Tag: crohns

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

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

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

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

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

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

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

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

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

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

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

When healthcare professionals say the darndest things

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

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

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

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

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

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

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

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

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

To disclose about “tough veins” or not to

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

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

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

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

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

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

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

IBD hospital visit and infusion center horror stories

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

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

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

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

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

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

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

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

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

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

Bringing out the IBD mama bears

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

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

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

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

Tips for getting through from the IBD family

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

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

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

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

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

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

Perspective from and IBD patient + Healthcare Professional

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

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

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

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

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

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

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

A Special Report: Changes to Lights, Camera, Crohn’s

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It’s been 6,207 days since my life changed forever. On July 23rd, 2005, I was diagnosed with Crohn’s disease at age 21. Since that time, I’ve evolved and changed in ways I may not have if it weren’t for my IBD. After living in silence with my condition while working in television news for a decade, I decided to use my love for storytelling and speaking to be the voice I needed to hear upon diagnosis as I navigated the many crossroads of young adulthood (finding love, a fulfilling career, and having a family).

July 23rd also marks the day I launched my blog, Lights, Camera, Crohn’s. Since 2016, I have shared fresh content, every single Monday (sometimes even twice a week!). 336 articles on my site alone. More than a quarter-million visitors and more than 387,000 views.

It’s been a labor of love and a mission project that continues to fill my cup and implore me to constantly want to learn more and shed light on topics that are often not talked about. Every day of every week since my blog began, I’m constantly thinking about story ideas, topics of interest, people to interview, ways to word content, images that are needed…the list goes on.

This photo was taken at a wedding July 23, 2016, right after I pressed “Publish” on the first Lights, Camera, Crohn’s article. I found out I was pregnant two days later.

The weekend I started my blog in 2016, I was one month into married life and found out days later I was pregnant with my first child. Since then, I am now a stay-at-home mom of three children (ages 5, 3, and 1). Life has gotten way more hectic and busier with each year that passes, but I’ve held tightly onto fulfilling my promise to the patient community, and to myself, to deliver new content each and every week. I’ve been organized through the years—often having an article written days before my Monday deadline, but this past year, with another baby added to the mix, it’s been more of a stress on me. I’ve spent many Sunday nights finishing my articles. At times it’s felt like a lot to juggle. I haven’t wanted to let anybody down, including myself. And I haven’t wanted my content to start lacking in any way.

Don’t worry, Lights, Camera, Crohn’s is not going anywhere

My blog has grown into more than I ever thought possible. It’s so rewarding to know my words have helped comfort and guide so many in the IBD community. I need to cut myself some slack and give you a heads up that moving forward there may not always be an article on Mondays. It pains me to say that, but at this point in my life, in this season of IBD motherhood, I need to start taking time to rest and relax. Since having my third baby last summer, I get my kids down for the night and START to work around 830 pm. It’s just constant. I truly rarely get a break. I’ve been in remission since August 2015, and I don’t want the stress to get the best of me.

You may not be aware—but my blog is only one aspect of my advocacy work. I also spend a great deal of time working with digital healthcare companies, patient-centered non-profit organizations, sitting on advisory boards and patient engagement teams, communicating with patients in need online and over the phone, and do freelancing work on the side, all without childcare.

I laugh as I write this because I already have three articles lined up for August…so there will be months where there IS an article every Monday. Just not always. My commitment and desire to serve as a patient leader is not waning in any way—I just want to be honest with you, my loyal readers, that this mama needs to lighten the load and take a little self-imposed stress off my shoulders.

I started contemplating this a few months ago, and almost changed my mind this week about sharing, but it’s time. We had an AMAZING 6-year streak of constant new content. I’m excited to see what this coming year brings in the way of patient stories, research, and perspectives. Having extra time to work on articles will really allow me to do more special reports and expand my “IBD Motherhood Unplugged” and “Patient Experience” series.

Thank you for giving me so much to talk and write about, always. There are endless topics that need to be brought to the forefront and I love providing a platform for others to share their journeys and experiences with the community. As always, please reach out if you have a story idea you want me to cover. Lights, Camera, Crohn’s has truly evolved from being a blog about my IBD experience to an award-winning and well-respected site that has highlighted hundreds of different patient stories and physician perspectives—and I love that. There’s no greater compliment then when I hear a gastroenterologist uses my blog to educate their patients.

Excited to see what 2022-2023 brings! Thanks for the love, support, and understanding and for making the first six years of Lights, Camera, Crohn’s what it was.

-Natalie

My partner has IBD and so do I

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Love can be extra complicated to find, trust, and open yourself up to when you have IBD. This week on Lights, Camera, Crohn’s we hear from five different IBD couples (dating and married), but they aren’t your typical couples. In these cases, both partners have IBD.

Emily + Jason

Emily Geist and her husband, Jason, of Pennsylvania had an unusual diagnosis journey. Their children were surprisingly diagnosed before they were! Their oldest daughter was diagnosed with IBD in 2014 when she was four years old. Then a few months later, their middle daughter was diagnosed with IBD at just 21 months old. Through the process, Emily and her husband were asked if they had any family history of IBD and the answer was “no” at the time.

“Their diagnoses made my husband and I rethink the “sensitive stomachs” that we thought we had. We had previously talked with our health care providers, and no one thought of IBD, given our mild symptoms. Since I was pregnant with our third daughter when our second daughter was diagnosed, it took some time for me to see a GI and be diagnosed in 2016 with ulcerative colitis. My husband’s symptoms were more significant, and he ended up getting diagnosed with ulcerative colitis the same year as me.”

Emily says they were in shock after all four of them were diagnosed with IBD within a two-year period, not to mention having a newborn thrown into the mix!

“I joked that my husband and I were perfect for each other – so perfect we both had the same chronic disease and didn’t know it for the first 8 years of our marriage.”

She is grateful in a way for their delayed diagnoses as a couple, since passing along IBD when both partners have Crohn’s disease or ulcerative greatly increases.

“It was a blessing, in a way, that we had our family of three beautiful girls before we even knew we both had IBD. If my husband and I, and the two older girls had been diagnosed before I became pregnant with our third daughter, I am not sure what we would have done. And this thought hurts my heart, knowing the uniquely amazing kid we have in our third. We have watched our youngest so carefully for signs of IBD. Last fall, based on some very minor issues that might have been ignored in any other family, she had scopes and we found out she also has IBD at the age of six.”

Emily says Jason and her approach medical issues differently. He is calm, she’s a bit anxiety ridden. It’s always like that, right?!

“This works in my favor often as he can help calm me down. I lean hard on him during tough times. While we both have IBD, I think much of Jason’s empathy and support come from other health challenges he has faced. Jason was hospitalized as a teen for a (benign) sinus tumor and associated surgery. He also had cancer and underwent surgery and chemo for it. (We were married during his first round of chemo – but that is a whole other story!) He remembers what helped him in both of those situations and uses it to help our daughters and myself.”

Emily and Jason are on two different 5-ASA medications. Jason and two of the girls are on sulfasalazine, one daughter is on Remicade, another on Humira.

“There are two things I tell my girls: (1) Everyone has something…everyone has a challenge they work to overcome…and ours is IBD. (2) It takes intense pressure to create a diamond, we can deal with our ‘pressure’ and use it to become something rare and amazing.”

Amanda + David

Amanda Vogel moved to Colorado Springs in late August 2021. Two weeks after moving there, she started talking to a guy named David through a dating app. It just so happens they lived across the street from one another, so they planned to meet at a restaurant the following day.

“The day we were supposed to meet, he texted me and said he had to cancel our date due to “stomach issues.” I immediately thought to myself, “Hmm, I wonder if he has Crohn’s disease”? I brushed it off, we continued to text back and forth and made plans for that weekend. While we were texting, I made a joke about him canceling on me again and that’s when he told me he had Crohn’s disease. I was mind blown and told him how I have Crohn’s myself. I shared with him my blog post from March 2020 and felt an instant connection. We were both diagnosed with Crohn’s disease at age 13 and both have the same incision on our stomachs.”

Amanda couldn’t believe these incredible coincidences or the odds of their paths crossing.

“It’s mostly an understanding of each other’s dietary preferences, with some gentle encouragement to try things in moderation here and there. Also, a no-explanation-needed approach to random stomach stuff that can pop up anytime.”

While she says there is a “baseline” of empathy and understanding, which is amazing, it’s surprised her how differently IBD presents in each of them.

“The most surprising thing has been being so close to someone else with the same diagnosis but with very different day-to-day and long-term symptoms, medications, and little personal details of the whole patient experience. It’s helped me understand that one of the frustrations of IBD is how differently it can affect people, which can make it difficult for others to really understand. For me, that translates to empathy in the form of knowing Crohn’s can interject itself into our day whether we expect it or not and making sure to accept that without blame or guilt.”

These lovebirds joke about one day doing a “couples colonoscopy.” David is on Humira, and Amanda has an appointment in upcoming weeks with her new GI to discuss treatment plans moving forward.

