I recently connected with a fellow IBD patient on Twitter named Jessica Pérez-Cámara. Aside from both of us battling Crohn’s disease and both of us taking Humira, we’re also both journalists. This week—Jessica shares an emotional piece about what it was like to take on inflammatory bowel disease, amidst a natural catastrophe, mid-flare. I’ll let her take it away.
Life with IBD is hard enough. 
Try having a flare during the worst natural disaster in the history of your country. It happened to me. I survived.
On September 20, 2017, Category 4 Hurricane Maria made landfall in Puerto Rico, causing a humanitarian crisis. Maria left nearly 95 percent of the island without communications, water, electricity and with limited medical access.
Many of the 3.4 million U.S. citizens living on the island had restricted access to resources like food, fuel, among many other essential needs. No communication, no cell phones, no internet. Nothing. I am a journalist who, at the time of the storm, was working as a communications assistant in the local Government. My job was to share news to the public before and after the hurricane. My country ended up getting hit with two hurricanes, and my beloved grandmother passed away a few weeks earlier. She died the day before Hurricane Irma. It was all such a whirlwind, as the stress mounted, so did my flare. 
I was diagnosed with Crohn’s Disease in August 2015, even though I’ve lived with IBD for more than three years, I’m still learning to navigate my illness. Upon my diagnosis, I was put on Asacol and Budesonide. I had been fearful of going on a biologic and did all I could to avoid them. But, deep down I knew the moment would one day come.
Nonstop work after Hurricane Maria
I worked nonstop for months on the initial hurricane recovery efforts. As I took on this responsibility, I was flaring badly. Many hospitals were not working full capacity, running on generators and with shortages of basic medications like IV bags.
I was feeling terrible, exhausted, the fatigue and diarrhea were worsening, but I kept working through the pain. I was putting my duty for my country before my health. I was working long hours and when I got home, it did not get any easier, because life was not the same. Basic things like food, water, fuel for the generators, gas for the cars and even having a good meal or taking a shower were more difficult. My body ached from head to toe. The food was scarce and what was available was mostly junk food, fried food and canned food.
One morning I decided to stop in my GI’s office. He had lost the A/C unit and the office was flooded during the storm. He ordered some labs, an emergency colonoscopy and a few days of rest. I was anxious, exhausted, scared. After the colonoscopy, I was prescribed prednisone for a month and then started Humira.
Humira without electricity at home
I began using Humira in November 2017. My initial four loading dose shots were at my parent’s house, because they had two power generators and could have the refrigerator running 24/7. They kept my Humira for the rest of the blackout for us, which lasted 114 days.
It’s now a year later. I am back to normalcy – to my new normal- of giving myself painful shots. I’m in the process of receiving the Citrate-free (pain free) Humira and I can hardly wait! Unfortunately, I deal with some side effects from the medication (general body aches and joint pain, fatigue and weakness). That being said, the minor side effects I deal with are manageable and worth it to keep my disease under control.
An important conversation about chronic illness
As a Crohn’s patient and as a Puerto Rican, 
I hope my experience sheds light on what it’s like for those in the chronic illness community as they endure the repercussions of natural disasters. It’s a critical conversation that needs to happen—preparedness for the IBD community in the face of weather disasters. How can employers, government and society step up to the plate?
One year ago, I began walking the path of the Hurricane to the path of remission. I look forward with a sense of hope for the future both as a person and as a patient.
Sickness and health truly take on a whole different meaning when you live with a chronic illness. Katy witnessed her husband Vince’s compassion and character while they were dating.
“Operation: Good Health.” She made it a priority to get a minimum of eight hours of sleep a night, as lack of rest tends to be a trigger for her. She was on a mission to hydrate, hydrate and hydrate some more. To set herself up for success and limit any surprise flares, she planned out her meals the entire wedding weekend. For example, she does well with bland foods, like noodles, rice, chicken and (big one) avoiding alcohol. And finally, she delegated responsibilities (aka stress) to friends and family. Katy admits she’s pretty Type A and would much rather do things herself than hand them off. However, she wanted to enjoy her wedding and because of her proactive planning, she was able to do just that!
Reagan, Grayson and Carter may not understand why their mommy is in bed or why she needs to pull over on the side of the road when she gets sick, but Katy’s Crohn’s has taught her children a great deal of empathy at a young age. A few weeks ago, she was in debilitating pain and her nine-year-old offered to make dinner for her brothers. She poured them each a bowl of cereal and that was everything.
While I feel incredibly blessed to be in this position, it comes with its own unique set of worries.
They will live within a home that talks about chronic illness and experiences it each day. Your little ones will learn compassion and perspective before they are even able to truly communicate. If you have a child and chronic illness, you know what I mean.
Whether it’s with motherhood or with living life with Crohn’s, it’s important to remind yourself that everything goes through stages. There are highs and lows, but each moment is fleeting.
