The Patient Experience: What the IBD Community says about Entyvio

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

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

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

The overwhelming response from the community

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

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

Infusion: Dosing schedule + timing

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

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

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

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

Side effects: The consensus among those who responded

Headaches/Dehydration/Fatigue

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

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

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

Hair Loss/Growth

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

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

Navigating infusions and life

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

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

Pregnancy and Breastfeeding

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

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

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

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

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

Be a proactive patient

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

Helpful Entyvio-Focused Facebook Communities

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

Entyvio Mommas

Entyvio Warriors

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

He made me an IBD mom four years ago…here’s what I’ve learned

Four years ago, today, I became a mom. Our son Reid Robert was born and placed into my arms for the very first time. Like any parent, especially one with a chronic illness, those initial moments were emotional and overwhelming in the best way. A wave of relief rushed over me as I lied on the table after my scheduled c-section, grateful my body that had fought Crohn’s disease since 2005, had brought a perfectly healthy baby boy into this world. But I was also nervous about my abilities as an IBD mom and what the journey of parenthood would look like as I juggled taking care of myself and this tiny little human. How would my life with a chronic illness and as a mom play out?

Fast forward four years. I am now a mom of two, with a baby boy on the way (24 weeks tomorrow)! Over these last 1,460 days, I’ve learned and grown a great deal both personally and as an IBD patient. Today—I share that perspective and knowledge with you. Perspective and knowledge, I wish I had when I first became a mom and what I’m continuing to learn along the way.

  1. Fed is best. There is so much pressure on how women choose to feed their babies. It’s ridiculous. I breastfed Reid the first three days and he had formula from that point forward because I was nervous about my biologic. The second time around, I did more research, and chose to breastfeed my daughter. Our journey lasted for six months (my milk supply ran out once I got my period). I supplemented with formula. I’m hoping to nurse our final baby when he’s born in July. That being said—no matter what you choose, it’s your choice. Your baby will thrive. Don’t beat yourself up over it. Drown out the judgement and speak up if someone questions your decision for you and your baby. For me, breastfeeding is a labor of love. I’m not going to act like I enjoy it, because it was hard for me. It’s not something that comes natural for all, and that’s ok. No one is going to ask my kids when they are in elementary school or high school how they were fed or know the difference.
  2. What they see, doesn’t always hurt them. When you’re cowering on the toilet in pain and they’re watching with eyes that speak of concern. When you’re sitting on your couch about to do your injection. When you’re struggling to stand up straight because your abdominal pain is too much. Don’t shield them from your pain. That pain is part of your family story and it’s important you are honest and upfront. It’s those moments that shape their little hearts and their everchanging minds.
  3. Kids roll with the punches. Have to cancel plans or have a low-key day inside watching a movie instead of going for a walk or to the park? —that’s ok. Your children will feel loved and taken care of just the same. Kids are flexible. They don’t need to stick to a rigid schedule to be happy and fulfilled. At the end of the day, it’s your love and support that matters most.
  4. Innate empathy from a young age. With my oldest being four, I can’t tell you enough how many times I’ve been blown away by his empathetic heart. Before he was even two years old, he would kiss my thigh after my injection and walk up to me in the bathroom, give me a hug, and pat my arm or stomach to comfort me. Now, he asks me if I’m hurting or in pain. He knows mommy isn’t always healthy, but that she’s always strong and gets through it. That empathy goes far beyond me—I see it in the way he is with others and it makes my heart feel like it’s going to burst with pride. I credit that aspect of his personality to what he’s witnessed these first few years of life, and for that I’m grateful. I can guarantee you’ll see the same with your children.
  5. Greatest source of motivation. Even though I’ve been in remission since August 2015, my kids still serve as my greatest motivation on the difficult days with the disease. Whether it’s pain, prepping for a scope, or going through a procedure, I keep my eyes on the prize—them. Just thinking of them gets me through everything. They give me so much to fight for, day in and day out. It’s not just about me—it’s about all of us.
  6. The importance of communication. When you become a parent, communication becomes even more paramount in your relationship. If you don’t share when you’re struggling or symptomatic, your partner can’t offer the support you need. Even if you’re not in a full-blown flare, it’s beneficial for everyone involved (you, your partner, and your kid(s)) that you share when your IBD is causing you issues. I always text my husband when he’s at work or simply say, “I’m having a bad Crohn’s day” or if I’m in the bathroom for a long time after dinner while he’s trying to get the kids to bed …and that’s all it takes to get the message across.
  7. Asking for help doesn’t make you weak. You’ve probably heard the saying “it takes a village to raise a child” …and it really does. You are not failing or less than because you ask or help, need a break, or time for yourself. You will be a better mom if you take time for you. You’ll be better able to keep your disease in check if you have time to relax and de-stress. I’m not always the best when it comes to accepting or asking for help, but as I gear up for three babies four and under, I know I’m not going to be able to do it all on my own and that I’m going to need more out of my village.
  8. Your health can’t go on the backburner. When you’re a mom, your needs often go to the bottom of the totem pole. When you are an IBD mom, they can’t. While I used to try and “brave out” my symptoms until the last possible moment, as a mom, I’ve completely changed. After nearly 16 years living with Crohn’s, I know when my body is speaking to me and now, I listen and address what’s going on immediately. I credit being proactive and sharing with my GI when it feels like my remission may be in question for the reason why I’ve been able to stay in remission all this time. I’ve gone on bursts of steroids, had my trough levels checked for my biologic, and done fecal calprotectin tests through the years when needed. The last thing you want as a parent is to be hospitalized because of your IBD. To me—it’s inevitable. It’s not a matter of if it will happen, but when. But I do everything in my power to keep myself home and out of the hospital and will continue to do so until that’s no longer possible.
  9. Every “tummy ache” and loose stool from your child is not IBD. When my kids say they have a tummy ache or I seem to think they’re going to the bathroom more often one day than not, I’m immediately worried and concerned. Could it be IBD? Why are they feeling this way? Is it my fault? What do I need to watch out for? All the questions flood my mind and sometimes my emotions get the best of me. Then, my husband normally talks me down and says it’s probably nothing and I need to stop jumping to conclusions. He’s right. Chances are potty training could be causing tummy aches. Or maybe like the rest of the population, they are going more because of something they ate. The chance of passing along IBD to your child (when one parent has it) is only 2-9% (according to the Crohn’s and Colitis Foundation). Remember that.
  10. You are their hero. Of course, there are times I wish I wasn’t an IBD mom…and “just” a mom. At the same time, I credit my disease for much of my outlook on life and how it helps me cope with setbacks, but also celebrate what to many others may be the mundane. My kids don’t see me than less than. When they sit through doctor appointments in the stroller and blood draws, or watch me make faces drinking colonoscopy prep, or count to 10 while doing my shot before they go to bed, they simply see their mama. This is their normal—they don’t know anything different. When I talk to teenagers or young adults who grew up with a parent who has IBD, I always hear the same thing— ‘they are my hero’.

Along with being a hero to your little one(s)…you are also…

Someone who takes unpleasant moments in stride.

Someone who wears the title of “mama” with great pride.

Someone who will never stop fighting for the feel-good days.

Someone who doesn’t allow your illness to rob you or your child of joy.

Someone who goes after their dreams—like that of being a mom—even though your back story may be a bit more complicated.

Someone who is just as worthy as anyone to be a parent.

We’re four years in, Reid. Like everything in life, each moment—beautiful and challenging—is fleeting. Thank you for being patient with me, for understanding me, and for being a daily reminder that I’m so much more than my Crohn’s disease. Being your mom is my greatest title and has been the best chapter of my life story and patient journey thus far.

