Category: patient advocacy

IBD and C.diff: What You Need to Know

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When you have IBD and you start to notice GI symptoms going awry, it’s easy to allow your mind to start racing and your worries to become all-consuming. This past week I did an in-person patient advocacy speaking engagement, came home, and started feeling extremely fatigued. Within an hour, I vomited, and the diarrhea began. Not to be TMI (is that even a thing when you have IBD?), but this wasn’t just “normal” diarrhea. It felt like I was prepping for a colonoscopy. Straight water-like diarrhea that hit me like a ton of bricks. I couldn’t stop. In that moment, I thought about how I was on an antibiotic for a sinus infection and bronchitis and knew that alone, with Crohn’s disease, put me at greater risk for C.diff.

For those who don’t know, “C.diff” or Clostridioides difficile is a bacterium that causes an infection of the large intestine (colon). Symptoms can range from diarrhea to life-threatening damage to the colon. According to the Mayo Clinic, C.diff typically occurs after or during the use of antibiotic medications. In the United States, about 500,000 people are infected each year.

The risk of C.diff and IBD

When I couldn’t stop going to the bathroom, I immediately contacted my GI. Being that it was 4 pm on a Friday, the timing of it all was challenging. She called me from home and said she normally wouldn’t be too concerned, but the fact I had just finished a course of prednisone while being on doxycycline put me at greater risk. She warned that if I had diarrhea the following day or if I had a fever at any time, that I would need to get tested for C. diff and go to the hospital. She put in orders so I would be able to do so and told me to contact the Fellow on staff if I had concerns over the weekend.

Saturday came and with the bathroom trips came unbelievable abdominal pain, reminiscent of what a bowel obstruction feels like. I could barely walk and was grasping my abdomen in pain hunched over. I had already called and spoken to the Fellow on call three different times. In that moment, my husband called his mom so she could watch our three kids and we rushed to the emergency room.

A study by the University of Michigan recently looked into the relationship between IBD and C.Diff. The study found that people with IBD are at an increased risk for C.diff, even if we haven’t taken antibiotics. It’s believed something about the IBD gut supports C.diff colonization and growth, but the actual relationship is still a bit mysterious. This study looked at a mouse model and found, “inflammation and changes in the gut microbiota associated with IBD promote C.diff intestinal colonization.”

For those of us with IBD, our immune system mistakes normal intestinal microbes as harmful invaders and attacks them, leading to inflammation in our guts. The cause of C.diff is similar, with the immune system, microbiota, and C.diff itself playing a role in infection.

The burden of C.diff on the IBD population

According to an interview in Pharmacy Times, we’re at greater risk for C.diff when our IBD is active. This is because active inflammation changes the flora in our microbiome and puts us at greater risk for developing infection. In this piece Bincy Abraham, MD, MS says we see C.diff in both ulcerative colitis and Crohn’s disease patients but tend to see it more in those with UC since the colon is directly impacted.

Get this—A database of patients with IBD showed 10% will have at least one C. diffinfection over the course of their lifetime. Half will have more than one. WebMD shares that C.diff infection begins with frequent, watery, foul-smelling bowel movements and cramps in your abdomen. When I was unsure if I had C.diff that was the number one question I kept getting asked. People told me the smell was very unique—like a barnyard, sour smell. Thanks to my sinus infection congestion, I had no idea what it smelled like. But—it’s important to look out for that if symptoms present. Medical professionals told me they can tell right away by the smell, if it’s C.diff.

Symptoms of C.diff

While watery diarrhea with a strong odor is the main indicator—there are other symptoms to watch out for:

-Abdominal pain and cramps

-Fever (I had the chills, but my GI assured me that was due to dehydration from the diarrhea)

-Nausea and/or vomiting

-Dehydration

-Loss of appetite

-Weight Loss

-In severe cases, blood or pus in stools

For anyone with IBD, these symptoms are reflective of what we experience with an IBD flare. So, it can feel especially concerning in the moment as you try and figure out what’s going on.

My rough ER experience and finally getting tested

I always him and haw and dread the thought of seeking medical care at the ER. It brings about so many emotions and past trauma. But in this case, I knew I needed to wave the white flag and get to the bottom of what was happening. After waiting four excruciating hours in the ER, I wasn’t sure how much more I could take. I was moaning in pain and hobbling back and forth repeatedly to the bathroom. Bobby was using a wheelchair to push me around. The nurses in triage were incredibly unprofessional and lacked any empathy. It was like nothing I’ve ever experienced. I was basically reprimanded for showing emotion about my pain and told others had it worse. It was despicable. She waved her “RN” badge in my face and said she had a woman die from a pulmonary embolism while in the waiting room and she didn’t make a peep. As I was crying, I yelled back, “I’M NOT A WIMP! I have Crohn’s disease!”

Once I was finally brought back to a room, the same nurse acted sweet as sugar. Gag me. The ER doctor had no clue what was going on. I was taken for a CT scan with contrast while in the waiting room and the young doctor walked up to me all cocky and said, “ So, you have an ileostomy.”…I said, no I don’t have an ostomy. He then proceeded to say, “Oh, so you had a reversal.” NO. I had bowel resection surgery. The fact the doctor was clueless to IBD and thought that because I had an anastomosis indicated a reversal (even though I have Crohn’s) was scary. I was given Zofran, fluids, and Dilaudid and was told it was most likely a stomach bug, but that they would like to do a stool sample to rule out C.diff.

Unfortunately, since I had literally shit my brains out in the ER for hours, I had nothing left. I hadn’t eaten in almost 30 hours. By the grace of God, around midnight, I was able to go. I was so grateful to have a stool sample and get some answers. The shift changed and a new doctor walked in. She was empathetic, kind, and knew her shit about IBD. I felt an immediate sense of relief. She told me they were going to do one more round of Zofran, fluids, dilaudid and add in Benadryl and Droperidol for anxiety and to calm things down and if that didn’t help, I would be admitted. Luckily, that heavy hitting dose of IV fluids and meds did the trick and I was finally comfortable and able to go home around 1:30 a.m., knowing that I’d get the C.diff result the next day.

Despite testing negative for C.diff, my diarrhea and excruciating abdominal pain lasted from Friday at 2 pm until Tuesday evening. This stomach bug was no joke and I always feel when you have IBD with a stomach bug, it’s next level.

The Patient Experience: What you had to say about C.diff

I ran a poll on Instagram, 307 people with IBD responded. Of that group, 37% have had C.diff. On Twitter, 147 people responded and 28% shared they had C.diff at some point during their patient journey. I was blown away by the hundreds of DM’s I received on Instagram when I asked for advice and was freaking out about the possibility of having it. I learned a great deal from all the insights shared. Here are some of the messages I received that I feel can benefit our community moving forward:

“I went through a case of C.diff this summer after two rounds of antibiotics and a round of steroids at the same time. I was miserable, only eating boiled potatoes with a little salt and bananas. Once I got meds (dificid), I saw improvement quickly. I also take Visbiome probiotic (prescription strength) and taking that regularly helped me in a period of waiting for results.”

