If you have followed along with me on here for the past few months, you are aware of that my oldest son has Crohn’s disease, an ongoing disorder that is associated with inflammation of the gastrointestinal (GI) tract.

Crohn’s disease is one of several types of inflammatory bowel diseases. While it can affect any area in the entire gastrointestinal (GI) tract, in my son’s case, it was discovered in the end of his small bowel (ileum) and the beginning of his large intestine (colon). Although there is a history of colon health issues in my family (both my paternal grandmother and older sister died of colon cancer), my son’s diagnosis came out of the blue. Of all four of my children, he was the one that was always the healthiest – his entire life, he’s never had as much as a cold, a fever, or even the sniffles.

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DID YOU KNOW: Up to 20% of people with Crohn’s have a blood relative with some form of IBD.

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He was initially admitted to the hospital from the emergency room last August, and remained there for three days. From there, it was a long and frustrating process of multiple office visits, tests, and procedures to determine what was wrong with him. All the while, he was in constant pain, barely eating, constantly fatigued, and rapidly losing weight. As a mom, it tore me apart to see his health deteriorating at such a fast pace. I felt completely helpless – something which I had never felt before as a mom.

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DID YOU KNOW: As an inflammatory bowel disease (IBD), Crohn’s disease symptoms are similar to those of other intestinal disorders, which makes it difficult to diagnose.

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Having three kids with asthma and two with eczema, I’ve had my share of urgent situations. Yet, I always knew what to do or where to turn to get the help that I needed to ease my children’s pain and discomfort because I knew exactly what their condition was. I was well-versed in what worked, and what didn’t. But it was the total opposite in my son’s case. At one point, the pain medications stopped working for him, and his appetite became nearly nonexistent. Nothing I tried to do seemed to help. Every phone call and office visit only resulted in more appointments for more tests; or a referral to (yet another) doctor. There were some office visits where I was asked to start from the beginning recounting his journey up to that point, and the list of prescribed medications and previous doctors he’d seen along the way. I was even faced with problems from our health insurance as to what could and could not be done for him. Through it all, I would strive to stay positive and keep on a brave face for my son, but on the inside I was falling apart and slowly losing hope for any resolve. I cannot count how many nights – and days after I dropped him off to campus – that I would cry uncontrollably.

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Crohn’s Disease Mom

When it was finally determined that he has Crohn’s disease and Celiac disease, it was a huge relief for me – at least then I knew exactly what the problem was. However, little did I know that we still had a very long way to go to get his health back on track.

The final team of specialists put my son on an aggressive treatment plan that involved surgery to remove the damaged portion of his colon and ileum, and a separate procedure involving his kidney that would require another five days in the hospital; plus a host of different infusions that he would receive in an infusion center. The surgery took nearly four hours, and I was on pins and needles the entire time. While I do not share much of my personal life on Instagram, I felt an urgency to solicit prayers for him that day.

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…requesting #PrayersUp for my family today. 🙏💜

A photo posted by Makeba Giles (@melisasource) on Feb 4, 2016 at 4:39am PST

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When the surgeons came to me to let me know it was over, they looked at me in astonishment. One of the surgeons told me she had no idea ‘how critical’ my son was until she cut him open. As she continued to stare at me nearly in tears, her exact words to me were, “It is a miracle that he is still here, or has not lost any lower body function.” It was with those words that I broke down myself. I am profoundly grateful that his life was saved and my prayers were answered.

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Crohn’s Disease Mom

The first few nights home from the hospital were a challenge for both of us. He had injections that had to be done every 24 hours, plus another long list of medications to take at various times day and night to reduce infection and help his healing. There were a host of prescribed supplements added to his diet. All of this was in addition to caring for his staples and stitches from both procedures, plus keeping track of the numerous follow-up appointments and infusions. His pre-and post-operation schedule was overwhelming and draining, but I didn’t mind because I felt my hope for him returning with each passing day.

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Crohn’s Disease Mom

I had five doctors, two regular infusions each week, and a host of medications to manage. I’d mentioned before in an earlier post about how the Medisafe app was extremely beneficial in helping me keep everything together when my son was released from the hospital the first time. I can honestly say that with the second chapter of my son’s journey being so severe, I honestly don’t know what I would have done without the app.

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As the months went by after my son’s surgery, his health slowly began to improve. He started to gain weight, and his appetite increased immensely. He also became more active, although still not 100 percent. The best part is that while he initially struggled emotionally with his diagnosis, his attitude turned around, and he began to take it all in stride. Through all of the doctor’s appointments and 2-to-4 hour-long infusions and hospitalizations, he stayed on course with his college classes. In fact, he not only met his goals for his first year of college, he exceeded them – making the University’s Dean’s list for both semesters. I am so very proud of him!

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Crohn’s Disease Mom

Nine months has passed since the start of my journey as a Crohn’s disease mom, and I am happy to report that my son’s health has improved. For now, he is requiring only one infusion every eight weeks, and some of the medications have been decreased, too. After going down to nearly 110lbs, he is now 143lbs. and his weight is still climbing.

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Crohn’s Disease Mom

While he still experiences pain, it’s now a rare occurrence verses the constant one that it was before, and the severity has significantly decreased. While he is still not totally at 100 percent, he is getting stronger every day. With his health in a better place, he’s decided to spend summer vacation mentoring high school students through one of our neighborhood programs.

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Crohn’s Disease Mom

This new chapter of my life as a Crohn’s disease mom is one that was unexpected. However, it is one that has taught me so much about myself and my son, and our relationship. Although he thanks me every day for standing by his side through all of this, I will be forever grateful for him allowing me the opportunity to do so. In my 22-plus years of being a mom, I had never fought harder with health insurance companies, doctors, and hospital staff than I did for my son’s sake – and I would do it all over again a million times.

My family’s health means the absolute world to me. As Crohn’s disease has no cure and is something that my son will have for the rest of his life, it is my earnest prayer that he will continue to have me stand by his side to care for, love, and support him in his health journey – and that I am around to do so.

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Crohn’s disease can occur in people of all age groups, but it’s more often diagnosed in people between the ages of 15 and 35. If you are someone you love has Crohn’s or any other form of IBD, consult your doctor for more information and resources to help.

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Crohn’s disease mom

I am proud to be in partnership with Medisafe to share my experience as an IBD / Crohn’s disease mom. Medisafe  helps moms manage their family’s health including medications, doctor’s information, appointments, and much more. Visit www.medisafe.com to learn more, or download the Medisafe app for free on Apple and Google Play. You can also connect with Medisafe on Facebook and Twitter.

Crohn’s Disease Mom