IBD Motherhood Unplugged: Taking on the trials of Crohn’s, infertility, and adoption

When Megan Cape of Georgia was diagnosed with Crohn’s disease in January 2004 at the age of 14, she didn’t know what the future would hold in terms of pregnancy and motherhood. After years of doctors dismissing her excruciating pain as a stomach bug or a reaction to stress, she finally received an answer. During her initial hospitalization, she had an abscess the size of a softball in her abdomen that was pushing on her spine. She was also going septic. She was rushed to surgery where surgeons removed the abscess and part of her intestine, ultimately saving her life.

Fast forward to her college years and Megan met the love of her life and future husband, Colton. She studied to be a Child Life Specialist, a career near and dear to her heart since she spent so much time in and out of the hospital growing up. One of her worst flares happened on graduation day. She was able to muster up the strength to walk across the stage and grab her diploma, but then had to be carried to the car. That week—CT scans shows she had five strictures (narrowing in the intestine which doesn’t allow food to pass through). At this point, her wedding was less than a month away. Her care team delayed surgery so that she would be able to walk down the aisle. 

“On the day of my wedding, I couldn’t even take a bite of food because the pain was so intense. After our wedding and honeymoon, my health declined quickly and got to the point where I couldn’t keep water down. I was throwing up all day and night and my family was taking turns staying up with me. I had at least one ER visit a week, but, somehow, the doctors kept missing how bad things were and would send me home,” said Megan.

She ultimately landed in the hospital for five weeks, as a 23-year-old newlywed. At the time, she wasn’t thinking about children. Megan was focused on getting better and placed faith in God’s hands that when the time would be right, she would be a mom. That was until she went into her GI doctor following the hospitalization and her second surgery. There, she was told she would never have children. Megan was devastated, as you can imagine. This week’s IBD Motherhood Unplugged sheds light on navigating this heartbreaking realization and how adoption changed Megan and her husband’s lives in the most beautiful way.

The unforeseen miracles in the making

Much to Megan’s surprise, three years into their marriage, she got pregnant the first month her and her husband started trying. Unfortunately, they lost that baby. Heartbroken as they were, they were hopeful they’d get their rainbow baby. Each time, getting pregnant happened easily, but time after time, they miscarried.

“Interestingly, God laid adoption on my heart at such a young age. I always knew I wanted to be a wife and a mom, and I always saw myself adopting. But I still felt so many emotions, wondering if and when it would ever be my turn to carry a baby.”

After four miscarriages, they decided to seek guidance from fertility specialists. It was determined that because of Megan’s Crohn’s and past surgeries, the embryos weren’t attaching correctly to her uterus and blood clots were forming, causing her to miscarry. Her physicians believed IVF was her only option, and she was ready to jump in with both feet. Megan and Colton went through all the testing and blood work, but everything came to halt when her doctor conveyed his worries about complications with egg retrieval and such in Crohn’s patients. Megan said the unknown of how her body would respond to IVF in addition to the daunting cost of it all, caused them to re-think their approach to family planning.

Preparing their hearts for something bigger

While in waiting, Megan feels God kept bringing amazing adoption stories in front of her. Stories that reminded her of when she was a little girl and told herself that would be part of her family one day.

“After years of TTC (trying to conceive) and miscarriages, I approached my husband and brought up adoption. I was truly shocked by his response because, without any hesitation, he said, “Let’s do it!” We both had an amazing peace about it and quickly began the adoption process. We had no idea what all goes into adoption and, woah, it’s a lot!”

Megan says adoption was the best and hardest thing they’ve ever done. She credits much of their “success story” to their amazing support system of family and friends who rallied around them to help raise money, to encourage them through the journey, to let them cry on hard days, and celebrate the exciting milestones.

“Nine months into the adoption process, and a month after being an ‘active’ waiting family, we got the call. A birth mom had picked us! She fell in love with us, our story, and our family after looking at our profile book. We were going to have a daughter in 3 short months!” Megan did not include that she had Crohn’s in their adoption profile book, but shared she was unable to have children. 

The blessing of Vivian Rose

Megan and her Colton’s daughter, Vivian Rose, was born October 14th, 2019. She is the answer to years and years of prayer, their miracle baby, and the light of their lives.

“Managing a chronic illness when you’re a mom is definitely hard at times! Thankfully, my Crohn’s has been under control since Viv was born and I’ve just had a few bad days here and there. Because of COVID-19, my husband has been working from home for the last year. So, on my hard days, he will take Vivian for a few hours to run errands and such so I can rest,” says Megan. “I definitely think it takes a village to raise kids in general, but, even more so, when you have IBD.”

Since becoming a mom, Megan has taken her health more seriously.

“I don’t ever want Viv to say, “Ugh. My mom is sick again.” And I don’t ever want to miss out on her day-to-day life because I’m not feeling well – as unrealistic as that may be! I have been much more intentional about eating foods that make me feel well and give me energy. I also make sure to listen to my body more and I try not to push myself as much as I always have!”

The main IBD-related symptom Megan has struggled with recently is fatigue—the kind of fatigue where you feel like you could sleep for two weeks straight and still wake up tired. 

“I get frustrated with myself, sometimes, because I don’t have the amount of energy other mamas do, but I do my best and I know that’s all I can do.”

The role of faith through IBD and infertility

Megan says she never questioned God’s plans for her life when she was diagnosed with Crohn’s during her teenage years, but infertility made her do so.

“It was, truly, the loneliest and darkest point of my entire life. I had a constant ache in my heart and the sadness I felt was unreal. As one friend after another told me they were pregnant, I felt like I couldn’t breathe. I was so happy for everyone around me, but it did make it that much harder. I felt so left out and so alone. I remember, so clearly, God speaking two things to me during this time: The age 29 and the thought that I wasn’t going to be left out.”

Megan wishes she could go back in time and tell her 26-year-old self what she knows now. 

“I wish I could tell her that everything is going to be okay. I wish I could tell her that 29 is the age she will become a mama to the most perfect baby girl. I wish I could tell her that God has big plans for her family, and he has not forgotten about her, but that His timing is perfect.”

Megan’s advice for IBD mamas in waiting

Megan’s best advice—do not give up. Lean into your spouse because they are not only serving as a caregiver for your IBD, but they are also hurting about the struggle to have a family. If you become an adoptive family, you’ll see that your child is handpicked for you and that the make-up of your family will be knit exactly how it was meant to be.

“We would love to give Viv a sibling, but, at this point, we are just enjoying our girl and soaking up every minute with her! Adoption doesn’t cure infertility – meaning that it is still hard sometimes that we can’t just decide to give Viv a sibling and do so easily! And I will never have a big belly or carry a baby to term. But that’s okay! If God calls us to adopt again, we will do so. We may even go the surrogacy route or Vivi may be an only child. I know, if God wants us to grow our family, it will be made obvious and we will trust Him and follow His lead.”

Megan says she refuses to allow her Crohn’s disease to define her, even though it’s dictated and shaped much of her life journey. Her IBD is the reason she can’t have kids. The reason adoption was laid on her heart at a young age. The reason she’s mom to Vivian Rose. The reason she’s disciplined. The reason she chose her college major. The reason her faith and her marriage are so strong. And the reason she has the perspective and maturity to understand that despite the setbacks and trials placed before her, she still lives a blessed life that she is grateful for.

Connect with Megan on Instagram: @mrsmeggcape

IBD Motherhood Unplugged: Womanhood Questioned by Crohn’s Disease

Motherhood is so much more than a word—it’s an expectation and an identity. It’s a right of passage many girls dream of when they think about their future and what their family will look like. But family planning, pregnancy, and motherhood are far from a given, especially for those with chronic illness. As an IBD mom of two with one on the way, I’ve recognized that while my story and my experience may comfort and guide others—it’s only that, one story. I fully understand I am extremely lucky not to have the struggle of infertility or physical limitations to hold me back from having children, despite my Crohn’s.