“Anyone that would treat you like a burden due to a health problem that you’re doing your best to manage is not someone who deserves to be in a relationship with you. There are plenty of loving, understanding people out there, IBD-savvy or otherwise. Love yourself and the rest takes care of itself.”

Anika + Louis

Anika and her boyfriend, Louis, of Virginia, were friends for years before they officially started dating. They were out with friends one night and she mentioned she had ulcerative colitis. He replied that he did, too.

“When we started dating, I was less than a year into my diagnosis and I felt less alone when I found out he had it, too. Before I began my clinical journey to a diagnosis, I had never heard of UC let alone knew anyone under the age of 70 who had it. There are so many things that I assume I would have had to explain to a partner, that I didn’t have to explain to him because he had a similar experience.”

She says as long as they’ve been together neither of them has felt ill on the same day.

“It’s usually clear if one person is sicker than the other, so the less-sick individual takes more of the heavy lifting. I recently had to undergo a colonoscopy and without me asking he took off work so he could drive me to and from my appointment. He religiously read the prep materials the doctor had given me to make sure I took the right medication at the right time and even did all my prep shopping (buying me Jellos and Gatorades so I had prep friendly snacks). I think in general he’s an extremely empathetic person, but the fact that he can also relate is unbelievably nice.”

Both of these lovebirds take four mesalamine pills a day. They tease each other that if they forget their medication they can just borrow from the other person since they’re on the same prescription. She wants everyone with IBD to remember they are not a burden and deserve to be loved like everyone else.

“I don’t think you should ever think of yourself as a burden, and I know that’s a lot easier said than done. I believe that if someone loves you, like fully loves you, they will love you no matter what and be there to support you in anything you have to deal with. If someone shows early on that they are not compassionate or caring or can’t show up for you, then that’s a blessing that you found out early on and not when it’s too late. You deserve someone who loves you for all that you are.”

Brittany + Morgan

Brittany Wheaton and her boyfriend, Morgan, of British Columbia, both didn’t have IBD when their paths first crossed in 2018. Morgan was diagnosed with ulcerative colitis in 2013, but Brittany didn’t have answers for the symptoms she’d been experiencing since 2016. She says her boyfriend tends to be private about sharing about his ulcerative colitis, so he didn’t share his health situation with her until a few months after she had been diagnosed and he was sure they had a future.

“Since I was diagnosed while we were together, Morgan walked through the process with me and figured out the connection when he learned my new GI was his long-term GI! He didn’t grasp the connection between Crohn’s and UC right away as his awareness of his disease comes from his GI and doctor only – I’m more literate and curious about it!”

When it comes to having kids one day, Morgan has zero concerns. He’s confident that the medical supports are increasing every day and is excited about the prospects of new drugs and treatments if they are in the position of becoming parents to a child with IBD.

“He also reminds me regularly that we would be the greatest advocates and supporters to that child. We live in Canada, so we have the reassurance of universal healthcare which is such a privilege. I am more apprehensive about kids, particularly as I spent the past two years in a severe flare that I was worried might end my life. I struggle with the guilt of knowing I could pass these difficult experiences on by no ill-intention of my own. I also worry what pregnancy would be like on my body and have concerns around not being able to sustain a pregnancy due to my difficulties with nutrition. I also acknowledge that choosing to not have a child due to the risk of IBD can fringe on eugenics and is quite ableist.”

Brittany and Morgan often talk about how despite their IBD they have been fortunate to live beautiful, fulfilled lives and have gotten unique lessons and learnings about themselves and each other through their personal limitations.

“We choose to live in an apartment because we’d rather spend our healthy time having fun and relaxing rather than maintaining a stand-alone home; we’ve planned and started saving for retirement and periods off work at 29 and 34 because we know it’s likely inevitable; we have stringent boundaries around stress and taking on too much because the busyness isn’t worth the cost of our health; we have decided to do everything we can do to maximize our rest and fun, and minimize the stress of a too-full life because we know how fragile life really is, and have seen what is really important to us as IBD has taken it away before for periods of time.”

Brittany and Morgan place importance on being independent as patients but are grateful to have each other to understand the language of IBD and take advantage of having a partner who intuitively gets it.

“The day that we decided that we would be together for the long-haul, we committed to always putting our health first. Having a partner who understands that my physical and mental well-being and his physical and mental well-being need be our priority has provided such a rich and earnest connection without shame or guilt. It’s so beautiful to have a partner who encourages me to take care of myself rather than forcing his way in and trying to micromanage it for me. I feel empowered and trusted, and when I’m in a place where I need the external help, he’s always ready and waiting to step in.”

Brittany and Morgan are both on a 4-week cycle of Entyvio and the nurses at the clinic think it’s a hoot! Morgan is also on azathioprine. Since she was diagnosed while knowing Morgan, they both see the same GI.

“It was funny telling our doc because he (and pretty much everyone) suspects we must have met because of our conditions, but we just ignorantly both swiped right and found out the details later! Our general practitioners find it so interesting that we found each other and ask a lot of interpersonal questions about how we pull it off!!”

IBD is a part of who they are, and though Brittany is not thankful for the disease, she’s thankful for the lessons the IBD experience has brought them both. She says the emotional infrastructure of having IBD has made them better matches for each other!

Rebecca + Joey

When Rebecca Goodrich of California first met her husband, Joey, he opened up about having Crohn’s disease early on. At the time, she did not know she also had IBD. He candidly shared about his experiences with medication, flare ups, and traveling with Crohn’s. Rebecca was curious and eager to learn more about his patient journey, and at the time started to think she may be in denial about her own health.

“I knew what IBD was and was honored that he felt comfortable sharing his experiences with me. I was also so impressed with how determined Joey was to care for his body through healthy habits (sleep, hydration, meditation, etc.). When I was diagnosed, he was incredibly supportive—always reminding me through the tough moments that ‘this too shall pass’.”

She went on to say Joey has a way of keeping her grounded when she gets worked up about procedures or an uptick in symptoms. He takes Humira, she takes Lialda and Mesalamine enemas. Her current GI is Joey’s previous doctor.

“My advice for finding love with IBD is to be with someone who loves you for you. There’s no such thing as perfect, we all struggle with something. I am incredibly grateful to be married to someone who truly “gets it,” for my loyal Labrador Sherman-Shell, and for my family who has been there since the beginning.”

Recognizing the touchpoints of independence along your IBD patient journey

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Take yourself back to the very first time you needed medical attention for your IBD (but didn’t know it yet). Close your eyes for a moment. Who was that person? Do you know them anymore? How have you changed and transformed since that life changing day?

I was diagnosed with Crohn’s disease July 23, 2005, at age 21. I was blindsided by a chronic illness after growing up as a literal picture of health. A three-sport, in shape athlete, who had never even had an ear infection or been to an emergency room. As a recent college graduate, my world flipped upside down as I struggled to find my way in the real world.

Now, 17 years later, I can tell you firsthand what I, you, and so many others have endured on our patient journeys and how each experience (even the mundane) serves as monumental touchpoints for gaining independence and confidence in making you a more empowered and direct patient. 

Let me paint the picture clearly for you

The first time you bravely laid in an emergency room bed and every time there after—not knowing the tests, pokes and probs, and physical scrutiny you were about to go through. 

How it feels to be wheeled by a stranger through stark hallways to CT scans, MREs, and scopes, wondering what the results will be on the other side and the repercussions for more medications, a longer hospital stay, or surgery.

The difference a couple months makes–pre-diagnosis in May 2005 and 2 months after 60 mg of prednisone a day and 22 pills a day.

What it’s like when you say goodbye to loved ones and they roll you into the OR and you’re shaking like a leaf, all alone and feeling frail and broken, alone with your thoughts and prayers.

The number of moments you’ve watched nurses and even rapid response nurses fumble with IV’s try after IV try and when it’s been more than five, you find your voice from that point forward and start only giving medical professionals two tries before it’s on to the next.

How it feels at the butt crack of dawn when the world is sleeping and the hospital is bustling, waking you abruptly to get more vitals and more labs and you lay alone, haggard, frustrated, and delirious. 

The moment when your GI has a heart to heart with you about starting a biologic and having to determine for yourself what route is your preference—infusion or self-injection. Would you rather sit for hours hooked up to an IV drip or sit on your couch with your kids looking on as you inflict pain on yourself. 

The times you’ve sat up in the middle of the night wide awake thanks to the prednisone kicking in while the rest of your world is asleep wondering if you’ll ever regain some semblance of control of life.

What it’s like trying to eat meals inconspicuously with your family while they not so subtly watch each bite and every trip to the bathroom with sadness and worry in their eyes.

How it felt driving to a first date or a job interview and feeling like your IBD is a dark secret looming over the conversation and not knowing when to take down your walls and share. 

Listening to your friends make comments about health and energy without considering what your experience with a chronic, debilitating illness may be like since you look well on the outside. 