“I had C.diff back in 2015…awful. It was so brutal. I was sick for over a month with it, just couldn’t shake it even with the crazy dosing of antibiotics.”

“Keep an eye on your temperature and if you’re running a fever with the diarrhea—that’s a big indicator.”

“I had C.diff on and off for four years and just got a fecal transplant in November and have been “cured” since. I’ve never thought C.diff was like the stomach flu/norovirus. C.diff to me is more like a bad IBD flare with some fever/chills and diarrhea that’s very distinct from whatever your “normal” IBD diarrhea may be.”

“I battled C.diff for a year. Ask for Vancomycin right away. It’s the best medication for it. Having Crohn’s and C.diff is a horrible combination. It caused me a lot of issues.”

“I had C.diff earlier this year. My symptoms included a very smelly gas, low-grade fever, abdominal cramps, and mushy stool. Pedialyte, broth, and tea helped a lot.”

“Every time I take antibiotics, I take saccharomyces boulardii (probiotic). The specific strain helps prevent C.diff.”

“C.diff is MISERABLE. I can normally smell if it’s C.diff. I’ve had it five times. Go to the ER and do not wait. It’s so horrible. It’s exhausting and being that sick is the worst. The pain is awful, too. No one ever discusses how much pain it puts people in.”

“I’ve had C.diff so many times. Output is like colored water, and I go 20-plus times a day. Mine way always a weird yellowish color. Going to the ER means a quicker diagnosis and for me I end up inpatient, too. With C.diff I’ve found liquid Vancomycin works best as it’s absorbed faster, the pills just went straight through me.”

“C.diff is super hard to get rid of, so fast treatment is key. I had a recurrent infection for nearly a year. I took Vancomycin 4x/day for a few weeks and eventually tapered down. I think it was just a nasty strain, but I eventually kicked it out.”

“C.diff is a doozy to have. The hardest part for me was keeping family and friends away as it’s super contagious, too. I remember a lot of Zofran. IV fluids and sleeping as much as humanly possible. Use wipes instead of toilet paper so your bum doesn’t get raw.”

“My brother had C.diff and the only thing to get rid of it was very strong antibiotics. Every time I’m on an antibiotic, it makes me very sick and puts me in a flare and I have choice but to start probiotics.”

“C.diff is rough and highly contagious. I had it right before I went on Humira. Make sure to bleach your bathroom and not to prepare food. My GI was super concerned about me giving it to my husband. My treatment was Vancomycin 125 mg orally 4x a day for 10 days.”

“I have been battling reoccurring C.diff for almost 2 years. Coming up on my second Fecal Transplant as the first failed. I was in a flare and absolutely nothing was working. Finally discovered underlying C.diff. Vancomycin changed my life. Within 48 hours I went from 15-20 bowel movements a day to 1-2.My doctors are baffled by how well I respond to it.”

“I’ve had C.diff more than once, the first time I waited almost too late to seek testing and ended up with dangerously low potassium, EKG changes, and was hospitalized. The second time I didn’t even know I had it until I was being worked up to join a clinical trial for my UC and had to do treatment, again. Liquid IV packets help ward off dehydration.”

“My son who has Crohn’s has had C.diff two times. Vancomycin with a long, slow taper was key to get rid of it both times. Wipe the bathroom down with bleach constantly.”

“C.diff is the actual worst. If you have it, skip Flagyl and go straight to Dificid. Flagyl made me SO sick. Like so much worse and it didn’t get rid of it…and that’s the case for multiple other people I know who’ve had it.”

“I had C.diff. I played the waiting game, and it was miserable. If your stool is completely watery and very foul smelling, then it’s C.diff.”

“I take Culturelle Probiotics Digestive Health Extra Strength whenever I’m on an antibiotic to prevent it.”

“I had reoccurring C.diff during the pandemic, a few months after my bowel resection, and for recurring months after. They would usually do a fecal transplant, but they were on hold because of COVID. It took months to get better.”

Kick C.diff to the curb

Ironically, while C.diff can be brought on by antibiotics, the only way to get rid of it…is to take more antibiotics. The three most prescribed are Vancomycin, Flagyl and Dificid. In severe cases, especially when toxic megacolon becomes an issue, you might need surgery to remove the damaged portions of your bowel. Other options for reoccurring infection include Fecal Microbiota Transplant (FMT), where donor stool is introduced in your colon. Probiotics and antibody therapy are often used as well. Certain antibodies are known to provide immunity against the toxins produced by C.diff. A combination of the medications actoxumab and bezlotoxumab can lower your changes of the infection coming back.

When I received the negative C.diff test result I felt such relief. So many of my symptoms aligned with the tall-tale signs, I wasn’t sure what to expect. The entire process has been such a learning experience and I hope that you’ve taken away some helpful nuggets of knowledge should you ever question you have C.diff yourself.

How this ostomate is gearing up to become an IBD Dad

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Parenthood when you live with a chronic illness like IBD can make you feel anxious, worried, and uneasy. As an IBD mom of three, I often connect with and share the stories of fellow women with Crohn’s disease or ulcerative colitis who have brought life into this world, despite their disease.

This week on Lights, Camera, Crohn’s we hear from a soon-to-be IBD Dad, Brad Watson-Davelaar. He was diagnosed with Crohn’s in 2001 at age 17. His name and face may look familiar, as I featured him in an article entitled: IBD Dads: What these patient heroes have to say about fatherhood. In that article, Brad was recently married and discussed his hopes for the future. Those hopes came to fruition, as he and his wife are awaiting the arrival of a baby girl in late June!

Leading up to the pregnancy, Brad was a bit scared of what fatherhood would look like while living with an unpredictable disease. Like many of us, Brad fears when his IBD will rear its ugly head again and cause him not to be as present as he wants to be, hindering his ability to be a “proper teammate” for his wife.

“Prior to my wife being pregnant, I think I was scared. I’ve wanted to be a dad for some time, but with the way my health has been over the last several years, the prospect of having kids while I was in that physical state freaked me out. Not because I didn’t want kids, but because I was worried I wasn’t going to be enough for them.”

Finding out he was going to be a dad

When Brad found out his wife was expecting he was elated. They had been trying for a few months and he was only a couple months post-op from his ileostomy and barbie butt surgery. While Brad knows life as an IBD Dad will have its ups and downs, he knows the highs will far outweigh any of the difficult days.