This week kicks off IBD Motherhood Unplugged, an ongoing series that will be shared periodically in the months and years ahead on Lights, Camera, Crohn’s. The series will feature guest posts from women with Crohn’s and ulcerative colitis who may not physically be able to carry a child, who battle infertility, who grow their family through adoption and surrogacy, who have children following loss—the list goes on and on. Ultimately, I want everyone to feel seen, heard, and understood. There’s not one cookie cutter approach to becoming a mom or having a family.

The first article is by my dear friend and fellow patient advocate and thought leader Tina Aswani Omprakash. Tina is a 37-year-old woman in New York, living with perianal, fistulizing Crohn’s Disease. She’s endured more than 20 surgeries and lives with a permanent ileostomy. Since she was a child, she thought she could put off motherhood and did so through many years of virulent disease. At one point, as a young adult, she needed to go on a disability and be taken care of by her mom. When she got married to the love of her life, Anand, nearly 11 years ago, the questions started.

“Being of South Asian descent, the nosy, busybody aunties at weddings and cultural events would always find ways to jeer and sneer at the fact that I hadn’t had a child yet. And after I started Stelara 5.5 years ago and tasted remission for the very first time in a decade, I too began to wonder: is it time for me to consider my own child?”

I’ll let Tina take it away and explain her struggles with family planning and finding out pregnancy wasn’t in the cards. Her heartfelt words and openness about feeling excluded from being an IBD mom, shed light on an important topic and aspect of our illness that is often not discussed or talked about. We hope in sharing this—if you are going through the same situation, struggles, or worries, that you know you are not alone.

Genetic counseling, surrogacy, and reproductive endocrinologists, oh my

In April 2016, I went to see a reproductive endocrinologist, who did a transvaginal ultrasound. Based on his medical expertise, he thought he could retrieve maybe three of my eggs, which was incredible news given everything I had been through surgically. He had proposed 2-3 rounds of IVF for hormone stimulation and egg retrieval but there was no guarantee that the eggs retrieved would be viable to be combined with my husband’s sperm. He didn’t think carrying the baby was a good option for me given all the scarring from surgery and fistulae. Moreover, fertility is often affected by j-pouch surgery and later excision.  As such, he offered me the option of surrogacy and asked me to seek genetic counseling due to the hereditary nature of my Crohn’s Disease.

Anand and I went through months of genetic counseling, an expensive process that didn’t lend to any substantial findings. Crohn’s, as many doctors have explained to me, is spread out over several genes and one gene cannot be targeted necessarily as a form of gene therapy. That left us both stumped as his family has a history of an autoimmune condition called ankylosing spondylitis and I have various skin and bowel autoimmune conditions on my side of the family.

During this time, we also looked into the surrogacy process. Since the reproductive endocrinologist recommended that I not consider a pregnancy myself given all the surgeries, fistulae, and pelvic cysts I’ve had, we obliged. But considering all the legal and surrogacy fees, we were looking at $100,000 for one surrogate pregnancy (at least), which was an extraordinary sum of money for us. So, we decided to table having a child for the time being and think over adoption, another expensive proposition.

Tick, tock, tick, tock…

Two years passed and we came to realize that there is no easy solution. During that time, the IBD Parenthood Project shared excellent knowledge for women with IBD to conceive and carry a pregnancy to term safely. And I thought, let me ask my GI doctor now about his thoughts. Unfortunately, he reiterated the same thoughts as the reproductive endocrinologist shared: for someone with my surgical and fistula history and aggressive family history of Crohn’s disease, it may be best not to try. He also said the risk of me using hormones for egg retrieval would risk a blood clot in a patient with my history.

Part of me was still in denial that motherhood may never be a possibility. Within weeks of my conversation with my GI doctor, I was diagnosed with mild endometriosis by a premier OB/GYN surgeon in NYC. I asked him, “What do my options for pregnancy and fertility look like now?” And he said very openly and honestly, “Bleak at best. Let’s say you do carry the pregnancy and don’t lose the baby, Tina, will I have to cut through bowel and scar tissue to get to your baby?” After a brief pause, he said, “I would recommend adoption if having a child is something you really want to consider.”

While, on one hand, I genuinely appreciated his honesty, on the other hand, the statement, “cut through bowel and scar tissue to get to your baby” seared through my mind for months after and has left its mark even today. I needed to hear it; I needed my bubble to pop. But the statement no doubt cuts and ravages every minutiae of my being as a woman. Not having the privilege to choose to have a baby was suddenly taken from me in that one fell swoop and it left my head spinning.

Losing Motherhood to Crohn’s Disease

My God-given right as a woman was taken from me in that instant. As if having six fistulae and Crohn’s wreaking havoc on my pelvis and reproductive system wasn’t enough, let’s take Tina down another notch. Let’s take away her right to choose to have a child.

Even though voluntary childlessness is always a choice, now I didn’t even have that choice. Childlessness was thrust upon me like a stab wound in the back. All I was left with were unaffordable options of surrogacy or adoption.

So why not adoption? It’s simply too expensive and I do wonder about whether I’ll be able to even take care of the child given my constant roller coaster of health issues and medical appointments. Hiring full-time help seems out of reach, too.

Include Women Who Aren’t Mothers

That day with the endometriosis surgeon was nearly three years ago. And I’ve done a lot of work in therapy to process much of it. But I can’t say I don’t feel left out every time I see a mom scolding her child or complaining about her child(ren)’s mischievousness because I, like many other women with chronic illnesses, will never be able to experience the joys and sorrows of motherhood.

As happy as I am for my friends with children, there is a deep void I’m reminded of every time someone else gets pregnant, hosts a baby shower, or sends along amazingly cute photos of their child(ren). I will never be able to have that, no, but I wish I could still be included in the mommy paradigm as a cool aunt or as a godmother. But I’m often not, and that makes me feel sad and excluded.

Dealing with the Cultural Aspects

In American culture, it’s hard enough as it is to be a woman of my age without a child, but in Indian culture, you’re really considered a pariah of sorts. I’m often asked the question of when I will bear a child now that Anand and I have been married for so many years. I usually find ways to dodge those questions by changing the subject or by simply saying, “whenever the time is right.” It’s not a conversation I want to be having with acquaintances nor do I want to be fodder for gossip.

But when it comes to my close friends saying, “Tina, gosh, you would have made an amazing mother, you have so much good to impart on to the world,” it feels good and bad all at once. I’m flattered that someone would think I could do a fine job as a mother but saddened by the fact that I will never know that for myself.

Becoming a Mother Hen

Alas, today in 2021, I continue to focus on my advocacy work and my graduate program, in attempts to focus my attention elsewhere. And in the words of my therapist, “if I cannot be a mother to a child, I can at least be a mother hen to my IBD community, helping to educate and guide patients of underserved populations who would otherwise feel bewildered.” I take a lot of solace in that and recognize that I wasn’t supposed to be here today with all the near-death experiences I’ve had with my brand of Crohn’s disease. All I can express is my gratitude for being alive today, for being able to do this work, and for being able to be a mother hen in my own way to my community.

To my fellow IBD women & chronic illness warriors: please know you are not alone. Please know it’s okay to be sad, angry, and terrified. Many of us are struggling deeply with the idea of motherhood as our clocks keep ticking. Do your research, learn what your options are and make the best decision with your specialist(s) regarding conception and pregnancy. And if having a child is not in the cards, that’s okay too. Never forget (and I need this reminder too) – not having a child doesn’t make you less of a woman.

Connect with Tina

Blog: Own Your Crohn’s

Instagram: @ownyourcrohns

Facebook: @ownyourcrohns, Own Your Crohn’s Community (Private group created for the Global South Asian community living with inflammatory bowel diseases)

Twitter: @ownyourcrohns

Digital Dating Tips for IBD’ers: How I Met My Husband and What I Learned

Before the dating world was about swiping right or left, I met my husband online. It’s something I was a little embarrassed about sharing for a long time, especially while being a morning news anchor. The year was 2013, while online dating was becoming more common, it was still a little taboo. At the time, my Crohn’s disease was a secret from the public. Much like the backstory of my health, I wanted to keep my love story under wraps much of the same way.