What it feels like to look at your reflection in the hospital bathroom. Battered arms, sunken in eyes, a shell of who you used to be. But as soon as you walk out of the door, putting a soft smile on to protect your visitors from worry. 

What it’s like to sit on an airplane or be on a road trip with others and silently worrying about whether you’ll be able to make it and what your game plan will be. 

When you’re up in the middle of the night doing the second half of colonoscopy prep and wondering ‘why me’ in your 20s and 30s, feeling isolated in the physical, mental, and emotional anguish the process puts you through year after year. 

What you’ve internalized each time someone dumbs down your IBD, offers up ridiculous remedies or goes into a discourse about their aunt’s brother’s cousin who “healed” their Crohn’s this way. 

When you’ve waved the white flag and alerted family and friends that you needed help or to be seen in the hospital after doing as much fighting as you could against your own body.

The first time you bravely looked down at your incision and saw your body forever changed and came to see your scars as battle wounds. 

Waking up each day not knowing what the next 10 minutes will feel like for you and getting after it anyway. 

Not knowing if you’ll find your person, but meeting people and having the courage to share about your health issues, even if there are heartbreaks and disappointments along the way.

Deciding to have a baby and discussing family planning, despite all the what ifs and becoming a parent because that’s what you hoped for prior to your IBD. 

Landing that dream job with your IBD in your back pocket, not letting the detours stop you from finding the path you were meant to go on. 

Celebrate the independence you’ve discovered

The list goes on and on! No matter how old you are when diagnosed with IBD, in that moment we are robbed of our naivety and thoughts of invincibility, and we’re forced to go on a lifelong war and conquest. Our bodies no longer feel like ours. Our dreams feel in disarray. Our people may change and not be who you thought they were. Our hearts may break, but like a phoenix this disease can build you up just as much as it breaks you down. 

The reprieve of remission, while not perfect or without symptoms has enabled me to breathe and regain my grounding. In 2015, after three back-to-back bowel obstructions and 18 inches of my small intestine, Meckel’s diverticulum, and appendix removed, there was only one way to go and that was up. 

Give yourself grace. Celebrate the independence you’ve discovered that you may not be able to have realized until you’re years out like it took me. And when you’re in the hospital, in for a routine clinic visit or for labs, taking your meds and balancing every daily decision against how it will make your IBD feel, you’ll come to realize what you take on and all you accomplish every day just to survive and thrive, makes you something special. While you may feel dependent on others—and the support of caretakers and a support system can’t be understated, neither can the endless strength that lies within you.

How to be an investigative journalist specializing in chronic illness

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Chronic illness forces you to wear many hats and approach life in ways you never thought possible. One of those hats is being an investigative journalist or sleuth. Each time something starts going awry with our health we immediately start the mental gymnastics about what could be going on and if the symptoms are linked to our IBD.

I find that even though my Crohn’s has been in remission since August 2015, that the next flare always looms in a cloud of worry when I’m not feeling my best. 

This past week I experienced this firsthand when my eyes both started twitching nonstop, along with headaches. I started thinking about what I could have done to trigger this bodily response. Was it Crohn’s related? Hormonal from breastfeeding weening? A mineral deficiency? A problem with my eyes or vision? Sleep deprivation or stress? The laundry list of possibilities and worries weighed heavily on me. After consulting with my GI, OB, and having an appointment with my eye doctor, I learned the eye twitching was a result of allergies. I now do eye drops once a day to help. It was such a relief to get an answer and physically be able to do something to make myself feel better.

When you notice an uptick in IBD symptoms or health issues in general how do you get to the bottom of what’s going on?

Here are my top tips for getting answers:

•Be proactive. Don’t let things fester and let your anxiety get the best of you.

•Take physical notes, not just mental ones. As the hours turn to days it can be difficult to remember when symptoms began and if they progressed. Keep a simple log of what is happening, how often, the severity, etc. 

•Reach out to care providers early and often. Send a quick message on the patient portal informing your GI about what is going on. With IBD, I find it helpful to always loop my gastroenterologist in since so many issues are often related to Crohn’s. 

•Be seen. If symptoms don’t resolve in 3-5 days, it’s a good idea to be seen in person or at least a telehealth appointment. You can always get on the books and cancel an appointment if you start to feel better. 

•Try not to Google too much. While this is always tempting and can feel like a quick way of gaining understanding, it also can lead to going down a dangerous rabbit hole of what ifs that possibly aren’t even relevant. 

•Listen to your gut. You know when something feels off. Don’t drown out how your body is speaking to you through symptoms. 

•Practice mindfulness and calming exercises. It’s not unusual to feel up against a wall or like you’re taking two steps forward and one step back with chronic illness. Remember to breathe. Take a walk outside to clear your head. Do all you can to rest your mind from stresses that can trigger your IBD.

I get how exhausting it is to constantly feel at odds with your body and worry about what could be going on. Suffering in silence and not communicating health challenges only sets you back from feeling your best. Be mindful of how you feel each day and feel empowered by collaborating with your care team and giving them all the necessary intel to have the full picture when figuring out your health story past and present. 

Stay tuned for a special discussion on IBDLyfe, Wednesday June 29, 2022, at 1 pm CT about “How to Be Your Own Best Advocate in a Provider Setting.” I’ll be speaking alongside fellow patient advocate, Tina Aswani Omprakash. Register here.

14 years of injections: What I’ve learned as a mom with Crohn’s

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This blog article is sponsored by Portal Instruments. All opinions and experiences shared are my own.

I’ll always remember how I felt the moment I was told I needed to go on a biologic drug to try and manage and control my Crohn’s disease. It was Fourth of July weekend 2008. My gastroenterologist walked into my hospital room and told me it was time to “break out the big guns,” meaning starting to get medication through an infusion or through a self-injection. I was a morning news anchor at the time in Wisconsin, three years into my patient journey. I knew without a doubt, for privacy reasons, and keeping my chronic health issue under the radar, that doing an injection in the comfort of my apartment was the best choice. As I watched the fireworks reflect off the hospital room window with my mom, tears flowed down my face. I didn’t know how on God’s green Earth I was ever going to be able to give myself an injection for the rest of my life.

I was never a huge fan of needles prior to my diagnosis. Once you have Inflammatory Bowel Disease, needles unfortunately are all part of it. While we may get desensitized, patients would give anything to be able to treat their disease without needles. When I started on my biologic, my mom and I went to my gastroenterologist office and a nurse told me I needed to do four, painful injections in my thighs because at the time I didn’t have enough fat on my stomach. I was shaking like a leaf. I had no idea what to expect, I was about to inflict pain on myself, the injector felt so foreign in my sweaty palms, and I was scared about not only how much it was going to hurt, but also the long-term side effects the medication could cause to my body. 

I did the first injection and it felt like liquid fire burning through my skin. I couldn’t believe I had to sit there and do three more, back…to back…to back. The experience was traumatizing. When I finally did all four, my mom and I walked into the hallway and I embraced her, crying because of my reality, and knowing that in two weeks I would need to inject two more needles into my thighs for the final loading dose. Since July 2008, I’ve done a self-injection every other Monday and for a short time weekly, while I was flaring. That’s more than 2,600 shots. 

Dreading “shot day”

The first few years I would absolutely dread my “shot day” and deal with the looming dread each week. Early on I would get emotional during the process and feel bad for myself. I was only 25 years old. It made me feel like I was a sickly person. My peers couldn’t relate. It was isolating and overwhelming. Every time I open my fridge, the box of injections is staring back at me as a constant reminder of what’s to come. 

Doing my injections as an IBD mom

Fast forward to present day, I’m now a 38-year-old mom of three. Luckily, the formula for the medication was changed in 2018, making the drug virtually “pain-free”, but there are times I still feel the needle. Even though I have my medication process down to a science, I still wish I didn’t have to do it and I usually wait until Monday nights to do it. The timing is moreso out of habit, because when I was a morning news anchor there was no way I was going to deal with an injection at 2 a.m. I started a tradition of doing my injection while watching the Bachelor/Bachelorette, and that’s carried over now that I have three young children, often waiting until after their bedtimes. Each time after I’m done with my shot, I text my mom to let her know how it went. She’s a nurse and has been my greatest support with my IBD since the day I was diagnosed.

Sometimes my 5-year-old and 3-year-old watch me do my injection and each time they are intrigued. I’m sure my 11-month-old will be the same once he starts to gain an understanding of what I’m doing. It makes me sad that they often witness me doing my injection, but they are also my greatest motivation to be strong and smile through it. Watching me doing injections has made my kids incredibly brave at the pediatrician when it’s time for them to get their immunizations. Because I have little ones, I have to be mindful of disposing of my medication properly and keeping the Sharps disposal container out of harm’s way. We keep Sharps Containers up high in a cubby hole in our laundry room and I dispose of the injector pen immediately. 