“I’m so thankful for Shawn, my stoma, for coming in and giving me a new lease on life. I feel ready to tackle this new chapter of our life and all that comes with it. The good, the bad, the ugly, and the beautiful.”

Since he’s lived with IBD for nearly 22 years and has been an ostomate for 6 months, Brad feels his patient journey has conditioned him to deal with the unexpected. He hopes to connect with fellow IBD dads who have paved the way before him and shown all that’s possible.

Discussing IBD with his daughter in the future

As his daughter grows up, Brad plans to be an open book about his battle with Crohn’s.

“I want to help her understand what IBD and ostomies are. Especially ostomies. It will take time, but I believe in being open and not hiding things. I want her to see that my IBD does not define me and show her how important it is to advocate for yourself.”

As Brad and his wife gear up to become a family of three, they are overjoyed and excited about the new chapter in their lives that is about to begin.

“I’ll be there to look after this wee little one, which will fill my heart with warmth. Being able to focus on her achievements will be a brilliant way to get through the rough days. In the past, it was the little things that got me through. Now, I’ll have all the little moments to continually push me.”

His wife, Sydney, feels so lucky to have Brad by her side as they experience this adventure.

“He had struggled so much over the last couple decades, especially these last couple of years and his perseverance and strength through it all makes me know that nothing is too big for him to overcome. I know he is going to be an amazing dad with so much love, nerdiness and laughter. His Crohn’s is a part of him, but his IBD does not define him. I know no matter what we can get through it together. Brad’s last surgery has definitely given him a new lease on life. With a baby on the way, his ostomy will help him be more present, active, playful, adventurous and helpful. I cannot wait to see him hold our little girl for the first time,” she said.

You can reach out to Brad on social media:

Twitter: @bwdphotocanada

Instagram: @bwdphoto

Facebook: Brad Watson-Davelaar

How IBD dietitians are improving patient outcomes

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Raise your hand if you were told ‘diet doesn’t matter’ when you were diagnosed with IBD? Personally, the dietitian who visited me while I was hospitalized after my initial Crohn’s disease diagnosis in 2005, scared the bejesus out of me. I’ll never forget her sitting by my bedside with a clip board rattling off all the foods I would never be able to eat. Fruits, vegetables, anything raw, fried foods, wheat…the list goes on. I felt incredibly overwhelmed and defeated in that moment. Even though it was nearly 18 years ago, it’s a moment in my patient journey that is still upsetting to think about.

When Brittany Rogers, MS, RDN, CPT was diagnosed with ulcerative colitis in high school after suffering in silence for five years, she was 20 pounds underweight, exhausted, in pain, and experiencing frequent and urgent trips to the bathroom. She was put on medication and given little to no direction in the way of diet. Inspired by a nutrition class she took in high school and coupled with her own experience with trigger foods, Brittany pursued a degree in nutrition and became a registered dietitian. She strongly believes that learning about nutrition in college and applying that information to how she managed her IBD drastically changed the trajectory of her disease and quality of life.

Brittany as a teenager after her ulcerative colitis diagnosis.

The driving force behind Romanwell

Managing diet when you have IBD is complex and dietitians treating people with IBD need to be well versed in the latest research to provide safe and effective care. If you’re lucky enough to live near an IBD center, you may be able to see an IBD dietitian for a few visits through your doctor’s office. However, most people don’t have access to these centers of excellence and need more than one or two appointments per year to come up with a personalized nutrition plan to reduce their symptoms, improve their quality of life, and restore their relationship with food. Brittany’s practice, Romanwell, is tackling this issue head on by making expert IBD dietitians accessible to anyone, no matter where they live or work.

“I started Romanwell to be able to provide an exceptional level of care to people all over the country. I don’t want anyone else to suffer with symptoms the way I did for so long. Nutrition and lifestyle factors, such as stress, play a huge role in the symptoms we experience as patients. Unfortunately, people often don’t get the guidance they need to help them feel better,” said Brittany.

Diet research is quickly evolving and more and more providers are acknowledging the role of diet in managing IBD. However, there’s still a long way to go before GI’s everywhere start to refer patients to IBD dietitians routinely.

“If someone’s provider doesn’t have a referral for them, the Crohn’s and Colitis Foundation has a directory of IBD providers including a number of dietitians that they can search for and reach out to. The American Gastroenterological Association (AGA) is also putting together a directory of dietitians that will make finding a GI-specific dietitian much easier. Patients can also always reach out to me and I am happy to point them in the right direction if our practice can’t meet their needs,” she explained.

The unique support of an IBD dietitian

In an ideal world, patients would get support from an IBD-focused registered dietitian starting the day they’re diagnosed. Examples of where it would be helpful to work with an IBD focused RD include:

  • At diagnosis, IBD dietitians can help answer questions around what they can eat, talk about the definitions of trigger foods, pro-inflammatory foods, & anti-inflammatory foods, and examples of each. They can talk about foods associated with an increased risk for active disease, foods associated with increasing the risk for colorectal cancer, and what to eat during active disease & in remission.
  • If someone needs IBD-related surgery, dietitians can help them optimize their nutrition before & after surgery to reduce the risk for postoperative complications.
  • If they’ve lost weight without trying or have a decreased appetite, they’re at risk for malnutrition and would benefit from working with an IBD focused registered dietitian. 
  • Anytime they’re having symptoms- dietitians can help manipulate their diet to reduce symptoms & improve overall quality of life
  • If someone want to improve their relationship with food, or have a history or active eating disorder, Romanwell can help them expand their diet, include more cultural foods in their diet, and use non-diet evidence-based approaches to reduce symptoms. Dietitians can also help people work on improving their relationship with food, their body, and their food-related quality of life
  • And, anytime someone has questions about their diet, or are worried about their nutrient intake, they should have access to an IBD-focused dietitian.

“We offer programs rather than individual sessions in our practice which gives us the time to help our clients make sustainable changes to their diet and lifestyle that will last them a lifetime. We build relationships with our clients, take the time to understand their needs, cultural influences on food, food preferences, and implement 100% personalized programs that work for them in their life. 95% of our clients work with us for 12 sessions, which we typically run over 3-6 months. In the beginning of a client’s program, we deep dive into their medical history, labs, supplements, labs, diet and their relationship with food and their body, and then set goals for the end of the program. We meet weekly or bi-weekly to make progress towards the clients goals, and are available via messaging throughout the client’s program to answer any and every question that comes up in the moments when they arise.”

Those of us in the IBD community know how isolating and upsetting it is when you’re in the middle of a flare. Brittany’s goal is to ensure that every client seen at Romanwell feels seen and understood and realizes that they’re not alone in this.

“I want patients to feel as though they’re our only patient and that they’re not alone in this. We believe all patients deserve that level of responsiveness and empathetic care. We want them to feel and know that we care about them and want the best for them,” she said.