So, when I signed up for eHarmony on a whim after attending my co-anchor’s wedding, rather than putting my location as Springfield, IL (where I lived and did the news), I told a little white lie on my profile and said I lived in St. Louis. I know, I know…a little shady! But hear me out. I chose to do this to disguise my identity and vowed to myself that I’d be upfront and honest with whoever I spoke with about where I lived from the initial conversation. I also told myself I’d hold off on sharing that I had Crohn’s until I met someone worth my time and deserving of my energy. It wasn’t something I would share over email or on the phone prior to meeting.

Finding Love in Three Days

I was on eHarmony three days before I met Bobby. Yes, three days. I feel incredibly fortunate that after years of dating and not finding the right person that all it took was a couple emails and some phone calls. As soon as Bobby and I started talking I gave him an “out” and said I understood if he wasn’t interested in long distance (90 miles apart), but he said he didn’t care and wanted to meet me. He drove to Springfield on a Wednesday after his workday and took me to dinner. Little did we know that would be our last first date.

From there he visited me the following week and we went out for Mexican. Two dates in, I didn’t feel ready to disclose I had IBD. But as the days turned to weeks and I started feeling closer to him, I knew it was something I had to get off my chest.

Disclosing to My Boyfriend (now husband) That I Have Crohn’s

On our third date (almost a month of talking/hanging out) we went to a boathouse and had lunch outside on a gorgeous St. Louis August afternoon. I was nervous, but at this point in my patient journey (8 years in) I felt confident about my IBD elevator speech. After the appetizer arrived, I let him know I had Crohn’s disease. I explained what it was, how it had affected me, the medication I was on, but more so than what I was saying, I was paying more attention to his verbal and non-verbal cues. I had been with guys in the past who ghosted me in times of major health emergencies. I had been made to feel like my chronic illness was a joke or an excuse. And I wasn’t going to put up with any of that bs again or be made to feel like a burden.

Photo taken after I told Bobby I had Crohn’s.

In that moment, Bobby made me feel comfortable and he didn’t seem phased by what I had shared. Not in a dismissive way, but in a way that made me feel like just with the distance, my disease wasn’t reason enough in his eyes to explore other options.

Advice for Navigating Online Dating with IBD

  1. Don’t make your IBD the headline on your profile. While your IBD is a big part of who you are, it’s not your whole identity. It’s not necessary to include you have a chronic illness on your dating profile unless you feel so inclined. Personally, I wouldn’t give someone the privilege of knowing that side of you unless you feel they are worthy. At the same time, if you have an ostomy and you prefer to share photos of yourself like that on your profile—more power to you!
  2. The cliff notes version of your health story will do. When you decide to share that you have IBD with your partner, don’t be doomsday. Don’t go on…and on…and on…about how debilitating and horrible it’s been and how miserable you are. Give a high-level elevator speech that “dumbs it down” a bit. You don’t need to downplay how hard it is but allow your partner to take some initiative and educate themselves and ask questions when they have them. How you share and present your illness to someone who may have never heard of IBD will have a lasting impact.
  3. Don’t settle. Trust your gut. If a partner is making you feel uneasy or unhappy, don’t make excuses for them. Read between the lines on a person’s dating profile—see if you think their personality traits and interests will compliment you and your needs. Not everyone is nurturing and empathetic. If you see red flags that your partner lacks in those areas, think about whether it’s going to be a healthy relationship for you to be a part of.
  4. No need to be shy! When we’re battling our health, often the thought of being vulnerable and open with a stranger can seem overwhelming. IBD is complicated and the stress of a new love interest can make us feel a bit out of control. But it can also be an exciting, sweet distraction from health challenges. Love gives a sense of normalcy. Just because you have IBD doesn’t make you unworthy of deserving love. Think about the type of partner you want holding your hand as you battle a flare from a hospital bed.
  5. Love doesn’t need to stop because of the pandemic. I’m an old married woman now (ha), going on eight years since I was on eHarmony and matched with Bobby, but I wouldn’t have it any other way. There are so many sites and apps these days, I don’t even know all it entails. Gone are the days of only eHarmony, Match, and Plenty of Fish. 😊 If you’re feeling lonely and isolated like so many of us during this pandemic, and you’re single with IBD, don’t feel like you have to press pause on finding a connection or your person.

What IBD’ers Have to Say About Finding Their Match

Erica: “My husband and I met on Coffee Meets Bagel in 2017. We texted three weeks before meeting. I told him I had Crohn’s after texting a couple of weeks before we met. I had to reschedule our first date because of a health issue and didn’t want him to think it was because of him. I also felt like he should know what he was getting into.”

Michelle: “I met my husband in 2015 when Hinge came out! I was having a flare and threw up on our first date! I met him when I was going through getting diagnosed and he was so supportive through it all.”

Christine: “Disclose early on! I disclosed at about two months of dating with my fiancé and I felt like things could go further. I think it’s something the other person should be aware of. Not everyone is ready for that you need to know that you will be supported through that journey! We connected through Facebook! Sounds crazy, but here we are!”

Sarah: “Dating/meeting people is so hard nowadays and then throw in a chronic illness and it doesn’t make things easier! Personally, I prefer to be up front about my UC because if the person is going to like me or if this is going to work out, they are going to have to be on board with my UC, too! Whether I like it or not, it’s a part of who I am.”

Ryann: “I met my husband in 2017 and I told him on our second date. Our friend set us up and she had already shared that I had IBD with him. Previously, I had told other guys on our first or second date. One guy came back and apologized for being so weak and not contacting me again after that date. I didn’t reply, more because I didn’t blame him, but also because I found him to be incredibly dull! This was back in the beginning days of Tinder!”

Natasha: “I like to share early (in or around the first date) about my health so I don’t develop an attachment if they aren’t comfortable with chronic illness. Usually, it leads to a good conversation either way. Recently, I shared about my Crohn’s over text message and the guy was very inquisitive and only wanted to learn more, about me and about Crohn’s! I also have a pic of me with my ostomy in my dating app profile. It’s subtle, but if you know it’s there or know what an ostomy is, you’ll know immediately what I have.”

Payge: “My Tinder profile pictures had me with my bag and my current boyfriend googled what it was before he messaged me. He told me when he knew what it was, he instantly thought ‘I want to take care of this girl’…that’s how it went for me!”

Allison: “You don’t have to share any more than you’re comfortable with—if you want to disclose in your profile, great! If you wait until date number five, that’s okay, too! There are no hard fast rules for when or how you should share your story with someone. It’s YOUR story and every situation is different. Anyone who responds negatively or acts as if your illness will be a burden is NOT worth your time. The right person won’t care. Remember—nobody is perfect. Your vulnerability might allow the other person to share something they’re also trying to figure out the right time for. I’ve been online dating for five years now, met my current boyfriend on Hinge in September.”

Why Every Person with Chronic Illness Needs to Read “What Doesn’t Kill You”

Prior to receiving a chronic illness diagnosis, it’s incredibly challenging and nearly impossible to fathom ‘forever sickness’. In Tessa Miller’s book, “What Doesn’t Kill You: A Life with Chronic Illness–Lessons from a Body in Revolt”, she masterfully articulates the highs and lows of life with Inflammatory Bowel Disease (IBD). From navigating the diagnosis, flare ups, the healthcare system, relationships, and the mental health component, she’s created an invaluable resource that I wish every single person with chronic illness could be handed the moment they find out their life story has taken an unforeseen turn.

As someone who was diagnosed with Crohn’s in 2005, two months after college graduation, I wish my former self had these powerful words at my fingertips. The overwhelming nature of IBD can be nearly suffocating at times. As I read this page-turner of a book, I felt seen and understood. I found myself nodding my head, because I could relate to so much of her story and so much of her sage advice. I felt like a college student highlighting what felt like the whole page, because it was ALL so important.

