“Newly married in 2009 and adjusting to military life as an Army wife, I had no idea what my future held.
My journey began in 2011, when I went in to the emergency room for stomach pain and was later scheduled to have my gallbladder removed. The surgery went as planned; however, as soon as I arrived home and for weeks to follow I became severely ill. I could not keep anything down. At my post op follow up appointment, I expressed my concerns with my surgeon, and he said, ‘You just want to be sick.’ This upset me and made me lose faith in my doctors because the people I believed were there to help me were saying that I wanted this to be happening.
From that point forward, I had a lot of emergency room trips and a hospital admission. The hospital on the military base where we were stationed was very small and did not have the necessary resources to perform the extensive tests needed to diagnose me. I was transferred to two more hospitals where I stayed for a month while the team of doctors tried to determine what was going on with me. I do not remember much due to being on such high doses of pain medication, however I was not allowed to eat and I was fed IV nutrition called Total Parenteral Nutrition (TPN) through my peripherally inserted central catheter (PICC) line. The next thing I remember was waking up with a doctor sitting next to me saying you’re going home today, we have determined that you have Crohn’s Disease. I was very confused and had no idea what had happened, but I was excited to be going home. After not eating and being bedridden for a month, I was very weak.
Although I was given a diagnosis, I had no idea what Crohn’s Disease was. For the next couple of years, I would learn more and more everyday what my ‘new’ life was all about. I had many more ER visits, flare-ups, hospital admissions, and lots of trial and error with medications. Moving with the military and learning to navigate all the changes with health insurance was extremely hard and it caused me a lot of stress. High stress can lead to more pain and flare-ups for me. Throughout the flare-ups, the first thing doctors prescribed was steroids to get the inflammation under control. While the steroids work quickly for that purpose, they have many side effects. I gained a lot of weight from taking high doses off and on over the course of seven years. I was also told that diet did not affect my disease in any way, so I continued to eat the same food I had been without thinking twice.
During one of the moves, when I moved half way across the country, there was a delay in my treatment. I was waiting on seeing the gastroenterologist, but specialists usually have long wait times for appointments. Since there was a delay I started experiencing some symptoms again. I started getting stomach pain, but it was unlike my typical Crohn’s pain. I went to the ER and was told that I just had an infection in my intestines so I was prescribed antibiotics and sent on my way. The pain kept getting worse and I spiked a fever, so I went back to the ER. When I got back into the exam room, the doctor came in and then a surgeon. I was rushed into emergency surgery for an abdominal abscess. I woke up in ICU with a dressing over my belly button. When it was time to go home, the doctor came in and said they needed to change the dressing. They took off the bandage and pulled out some gauze from the 5 cm hole that was now in my abdomen. They told me I would have to pack this wound multiple times a day until the hole closed. This went on for months and my husband is the one who packed my wound every morning before work and every night when he got home. It hurt like nothing before. He made me laugh while we were packing it and I would bury my head in the pillow and scream. I mean if that isn’t trust, I don’t know what is.
I continued to struggle with my health and my weight. Each time my husband was sent overseas or out of town for training, I would start a weight loss journey. I would stick with it until he got home and then the stress of ‘normal’ life would start back up and I would go into a flare. This was the vicious cycle I lived for years until 2016. In 2016, I went through the worst flare since being diagnosed with Crohn’s. I had to quit my dream job because of this flare up so I could focus solely on my health. This flare led to two hospitalizations. I had to be hospitalized so they could run tests and also for pain management. The second time I was hospitalized was for a deep vein blood clot. I was on blood thinners for months and at the doctor weekly to make sure all my levels were right. Since I had a pretty severe blood clot and receive my treatments through an IV infusion, I was scheduled to have a port a cath placement surgery. The risk of future blood clots was too great to continue receiving my infusions via IV. The port a Cath placement surgery was supposed to take less than an hour. When I woke up, the doctor came in and told me that it had taken about four hours because they were having so much trouble getting it into my veins. Having my port for the past two years has been one of the best decisions I have made in regards to my health because it has made blood work and treatments so much easier. I was also put on extremely high doses of steroids again, which led to more weight gain.
Since I gained a significant amount of weight, I felt very insecure around my family and my husband. They never thought of me any differently and were just thankful that I had a diagnosis and was working on getting better. With my husband being in the military, he has had a couple of deployments as well as being stationed outside of the country and each of these times I had to rely heavily on my family. They helped me get to doctor appointments and procedures
Throughout all of this, I started having problems with my vision. I woke up one morning with a horrible headache and I couldn’t see at all. I went to the ER and was told I had cluster headaches. I was referred to a neurologist and ophthalmologist. When I went to visit these specialists they diagnosed me with idiopathic intracranial hypertension (IIH). This is too much spinal fluid surrounding the brain, which causes pressure on the optic nerve. At this point, I was devastated. Doctors don’t know what causes IIH, but some believe that being overweight can cause it. I was told that if I did not lose weight, I would go blind. I had no will to do anything anymore. It seemed that just when I made it through one obstacle to being healthy, I was facing another. I had given up on life and was just going through the motions. I called my mom after every single doctor appointment sobbing. I called my mom again from one of my doctor appointments because I was upset about my weight and this time it was different. She said, ‘We need to get your weight under control. I will do anything to help you.’ So that day, I began my weight loss journey. I committed to completing a ten-week fitness challenge and she told me she would face time me every day to make sure I stayed on track with my workouts. (She lived 1,300 miles away.)
I lost about 64 pounds in a year. Since losing all of the weight I felt so good about myself. I was learning to love life again and learning that diet did in fact play a huge part in managing my Crohn’s symptoms. I have received judgment from people saying that my weight caused my Crohn’s and I am in denial about my weight. Although this hurts my feelings, I know that this journey has made me who I am today and in some crazy way I am thankful for it. Health is so valuable and can be taken away at any moment. I never take a single day for granted. I will never be the same girl I was before I was diagnosed, but isn’t the point of life to evolve?”
This story was submitted to Love What Matters by Rachel Dinh. Follow her journey on Instagram here. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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