As an IBD mom, my greatest fear is passing along my Crohn’s to my children. While the risk is low, it’s there. I hope and pray my children won’t ever need to receive a biologic medication whether it’s through self-injection or infusion. For me, there’s no end in sight, I’m expected to be on my medication (if it remains therapeutic) for the rest of my life. Thinking of my babies having to deal with needles and being forced to inflict pain on them would be difficult for me and only add to the guilt.

The future holds so much promise when it comes to drug delivery without a needle. My hope is that in the years to come, other people won’t have to succumb to the same anxiety, pain, and worry I’ve had to deal with for more than a decade.

The Patient Experience: Making the Leap from Pediatric-to-Adult IBD care

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Moving away for school. A future career. Relationships. Discovering your identity. Switching from a pediatric IBD care team to adult providers. All while living with a chronic illness. This is the stark reality for young adults living with Crohn’s disease and ulcerative colitis. Juggling all these major life milestones and having to get acclimated to new physicians while taking the lead on disease management is often met with anxiety and worry from young patients, their parents, and caregivers. IBD is a family disease. Even if only one person in the household personally lives with the issue, the disease impacts each person.

This week on Lights, Camera, Crohn’s we hear from patients and caregivers who have lived through the experience and from pediatric GI’s about how best families can be supported through the changes to make them as seamless as possible for everyone involved.

Input from those who have made the switch

Aging out of pediatric doctors can be a stressful time for everyone involved. Let’s start with input from those with IBD who have made the switch along with what some parents and caregivers had to say.

  • Start researching doctors early. Do your homework and see what insurance providers accept and what hospitals they are affiliated with.
  • Ask your current pediatric doctors for recommendations/referrals.
  • Before the first visit make sure the adult GI has received copies of medical records.
  • Have healthcare proxy and power of attorney papers on file.
    • “I just turned 20, but I’m still in pediatrics and plan on staying until I graduate from college, as that is the norm at my hospital. However, as an adult in peds, I found it important to have healthcare proxy and power of attorney papers on file so my mom can still help me and if something were to happen like while I’m away at school she is able to get information. I broke my arm this past fall and my body went into such shock that I couldn’t give the hospital any information. My friends were with me and contacted my mom, but because I was 19, the hospital couldn’t even confirm to her that I was in the building. This was a wake-up call. We started thinking about, “what if this was my IBD?” and decided it was necessary to have the papers on file just in case. I still ask my mom to be involved in my care, but we both have the understanding that I have the final say.”- Anna

Navigating the switch through college

Heidi was diagnosed with Crohn’s when she was 9. She’s now 41. When she reflects on the transition from a pediatric doctor to one who treats adults, she recalls the process being fairly simple and a change she welcomed with open arms.

“The best thing was being talked to directly and my opinions mattered more in my later teenage years with the new doctor. Of course, my parents had my best interests at heart, but appointments were so frustrating as a young girl. Another reason for the seamless transition was that my new doctors were amazing. I switched at 18 and then again at 22 when I graduated college and moved away from home. My care team listened to me and saved my life. I know I’m lucky to have found such a wonderful team of doctors.”

Katie wishes there had been a support group (even online) for teenagers back when she was phased into an adult GI. She says when she was diagnosed with IBD at age 15, she often felt uncomfortable discussing her symptoms and didn’t feel her pediatric GI was that great with kids.

“I felt detached from my GI until I was in my 20s and had the confidence to advocate for myself. I was so lost and refused to tell classmates what was wrong with me for fear of being made fun of. I ended up missing so much school I decided to drop out, get my GED, and go straight to college. It was a terrible time to be honest.”

The difference in pediatric vs. adult care

“The transition happened quite fast as I was being referred to an adult surgeon for my complications that the pediatric team were not experienced or educated enough to treat for Crohn’s. I was thrown in the water with no guidance when I started seeing physicians who treated adults with Crohn’s. The pediatric GI team would dumb some things down for me and make my problems not seem “as bad.” As soon as complications started arising, they threw the towel in and basically told me they couldn’t help me anymore and would be better off seeing a care team with more experience with my symptoms and complications.”-Chrissy

Natasha experienced the transition about 13 years ago. Her pediatric team helped her choose an adult GI. And the guidance didn’t stop there.

“My pediatric GI told me who she wanted for me and then went with me to interview the doctors in the adult team. Once I chose, my pediatric GI attended every appointment with me until we all agreed I was ready to move into the next step of my care, which luckily was quickly. And the two doctors stayed in communication. My advice—be open with your doctor.”

Natasha recommends asking yourself the following questions to help streamline the process and make it less nerve-wracking.

  • What are you looking for in your next step of care?
  • What are you looking for during the transition process?
  • What is important to you in a physician?

Do your own research

“I had an AMAZING pediatric GI when I switched, and I just went with who she recommended. Looking back, I wish I did my research because he is not who I would have chosen for myself. I would recommend doing your own research and make sure whoever you find is willing to work with you and thoroughly go through your medical history and all your results. Too many doctors seem to just think they know everything, but we know our bodies best and need to have a medical team who lets us advocate for ourselves.”-Danielle

Jennie has lived with IBD for nearly 20 years. She has a PhD, works in IBD care, and recognizes she has the privilege of a strong support network and insurance. As an IBD psychologist she recognizes how difficult the system and transition can be for everyone involved.

“I was diagnosed with IBD at 12 and transitioned to adult care around age 18. I was extremely sick at the time and ended up having a proctocolectomy within months of transitioning. I think the biggest things for me were the notable shift in culture between the peds and adult world, and the insurance pieces. It’s so much for kids and families. Lastly. I’ve noticed the transition is nuanced for my parents who were so good at being my advocates, they will still offer to call the doctor if I tell them I am not feeling well, and they have a tough time not having the same significant role they did when I was younger.”

Allie was diagnosed with Crohn’s disease when she was 12. Her mom attended all her appointments until she turned 18, and only stopped going then because she was out of state for college and seeing a pediatric GI there until she turned 22. Allie’s mom kept a medical binder of all her procedures, lab results, and details about her patient journey. She says when she phased out of pediatrics and started taking matters into her own hands, she found the binder her mom made to be beneficial—Allie found herself referring to it when she couldn’t remember everything.

“What helped the transition the most was going to appointments on my own when I turned 18. I felt more prepared to speak for myself when I switched to an adult GI.”

Allie’s mom also inspired her to ask the tough questions. After witnessing how her mom spoke up to doctors it empowered her to speak up and stop minimizing her struggles. By watching how her mom handled appointments, it inspired Allie to write down all her questions and concerns before doctor appointments, so she doesn’t forget anything.

“My mom asked me what fights I wanted her to fight for me and what I wanted to do myself. She guided me on what I might need to ask about when I had no clue—even as an adult she still offers to help call insurance companies to fight authorization battles. She gave me space to live my life when I turned 18. She worried, but she never hounded me for updates (are you taking your medication?, how are you feeling? Are you eating ok?”…but she always conveyed support (both my parents did) when I needed it most she showed up.”

Sari recommends young adults with IBD to ease into taking control of their care as early as possible.

“Things like refilling your own meds, scheduling your own appointments, and driving yourself to appointments goes a long way when it comes to learning how to stay organized and advocate for yourself. You don’t want to be doing all those things for the first time when you go to college or a start a new job—too many scary or unknown things at once!”

Check out what pediatric GI’s have to say about bridging the gap and ensure continuation of care.

Dr. Sandra Kim, MD, Associate Professor of Pediatrics, Director, Inflammatory Bowel Disease Center, UPMC Children’s Hospital of Pittsburgh, says, “Transition is the preparation process while the young adult/teens are still under the care of the pediatric team. Transfer of care is the actual “handoff” when the young adult moves from the pediatric GI team to the adult GI providers. Teens want independence but struggle with disease knowledge and self-management skills. Therefore, the pediatric GI team needs to help the teen (and the family, too!) by being active listeners, communicators, and educators. The healthcare team also should utilize things like transition tools.”

Dr. Kim went on to say that GI doctors need to assess how teens are doing on the road to greater independence and that shared decision-making helps build partnerships between adult and pediatric GI providers.

For the adult GI team:

  • Collaborate with the peds team in the initial stages of care transfer.
  • Anticipate existing gaps of knowledge and self – management skills
  • Prepare for more time during appointments for questions, additional education, and working with the family. Parents need help during this time of care transfer, too!
Woman patient signing medical documents discussing medication treatment with african american practitioner in hospital office during clinical consultation. Doctor physician explaining disease symptoms

Dr. Jonathan D. Moses, Assistant Professor of Pediatrics, Director, Pediatric Inflammatory Bowel Disease Program, UH Rainbow Babies and Children’s Hospital, explained how his hospital has a multidisciplinary pediatric IBD team that engages patients in a Health Maintenance Education Clinic as early as 11 years old.

“This allows them to build up the self-management skills needed for a successful transition to adult GI, when they are ready. In lieu of this resource, parents can engage their health care providers about ways to get their child more involved in their care and provide them with the autonomy, and support, to take over aspects of their care over a period of time.”