Creating evidence-based research that’s digestible for patients

When Brittany started Romanwell, she noticed that no one was talking about the research around diet and IBD on social media and translating that research and know-how into approachable and actionable content that people could easily learn from and implement in their daily lives. You may hear the term “medical nutrition therapy”—this is evidence-based diet and nutrition treatment for a specific medical condition(s) provided by a registered dietitian.

“I started publishing research summaries and tips on my Instagram pages (@weareromanwell; @brittanyb_therd) and people seem to really resonate with the content. Reading research articles is intimidating! It’s hard enough for someone with a scientific or medical background to stay on top of all the findings, let alone someone from a non-healthcare background. I try to create content that summarizes what we know (and acknowledges what we don’t) from the research and always try to find a way that someone could get immediate actionable value out of the content – be that by tips or recipes or swaps for trigger foods, etc.”

When working with clients, Brittany finds it helpful to know that oftentimes education on diet is insufficient in encouraging behavior change- instead, she’s found is that people also need help applying that information to their life.

“For instance, research suggests Crohn’s disease patients who consume the most fruit and vegetables were actually 40% less likely to flare than those who consume the least. Patients we work with often have already seen a dietitian or have received a handout on what to eat that may include this recommendation of eating lots of fruits and vegetables. And although this is great information to share with Crohn’s disease patients, sometimes it’s not very helpful because they often want to consume more fruits & vegetables, but don’t feel safe doing so because it triggers symptoms, or they’re afraid of causing a blockage,” Brittany said.

When implementing this recommendation with her clients, she shares the study, but then looks at a person’s individual diet, asks them which fruits and vegetables they enjoy, and makes a plan together with the client to slowly add in more servings week by week in a methodical manner, sometimes adjusting the texture or amount of what they are eating.

“By the end of the program, most patients are consuming at or above the recommended fruit and vegetable intake and have a huge list of meal/snack ideas they enjoy and that are tolerated so they feel confident the diet is sustainable.”

Working to improve access for patients

The key to helping as many patients as possible get access to the care they deserve is getting their GI providers to refer patients to IBD dietitians and getting health insurers to cover the cost of those services so that patients can make meaningful and sustainable changes that will benefit them for a lifetime.

“I think there’s enormous potential for providers to help their patients have better outcomes by working closely with IBD dietitians and for health insurers to lower their costs by equipping patients with the tools and resources they need to stay out of the hospital. We’re trying to make this a reality by showing that our clients do in fact have better health outcomes after completing our program. We collaborate with every client’s existing GI care team to make sure the patient is getting the support and guidance they need.”

Romanwell is also measuring their clients’ outcomes and recently presented a poster at the Crohn’s and Colitis Congress showing some preliminary results. They’re hoping to submit the results to a peer-reviewed journal later this year.

“Our goal long term is for every patient with IBD to have access to an IBD registered dietitian and for programs like ours to be covered by insurance so everyone can access them,” said Brittany.

Counseling on the complimentary role of diet and lifestyle alongside medication

There’s a tremendous amount of information out there about the pros/cons of certain medications and/or alternative approaches to treatment that can be really confusing, misleading, and scary when you’ve just been diagnosed with a lifelong chronic condition. Some people worry about the side effects of medication and want to “heal their gut” using diet alone.

“We would never judge people based on the information they’ve read or the opinions they’ve formed about what’s best for their care, but we want them to know the evidence-based information so that they can make the best decision for themselves. We want patients to feel as good as they possibly can for as long as possible, so we love it when patients use nutrition along with medication and lifestyle factors to help them feel their best. We don’t believe it has to be either diet or medication, they work beautifully together!”

Looking to the future

Romanwell recently hired a second dietitian and has plans to hire more this year and next year.

“Our goal is to be able to thoroughly train dietitians in how to deliver exceptional care in a way that really helps patients achieve their goals. Unlike the training one might receive to practice inpatient or outpatient dietetics, our training program includes aspects of health coaching, counseling, motivational interviewing, intuitive eating and a weight-neutral approach to health. Since we’re a telehealth practice, we’re able to see clients on their terms and schedule, but that also means we can hire dietitians anywhere around the country which gives us access to much more talent than we’d be able to find locally.”

Romanwell pays for dietitians to pursue licensure in a number of states, so they can see as many patients as possible.

“I can’t even describe in words how incredibly fulfilling it is to get to help others with IBD. It’s been such an honor to help IBD patients get the care they deserve. I’m so grateful I get to do this for my job!”

Connect with Romanwell

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The prevalence of mental health struggles in the IBD community

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Mental health often takes a major hit when you’re diagnosed and live with a chronic illness like IBD. I ran a poll on Instagram and Twitter this past week and the results were extremely eye-opening. Not only for the patient community, but for any caregivers, friends, or family who know people with Crohn’s disease or ulcerative colitis.

On Instagram—out of 350 people polled over 24 hours, a resounding 93% responded “yes” to IBD impacting their mental health and causing depression and anxiety. On Twitter, I ran the same poll for 48 hours, of the more than 205 votes, 86% of people responded “yes”.

Dr. Yezaz Ghouri, MD, Director of Inflammatory Bowel Disease Services, University of Missouri School of Medicine at Columbia, offered helpful insight on the topic. I had the pleasure of meeting “Dr. ZaZ” (as he commonly goes by) in person at the Crohn’s and Colitis Foundation’s Mid-America Chapter Gala in November. Dr. ZaZ was awarded the 2022 Catalyst for Mission Advancement award and I was so inspired and intrigued by his work as I was emceeing the event, that I knew we would have to collaborate on Lights, Camera, Crohn’s! We made it happen.

Here’s my interview with Dr. ZaZ about how our IBD can impact our mental health.

NH: “During the first day of the Crohn’s and Colitis Congress 2023 conference it was shared that rates of anxiety and depression are about twice as high in the IBD community compared to the general population–why is that?”

Dr. ZaZ: “The exact cause of IBD is not known. There are some common theories that have been suggested, these include genetic factors, changes in gut microbiome, alteration in immune function of the body, and effect of certain environmental factors. Interestingly, some of these factors have also shown to be associated with mental disorders like anxiety and depression. The gut-brain axis is a nervous system-based pathway that connects the nerve cells from the brain to the gut. This gut-brain axis has been found to play a role in the release of nerve cell chemicals (or neurotransmitters) in the intestines. One such neurotransmitter is Serotonin, which has a well-established role in several psychiatric disorders like anxiety, depression, bipolar disorder, etc. Studies have pointed out an alteration in serotonin activity in the intestines of patients with IBD 1.

