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A Parent's Perspective

Updated: Feb 28, 2021

The worst summer of my life began innocently enough when my daughter Hannah asked if I could make a GI appointment for her in our hometown when she returned from college for the summer. She had been having some stomach issues and had long had what we thought was a "sensitive stomach", so I made the appointment and didn't give it much more thought. After a relatively normal upper endoscopy, she was scheduled for a CT scan a few weeks later, although she told me she didn't think she should wait that long. Not long after, following an episode of intense abdominal cramping that largely subsided by the time we got to the ER, she was admitted to our local hospital and, after a few days of testing, diagnosed with Crohn's disease. I had heard of Crohn's, and my only knowledge of it was that it was really, really, something you never wanted your child to have. With all due respect to Dr. Burrill Crohn -- the American gastroenterologist who helped identify it in 1932 – even the name of this chronic illness paired with the word “disease” revolted me and seemed to have no correlation to my beautiful, vibrant daughter. She was put on a high dose of steroids and given mounds of other pills to take home. Within days, the pain returned and it was back to the ER, where this time it did not subside. Hannah was readmitted, administered Solu-Medrol (IV steroids), and eventually felt better. Before she left, an X-ray was taken and it was determined she was okay to return home.

However, as we would find out soon afterward, Hannah was not okay. The next ER trip was made to a different hospital in our city in hopes of better expertise. This time the radiologist determined that her insides were a "mess" and that her small intestine had developed an abscess, a complication of Crohn's that was something new to me. I had never associated abscesses with intestines, just an exterior wound or tooth. The doctors proposed percutaneous drainage and once again Hannah was admitted as an inpatient. They thought she was good to go after the procedure, and once again she was not. I think at that point I started losing count of the number of ER visits and hospitalizations we were to experience. One time I calculated that she spent 2/3 of that summer hospitalized and underwent more than a dozen CT scans. In the midst of all these visits, she was prescribed and started self-injecting Humira, but the hospitalizations kept coming. Finally in late July, Hannah experienced the most excrutiating pain yet. We later found out that she was suffering from a bowel obstruction and that it had actually perforated. This quick progression of complications made us feel like we were in the middle of our own horror movie. For those of you who don't know, the screenwriter of the 1979 movie Alien -- yes, the one where the creature bursts from the astronaut's body -- was inspired by his own experience with Crohn's disease. I am glad that I didn't know at the time and only later found out how truly a life-threatening situation a perforation can be. Hannah was scheduled for surgery. As I sat alone with her in a dark hospital room that night, I perhaps reached my lowest point since her diagnosis when she turned to me, writhing in pain and with her eyes wide in panic and asked, "Am I dying?"

Hannah's surgery seemed to go well and her surgeon even said he didn't think she had Crohn's at all -- that the inflammation had been caused by a congenital defect now surgically removed. However, her recovery was slow and our joy was short-lived when she returned to the ER within a week or two of coming home -- this time for two CT scans during the same visit, after which she was sent home because physicians couldn't determine the cause of pain and by then she was feeling somewhat better. Another week or two went by and then, only three weeks after her first surgery and days before she was scheduled to return to college, Hannah was admitted again for another emergency surgery after suffering another intestinal blockage. Within a day or two after surgery, I had the surreal experience of being banished from my daughter’s hospital room after an emergency code was called and a dozen medical staffers converged to figure out why her heart rate kept continuing to struggle. She was moved to an IMCU (a step in between the regular ward and the ICU) so that she could be more closely monitored with other heart patients. Her colorectal surgeon – the only one in our city – finally decided to administer IV steroids, after which she improved. As it turns out, the high dose of prednisone Hannah had been on since diagnosis had compromised the ability of her adrenal glands to handle the trauma of emergency surgery.

Fast-forward to October. Hannah, determined to return to school in the fall, had received permission for a late start after working from home for a few weeks and appeared to be managing with no more emergencies. That said, once on campus she had started experiencing recurrent UTI's and had been put on an antibiotic, but we weren't prepared for what came next. One day as she was getting dressed, her midline surgical scar -- still new and not totally healed -- came open. Although she was in no pain, the hospital elected to admit her. After keeping her a few days, the doctors ultimately decided she had a simple bacterial infection of her surgical wound easily remedied by antibotics. I wish they had been right, but after she was released, things got worse and it became clear that the flow from her scar was actually intestinal contents. Apparently, after her surgery, a fistula -- a tunnel between her small bowel and skin -- had formed to relieve pressure from a narrowed and inflamed intestinal passageway. We would find out much later that there was a second one between her bladder and intestine. Once again, my ignorance of all the things that could go so devastatingly wrong in a human body made me feel helpless and small.

I apologize if this has been a tough read; many of you know firsthand that Crohn's is the toughest of diseases. I have actually held back on some of the worst aspects of this experience, both physical and mental. Months after developing the external fistula and being fitted with an ostomy bag, Hannah had a resection and fistula takedown surgery at a hospital with an IBD clinic with specialist gastroenterologists and surgeons and has been in remission for almost three years. I'm happy to report she has graduated from college and is pursuing her dream career, but we know this will be a long journey. The two main lessons I hope my story conveys is that, as much as patients try to avoid surgery and despite my daughter’s traumatic experiences with medical professionals trying to do the best they could, sometimes surgery -- particularly early surgery -- can be a powerful tool in the management of Crohn's when nothing else will help. That said, it is crucial to find a GI and/or surgeon who specializes in IBD, particularly if one has severe disease. Many GI's have only a handful of patients with Crohn's and don't have the experience of IBD specialists who deal exclusively with IBD patients. In hindsight, we know that Hannah should have had surgery immediately after her sudden diagnosis given the severe damage to her intestinal tract, thus probably avoiding her subsequent two resections in the space of less than a year and the removal of a cumulative total of three feet of her small bowel.

I also want to encourage you to support Propel a Cure, which is solely focused on research and refuses to accept the current status quo of available treatments. It is the only nonprofit whose main mission is uncovering the cause or causes of Crohn's disease, which we must do to facilitate better and safer therapy, ultimately leading us to a cure. There has to be a better way!

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Hi I'm Nkanyiso from South Africa 32 yrs old and living with this condition for 13yrs now I discovered about my condition when I was diagnosed with HIV and the problem is the madication that I use to take they change it because it suppress my immune system now I'm taking Bonisive Enama and it hard 2 find this side and it expensive and I live in rural area anyone that can help me I will appreciate a lot stomuch it killing me I'm trying my best 2 control it avoid spice food orange even Acid but still if I'm out of madication it hard 2 control it tnx on advice

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