Dr. Hilary Michel, MD, Assistant Professor of Clinical Pediatrics, Nationwide Children’s Hospital, says a successful transition from pediatric to adult care requires that young folks have developed the knowledge and skills needed to understand and manage their disease independently.

“This knowledge and skill is not gained overnight, and ideally should be obtained gradually. Transfer to adult care should be planned in advance, when a patient is feeling well and has a good grasp on their disease management, so there are no gaps between peds and adult care. Parents and families can help the process by allowing teens to speak with their healthcare providers alone, gradually share care responsibilities, encourage them to learn about their disease, and highlight their successes.”

How this works in real time:

  • Patients can listen and participate in their visits.
  • Set goals with your healthcare team and work toward them, ask questions and share your opinions.
  • Healthcare teams can help by providing a non-judgmental space, listening attentively, encouraging young people’s success, engaging patients in decisions, checking for understanding, getting to know patients as people (talk about school, friends, activities), and connecting patients with resources

Dr. Whitney Marie Sunseri, MD, Pediatric Gastroenterologist, Assistant Professor of Pediatrics, UPMC Children’s Hospital of Pittsburgh, says “I always encourage a step-wise approach to transitioning to the adult world. I encourage patients to know their diagnosis, what medications they take and when, to recall their last scopes, and to be able to report all of their symptoms without the assistance of their parents. Then as they get older, and closer to the time of transition, I encourage them to look into different adult doctors. I give recommendations as well.”

Dr. Sunseri advises caregivers and patients to be proactive and look at reviews of doctors and who is in their insurance network. She says the most important visit is the one where patients follow up with her after their first adult visit to make sure it was a good fit and that they are in good hands.

“It’s bittersweet watching these children grow in so many ways and head off into the hands of another provider. Your heart swells with pride and breaks at the same time.”

Resources and Communities of Support

Sneha was diagnosed with Crohn’s at age six. She’s now 23 and still figuring out what her future will look like with IBD. As she grew up, she couldn’t find a community of young adults. This inspired her to create Generation Patient and the Crohn’s and Colitis Young Adults Network.

“Peer support during this transition is critical, so we host seven virtual community meetings. We have hosted over 250 of these peer support meetings over the last two years. I think peer support should be seen as essential during this transition period and it has been the best thing to come out of living with IBD.”

Generation Patient: Instagram–@generationpatient

CCYN: Instagram–@ccyanetwork

Join the American College of Gastroenterology Thursday, May 4, 2022 at Noon and 8 pm ET for a discussion about “Empowering Patients Through the Transition of Care in IBD”. Click here to register.

ImproveCareNow (Instagram: @ImproveCareNow)

The Circle of Care Guidebook for Caregivers of Children and Adolescents Managing Crohn’s Disease

Crohn’s and Colitis Foundation Youth + Parent Resources

National Council of College Leaders

Transitioning GI Patients from Pediatric to Adult Care

Transitioning from Pediatric to Adult IBD (This includes a helpful breakdown of ages and a checklists for independence, health, and daily activities)

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Transitioning a Patient With IBD from Pediatric to Adult Care

Releasing Guilt with IBD: You don’t have to choose between medication and diet

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There’s no black and white approach when it comes to managing and treating inflammatory bowel disease. Newsflash—you don’t need to choose between medication and diet (nutrition). You can do both! This week on Lights, Camera, Crohn’s, we hear from registered dietitian and ulcerative colitis warrior, Ashley Hurst, about how her personal patient journey inspired her to look into targeted strategies for improving quality of life with IBD.

Ashley was diagnosed with ulcerative colitis at age 24, but she remembers symptoms starting when she was 7 years old. She lacked support for a long time, so her symptoms became her “normal” reality. When she was in college, she sought help for two years before she finally was able to get a diagnosis.

“I went to several doctors who dismissed my concerns thinking the bleeding was just fissures or hemorrhoids. It wasn’t until I was in a nutrition class in college, that I realized it might be something more. I remember reading about Crohn’s and ulcerative colitis and feeling like I was reading about all my symptoms.”

Finally, the fourth doctor she went to diagnosed her with IBD. She experienced a gamut of emotions ranging from relief to disbelief. More than anything, her diagnosis was a huge financial burden. At the time, she was working 2-3 jobs without health insurance. She couldn’t afford medication or even a colonoscopy bill.

“Since I couldn’t afford medications, I relied on nutrition and my own protocol. Once I was more financially stable, and had health insurance, I was able to start mesalamine rectal enemas and oral tablets, while sticking to my nutrition plan.

A preference for finding the balance between diet and medication

“Nutrition and medication have been lifesaving for me at times and I’ve found I prefer doing a bit of both (and so does my gut!). When choosing what route to go for IBD, often we feel a sense of guilt around taking medications. However, it’s important to remember that with whatever treatment route we go, we must weigh the risks versus the benefits.”

An uncontrolled flare is a risk and can impact our quality of life significantly. If you aren’t comfortable with medications your doctor has recommended, you can always ask what other options are available. It’s important to feel good about whatever treatment route you are taking and remember it’s your body, and your choice—just be prepared to face the consequences of active disease and hospitalization if you attempt to go against medical advice and take matters into your own hands. There is a fine balance distinguishing what triggers you and how best your disease is controlled.

The story behind The Crohn’s and Colitis Dietitians

When Ashley initially worked as a registered dietitian, she didn’t specialize in IBD. But as the years went by, she realized Crohn’s and Colitis patients were her favorite people to work with.

“I felt drawn to supporting IBD patients like myself and saw what a need there was for IBD specialized dietitians. Four years ago, I lost my cousin and close friend who had Crohn’s, and he left a lasting impact on me that further increased my desire to make a greater impact in the Crohn’s & Colitis community. He inspired me to be open about my diagnosis and get more connected with others who have IBD.”

Once Ashley decided to specialize in IBD, she quickly discovered how fulfilling it was to do work that has a lasting impact. Ashley says many people seek their support for IBD nutrition, but often feel like they need to choose one or the other.

“Most IBD research studies on both dietary strategies and targeted supplementation for IBD look at participants that are also on medications. Research continues to show that a combined approach using both medications and nutrition is the best path and can help increase chances of remission. It can be tempting to try and experiment by doing one thing at a time to see what works. However, there is currently no one cure for IBD, so treatments typically do involve a multi-faceted approach.”

As business started booming, rather than create a wait list, she brought on three other dietitians. Ashley and her team specialize in providing medical nutrition therapy for Crohn’s and Colitis patients, but also tackle SIBO, acid reflux, allergies, EOE, and much more. All four of the dietitians on the team have IBD, so they understand the patient perspective and the urgency to reach relief.

“As a team, we’ve had the privilege of working with hundreds of patients with digestive challenges, and we have witnessed the remarkable transformations that are possible. We are passionate about helping people not only find relief but make peace with food again.”

Like a fish out of water concerning diet

Many of the people with IBD who Ashley speaks with express that they were dismissed when asking their provider for a dietitian referral.

“The most common thing I hear is- “I Googled what to eat for IBD and Google left me with what NOT to eat for IBD and I feel even more confused with all the conflicting information!” It’s true, the internet is filled with conflicting information on this topic. This leaves people feeling afraid of food and often only eating just a few “safe foods”. Oftentimes these self-imposed food restrictions are unnecessary and lead to malnutrition, loss, low microbiome diversity, poor gut health, and ironically more symptoms!”

This is where Ashley and her team come in. They help those with IBD sort through all the nonsense and get to what really matters most and what works on an individualized basis.

“We are interested in supporting IBD patients, not just while they work with us, but for the long haul! We equip our patients with tools to learn so that they feel confident navigating nutrition even after they leave. We also offer a variety of free and low-cost educational resources on our website and Instagram for those people who just need a next step.”

How to know if you’re truly “healing” your IBD with food

The first question Ashley asks fellow patients she consults with is—is your nutritional approach working? The only way to know is to confirm through colonoscopy and inflammatory lab or stool markers.

“Symptoms alone are not always a great indicator of how our IBD is doing. It is important to monitor your IBD even if you are feeling better to make sure your disease is not progressing.”

Medication is not the “easy way out” and is not a sign of failure

Ashley and her team work with many IBD patients who are on biologics and utilize nutrition as a complementary approach to allow their medications to work better.

“Medications often lower certain nutrients, so one way you can support yourself long term is to check for deficiencies regularly. Some nutrients like zinc and vitamin D we need to regulate inflammation and help support our digestive tract lining. Ensuring they are at appropriate levels can help prevent flares. Vitamin D especially tends to get low with inflammation and is correlated with flare frequency and severity.”

Many patients avoid fiber because they fear it will trigger symptoms. Personally, I remember the first decade of living with Crohn’s, I was told I couldn’t have more than 5 mg of fiber per serving, which I now know is not the case.

