., for MRE’s). I learned this after a challenging IV my daughter experienced at her first MRE, when she was called in and I was told she was “the best at doing it.” With this knowledge, I immediately asked for her the second visit. I was dismissed and someone else spent 15 minutes trying to start an IV on my daughter, at which point the “good nurse” was called in to handle it. The experience was traumatizing for my daughter, and we now have to put off a necessary MRE because of this trauma. If/when we go back for the next MRE, I will not let anyone, but the “good nurse” touch her. We will up and leave if we have to, that’s how strong I feel about it.”

“As the mom of a VEO-IBD (Very Early Onset) IBD patient, we always ask for the PICC team and an anesthesiologist to start our daughter’s IVs. We always have to explain ourselves and get so much pushback each time. Everyone always thinks they can be the one to do it and it’s beyond frustrating. I don’t let any nurses see my daughter anymore unless it’s an extenuating circumstance.”

“The infusion nurse missed twice trying to start an IV for my daughter’s Remicade infusion. I was watching closely and not even sure she was going for a vein. My daughter is usually an easy stick! Easy to see veins and we focus on hydration prior to an infusion. Before the third stick, she asked ME where she should try next. I said how about getting another nurse or the IV team with ultrasound, if necessary. She became so offended, but I had a very nervous kiddo. The next nurse got it quickly without a problem. The first infusion nurse continued to give us attitude the rest of the appointment. I let the nurse manager know I did not want her caring for my daughter at any future appointments.”

“At my son’s second scope (He was 3 years old), I told the anesthesiologist that he’s a tough stick and does best in the right hand or arm. She half laughed and said, “It will be ok, Mom. We will get it.” When she returned the IV was in his foot and he had FOUR other band aids on him from failed attempts, none on his right arm or hand. She said, “You were right, he is a tough stick.” And walked away. We since have left that doctor because that was the only hospital with which he was associated. Now we go to an amazing Children’s hospital and have no complaints.”

Tips for getting through from the IBD family

“They’re always cocky and think they’ll get it. But I honestly find that warning them makes them look harder and they’re usually more successful if I give them a heads up. If I fail to give them a warning, it usually takes a few tries. I have had a specialist use the vein finder ultrasound once. It was super cool! He took one look and said, “Yup! Those are the veins of a Crohn’s patient.”

“I’ve been on Remicade since 2003 so needless to say my veins are shot. My best ones left are in my hands and I always say, “Sorry, my veins are tiny and collapse easily, but don’t worry I’m an easy patient so it’s ok if it takes a few tries. My hands are your best bet, but sometimes they have luck with xyz veins.” I can’t tell you how many times they say that the hand hurts more. As both a nurse and a patient, I know how important it is to advocate for yourself as the patient and listen to what your patient has to say.”

“One thing I’ve learned from several hospital stays is that when you get into the ER and they do the initial IV, make sure it is in a place that will work for a long stay. Not in the crux of your arm, but maybe the hand even though it hurts. That way you can maneuver it better in bed and when walking around the hospital corridors. “

“I have a routine that helps. I’ve been poked 5-7 times to start an IV or get blood. I’ve realized the more often I would say something, the more often they would miss (for a blood draw). For an IV, I started to communicate which vein to hit. Sometimes nurses resist and it sucks because you want the infusion so badly and you’re already nervous or have taken time off, gotten a sitter, and you start wondering if you won’t get your medication and if you’ll need to come back another time to do it all again. I usually take anxiety medication prior to infusions.”

“I truly believe if you go in saying “Oh my veins are easy, no problems here” it gives the nurse confidence! The only times I’ve had trouble are when I tell them I have tough veins. It psyches them out.”

“I always say to the person starting my IV, “I’m not doubting your skills, but the best place to access my veins are this vein and this vein, even though they don’t look promising.”

Perspective from and IBD patient + Healthcare Professional

Michelle Ladonne, 34, was diagnosed with Crohn’s disease in 2010. She’s also an Operations Manager of a large GI practice in Boston, so she sees both sides of the issue not only as a patient, but from the healthcare perspective.

“I am a tough stick and have had some horrible experiences (10+ sticks to get an IV, then having it infiltrate because it wasn’t fully in—so painful). But working in healthcare and managing nurses, medical assistants and phlebotomists who do this work every day, I also see the other side of things.”

Michelle says patients often come in and make comments like “you get one try” and “I can only be stuck in this particular vein,” which can be challenging for the nurse and phlebotomist.

“They’re trying hard for a safe and comfortable draw. My staff tries to listen to the patients’ experience and respect that they know their body better than we ever could. But also, the staff member is responsible for patient safety and if they can’t feel a particular vein or aren’t comfortable with a certain stick, they need to share that perspective politely and respectfully with the patient.”

She says patients can advocate for themselves, while also helping nurses and phlebotomists use their own judgement. For example, Michelle advises saying, “The vein in my antecubital (inside my elbow) looks like a good one, but there is a lot of scarred tissue there, so people usually have a hard time getting the IV all the way in. I tend to have better luck with a wrist or hand IV, but you know best!”-Luckily in the GI practice Michelle manages, several staff members and physicians have IBD.

“Our medical director of the IBD Center has had Crohn’s since he was a teenager, and it gives so much perspective in being able to see both sides of the issues. If it’s an elective blood draw or an infusion, hydrate, hydrate, hydrate! I chug my iced coffee before my Entyvio infusions to get my veins nice and plump. Not always possible clearly for patients coming in through the ER who are dehydrated and have been vomiting, but for elective draws, it’s a huge thing.”

In closing, it’s often a difficult balance when you’re in dire circumstances and the last thing you’re worried about is being polite or feeling the need to forgo your needs to appease a healthcare worker’s feelings. Speak up. As someone with a chronic illness, you are a professional patient. I always state from the beginning that I’ve had Crohn’s for 17 years, IBD gives you street cred for having strength. Make it clear you aren’t doubting their skills, but that you know your body best. Hydrate if you’re able, ask for heat packs to get your veins to perk up, inquire about the vein finder ultrasound, and put limitations on the number of sticks you’re willing to allow before it’s time for someone else to tap into the ring. This isn’t about not hurting feelings or being the “bad guy,” it’s about putting your wellbeing first and doing what you need to do to limit the possibility of another traumatic experience in your patient journey. Your trepidation is valid and justified, don’t let anyone tell you otherwise.