Tessa and I are both journalists. We both have Crohn’s. We both randomly grew up in Illinois. I connected with her over social media after reading her New York Times article, “Five Things I Wish I had Known Before My Chronic Illness.” The article had an impact on me, so when I heard she landed a deal with a publisher, I anxiously awaited for this book to drop.

In the beginning of “What Doesn’t Kill You,” Tessa writes, “I became a professional patient, and a good one. I learned that bodies can be inexplicably resilient and curiously fragile. I would never get better, and that would change everything: the way I think about my body, my health, my relationships, my work, and my life. When things get rough, people like to say, “this too shall pass.” But what happens when “this” never goes away?”

Finding the Right Care Team

When you live with a disease like Crohn’s, it’s imperative you trust your gastroenterologist and care team and are confident in how they help you manage your illness. I always tell fellow patients to take a moment and think about who they will feel comfortable with at their bedside in a hospital room when they’re flaring or facing surgery. If it’s not your current doctor, it’s time to look elsewhere. Tessa breaks down the “qualifications” for getting a care team in place. From finding a doctor who explains why they’re doing what they’re doing and why to a doctor who looks at you as a human, not an opportunity.

“Good doctors see their loved ones in their patients; they make choices for their patients that they would make for their own family. Asking a doctor, “Why did you choose this line of medicine?” will reveal a lot about what drives them and how they view their patients.”

The Grieving Process of Chronic Illness

Receiving a chronic illness diagnosis forces us each to go through the grieving process. For many of us, we were naïve and felt invincible before our health wasn’t a given. We’re so used to feeling as though we’re in control of our destiny, that when we lose that control, we spiral, understandably. Tessa interviewed Paul Chafetz, PhD, a clinical psychologist based in Dallas. Dr. Chafetz is quoted in the book saying, “We go through life with an illusion of safety, guaranteed health, even immortality. Acquiring a chronic illness pierces that illusion, and this is a loss. Grieving this loss is an integral part of adjusting to the illness.”

Take a moment to stop and think how you coped those first few weeks and months after finding out you had a chronic illness. While acceptance takes time and comes in different stages, Tessa explains how flexibility and willingness to adapt to your new “normal” is even more important.

“Rather than searching for big, sweeping acceptance, then feeling like a failure when it doesn’t come, chronically ill folks can enact small, empowering steps, such as taking required medications, learning everything we can about how our diseases work, seeing doctors regularly and being prepared for appointments with a list of questions, advocating for our needs and wants, figuring out which foods makes us feel good, and going to therapy and/or connecting with a support group.”

In my own patient advocacy and experience living with Crohn’s I can attest to the fact that we all spend a lot of time wishing for our past and worry about what our futures will hold, rather than focusing on the right now. The majority of IBD patients are diagnosed prior to age 35. This leads most of us to experience the big milestones of adulthood (career, finding love, living on our own, family planning, etc.) with a disease in tow and wondering how that disease is going to complicate life or hold us back from accomplishing all we aspire to.

Bringing on the Biologics

Tessa calls herself an “infliximab veteran,” she spends a great deal of time talking with new patients and caretakers, mostly moms of young IBDers, about their fears. Most questions I receive through my blog and social media also revolve around biologics and the worries people have about side effects and whether the drug will fail them or be a success. I feel confident deeming myself an “adalimumab veteran”, as I’ve been giving myself Humira injections since 2008.

As patients we are faced with difficult decisions all the time and must look at the risk versus the benefit. Having health literacy and understanding your actual risk from a biologic is something that should be communicated with you from your physician. Tessa’s doctor explained to her that six in 10,000 people who take anti-TNF agents (Humira and Remicade) get lymphoma. But as patients, all we see on the internet and in the side effect notes are “lymphoma.” Force yourself to dig digger and remind yourself of your alternative—to not feel better.

The Truth Serum of Chronic Illness

One of the superpowers of chronic illness is that we get to see which family members and friends come to the forefront and which fade to the background. Not everyone is cut out to be a caregiver, but you’ll quickly see who has empathy and who genuinely cares. In my own personal experience, it’s helped me get out of relationships with guys who were no where to be seen while I lied in a hospital bed and allowed me to distance myself from friends who couldn’t find the time in their day to check in when they knew I was flaring.

Tessa says that chronic illness forced her to peel back the layers and the isolation wall she put up, too. Chronic illness has shown her that people do more than just hurt each other— “they nurture, they listen, they enrich one another’s lives.” Her IBD also empowered her to be brave enough to put an end to unhealthy relationships that weren’t benefiting her well-being, both with friends and love interests. Her Crohn’s has showed her that not every friendship is meant to support you in the same way.

This is a great piece of advice. As you live with a chronic illness, you’ll come to know which friends you can share your deep dark secrets and worries with, and which you give the high-level cliff notes version of your experience to. Your chronic illness will help you set those boundaries in a graceful way.

Her love story with her husband embodies what those of us with chronic illness deserve, a partner who sees us as more than our disease, but understands the severity and complexity at the same time.

Juggling a Career and Crohn’s

One of the biggest challenges of life with IBD is knowing how and when to disclose your health situation with your employer. You may wonder how the news will be received, if it will jeopardize your chance for promotion, if your coworkers will resent you…the list goes on and on. As someone who worked in the TV industry as a producer, news anchor and reporter for nearly a decade, and as a PR professional and corporate communications specialist, I’ve been lucky that all my bosses have been incredibly understanding of my struggles with Crohn’s, but never used them against me in any way. I’ve always waited until after I have received the job offer and then told my boss in a meeting the first week of work. This alleviated some of the stress on my shoulders and ensured my coworkers wouldn’t be blindsided when I had a flare that landed me in the hospital. By communicating openly, it also to set an expectation that I may not always feel up to par and that I may need more bathroom breaks or to work from home or come in late after doctor appointments.

Tessa so eloquently writes, “You want your boss to understand that while your disease affects your life, you’re still capable of doing your job. Deliver the necessary facts about your illness without bombarding your boss with information—keep it direct and simple. Be clear about how you manage the illness and that although you do your best to keep it under control, it can flare up. Tell your boss what you’ll do if and when that happens.”

Realizing the Power of Pain

One of my favorite analogies that Tessa shares in the book is that each of us carries an invisible bucket, some are heavier than others, and the weight of that said bucket is constantly in fluctuation. She says that as she started connecting with those in our community, she came to realize that her personal pain was no better or worse than anyone else’s. So often we weigh our struggles against those of others, and that’s not helpful to beneficial for anyone.

“Think about it: If a friend came to you in pain, would you tell them that other people have it worse and that their pain isn’t valid? If you did, you’d be a lousy friend—so why do you speak to yourself in such a way?”

Rather than thinking that ‘someone always has it worse’ ask for support when you need it. Don’t downplay your struggles out of guilt thinking you aren’t deserving of help. Give support when you can but don’t forget about the person you see looking back in the mirror, be loving, kind, and patient to them, too.

Leaving the Rest to Imagination

Some of my other favorite excerpts from the book are Tessa’s “Seven Secrets”. The secrets (both big and small) she keeps from loved ones and friends about her experience with IBD. The secrets are relatable. We don’t want to come off as a burden. We don’t want to scare those who mean something to us. We want to hold on tightly to the notion that our illness doesn’t define us, so we often don’t disclose the true reality of what encompasses our illness.

Another section I know you’ll love is “Thirty-Eight Experiences of Joy” where Tessa shares quotes from 38 different people with chronic illness and how they’ve discovered joy despite their illness. I’m honored to be featured in that section of the book.

She understands the power of community and how finding your tribe within your disease space and outside of it is an important aspect of disease management and life fulfillment.

“Connecting with other chronically ill people teaches you how to carry each other’s weight—when to lift when you have strength, and when to share the burden when you have no energy left,” writes Tessa. “I’ve found the chronic illness and disability community to be one of endless empathy and generosity.”