“Understanding nutrition can help with expanding your diet. Research shows the importance of fiber for IBD for inflammation reduction, preventing flares and also complications. However, fiber is the most common thing IBD patients avoid. There are many ways you can approach expanding your diet without triggering symptoms and working with an IBD dietitian can help you navigate this better.”

The Roadmap of Nutrition

On average, Crohn’s and Colitis Dietitians helps clients reduce their IBD symptoms by 50-75%. Most report that their other big takeaways are improved energy and feeling more at peace with their food choices.

“We help you achieve this through working with people in a group setting and one-on-one. With one-on-one work we see people for a total of 6 months. It starts off with an intake session where we get to know your goals and your whole story with IBD and outside of IBD. After this session we put together a customized treatment plan that is your roadmap forward.”

The process includes dietary guidance (what to prioritize in the diet) and often targeted supplementation recommendations too. After this session, Ashley and her team see people each month in sessions to monitor progress and troubleshoot anything that comes up.

“We also offer access to us through chat throughout the whole 6 months for any questions that come up. We offer customized meal planning and video modules designed to help you.”

IBD is not your fault. It’s important to remember you didn’t sign up for this and you shouldn’t have to carry the weight of it alone.

“It can be incredibly helpful to have a team around you to support you through flares and the ups and downs of IBD. An IBD focused dietitian can help you navigate what to eat, treat nutrient deficiencies, sort through best options for targeted supplementation and help you reduce IBD symptoms.”

Outsource your stress. It’s overwhelming to juggle all the proverbial IBD balls in the air.

“Having a support team alleviates stress. It’s calming to know you don’t have to think through every decision and worry by yourself. It helps to have someone to lean on and takes the weight off your shoulders.

Don’t base your journey off what works for others. Just because you see someone proclaim their success by treating their IBD with food, doesn’t mean you’ll have the same experience. Before making any rash moves with your treatment plan, it’s imperative you communicate with your care team and get medically guided advice vs. following what you see someone post on Instagram. Same goes for medications—just because one person has had a great response on a biologic, does not mean you’ll have the same response.

Here are what some patients have to say about their experience:

“I’m so glad I started this program. I had to stop biologics due to developing antibodies and have been off biologics for over six months and since starting with the Crohn’s and Colitis Dietitians, I feel better than when I was on them. I only wish I found this program earlier.” -A.T.

“During the 6 months I was with Crohn’s and Colitis Dietitians- my symptoms of diarrhea and urgency reduced significantly, I have more energy and my inflammation decreased from over 100 to 38 (fecal calprotectin). Even my doctor was surprised and curious about what I had been doing with my nutrition!” -S

Connect with Crohn’s and Colitis Dietitians

Email: support@crohnsandcolitisdietitians.com

Instagram: @crohns_and_colitis_dietitian

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Check out these FREE resources created by Crohn’s and Colitis Dietitians:

E-book + Recipes: What to Eat for IBD 

E-book + Meal Plan: One Week Meal Plan + E-book (on website home page)

The Patient Experience: Puberty and IBD

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Whether you are a parent or not it’s heartbreaking to imagine how it would feel if you found out your child (no matter their age) was diagnosed with a chronic illness like inflammatory bowel disease. Of the more than six million people in the world diagnosed with Crohn’s and ulcerative colitis, approximately 25% of patients are diagnosed during childhood and adolescence, most of which are going through puberty. Impaired growth, pubertal delay, and low bone density are all common in children and teens with IBD. They can occur at diagnosis or at any time during a patient’s IBD journey.

As an IBD mom of three, who was not diagnosed until I was 21 years old, I personally don’t have the experience or perspective to share what it’s like to grow up with IBD or have a child diagnosed with it, so I tapped into several caregivers in our community, along with four leading pediatric gastroenterologists for input.

My hope is this article will serve as a helpful resource as you navigate the challenging waters of puberty with your loved one. Teen years are difficult enough without a chronic disease, taking a close look at how this impacts a young adult physically, emotionally, and mentally is something that deserves much more attention than a blog article.

Concerns from patients and caregivers

Before we get into the medical input, I want to share some of the messages I received this week from young patients and their caregivers so you can see firsthand how complicated this period of life is for everyone involved.

“I’m 14 years old. I was diagnosed with Crohn’s when I was 12, which marked an influential time in my life. It can be hard to cope with being diagnosed and having a chronic illness at that age. That year leading to my Bar Mitzvah, a cultural rights of passage from boyhood to manhood, was really challenging for me. At a time when changes are going on and puberty takes its course, learning to trust your body and that it is working is key. Rather than trusting my body, I had a lot trust issues. If my body could turn itself to work against me in my GI system, what’s to say it wouldn’t turn on me other ways? I am especially worried about my reproductive system. Since I was a little boy, I always knew I wanted to be a father when I grew up. Having kids and being a family man has always been my highest purpose in life. Since my Crohn’s diagnosis, I’ve felt anxious and worried about whether my Crohn’s or my body will stop me from fulfilling that dream.”

“I often worry about whether my son’s hormones will put him into a flare and wonder what the best way to approach the school about his Crohn’s is.”

“My biggest puberty concern is delayed growth or slowed growth and flares. I’ve heard a lot about puberty hormones really causing issues. Is there truth to this?”

“Will my almost 15-year-old son start puberty once his treatment kicks in or will he always look like a 12-year-old child?”

“My 15-year-old lost more than 15 pounds in the last year, we’ve checked all kinds of things, but can’t figure it out. He’s on renflexis (generic Remicade) and his colonoscopy came back clean. He gets full easily and deals with chronic constipation. I hope his IBD doesn’t stunt his growth.”

“The anxiety of managing IBD while combining that with the developmentally normal anxieties of the adolescent years can result in mental health issues that are hard to pinpoint. Body image issues that are normal as their bodies change, mixing with body image and food-related issues associated with IBD (good foods and bad foods, overly focusing on diet, etc.) which can lead into worrisome territory like disordered eating and worse. As children separate from their parents more with each passing year (which is normal), it becomes harder to monitor IBD symptoms and disease progression as a parent. As someone who has always been in the driver’s seat about IBD, this is a scary shift and I worry some symptoms will go unnoticed and become exacerbated.”

“That puberty will stop growth—growth has been severely impacted by Crohn’s before diagnosis and it did—hitting puberty early meant growth stopped and she only reached 4’9”/4’10”. Her periods also add to existing fatigue levels.”

“I worry about medication not working like it used to due to so much change in the body. I also worry about how she may feel about her image comparing herself to others at that age with so many scars or if she ever needs to have an ostomy bag. I worry her IBD will affect her cycles or make them more painful.”

“That my son will go into a flare requiring heavy intervention that goes far beyond our comfort zone, but we’ll feel trapped so he’s able to grow at the right time.”

“My 13-year-old son was diagnosed with Crohn’s a little over a year ago. He is doing ok now and on Humira bi-weekly. I’m mostly concerned about his growth, as he is small for his age. He has gained about 20 pounds in the last year, but he was malnourished as COVID made it difficult to get his diagnosis. Hoping he stays on track and continues growing and that his growth potential isn’t adversely affected by his IBD.”

“As a kid who went through being on high dose steroids while going through puberty, bless my mother!”

“Delayed puberty is a big thing. Also, how, and when is it appropriate to start transitioning responsibly for ultimate transfer of care. Mental health is often a concern for adolescents (anxiety/depression).”

“Flares. Many parents report puberty as being a challenging time for IBD. Imagine all the normal teen/puberty hormonal issues and then add IBD (and I say this as a lucky parent with our teens). I think every parent that makes it out alive should get a very long vacation. The #1 thing I hear from parents of kids with IBD is: “my heart breaks every single day”. Whether in remission or not, the disease is a persistent and heavy burden on patients and families. With all the noise, it’s important not to lose sight of this fact.”

“I was diagnosed with ulcerative colitis at age 13 and it all happened very quickly. I was in eighth grade – my body changed almost immediately after being put on prednisone. Being an early developer, puberty was a challenge for me. I didn’t look like most other girls in my grade. So when I started getting really bad acne and a swollen (moon) face from the meds, it was the icing on the cake. I remember ninth grade consisted of me coming home from school and crying to my mom because I felt what was happening to me was unfair. I’d have to excuse myself during classes to use the bathroom, so everyone knew what was happening. I was mortified. And although I was an “early bloomer”, I can’t help but wonder if I would have grown a bit more if I hadn’t been diagnosed, put on prednisone off and on for the first 3 years, or started on biologic treatment. There’s always the questions and mystery of what IBD has potentially taken away from me. But living with IBD also resulted in me growing up pretty quickly. I was able to navigate the healthcare system by the time I graduated from high school. I learned to talk about my body and my health – things that I don’t believe my peers could articulate by that time. So it came with some benefits – or at least things that I have been able to turn into positives. My experiences have made me a stronger person. And I’m thankful for that.”