The gut microbiome comprises of trillions of species of organisms mainly consisting of bacteria. The healthy gut-microbiome is altered in individuals with several conditions like anxiety, depression, Alzheimer’s, Autism, etc. This alteration is also seen in IBD and has been a subject of active research to better understand the various changes in the bacteria of the gut. Some of these bacteria produce chemicals that can serve as neurotransmitters in the gut. It is unclear if these chemicals could influence the gut-brain axis and contribute towards the occurrence of mental disorders. Last year we published a study that showed this association of increased prevalence of anxiety and depression among IBD patients 2. The added burden and distress was not just limited to IBD patients, the study also showed an overall increased healthcare cost and burden to hospital systems. It is in the best socio-economic interest of the government and the public to address mental health issues in society, especially among those with chronic illnesses like IBD.”

NH: “How can patients best articulate their concerns and communicate with their doctor about their mental health?”

Dr. ZaZ: “IBD patient sometimes suffer from anxiety, depression, sleep disturbances, and other mental conditions like eating disorders. Your GI doctor hopefully has established a healthy physician-patient relationship where you are comfortable to bring up any issues that you would like to discuss with your GI specialist. During my clinic visits apart from addressing the medical aspects of IBD, I frequently have a friendly conversation about my patient’s life in general with a focus on their overall well-being, including talking about their mental health. In addition, several individuals have a primary care provider (PCP) with whom they generally have a good relationship and feel comfortable bringing up any health-related concerns.     

Psychiatric conditions can manifest with sleep disturbances, fatigue, loss of appetite, lack of interest in activities that you previously enjoyed, depressed mood, suicidal thoughts, etc. Sometimes IBD flares can contribute to some of these symptoms, especially sleep disturbances due to night-time diarrhea or constant abdominal pain. Use of biological medications can be frequently associated with fatigue that may last a day or two after taking the biologic. In a large-scale UK based study, presence of a diagnosis of IBD was associated with a higher likelihood to cause deliberate self-harm, anxiety, depression, and insomnia. Interestingly, the risk was higher among those with Crohn’s disease than with ulcerative colitis 3.

Remember, mental stress can also contribute to an IBD flare. Frequently I see some of my IBD patients go through an uncontrolled spell of psychological stress, maybe related to personal relationships or their place of employment. This when unchecked can precipitate an IBD flare, and in some cases develop psychiatric illnesses like anxiety or depression. Hence, it is important to have a stress-free life or mitigate stress to minimize its effect on your mind and body.”

NH: “I know you see a lot of college students; how do you navigate these concerns as their care provider? Do you tend to see this more with your younger patients—or is it across the board?”

Dr. ZaZ: “College life of a freshman can be quite stressful. The move away from the comforts of their homes to a new city or town and being surrounded by strangers can be overwhelming. This can cause psychological stress which may precipitate an IBD flare. Moving to college can also disrupt the continuity of care received from their established pediatric or adult GI specialist. Students may skip their medications due to storage issues, changes in insurance, feeling of shame of having IBD or fear of not being able to ‘fit-in’. All these factors can contribute to inadequate management of their underlying IBD. We at the University of Missouri try our best to accommodate college students in our clinics so they are cared for and IBD flares are prevented from occurring. The student health clinics are efficient in recognizing students with chronic illnesses and referring them to GI clinics. I frequently encourage students that they continue to see their primary GI specialist but also establish care in our clinic/hospital system, so in case there is a medical emergency or if they experience a flare, we will be well-informed beforehand about their medical history and have a plan in place to adequately treat them.  

In a large study comprising of more than one million IBD patients, it was shown that being a female, having diagnosed with IBD as a child or a young adult and having a diagnosis of Crohn’s disease have been associated with higher likelihood of suicide attempts and suicide death 4.

Mental disorders in IBD are seen across all age groups but are somewhat more pronounced in those individuals whose disease is not well controlled or have not achieved remission since their initial diagnosis. Majority of IBD cases are generally diagnosed at a young age, several times in college students. Unfortunately, we also see frequent occurrence of mental disorders in younger age groups. Students have additional mental stressors when they have a chronic bowel condition like IBD. Many feel that they the lack of freedom in choosing to eat anything they like when they go out with friends or their need for frequent bathroom breaks, which can sometimes hinder them from participating in activities they choose or in making new friends. Many feel embarrassed to disclose their medical conditions to new friends or acquaintances, this perhaps cannot be stressed enough among those with an ostomy bag.

This leads to a state of inadequate social/family support which may push at risk students into developing mental conditions like depression, anxiety or eating disorders.”

NH: “Any advice for caregivers of young patients–who may have concerns about their child/teen/young adult and are unsure how to make sure their child is not dealing with anxiety/depression, but don’t want to overstep or upset their loved one?”

Dr. ZaZ: “It is very important for not just the physicians but also the caregivers involved in managing IBD in young patients to recognize signs of depression or other mental disorders. Do not always assume that if an individual is constantly tired, has disturbed sleep or looks depressed, that it is due to their IBD. Several times these are early signs of depression, and these young individuals need the support and help that they deserve to address these issues. Perhaps adult patients who have depression may recognize it and seek help, but kids or teens generally do not perceive these signs as an abnormal expression of behavior and may not even disclose them to their loved ones. Caregivers who attend clinic visits with pediatric specialists should bring up any unusual behavior they notice about their child and discuss it with the provider.”

NH: “How can mental health issues exacerbate IBD symptoms? 

Dr. ZaZ: “Studies have shown that individuals with mental disorders who have IBD have a higher chance of developing IBD flares, they require escalation of their therapy and have increased incidence of death 5. (See Reference 5) This is quite alarming and should be brough to the attention of providers who take care of IBD patients. “Providers are not just prescribers”, simply writing prescriptions for medications, some of which are very expensive, is not enough to heal the patient. IBD is a chronic disease which lasts a lifetime, and medications alone cannot be the solution. Providers need to step up and participate in the mental well-being of their patients. If they are not able to address the mental health related issues themselves then referring to experts in the field is perhaps the best alternative approach. Depression may cause patients to skip their infusion visits or physician visits, uncontrolled anxiety or paranoid states may make them apprehensive about any therapy that they have been appropriately prescribed and may even stop the treatment. IBD patients with eating disorders may starve themselves or eat uncontrollably causing worsening of their bowel condition. These eating disorders are commonly present among young and female IBD patients who have body image disturbance 6.”

NH: “How is anxiety and depression typically managed in patients with IBD? (Medication, talking to a psychologist, etc.?)”

Dr. ZaZ: “The first step to treating anxiety and depression is to approach a provider with whom you are comfortable to freely express your medical complaints, problems, or any issues that you would like to discuss. Psychotherapy or behavioral therapy is probably the preferred approach in mild cases but in individuals with more profound symptoms, medications may be preferred in addition to psychotherapy. Finding a good therapist and setting up sessions at frequent intervals is important. In severe cases with suicidal ideations or attempts perhaps hospitalization may be required.