The Gratitude That Comes with Chronic Illness

I’ll leave you with one of my favorite quotes from the book and a perspective that I wholeheartedly share:

“At the beginning of my illness, I was so inwardly focused on what I’d lost that I couldn’t see the gifts illness had given me. Mom, a determined optimist, taught me to always look for the silver lining. Mine is this: Yeah, my body won’t allow for any bullshit—no jobs I hate, no relationships I’m not fulfilled by, no hours crying over wrinkles. Illness made me braver, kinder, and more empathetic, and that gives me way more radical power than the faux control I was clutching to for so long. In the most unexpected way, illness freed me. It compelled me to begin therapy, which kick-started the process of tending my wounds old and new. It made me focus on the present more than the anxiety of the future. And it made me be in my body in a way I never experienced before. Suddenly, I had to mindfully care for my body and brain as best I could and understand that beyond that, it’s out of my hands.”

Connect with Tessa:

Twitter: @TessaJeanMiller

Instagram: @tessajeanmiller

Her website

Purchase “What Doesn’t Kill You: A Life with Chronic Illness–Lessons from a Body in Revolt”

Amazon

Barnes & Noble

IndieBound

Stay tuned to my Instagram (@natalieannhayden) for a special book giveaway kicking off today (February 8)! Five lucky followers in the United States will receive a FREE hardcover copy of Tessa’s book.

The mental health burden of IBD and coping through community and therapy

When you live with chronic illness, you experience a wide range of emotions and personal experiences that shape you. Life can feel like an uncertain rollercoaster ride, you never know when the next twist or turn is going to happen. This week on Lights, Camera, Crohn’s, 21-year-old Parsa Iranmahboub, candidly shares the mental health burden that IBD brings upon a patient. Diagnosed with Crohn’s when he was only eight years old, Parsa shares the perspective of what it’s like to be a pediatric patient who has grown into adulthood. He’s currently a student at UCLA and the Education Chair for the Crohn’s and Colitis Foundation’s National Council of College Students.

Parsa explains the psychosocial component of life with Crohn’s disease and ulcerative colitis by breaking it down to anxiety, embarrassment, guilt, and loneliness. He recently spoke about this at the Crohn’s and Colitis Congress as well as on IBD Patient Insider and his powerful words resonated with me and I know they will with you, too. Here’s Parsa’s breakdown of the IBD patient experience:

Anxiety: Being a bathroom disease, there is often the anxiety of whether a patient has easy accessibility to a restroom when they are out. But there can also be anxiety related to a patient’s diet. When I was younger, I was placed on a low sodium diet due to one of my medications. If I wanted to eat out with family or friends, there would be this anxiety of whether I could even eat anything from the restaurant. There’s also the anxiety that stems from extra-intestinal manifestations. I have a history of developing fistulas. And during my sophomore year of college, my labs were not looking too good, I was flaring a little bit, and I began to worry if this meant I would develop another fistula. I began to wonder how I would deal with a fistula as a college student. How would another flare up affect my grades and my ability to get my work done? I lived in a communal style dorm, so how would a sitz bath even work? Essentially, with anxiety there can be this fear of the disease taking over my life and how can I constantly accommodate it.

Embarrassment: Embarrassment can arise in numerous forms. For one, there’s the poo taboo. But there can also be embarrassment from when you are flaring. From when you are losing weight, when you no longer look healthy, when you now look “sick.” There are the side effects from medications. From when you begin to gain weight, develop acne, and now have that dreaded moon face. Let’s not forget the impact of extra-intestinal manifestations. In 6th grade, I had surgery for a perianal fistula. After the surgery, I had to wear tighty whities with a maxi pad to help absorb the pus. It would be an understatement to describe how much I began to despise physical education. Not because I had to exercise and run around. No, I was always too active of a kid to hate PE. But because we had to change into our uniforms during the beginning of class. And I was embarrassed to be in the locker room. I was embarrassed that everyone else would look cool with their boxers, but here I was with my tighty whities and a maxi pad. And it might sound ridiculous, almost like a scene taken from the “Diary of the Wimpy Kid”, but to my sixth-grade self, looking cool and being like everyone else mattered.

Guilt: There is often the guilt of feeling like a burden for others. That others have to not only be flexible with you but that they need to make accommodations because of you. “Oh, you all want to go hiking, well I can’t because there’s no accessible bathroom.” “Oh, you all want to eat at this place, actually can we go somewhere else where I can better tolerate the food?” There can even be instances where you feel guilt for believing that you no longer are a good friend. That since you have to refuse to hang out with friends because of fatigue or pain, your friends probably think you simply don’t enjoy hanging out with them. But there can also be guilt from a non-compliant label. When I was younger, I would receive weekly injections. Soon, I began to throw up after every injection. My doctor switched me to the pill version, but it would still make me feel incredibly nauseous. So much so, that I would refuse to touch the pills. Instead, I would take the pill container, open the lid, slowly pour the pills into the lid, pour too many, attempt to pour the extra pills from the lid back to the container, and once again pour too many pills back. It was a whole process. But I simply refused to touch the pills.

Well, it shouldn’t be a surprise that eventually I became non-compliant. Consequently, I switched medications and soon developed acute pancreatitis. At the onset of my symptoms, I was out of the house and had to call my dad to pick me up because I was continuing to throw up blood. And in the car, I told him “Dad, I think I’m going to die.” Thankfully, it was an over exaggeration. But at that moment, it wasn’t.

Parsa with his parents.

Now that I reflect on the moment, not only do I feel guilty for putting myself through that situation, but for also putting my family through that. I can’t imagine being a father and hearing your son tell you those words. And all of this happened because I couldn’t get myself to take those stupid pills. So, not only was I labeled as a non-compliant patient, a patient who was too immature to take his medications, but I was now also a patient who had “hurt” his family.

Loneliness: IBD is an invisible disease. You might look at a person and not realize they are living with a chronic illness. The invisibility is both the disease’s blessing and curse. There have been so many instances where I’ve been happy to have the ability to put on a mask and pretend that everything is okay. That my friends and peers do not have to associate me with a “disease,” a connotation that I despise so much that I often introduce my chronic illness as Crohn’s and not Crohn’s disease. However, because of the invisibility, the disease can feel extremely isolating. You might not know anyone else who can relate to your experiences/feelings. In fact, despite being diagnosed at a young age, for almost a decade I refused to share my story with friends and those close to me. It wasn’t until I met an IBD patient for the first time who was my age that I began to realize the importance of a shared community.

Dr. Tiffany Taft , PsyD, MIS, a Research Assistant Professor at Northwestern University Feinberg School of Medicine, spoke alongside Parsa during that Crohn’s and Colitis panel about Mental Health as it relates to IBD. As a Crohn’s patient of 19 years herself, she offers a unique perspective for her patients. I asked her when an IBD patient expresses these feelings of anxiety, embarrassment, guilt, and loneliness how she helps people deal with the struggles.

“The first thing I do is simply listen and reflect to the person my understanding without advice or judgement. It’s important to let someone tell their story before interjecting with any sort of interpretation or the like. Then, I start with some education about how our thoughts affect how we feel and how we behave. And that these thoughts are often on autopilot or may feel like they’re on an infinite loop and impossible to turn off,” explained Dr. Taft. “My goal is to help the patient understand their thinking and learn to slow it down and take a step back from their thoughts to be able to evaluate them, and maybe either change them or not let them have as much power.”

She went on to say that from there her and her patients tie their thoughts into other symptoms like anxiety, shame, or guilt, to see patterns and opportunities for change.

“It’s not an easy process, but most people can succeed. Loneliness has been harder during the pandemic. Social distancing has created a lot of isolation without an easy solution. I encourage staying connected via video chat, texting, and social media (so long as it’s not stressful!) People say that online interactions aren’t as fulfilling, and that’s probably true. But if I shift my thoughts from this negative lens to a more positive perspective, then it can help offset some of that loneliness until we can all be together again.”