Impaired Growth: Why it happens and what to watch out for

According to Dr. Sabina Ali, MD, Associate Clinical Professor, Director of IBD program, UCSF Benioff Children’s Hospitals, the most common extraintestinal manifestation of IBD in children is impaired growth, particularly in Crohn’s disease and that’s also what she hears from patients and their families when it comes to their greatest concern.

“Growth is a dynamic marker of overall health in children and adolescents, which occurs in 10-30% of cases. Short stature and failure to grow can precede IBD symptoms. It is important to monitor nutrition and growth closely and as this can lead to delayed puberty. Make sure the child is routinely getting height, weight and BMI measured. Growth impairment is more common in males than females with Crohn’s disease. It’s important to get disease in remission.”

Dr. Ali went on to explain that growth issues are more frequently seen in children who have never been in remission or for those who have dealt with flare ups in the pre-pubertal period.

“Pubertal delay may potentially decrease bone mineralization and affect quality of life in children who realize that their sexual maturation is different from their peers.”

Dr. Jonathan D. Moses, Assistant Professor of Pediatrics, Director, Pediatric Inflammatory Bowel Disease Program, UH Rainbow Babies and Children’s Hospital, agrees that remission is essential as a first step to ensure normal bone growth and pubertal development. Most of the time the concerns we hear about puberty and IBD is at the initial diagnosis when parents will note that young women have not started their menstrual cycle yet at the expected age or young men have not started their “growth spurt” yet.

“Growth is a key element of children diagnosed prior to puberty. Our goal is to provide the therapy that will allow them to be in continuous remission and achieve their final adult height and avoid any pubertal delays. If there are any concerns with this, we typically place a referral to the pediatric endocrinologist to help co-manage this.”

According to this University of California San Francisco study, boys are three times more likely than girls to deal with one of the conditions most devastating effects: the failure to grow normally. Researchers were surprised by this finding because the study also found girls had a more severe disease course than boys.

Dr. Ali says that a novel finding is that a high proportion of patients with ulcerative colitis exhibited continued growth, suggesting delayed skeletal maturation is also frequent in ulcerative colitis, contrary to common assumptions. For patients exhibiting continued growth, median final adult height was greater in males with ulcerative colitis than males with Crohn’s disease but did not differ significantly in females with ulcerative colitis, compared with females with Crohn’s disease. This finding supports the growing body of literature that statural growth impairment is more common in males than females with Crohn’s disease.”

Dr. Hilary Michel, MD, Assistant Professor of Clinical Pediatrics, Nationwide Children’s Hospital, explains the importance of monitoring pediatric GI patients’ weight, height, and pubertal development over time. She says measuring weight and height and asking about pubertal development helps make sure each patient is tracking along their growth curves and developing at an appropriate rate.

“In addition to monitoring IBD symptoms and checking labs, stool tests, and scopes, monitoring growth and pubertal development is another way to make sure we are treating IBD inflammation completely. If a patient is not going through normal stages of puberty, or is going through puberty more slowly than expected, it’s a hint that we should check on their IBD disease control! And if their disease is in control, then we need to think of other causes for delayed puberty and get them in to see the right experts to help.”

Dr. Sandra Kim, MD, Associate Professor of Pediatrics, Director, Inflammatory Bowel Disease Center, UPMC Children’s Hospital of Pittsburgh, says along with monitoring growth and nutritional status, it’s important to keep a close eye on emotional state and quality of life.

“It’s important children understand their disease, and for families and the care team to understand where the child is not only medically, but psychologically and developmentally. As a pediatric gastroenterologist, who focuses on the care of children and teens living with IBD, I know I have a unique relationship and responsibility as I watch “my kids” grow up.”

Dr. Kim says, “We see growth impairment in children and teens with Crohn’s much more so than with ulcerative colitis, especially with extensive involvement of the small intestine. Active inflammation in the small intestine can impact an individual’s ability to absorb nutrients. IBD also impacts appetite and can lead to inadequate nutrition.”

According to Dr. Kim, studies have shown up to 80% of children (males>females) have some degree of both weight and growth impairment when their Crohn’s is not controlled. While studies do vary in the range affected, it’s clearly a significant issue.

Medication and the pubescent years

In general all pediatric gastroenterologists try to limit and shorten the exposure of steroids in children.

Dr. Ali says, “Recent inception cohort studies in pediatric IBD have highlighted baseline phenotyping of patients to predict the severity of their disease course and help identify who will benefit the most from early biologic treatment. Biologic therapies have improved outcomes in pediatric IBD, including achieving mucosal healing as well as improved growth and pubertal development.”

Prior to this, the goals of treatment in Crohn’s disease were focused on controlling symptoms, enhancing quality of life, minimizing complications to prevent surgery, and restoring growth in pediatric patients. Evidence has shown that mucosal healing is associated with sustained corticosteroid-free clinical remission, reduced hospitalization, and lower surgery rates. According to Dr. Ali, biologics are the most effective in inducing and maintaining mucosal healing in this patient population.

Dr. Moses explains how biologics are decided upon with young patients.

“The age of the patient, in the context of the biologic era, does not seem to play a significant role at our center. If a child, regardless of age, needs a biologic medication, then we will typically proceed with this after shared decision making with the family. As a rule, for all ages, we work very hard to limit steroid exposure, both by planning out their maintenance therapy right away or using exclusive enteral nutrition (EEN) to induce remission in our patient with Crohn’s disease.”

Dr. Michel says it’s important to get IBD under control quickly since the window to achieve the goal of remission is so small.

“Because of this, growth and pubertal delay can be reasons to start a biologic as first line treatment. If steroids are used, they should be short-term (induction therapy only) to prevent negative impacts on growth and bone health. These patients may also be great candidates for exclusive enteral nutrition to treat their IBD, as it can help heal inflammation and address malnutrition without the side effects of steroids. Involving an experienced dietitian is key!”

While research has shown that disease activity may fluctuate with hormonal shifts (like those that happen with puberty, pregnancy, and even menopause), Dr. Michel says she is not aware of any specific data to connect loss of response to therapy because of puberty.

Puberty gets delayed

For pediatric patients in whom remission has never been achieved or for those who have frequent relapses, puberty is often delayed.

“The endocrine-hormonal mechanisms responsible for pubertal delay associated with inflammatory disease are incompletely understood. It is thought to be due to effect by both nutrition and inflammation,” said Dr. Ali.

Delayed puberty or delayed linear growth can be presenting signs of IBD to help clinicians make the diagnosis.

“Once these pre-teens achieve remission, they will begin to progress through puberty again and have improvement in their bone density, if it was low at baseline,” says Dr. Moses.

Dr Michel says, “The best way to ensure normal growth, weight gain, and pubertal development is to make sure their mucosa is healed. It’s also important we address low weight or malnutrition. If we’ve confirmed that IBD inflammation is resolved (through labs, stool tests like calprotectin, and scopes), and that patients are getting the nutrition they need, and we’re still seeing delayed puberty or slow growth or weight gain, this may prompt a referral to an endocrinologist, adolescent medicine doctor, or gynecologist to look for other causes of these problems.”

By adequately treating IBD and achieving mucosal healing, kids have the best chance to grow and develop normally and have healthy bones.

“Inflammation affects hormones important in growth and pubertal development, and delayed pubertal development is closely tied with poor bone health,” explained Dr. Michel. “Active inflammation can also worsen malnutrition and lead to low weight, which can delay puberty. These variables are often closely related; for example, a patient with active IBD may not feel well enough to eat regularly and lose weight or be malnourished. Or they may eat well but not be able to absorb the nutrients from their food. Or they may lose nutrients through stool or vomiting. So, treating inflammation and treating malnutrition are KEY to optimizing outcomes for kids and teens with IBD.”

Causes for the delay in puberty and decreased bone density can be multifactorial.

“Things we consider include nutritional deficiencies (not absorbing enough and/or not getting enough into your body), and the impact of inflammation (though pro-inflammatory cytokines – the “chemicals” produced by activated white blood cells – on sex hormone production, as well as growth hormone),” said Dr. Kim. “Other factors that can specifically impact bone density – decreased physical activity which leads to decreased muscle mass.”

When determining a course of therapy, a child’s quality of life and the impact of active IBD must be taken into consideration.

Dr. Kim explains, “Steroids have a great deal of side effects: external appearance (“moon” facies), psychological (can exacerbate underlying anxiety and depression; can impact sleep), bone health (decrease bone density and increasing risk of fractures), impact on wound healing, increased risk if long term on the GI tract (i.e. perforation), increased blood sugar (hyperglycemia), high blood pressure.”

What’s the deal with birth control and IBD?

Each pediatric gastroenterologist featured in this piece says they have heard from both patients and parents about oral contraceptives aggravating IBD. Dr. Ali says oral contraceptives are consistently linked to an increased risk of IBD.

Dr. Michel says since menstruating is a normal part of development for female patients, active inflammation, low weight, and malnutrition, can all play a role in delaying the onset of it. If a patient is flaring, they might have irregular periods or stop getting their period for some time. Once the problem is addressed—inflammation controlled, normal weight achieved, and malnutrition treated, menses typically resumes. IBD symptoms can also be exacerbated during menses for some women.