Multiple medications are commonly used for treating anxiety and depression. A PCP or psychiatrist may be able to find the right one for you, and please make sure you follow up with these providers since these medications may need to be monitored for their side effects and to adjust the dosage. Sometimes GI physicians may feel comfortable to prescribe these medications, but that may generally not be true for majority of gastroenterologists.”

NH: “As a GI, how do you try and facilitate positive relationships with your patients to help ensure they feel at ease with taking on their disease, managing it, overcoming flares/surgery, etc.?”

Dr. ZaZ: “My first step towards approaching IBD is to make sure that the symptoms that my patients are complaining of are truly from IBD and not from IBS or any other illness. Once IBD is diagnosed, I have a detailed visit with my patient with their new diagnosis. I usually encourage them to read up as much as they can and write down questions about their illness prior to this clinic visit. During the visit I start by giving a broad overview of what IBD is and the mechanism of disease process.I do this little exercise of talking about mechanisms by which IBD develops because I have noticed in my experience that several patients feel guilty about having their illness, and believe that in some way it was ‘their fault’ that they developed IBD. We then focus our attention on what are the available treatments why I think the recommended treatment would be a good fit, so the patients can make an informed decisions about their choice of therapy. I highlight the signs or symptoms they need to look out for that could suggest a complication or flare up of IBD. We provide them access to communicate with our clinic team if they have any questions; if they are concerned about a flare or if they suspect side effects from their therapy. Next, I answer questions they may have come up with during my discussion or from their personal research prior to the visit. Once the questions are answered I provide them with written material about their illness. I frequently encourage our patients to join patient support groups and direct them to online sources for information about IBD like the website for the Crohn’s and Colitis Foundation.”

NH: “Why is it so important to focus on whole person care–and recognize that IBD impacts more than the GI tract?”

Dr. ZaZ: “If we understand the mechanism by which IBD develops in the body, we can say that a dysfunctional immune system perhaps has the central role in the disease process. This immune system is connected to the entire body, it’s in our blood, guts, and other organs. Abnormal functioning of this immune system is likely to affect the entire body, although in IBD this abnormality primarily targets the bowels. But we frequently encounter what are called the “extra-intestinal manifestations of IBD”. These are referred to conditions that cause joint pains, skin rashes, eye redness, oral ulcers, liver disorders and other symptoms or signs that can be encountered in patients with IBD. Beyond these, patients with IBD are shown to be associated with higher incidence of mental disorders, pregnancy-related complications, chronic fatigue, and vitamin/mineral deficiencies. The effect on the bowels by this disease has a major impact on what one can eat, thereby limiting their nutritional intake. It is only fitting to treat these individuals as a whole, and not just their bowels. In terms of methods of treatment, apart from allopathic medical therapies, several other modalities of treatment are now being explored and accepted. Addressing diet and exercise is an important aspect to maintain healthy lifestyle in general, and especially so in patients with IBD. Running or other forms of cardio-based exercises have been shown to have a positive impact on the disease. Consuming healthy dietary supplements, like probiotics have been shown to be beneficial. Relaxation techniques and meditation also help keep oneself stress free, and perhaps prevent development of mental disorders as well.

One last thing we must also remember is that in today’s world social media can contribute to a lot of mental stress and anxiety, especially where disinformation campaigns can lead to confusion and poor choices in life. Hence it is important to have reliable resources to gain knowledge about IBD and its therapies. Sources like the Crohn’s and Colitis Foundation and its members like Natalie have been leading in educating several individuals through various platforms. In summary, eat healthy, exercise regularly, educate yourself about IBD, try to relieve stress and follow up with your doctor for medical care.”

I hope this article sparks a conversation and allows you to feel less alone in your mental health struggles. The findings show it’s anything but “just in your head.” Your feelings, fears, and struggles are valid. You are loved. You are not a burden. You are worth it. You matter. We need you here. Remember that.

If you’re thinking about suicide, are worried about a friend or loved one, or if you would like emotional support, call 988 any day of the week, any time. The 988 Suicide and Crisis Lifeline (formerly known as the National Suicide Prevention Lifeline) provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week, across the United States.

Reference Guide List

1: Coates, M. D., Mahoney, C. R., Linden, D. R., Sampson, J. E., Chen, J., Blaszyk, H., Crowell, M. D., Sharkey, K. A., Gershon, M. D., Mawe, G. M., & Moses, P. L. (2004). Molecular defects in mucosal serotonin content and decreased serotonin reuptake transporter in ulcerative colitis and irritable bowel syndrome. Gastroenterology, 126(7), 1657–1664. https://doi.org/10.1053/j.gastro.2004.03.013

2: Tarar, Z. I., Zafar, M. U., Farooq, U., Ghous, G., Aslam, A., Inayat, F., & Ghouri, Y. A. (2022). Burden of depression and anxiety among patients with inflammatory bowel disease: results of a nationwide analysis. International journal of colorectal disease, 37(2), 313–321. https://doi.org/10.1007/s00384-021-04056-9

3: Umar, N., King, D., Chandan, J. S., Bhala, N., Nirantharakumar, K., Adderley, N., Zemedikun, D. T., Harvey, P., & Trudgill, N. (2022). The association between inflammatory bowel disease and mental ill health: a retrospective cohort study using data from UK primary care. Alimentary pharmacology & therapeutics, 56(5), 814–822. https://doi.org/10.1111/apt.17110

4: Xiong, Q., Tang, F., Li, Y., Xie, F., Yuan, L., Yao, C., Wu, R., Wang, J., Wang, Q., & Feng, P. (2022). Association of inflammatory bowel disease with suicidal ideation, suicide attempts, and suicide: A systematic review and meta-analysis. Journal of psychosomatic research, 160, 110983. https://doi.org/10.1016/j.jpsychores.2022.110983

5: Fairbrass, K. M., Gracie, D. J., & Ford, A. C. (2022). Relative Contribution of Disease Activity and Psychological Health to Prognosis of Inflammatory Bowel Disease During 6.5 Years of Longitudinal Follow-Up. Gastroenterology, 163(1), 190–203.e5. https://doi.org/10.1053/j.gastro.2022.03.014

6: Stoleru, G., Leopold, A., Auerbach, A., Nehman, S., & Wong, U. (2022). Female gender, dissatisfaction with weight, and number of IBD related surgeries as independent risk factors for eating disorders among patients with inflammatory bowel diseases. BMC gastroenterology, 22(1), 438. https://doi.org/10.1186/s12876-022-02526-0

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

Instagram

Facebook

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

Why My Self-Injection Has Become a Family Affair

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This post is sponsored by Smart Sharps Bin. All opinions expressed are my own and do not necessarily reflect the position of HealthBeacon plc or Hamilton Beach Brands, Inc.

