This week–a guest post from an IBD advocate who continually inspires me. Meet Sonya Goins. 
She is a news reporter for a community television station in the Minneapolis/St.Paul area. Sonya is also a Crohn’s patient, diagnosed with the digestive disease in 1985 while she was in college. I’ll let her take it from here:
While fighting the physical pain of Crohn’s is tough, the mental aspect is even harder.
On January 3rd, 2018 my doctor put me on TPN (Total Parenteral Nutrition), which means I was fed through my veins. All of the nutrients I needed to survive were in an IV bag and pumped through my veins throughout the day. My doctor wanted to give my colon a rest so ulcers could heal. I endured this treatment for eight and half months. It was one of the most trying times of my life. No food, just water, broth and on occasion, coffee.
Despite my circumstances, I named my IV catheter “hopeful.” 
However, it took me a minute to adapt a positive inner attitude. You see, in public I put on a good, cheerful attitude. There were times when I wanted to crawl up into a big ball and shut out the world. The first few weeks of constantly wearing a backpack full of IV fluids were very hard. I did not like what I saw in the mirror. I was angry at my situation. It wasn’t until I visited a pediatric Crohn’s and Colitis Foundation support group that I changed my way of thinking. Seeing young people living with the digestive diseases, and going about their lives despite their circumstances, motivated me to do better.
I had to live my new normal to the best of my ability.
The mental game of TPN
Mentally, not eating real food was very, very challenging. Although I could not eat, I still cooked for my youngest child. The smells of the food made my mouth water, tempting me to taste what I know would make me sick. There were a few times I lived on the edge and took a sample. I paid for my mistakes—painful cramps and bloody diarrhea were my punishment.
After the first month on TPN, I knew I needed professional help if I were to survive. So, I sought the help of a therapist. I also prayed and meditated—a lot. 
First, I needed a distraction for when I was tempted to eat. A friend taught me how to crochet. She even purchased the yarn, hooks and beginner books to get me going. I still cannot do a granny square, but I learned a new skill.
When times were bad and I wanted to give up, I would mentally go to my happy place—Turks and Caicos. Several years ago, I visited the Caribbean Islands. I imagined myself sitting on the pristine beaches, watching the waves crash.
The social impact
The loss of social invitations also did a number on me. Some of my friends did not want to hurt my feelings by eating in front of me, so they stopped including me. However, I did have one friend who went out of her way and found a restaurant that served the best broth in town. We sipped on broth and caught up with each other’s lives. This was one of the highlights.
I was determined not to let this situation get the best of me. Instead of going out to eat with friends, I invited friends to go for a walk. I walked with former coworkers, acquaintances and family members. The fresh air and good conversations did me a lot of good.
Taking steps to heal mentally and physically
Walking became my foundation. I was motivated to walk for another reason. Before I got sick, I signed up for several half marathons to raise money for the Crohn’s and Colitis Foundation. I finished the New Orleans half marathon in March, just three months into my treatment. I have never been so proud. I had to walk the race, but I finished. Several months later, I also completed the Twin Cities 10 mile race, and the Savannah half marathon.
My unexpected journey made me stronger mentally and physically. I am more outgoing and more self-assured than ever before. After all, you cannot be shy walking around with an IV bag strapped to your body.
I share my story to give others hope.
Sonya Goins is also a Crohn’s and Colitis Foundation Board Member/MN Dakota Chapter. You can find her blog at SonyaStrong.com. She also has a podcast on iTunes and GooglePlay entitled “Conversations about Crohn’s and Colitis.”
Anthony has seen me fight for so long. It makes me feel like I’m not going through this alone,” said Alexandra.
Chronic illness, while physically, mentally and emotionally taxing, also has the ability to show us the beauty of the world around us and all that we’re capable of. Instead of thinking how my Crohn’s holds me back—I think about how I’ve lived despite its restraints.
My disease has helped me take on motherhood. It’s made me soak in the feel-good moments, take mental snapshots of the happy days and celebrate the beauty of life. My disease has forced me to press pause when I’m doing too much, it’s reminded me of the importance of self-care and taking time for me. It’s shown me which people are meant to be in my life and which are meant to be in the backstory.
Try having a flare during the worst natural disaster in the history of your country. It happened to me. I survived.
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.
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?
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.
Currently, many patients and caregivers struggle to inject medications correctly, which means patients don’t always receive their full dose of medication. This can lead to symptoms worsening and a greater threat of a flare up.
There’s also an online study—available to anyone in the United States—going on right now for those living with an immune system or digestive system condition. You can earn $15 for a 15-minute, online survey. 
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.
has worked in the life insurance special risk marketplace for more than 30 years. He specializes in helping those with pre-existing conditions, such as Crohn’s disease and ulcerative colitis. While he’s not able to represent everyone, he works closely with companies who underwrite conditions such as IBD the most favorably.
Insurance can be confusing—no matter what type you’re dealing with. Some of the most common misconceptions with life insurance protection are that it’s too expensive, too complicated and that conditions such as IBD are not insurable. This is simply not the case.
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