When it comes to choosing to go on birth control, and what birth control to choose, Dr. Michel advises patients and parents to be clear about their goals and weigh the risks and benefits.

“Goals for starting birth control can include regulating heavy periods or bad cramps, preventing pregnancy, improving premenstrual symptoms (mood, headache, fatigue), or even managing acne. There are some data about birth control pills increasing the risk of developing IBD, but research is conflicting about whether they increase the risk of flare. I would encourage any patient who is interested in starting birth control to talk with her gastroenterologist about what options might be best for her. An adolescent medicine doctor or gynecologist can also be extremely helpful to have these conversations, weigh pros and cons, and help young women and their families make informed decisions.”

Dr. Kim is no stranger to hearing concerns about the impact of oral contraceptives. She says it’s tough to determine whether birth control specifically aggravates disease.

“Women who have increased diarrhea and cramping around their cycles may have improvement in these symptoms when on birth control. Currently, there is not enough data to suggest birth control directly leads to aggravation of underlying IBD. However, there are other issues to consider when a young woman chooses the type of birth control. There is increased risk of venous thromboembolism (increased risk of forming blood clots) in individuals with IBD. There also is an increased risk for clots associated with combination oral contraceptives whether a young woman has IBD or not. Therefore, a woman who has IBD and goes on oral contraceptives not only has a higher risk of forming significant blood clots, but with more significant consequences from this.”

Dr. Kim’s recommendation? Avoid oral contraceptives with an estrogen component, if possible. Depo-Provera is an alternative, but you need to be aware that it can impact bone density. She says IUDs are safe and highly effective

How best to support young patients

  • Support groups: Discuss concerns regarding how a patient is coping with the IBD team. A social worker or psychologist on the IBD team can be a great resource.
  • Psychosocial assessments
  • Care coordination
  • Supportive counseling
  • Connection to resources

“As a pediatric gastroenterologist, my contribution is to manage their therapy as best I can to achieve remission. After that, we rely on our multidisciplinary team to address the psychosocial aspect of the disease and how this affects them at this stage in life,” said Dr. Moses. “Finally, we encourage the families to get involved with the Crohn’s and Colitis Foundation and attend Camp Oasis, if possible, to meet other children their age who also have IBD. This builds up their social support network in a way that can be life changing for them.”

Dr. Michel says, “I try to normalize their feelings, and reassure them that with effective treatment and achieving remission, we are working toward them reaching their full potential. I also think it’s a great time to involve experts like psychologists and child life specialists to help work through these concerns. Parents will often also ask about future fertility (kids and teens usually aren’t thinking of this yet)! It’s always a huge relief for families to learn that we expect normal fertility for our young folks with IBD and that the best way to ensure this is to get good control of disease.”

She advises parents to acknowledge how challenging it can be to go through puberty with IBD.

“Any feelings they’re feeling – frustration, anger, sadness – are ok. Then, I would encourage parents and patients to share these emotional and physical struggles with their healthcare team. Many centers have fantastic psychologists, social workers, and child life specialists that can help young people understand their disease, explore their emotions, and develop healthy coping skills that will serve them now and into adulthood. There are also fantastic resources online through ImproveCareNow and the Crohn’s and Colitis Foundation,” said Dr. Michel.

Dr. Kim advises parents and patients not to be afraid to ask pediatric gastroenterologists and their healthcare team for help.

“I really believe it takes a collective effort to support our children and teens. We are living in an unprecedented time with the COVID 19 pandemic (which has led to social isolation and new stressors with school, peers, and family dynamics),” she said. “Seeking our behavioral health resources (psychology, psychiatry, counseling, social work) is NEVER a sign of weakness – quite the opposite. One thing I would love to see: elimination of any perceived stigma when addressing issues around mental health. It is so crucial to address stress, anxiety, and depression. Besides the obvious impact on quality of life, we know that anxiety and depression can negatively impact an individual’s IBD itself. For the parents out there, I tell them they must check their own guilt at the door. The parents did NOT do anything to cause their child to develop IBD. I always say that you can be mad at the disease but never at themselves.”

Connect with these physicians on Twitter:

Dr. Sabina Ali: @sabpeds

Dr. Hilary Michel: @hilarymichel

Dr. Jonathan Moses: @JonathanMoses77

Dr. Sandra Kim: @SCKimCHP

Let this piece serve as a conversation starter as you discuss your child’s health with their care team. Ask the questions. Get empowered by learning and educating yourself more. As chronic illness patients and parents, it’s a constant learning curve—with each setback and triumph we gain newfound understanding and perspective. Stay tuned for an upcoming article on Lights, Camera, Crohn’s with guidance regarding making the transition from pediatrics to adult doctors.

Helpful Resources

Learn about the Crohn’s and Colitis Foundation’s Camp Oasis

Continued Statural Growth in Older Adolescents and Young Adults with Crohn’s Disease and Ulcerative Colitis Beyond the Time of Expected Growth Plate Closure

Oral Contraceptive Use and Risk of Ulcerative Colitis Progression: A Nationwide Study

Growth, puberty, and bone health in children and adolescents with inflammatory bowel disease | BMC Pediatrics | Full Text (biomedcentral.com)

How IBD Affects Growth in Kids and Teens (verywellhealth.com)

Pediatric Crohn Disease: Practice Essentials, Background, Pathophysiology (medscape.com)

Contraception, Venous Thromboembolism, and Inflammatory Bowel Disease: What Clinicians (and Patients) Should Know

Growth Delay in Inflammatory Bowel Diseases: Significance, Causes, and Management

Circle of Care: A Guidebook for Caregivers of Children and Adolescents Managing Crohn’s Disease

IBD Humanitarian Aid Reaches Ukraine: How you can help right now

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As the weeks of war go by in Ukraine, our IBD patient advocate extraordinaire, Elena Skotskova, continues to do all she can to ensure those with Crohn’s disease and ulcerative colitis are feeling supported in the face of the unknown. Elena and I have become pen pals of sorts over email. A world away. Our worlds so different. But our understanding of what it’s like to live with IBD very much the same. Here’s Elena’s latest update sent April 13th, 2022. She remains about 30 minutes outside of Kyiv at her mother in law’s home.

Dear Natalie!
Now we are engaged in the distribution of humanitarian aid, which came to us from Dr. Falk (a German pharmaceutical company). I want to share with you the information about helping Ukrainian patients with IBD. Ever since we received the medicine from Dr. Falk we did a great job:
1. We sent medicines to 12 hospitals in different cities of Ukraine, where patients with IBD are treated;
2. We have collected more than 400 applications from patients who currently do not have the opportunity to go to their doctor.
3. We have sent more than 200 packages of medicines to patients throughout Ukraine who do not have access to a doctor
4. There are still about 200 parcels left to send, and I think we can do it before the end of the week.

We have received a large number of letters of thanks from patients who have received medications. We tried to ensure that all patients had enough treatment for at least two months. Earlier we received two parcels from our Greek friends, which were sent via Poland. Everything that was in those parcels (medical food, colostomy bags, medicines, etc.) we distributed to patients and hospitals.

On Monday, April 11, we got a big package from Estonia with colostomy bags and stoma care products. We also send colostomy bags to patients who need it.

I have a lot of work now, and I am constantly in touch with patients. We have a lot of requests from patients from different parts of Ukraine. Particular pain is the regions that are occupied by Russia. It is impossible to deliver medicines there, it is impossible to help patients. I hope that someday they will be able to get out through humanitarian corridors, and then they will receive medical assistance.

This is Galina, our volunteer, a doctor who herself sent more than 300 packages of medicines to patients. She lives in Lviv, where humanitarian aid comes from Europe. This charming lady herself takes heavy boxes, sorts them, forms packages, and sends them out to patients. She does this at night 🙂 And during the day she treats people. I am very grateful to her, she is an irreplaceable person in our team.


I also wanted to share information with you we set up on our “Full Life” site that gives people around the world the ability to make donations using credit cards. You can do it from the link https://www.gofulllife.com.ua/donate/
Scroll down and click the: “Help the project” (Допомогти проекту) button. Once there, you will be directed to choose a currency. (USD or EUR, depending on which currency the credit card supports) and write the sum.

A pre-war photo of Elena and her friend and fellow volunteer, Alexandra.

The money raised will be used to buy medical nutrition for children with IBD and to buy medicine for IBD patients who have lost their jobs and incomes.

My husband and I are going to go to Kyiv on Saturday (April 16). We need to meet the humanitarian cargo from Lviv. And also, I need to deal with colostomy bags that came from Estonia and send them to patients.

Many people are already returning to Kyiv, I hope that my hairdresser will also come back and cut my hair 🙂 During the war, it is a great happiness for us just to get a haircut or get medicine. We have such small military joys.

Stay in touch. Hugging you
Elena