I started doing my self-injection more than 14 years ago, long before I became an IBD mom. I went from being a single 20-something alone in my apartment mustering up the strength… to having a family around me while I receive my medication. The experience has changed greatly and so has my perspective.

There are many reasons why I have chosen not to hide my injections from my three children. Crohn’s disease impacts more than just the person who lives with it, it’s a family disease. Even though my children are ages five, three, and 16 months, there’s a deep level of understanding and empathy that starts from a very young age. My disease is part of me. I always try to be transparent about my health and well-being. I have never said “I have a disease” since my children wouldn’t understand that, but I try to explain that sometimes my “tummy” hurts and that “Mommy’s shot keeps me healthy, safe, and strong.” 

My process for self-injecting every other Monday

Once dinner is over, I pull my injection out of the fridge and let it warm up on the counter, out of the reach of my kids. I’ve always preferred to do my shot at night so I can rest afterwards and have a sweet treat like ice cream as a reward after. After about 30 minutes to an hour, I head over to the couch, and my children hover around me. They watch as I wipe the alcohol swab counterclockwise and oftentimes help me hold the ice pack on my thigh for five minutes. Then, once it’s time to pull the top and bottom off the injection and get down to business, I let them know they need to give me some space and not to move or make any jerking motions. I pause. Smile sweetly at them and start my countdown, slowly and calmly…one one thousand…two one thousand…all the way to 10. They smile back at me and bounce around when I have finished self-injecting. They immediately want to see if I’m bleeding and want to make sure I’m not in pain and don’t need a band aid. I bounce up off the couch and act like it’s just another part of our bedtime routine. 

Since we’ve been doing this “process” for as long as they can remember, it’s part of our family, and part of what it’s like for me as an IBD mom. My kids are my greatest cheerleaders and my reason “why” for everything I do in life. 

The sweetest distraction

I find it empowering to look into their innocent eyes and joyful faces while I self-inject, it’s the best distraction. I used to stare at a focal point on the wall, a photo of someone who inspires me, or a show on the television, but looking at my kids—my greatest motivation to push through the difficult moments—is the best medicine, literally and figuratively. I make a point to smile at them and never show signs of weakness, so they see that I’m ok and doing something positive for myself. This has become a lot easier since the formula for Humira changed and is no longer painful. I used to really struggle to smile when the medication burned the first year and a half of my oldest son’s life.

When my injection used to be painful, my son would see through my smiles. He would often hold a toy and pretend to give himself his own injection. After I was done doing my shot, he would come up and kiss my thigh and say he loved me. At this point he wasn’t even two years old—kids of IBD parents just “get it,” their empathy and understanding of health is incredibly unique and special. 

How that strength carries over into my children’s’ lives

Since my kids see me self-injecting every other Monday, they’ve become quite desensitized when it’s time for their own vaccinations at the pediatrician. When my older two children get their flu shots, they take them like champs. The nurses always laugh that they’re braver than some teenagers. When my kids smile and tell me they’re strong like me when I do my shot it’s bittersweet. While I wish they didn’t have to see me self-inject, it’s building their character and understanding of health in a beautiful way. 

PIANO 2.0: What women with IBD need to know about the latest pregnancy and postpartum research 

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When the Pregnancy Inflammatory Bowel Disease and Neonatal Outcomes (PIANO) study first launched in 2007 the main goal was to understand the safety of anti-TNF biologics like Humira and Remicade, and thiopurines for women throughout pregnancy and postpartum. As an IBD mom of three, I was able to participate with my youngest who is nearly 16 months old. The experience was something I am extremely grateful for. This incredible research for our community that is going on daily, helps guide decision making for treatment, while easing our fears as we embark on motherhood while managing IBD.

PIANO 2.0 is now underway and this week on Lights, Camera, Crohn’s I share everything you need to know about the updates to the ongoing research project, how you can participate, what the findings have shown thus far, and the goals for the future. Esteemed gastroenterologist, Dr. Uma Mahadevan, continues to lead the charge and help pave the way by sharing discoveries and findings.

“With new funding from the Helmsley Charitable Trust, we are really able to transform PIANO and try to reach a broader group of patients and answer more challenging questions. These questions include the safety of small molecules (tofacitinib, upadacitinib, ozanimod) and the newer biologics (ustekinumab, vedolizumab, risankizumab) as well as expand into studying the placenta and the impact of IBD, the response to COVID vaccine in pregnant IBD patients, and following children out to 18 years of age to look at long term safety and outcomes. The more you know, the more questions that come up.”

What’s new with PIANO

All women with IBD who are pregnant in the United States are invited to enroll. Specific interest in enrolling women on newer biologics (Stelara, Skyrizi, Entyvio, biosimilars) and small molecules (Xeljanz, Rinvoq, Zeposia) even if it was within 3 months of your last menstrual period but not during pregnancy. PIANO 2.0 is also expanding to look at the safety of aspirin in pregnancy (to reduce the pre-eclampsia rate) and well as how IBD women heal after a c-section and vaginal delivery.

There are new and improved patient and site interaction updates as well. There’s now a patient portal that enables women to enter their data directly, a Twitter page (@PIANOIBD) for research findings and updates, and a website with outcome data right at your fingertips.

The medical sites participating have also expanded to include USC, University of Miami, and the University of Maryland. Dr. Mahadevan says they realized most patients in PIANO were Caucasian and of higher socioeconomic status.

“We know pregnancy outcomes differ by race and socioeconomic status and we need to understand if that also applied to IBD pregnancies – does it make those differences more extreme or is there no impact? By expanding to sites with a far more diverse population, we will be able to better answer those questions.”

As far as the Patient Portal, rather than filling out paperwork and participating in phone interviews, now women simply answer questionnaires on the portal when they enter the study, every trimester, after delivery, at months 4, 9, and 12 of baby’s life and then once a year thereafter. Thanks to the Patient Portal, women can enroll remotely across the United States and don’t have to be at an IBD Center to participate.

Pushing the research further

The overarching goal with PIANO 2.0 is to gather data points from newer biologics and biosimilars and look at the safety of small molecules. So far, 2,012 women with IBD have participated in PIANO. The hope is to have at least 150 newly pregnant women participate each year. 

So grateful I was able to participate in the PIANO study during this pregnancy, with my youngest child, who is nearly 16 months.

“With biologics we generally feel they are all low risk as they won’t cross the placenta in the first trimester when the baby’s organs are forming. Small molecules, however, are more concerning as they will cross during that key period of organogenesis. However, for some women that is the only therapy that works, and they must make difficult decisions,” explained Dr. Mahadevan.