The Decision to Open Up

It takes time and patience for many of us to come to terms with our diagnosis and decide how we want to present our experience to the world. For both Parsa and me, it took us a decade to take off our proverbial masks and share our reality with those around us. Parsa says he decided to share his patient journey at the end of freshman year of college after he joined a research lab at the UCLA Center for Inflammatory Bowel Diseases. He met someone for the first time who was his age and had IBD.

“When I was talking with her, this sort of light bulb just sparked. I realized I could connect with this person in a way I couldn’t have connected with anyone else before. She truly understood the challenges I was facing or had faced. Not from a scientific or “oh, I see” perspective, but from a “oh, I know cause you’re not alone” perspective. This connection was essentially my first exposure to the IBD community, and slowly, I began to become more involved in the community.”

The Power of Connecting with the IBD Community

Parsa went from forming his first spin4 team to joining the National Council of College Leaders to becoming more involved with his local chapter in California. He then started a local support network for college students on the UCLA campus. His advice for patients and caregivers—find a support network within the IBD community.

Foundation of National Council of College Leaders (NCCL)—this group of college students from across the United States volunteers with the Foundation to provide a distinct voice for young adults with IBD. Members also connect on how IBD affects them as students, athletes, and partners in a relationship, the intersectionality that stems from a patient’s identity, and tips for having an ostomy bag, reducing stress through coping mechanisms, and applying for accommodations at school.

Parsa also co-founded IBDetermined at UCLA, a student organization geared towards providing a support network and advocacy-centered space for UCLA students with IBD.

“Even though there are some amazing national and local support groups, we noticed that there was a gap for local resources that focused specifically on the intersection between being a college student and an IBD patient. Hence, we wanted to create that more local space, where individuals could address their specific questions/concerns/thoughts relating to being an IBD college student at UCLA. It’s a space where our members can learn about accommodations that are available through our university’s Center for Accessible Education, can exchange tips and advice for navigating schoolwork and college life with IBD, can express their frustrations about the disease or the lack of university resources, and can share where the best and cleanest bathrooms are located on campus.”

Parsa says growing up with Crohn’s made him responsible at a young age. He learned about resilience. He learned to embrace the obstacles he has hurdled and to keep on pushing through even when he couldn’t immediately see the light at the end of the tunnel. Parsa says he learned to appreciate the time he felt healthy enough to live life not controlled by a chronic illness. Through the years he’s realized you can still be fortunate through a misfortune. This belief has given him a strong appreciation to make the most of the opportunities that come his way and refuse to take the easy way out.

Pregnant with #3 and excited to share more news with you!

Well, the cat’s out of the bag. I’m 14 weeks pregnant (tomorrow) with a baby BOY! We will be family of five in mid-July. Since as long as I’ve remembered, I’ve envisioned my life with three children, I just never thought it would happen in the middle of a pandemic! Bobby and I feel extremely fortunate with all the outpouring of love, support, and congratulations during this exciting time for our family. As an IBD mom, I feel constant gratitude that my remission has held strong these 5-plus years and enabled me to have healthy, uneventful pregnancies. So far, out of all four of my pregnancies (miscarried between Reid and Sophia), this one has been my “easiest”. Aside from too many migraines to count, the nausea and fatigue in the first trimester were minimal and I feel great most days.

While I plan to be transparent and share content over the next six months about my experience being a high-risk pregnancy during these crazy pandemic times, I also want you to know I’m cognizant of the fact that pregnancy announcements, and pictures of baby bumps can be a trigger for our community. I am empathetic to the fact that family planning can look differently for those of us with Crohn’s and ulcerative colitis. Because of this—I’m excited to announce I’ll be launching a special series on Lights, Camera, Crohn’s entitled “IBD Motherhood Unplugged”.

IBD Motherhood Unplugged topics will include (but are not limited to):

  • The decision not to have children due to IBD
  • Being told you can’t carry a child and coping with that loss
  • Adoption
  • Surrogacy
  • Infertility
  • IBD pregnancy after loss
  • Single parenting with IBD
  • Biologics and pregnancy/breastfeeding
  • The list goes on…

If you want to share your experience of navigating family planning or motherhood with IBD, please reach out. I already have several women lined up, ready and willing to share their personal journeys. I’m anxious to share their brave and resilient words with you.

My advocacy focus has always been to be the voice I so desperately needed to hear upon diagnosis and through all of life’s milestones. I want you to feel seen. I want you to feel heard. I also want you to remain hopeful that pregnancy and motherhood is possible for most women with IBD, we all just get there in different ways.

Public Policy Advocacy—Pandemic Style: How one IBD volunteer has redirected his efforts to social media

He’s not your typical IBD advocate. He doesn’t have Crohn’s or ulcerative colitis himself, but he’s extremely passionate about supporting the patient community, spreading awareness, and making a difference. John Peters’ wife, Katherine, was diagnosed with Crohn’s when she was 12. John met her when she was 21. They dated 4 years and just got married in April. As they dated and got to know one another, he had a front row seat to the challenges IBD brings about in a person’s life. Ironically, John’s brother, Bobby, was diagnosed with ulcerative colitis this past year.

John and his brother, Bobby

Connecting with the Crohn’s & Colitis Foundation

When John met Katherine, he remembers how she was a volunteer at Camp Oasis.

“I remember her coming back from camp and telling me what a rewarding and inspirational experience it was. I signed up the next year because I wanted to learn more about Katherine’s illness, while contributing to a good cause. As I reflect on my experience at Camp Oasis now, I feel like it enabled me to develop a deeper appreciation for the courage those with IBD bestow.”

John sees volunteering as a win-win, not only does it give him an inside look at IBD, but also allows him and his wife to spend quality time together. Out of all the volunteering he’s participated in, Camp Oasis takes the cake.

“The campers love sharing stores about IBD, and every camper feels connected to everyone around them. They don’t need to feel embarrassed because everyone at Camp understands first-hand (or through loved ones) the challenges that having IBD brings. It’s a pretty amazing atmosphere to be a part of and the experience has given me a different level of empathy for those who live with Crohn’s and ulcerative colitis.”

From Camp Oasis to Day on the Hill

Day on the Hill is the Crohn’s & Colitis Foundation’s annual two-day event, where volunteers from across the nation meet in Washington, DC to talk with their legislators about policies that directly impact the IBD community.

Because of COVID-19, last year, the Foundation took Day on the Hill virtual, hosting virtual advocacy trainings and organizing conference calls with Members of Congress, their staff, and Foundation volunteers. Plans for 2021 have not been announced yet.

Day on the Hill has been my most educational experience with Crohn’s and Colitis Foundation so far. I was unaware of what legislative action could do or how much it can affect an IBD patient. My mission is to inform as many people as possible about what legislation can help IBD patients and how to advocate for it. The more people who advocate, the greater the chance for change,” says John.

John with his wife, Katherine, at the Capitol for Day on the Hill

There are two main bills volunteers have been focusing on:

Safe Step Act—This bill would reform the practice of step therapy, which requires patients to try “insurer-preferred” medications before a more ideal medication recommended by the physician. The hope is to create a more transparent and expeditious appeals process.

Medical Nutrition Equity Act—Insurance companies and other healthcare programs would be required to cover necessary foods prescribed by the physician.

“We also petitioned Congress members to join the Congressional Crohn’s and Colitis Caucus which endorses IBD healthcare protections and IBD research.”

How to get involved

John says Day on the Hill is truly a one-of-a-kind experience. He recommends anyone who may be interested to take the leap and apply to participate.

“Our day was mostly speaking with Congress members’ staff and explaining what we are petitioning for (see the bills above). I was on a team of five volunteers and each one had a chance to share how the proposed legislation affects their daily lives. It was incredible to see how just one bill in Congress can have resonating effects on so many people.”

