Food for thought: What it’s like to get all your nutrition through an IV with IBD

This week–a guest post from an IBD advocate who continually inspires me. Meet Sonya Goins. twibbon-profileShe 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.” 26677835_10155748847937819_1006971807936260031_oHowever, 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. 35682318_10156164555637819_6627378019424010240_n

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.”

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