Once the baby is born, the research will look at if the child develops any infection issues, malignancies, neurological issues, and immune diseases like IBD. There are some questions about basic diet as well. Having long-term data and a fuller picture of the future for IBD moms is priceless. By participating we’re truly paving the way for IBD moms now and in the future.

Dr. Rishika Chugh recently shared a presentation at the American College of Gastroenterology conference that Dr. Mahadevan co-authored that looked at data on 47 women on Stelara (ustekinumab) and 66 on Entyvio (vedolizumab). Those women were compared to moms not on biologics/thiopurines and those on anti-TNF therapies. 

 “There was no increase in harm from being on Stelara or Entyvio compared to those groups. Interestingly, those on Stelara had lower rates of preterm birth and C section. Numerically, there were also less infections on Stelara though that was not statistically significant.”

Participate in a Townhall Discussion with Dr. Mahadevan: Starting a Family with IBD: What Men and Women with IBD Should Know about Conception and Pregnancy

Save the date for a discussion taking place Thursday, December 15 at 6:30 pm Pacific Time. Click here to register for the free event.

Click here to enroll in PIANO 2.0

Follow the latest on PIANO 2.0 on Twitter.

Check out the new website. 

I’m excited to be serving as one of the IBD patient advisors on the project, alongside fellow IBD moms Jessica Caron, Brooke Abbott and Amber Tresca (from IBD moms). We’re looking forward to providing the patient perspective and helping to guide the conversation. Jess and I were on biologics in pregnancy and have previously participated in PIANO. I had the opportunity to participate in IBD research studies with all three of my kids and it’s extremely empowering to know you are helping to change the future of care for women in our community and providing women with the added support we need while navigating pregnancy and motherhood with a chronic illness.

Overcoming the self-injection scaries

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This article is sponsored by Health Beacon. All thoughts and opinions shared are my own.

When I think back about the scariest moments I’ve experienced since my Crohn’s disease diagnosis more than 17 years ago, doing self-injections and the loading dose process tops the list. To go from being someone who didn’t rely on a biologic medication to function and treat my chronic illness, to mustering up the strength to inflict pain on myself, it took getting used to, to say the least.

I’ll never forget what it was like when I was first told I would need to choose between a self-injection and an infusion while lying in a hospital bed with a hardcore flare. It felt like trying to pick the lesser of two evils at the time. I chose self-injection for privacy reasons because at the time I was a television news anchor and hadn’t shared that I had inflammatory bowel disease (IBD) publicly. I also have terrible veins and the thought of having to get IVs and be hooked up for hours to a medication seemed less convenient and like more of a reminder that I was unwell. During that hospital visit it took 8 tries to start my IV, so the trauma of that helped guide my choice to do injections instead.

Going the self-injection route

When I started my biologic in 2008, there were only two medications on the market to manage and treat Crohn’s disease – Humira and Remicade. The injection (I was prescribed) at the time had a reputation for being painful and the loading dose involved four injections, back-to-back in one sitting. When my mom and I walked into my gastroenterologist’s office so the nurse could instruct me on how to give myself shots, I was shaking like a leaf. In the moment I wasn’t sure how I was going to muster up the strength not knowing how it would feel. My palms felt sweaty holding the foreign injector pen in my hand. I wasn’t sure how badly it was going to hurt. I was fearful of the side effects and what the heavy-duty medication was going to make me feel like. I wanted the nurse to do the first injection for me, and she wouldn’t. In the moment that made me upset, but now I am so grateful she put the onus and trust on me. I’ve never had anyone do my injections but myself.

I pressed the button and instantly felt the liquid fire pain shoot into my leg. I couldn’t believe I was expected to do that three more times. But I did. When the appointment was over, my mom and I hugged in the hallway. I felt like I had been through battle. It was terrible. Knowing that I had to do another two injections in two weeks loomed over me. Unfortunately, my initial loading dose made me very sick. As my body got acclimated to the medication, I felt weak and could barely walk up 13 stairs to my apartment. I had to miss work and social functions as my body got used to medicine.

Going through another round of loading doses

Fast forward to 2015. I had bowel resection surgery that involved the removal of 18 inches of my small intestine, appendix, and Meckel’s diverticulum. My care team had me go off my medication for three months—prior to surgery and after. Because of that, I had to do another loading dose and re-start the process. Even though I was already more than 8 years into doing the same injection, when my GI told me I would need to do another loading dose, my mind immediately raced back to 2008 and what I went through. I was so emotional I had to call into work sick that day. Luckily, this time around was a lot less scary, and I had more confidence in the process and knew exactly what to expect. I didn’t have any side effects after this loading dose, and I was back on track to my normal injection routine.

The shift to “pain-free” injections

The first couple years I did my injection, I would count down the days until the next one was due with dread and worry. I spent more than a decade on the painful version of the medication. In 2018, the formula for the medication was changed for patients in the United States, taking out the sting and making the gauge of the needle smaller. The loading dose now “only” involves two injections versus the four.

The “pain-free” version of the medication has completely changed my patient experience for the better. I no longer dread my shot. The process feels simple and nearly effortless. Even though I’ve been lucky to be afforded the opportunity and access to this version of the medication, I can still remember how it used to feel. The anxiety and emotions the injection would cause, and what I dealt with for 10 years of my life every other Monday.

Self-injection through pregnancy and motherhood

I am an IBD mom with three young children. Ages 5, 3, and 15 months. When I was first pregnant in 2016, it took a lot of guts and felt like an emotional rollercoaster injecting a biologic knowing there was a life growing inside of me. As the weeks turned to months and my belly got bigger and bigger it became more emotional feeling kicks and movement in my stomach while I was pressing the button to give myself the shot. Until my son was 1.5 years old, he witnessed how upset the injection would make me at times and would hug me and watch with empathetic eyes from a very young age.

When I tried the pain-free injection in 2018, I shot a video the first time I experienced it. This time around, I was pregnant with my second child. You can watch the emotional video here. As I express in the video, it was lifechanging to know that throughout future pregnancies and through motherhood, my children wouldn’t ever see their mom crying or scared while doing injections anymore. Now, when I do my shots, I have a big smile on my face and my children see their mom through a much different lens.

Keeping your eye on the prize

Whether you are gearing up for your loading dose or a veteran self-injector, it’s an experience that can be hard to put into words unless it’s your reality. It’s normal to grieve and be upset about your situation. Try to breathe. Go to your happy place. Get a focal point to focus on and know that you are doing all you can to help keep your disease under control and live the fullest life possible. Short term pain, long term gain in every sense of the word. Being scared no matter where you are in your patient journey is understandable, but like all pain and fearful experiences, they too shall pass.

Click here to learn more tips about self-injecting.