John’s advice—to contact your local congressional representatives and discuss these bills. Click here to find out who your local representatives are. Every single person who advocates for these bills gets us one step closer to getting them passed in Congress.

Taking Public Policy Advocacy a step further

As John juggles being a full-time medical student, a newlywed, and navigating the pandemic, he’s decided to create Facebook and Instagram groups solely dedicated to educating our community about IBD legislation.

He recently launched the following social media pages:

Facebook: Crohn’s and Colitis Legislative Advocacy

Instagram: @ccla_ig

Give the pages a follow and stay up to date on all the latest IBD political news. It’s important to note John created these social media pages on his own and they are not affiliated with the Crohn’s & Colitis Foundation.

Advocacy doesn’t happen only during Day on the Hill, it’s important to join the Foundation’s Advocacy Network to receive alerts around times of action. You can do so by visiting here.


Rolling up sleeves for a hopeful future: Immunocompromised healthcare workers with IBD share their vaccine experiences

Since the start of the pandemic, healthcare workers have carried the heaviest burden. Especially those who are immunocompromised while working in harm’s way. This week on Lights, Camera, Crohn’s you’ll hear from three healthcare workers with IBD who are immunocompromised and have received their first vaccine. It’s my hope that by hearing from these warriors firsthand that you’ll gain a sense of comfort, understanding, and perspective while also understanding the importance of debunking medical misinformation. Our IBD community is delicate and requires more expertise than simply listening to a family member or friend who “read something on the internet” or someone who has a cousin with Crohn’s (or now COVID).

Wearing several hats—IBD Mom and Relief Charge RN in COVID Unit

When Shermel Edwards-Maddox of Houston was diagnosed with Crohn’s disease in 2007 at age 24, little did she know that she’d one day lead the charge in a medical unit in the thick of a pandemic, while having two kids and a husband at home, while being on a biologic.

“It has been both physically, mentally, and emotionally draining. I imagine that every healthcare worker has been afraid however being immunocompromised has added an extra layer of fear. The emotional and mental exhaustion comes from the constant worry of “what if today is the day I catch COVID”? Every time I step onto the nursing unit, I’m aware that I could contract the virus. It’s very reminiscent of IBD and the worry of whether a flare is starting.”

Like many other healthcare workers (and the general population for that matter!), she says the roll out of the vaccine provided her with a sense of relief, but also an understanding about the importance of educating the public about the importance of getting vaccinated. As a nurse, she has a solid understanding of how clinical trials work and knows that more than 70,000 people received the vaccine between the Pfizer and Moderna trials. She was especially excited to receive the vaccine after it was found to be 95% effective. Shermel feels blessed to receive “0.3ml of hope” in a syringe and says many in her shoes feel like they just received their “second wind” after months of being beyond exhausted.

“It was quite emotional. I shed several tears in the days leading up to the vaccine. Those tears were in amazement of how grateful I am to be getting a vaccine that could spare me from this horrible virus that takes the lives of so many. When it came time for getting the vaccine, I felt pure excitement!”

Shermel’s only side effect she experienced was a sore arm, which is expected with any type of vaccine.

The COVID vaccine allows Shermel to not only protect herself but her husband, children, patients, and the community. It makes her feel hopeful to know her daughter will get to see her kindergarten teacher’s face without a mask and that her son will be able to attend his school graduation, free of social distancing. 

From an Ostomy Reversal in March to working as a clinical researcher

Caroline Perry also happens to live in Houston and after battling Crohn’s since the age of eight in 2000, she had an elective ostomy reversal surgery March 4th just as the pandemic was unfolding in the States. She takes Entyvio AND Stelara and says that even though she’s on two biologics, her physician had explained to her that both drugs have a relatively good safety profile. While she wasn’t overly nervous about contracting the virus more than the next person, she has been nervous about how her body would react to it.

As a clinical researcher, her boss, happens to be her gastroenterologist. Having her care team readily available and working alongside people she knows and trusts on both a personal and professional level has helped her cope through the pandemic immensely.

Prior to receiving the vaccine in December (2020), Caroline admits she had some initial concerns and brought them up to her doctor, which is what she recommends everyone does.

“Many people are getting all their information from the internet or by word of mouth and are neglecting to listen to our experts—some even mistrusting them. My doctor gave me lots of evidence on why she believes the vaccine is safe and debunked a lot of my fears, which I found out were fairly common questions or misconceptions regarding the vaccine. I got the information I needed to make an informed decision, and once I had all the information, I was no longer worried about getting the vaccine! I am much more concerned about getting COVID than any potential side effect of its vaccine.”

Caroline says she was so excited to receive the vaccine, not only for herself, but for all the healthcare workers that were in the room with her.

“Sitting in that chair, it hit me. I was really experiencing a significant piece of history and I will never forget the feeling of palpable relief in that room. As healthcare workers, we have heard nothing but bad news for so long, and the vaccine is a beacon and glimmer of hope, at the end of a very long tunnel.”

Due to the pandemic, Caroline and her fiancé canceled their wedding for the time being, but finally feel like they can breathe a sigh of relief. Her fiancé won’t be eligible to receive the vaccine until the last round is available, so until then, she says they will continue to practice COVID precautions and keep up to date with the latest data surrounding the vaccine.

After receiving the vaccine, Caroline still received her Entyvio that afternoon! Her only side effect, like Shermel, a sore arm. As of now, she’s working on COVID research in addition to her usual IBD research. Caroline says this past week was her first time working in the COVID ICU for a new clinical trial, and she felt a lot safer thanks to having the first vaccine.

Juggling Women’s Health while being a mom of 3

Janice Eisleben, a Women’s Health Nurse Practitioner in St. Louis, was diagnosed with Crohn’s in October 2017 while pregnant with her third child. She was initially on Humira, but started Stelara a year ago. Janice happens to work at the OB office I go to, so I know her personally and have experienced her amazing care through my own pregnancies. We connected immediately once we both discovered years ago that we were IBD moms on biologics.

She recalls how scary the onset of the pandemic was, between the limited information and the looming unknown. As a patient with IBD, on a biologic, she wasn’t sure what that ultimately meant for her well-being. When she found out the vaccine was going to start being available to healthcare workers, Janice says she was elated.

“I feel like the vaccine finally offers some level of comfort to healthcare workers who have literally been giving everything they have to take care of patients. And this is not limited to nurses and doctors! The hospital cannot run without the respiratory therapists, housekeepers, and maintenance staff—these people are truly the unsung heroes of this pandemic.”

Janice said she did not have concerns or worries about the vaccine because she had been following the clinical trials from the early stages. She says the energy she felt just standing in line to receive her vaccine was something she’ll always remember and that everyone there was beyond ready to take this next step.

“It was incredibly emotional. I honestly teared up when I received the email inviting me to schedule my appointment. I was so excited that the night before I had trouble sleeping—kind of like a kiddo who can’t sleep the night before Santa comes. This vaccine means so much for us. It means that maybe sooner than later I will feel more comfortable with my kids going back to school and participating in activities. It means that we have less worry about me bringing this virus home from work to our household, and less worry about me getting a severe case of this virus.”

She says she can completely understand why someone would be skeptical of the vaccine, but she encourages everyone to avoid the “Google trap” and to please contact your physicians/care providers to discuss it further. For anyone with IBD, Janice advises you to specifically contact your gastroenterologist. If there is anyone those of us with Crohn’s and ulcerative colitis should trust, it should be our GI!

Janice’s only side effect was also a sore arm, though she does anticipate more symptoms (low grade fever, aches, fatigue) after the second dose, because this was well documented in the trials.

Helpful Resources to Educate Yourself About IBD + COVID Vaccine

About IBD: Podcast Interview with Dr. David Rubin: A Key Opinion Leader in IBD Helps Patients Understand What to Expect with Vaccination

Crohn’s and Colitis Foundation: COVID-19 Vaccines: What IBD Patients & Caregivers Need to Know