She’s a ball of energy and a sweet little chatter box, wise beyond her years. Seven-year-old Brooke, of Missouri, was diagnosed seven months ago with Crohn’s disease. She spiked a fever on New Year’s Eve 2017 that lasted for eight days, and from that point forward, life was never the same.
Brooke and her family were told she had Crohn’s disease on March 2, 2018. In a matter of months, she went from being an outgoing, energetic kid to a hospital patient on a laundry list of medications. She developed her first fistula while on methotrexate and was on prednisone for more than three months.
d we do something to cause this? Were we making the right decisions for her treatment and care? Brooke has a HUGE personality. When she was first sick, and before her diagnosis, she just stopped talking. She would lie on the couch for hours and hours every day. This was not my Brooke. She normally can’t sit still for more than a few minutes! I was SO scared because I knew something wasn’t right. Watching her in pain and miserable for two months while we waited on this diagnosis was miserable. You just feel helpless…all we could do was love her and pray,” said Tara.
When you’re going through this, you are spread so thin and it’s difficult to ask for help. We have another daughter, Haley, who is 10. Of course, when Brooke was in the hospital, either Josh or I were with her every minute. We live over an hour from Children’s Hospital in St. Louis, so it wasn’t possible to pop up for a quick visit. It was also hard for us to ask for support. We needed help mentally, financially, and logistically with many things. We have an AMAZING support system of family and friends who have helped us throughout this process.”
Although I know she doesn’t know yet, what it really means to have Crohn’s, I am always so amazed by her strength. She talks about it very ‘matter-of-factly’. It doesn’t define her. I hope and pray constantly that anything that I encounter, I can deal with, the way she has dealt with this. It’s made our family stronger by seeing that we can face this together.”
As a patient advocate myself and as someone who battles Crohn’s disease, Bill’s life and experiences have shaped how I take on my disease. His strength, perspective and perseverance constantly inspire me to push through bad flare ups and remind me that each setback, procedure and surgery is nothing I can’t overcome. Bill and I grew up down the street from one another, he’s more like a brother than a cousin.
About four months ago, I teamed up with 
Keep Swimming Foundation provides financial relief to families of critically ill patients so that they can afford the non-medical costs associated with visiting their loved one (bedside meals, lodging, parking at the hospital, gasoline, etc.). As a chronic illness patient, I can attest to how beneficial this is for families as they grapple with health issues and financial concerns.
This would be big for us, so I truly hope people will help us obtain this contribution from DripDrop,” said Bill.
This Friday, I’ll be 27 weeks complete with my baby girl. My January due date is quickly approaching. Time is going both fast and slow. For the most part, my Crohn’s has behaved itself. But, there have been multiple times where I can’t seem to decipher if what I’m feeling is related to pregnancy aches and pains or my IBD. The burning and gnawing feeling in my abdomen often feels so reminiscent of the beginning of a bowel obstruction that I can’t help but fear the worst.
It’s difficult because every single pregnancy is different and so is every single person’s IBD. My OB tells me that with a contraction the pain will come and go, and I’ll be able to see a pattern and time it, whereas Crohn’s pain will be constant.
My advice to myself and to all of you who may be dealing with these same fears and thoughts is to listen to your body. Be mindful of when you hurt, why you may be in pain and how often it’s taking place. Don’t turn a blind eye to your aches and don’t feel like a bother to your GI or OB. Reach out to your healthcare team and alert them when you have a concern, so they are aware of what’s going on. This is not a time to internalize your pain. This is a time to be vocal, be your own best advocate and start being the strong IBD mama that you are for your unborn child.
While yoga and DripDrop are different, I think of them much in the same way. They go hand in hand. While I’m driving to yoga class and sitting on my mat before we start, DripDrop was formulated so water and salt can be absorbed quickly, making recovery as effective as an IV. I can hydrate my body in a matter of minutes.
Chasing around a toddler all day, while nearly 30 weeks pregnant, while battling Crohn’s disease is taxing. By taking time for myself and slowing down for a couple of hours of week, I’m setting myself up for success and optimal health.
The profession entails a great deal of stress, both physically and mentally. Not only are the hours long, but you are exposed to a ton of people who are sick, while you are immunocompromised.
“The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.” The author, Sarah Anne Shockley, lives with chronic pain herself and offers sage advice about how to find compassion within yourself and adjust your mindset. To Sarah, “pain is a necessity, but suffering is an option.” I’ve found personally after living with Crohn’s for more than 13 years, that the way I look at, deal with and handle pain has evolved greatly in that time. It’s not something that happens overnight, but you’ll notice a transformation within yourself as time goes by. You come to find a kind of patience and strength within yourself that you never knew existed.
This excerpt really spoke to me, since no two IBD patients have the same exact journey or disease process or pattern. We’re all unique in how we experience the disease but can find great comfort from leaning on those who “get” the pain on a different level than the average person.
The same goes for chronic pain. We all know with IBD that symptoms of a flare start to fester. We know it deep down and may try and keep the worry and stress to ourselves. Until the pain is too much to take on alone. Think of pain as your body communicating with you and giving you a target for healing.
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