In January of 2024, I experienced a medical emergency that many people with Crohn’s disease dread thinking about.
After being taken to the hospital by ambulance and extensive diagnostic testing, it was confirmed that I had had a bowel perforation, otherwise known as a hole, in my large intestine.
Since Crohn’s is an autoimmune disease that can weaken areas of the intestine, and this kind of thing is always a possibility when dealing with the disease, many tend to worry about this happening. However, at only 38 years old, I always thought I was still too young for something like this to happen. Obviously, I was very wrong.
Within 30 minutes of my diagnosis, I was prepped and ready for surgery. Since this was an emergency and not a planned treatment, my experience resulted in an open abdominal surgery that removed at least 5 inches of my large intestine. After cleaning up waste to reduce toxicity and infection, my surgeon then awarded me a temporary colostomy. This was a way to connect my colon to the surface of my belly to provide an alternate route for waste to leave the body while my large intestine healed.
I must admit that the first few days with my colostomy were extremely overwhelming. I was in the hospital for 6 days and had to learn how to take care of a colostomy. I was dealing with a 6-inch incision with over 20 staples, all while dealing with the emotions that come with the abruptness of an emergency medical crisis. I had to accept that I would be off work for at least 6 weeks – or longer – without warning, and was looking at months of recovery.
I had gone from being extremely active to confined to a hospital bed and, even upon discharge, could not lift anything over a few pounds. For quite some time, I was completely dependent on those around me, and it honestly felt like a rug had been pulled out from under my feet.
However, after I started to get used to living with a colostomy, I found that I learned quite a few things about myself and other Crohn’s disease warriors like me.
We are strong. My goodness, we are strong. Even though Crohn’s disease can be managed in a variety of ways, it also can be a very unpredictable disease. You could be doing all the right things regarding your care and still experience bumps in the road like this one. Living with Crohn’s, we must juggle a lot in our daily lives. From work (if we’re able), family, and traditional life stressors to emotional strength, health challenge management, and many other things, we must be able to handle a lot and handle it well.
There are some great social media groups out there. Even though I first had a home health nurse visiting me twice per week, I learned more tips, tricks, and strategies for living with a colostomy from a Facebook group of extremely helpful warriors dealing with a lot of the same things as I was. The Facebook group that I found helped answer questions related to colostomy supplies, changing the colostomy bag, products to use, reassurance, support, and countless other things.
No matter how important your job or position is, it cannot come before your health. For years, I’ve been an advocate for motivating people with Crohn’s disease to find an employer that is supportive of people who have medical problems. Through this experience, I also learned how detrimental becoming a workaholic can be. I had to learn that no matter how important I felt my job or position was, a work-life-health balance was much more important.
Whether you personally have challenges related to finding this balance yourself or you work for an employer who may not be as understanding as you’d like, it’s always important to stay focused on finding that balance and making sure that you’re taking enough time to care for yourself.
Support is a good thing. Even if you pride yourself on being able to handle a lot of health challenges on your own, there is nothing wrong with having family, friends, work acquaintances, or online support groups to help get you through tough times. I honestly don’t know how I would have gotten through all the stages of having a temporary colostomy (and after) without all the support I received.
There are many steps to healing. In a situation such as this one, there were multiple steps that I had to follow and accomplish before we could move on to the next stage. For me, this involved getting through the initial bowel resection and temporary colostomy surgery, healing from that initial surgery at home, going through a colonoscopy to check everything and ensure healing was happening, going through a colostomy reversal surgery, healing from that second surgery at home, and then looking forward to long-term maintenance after this experience.
Personally, these steps have taken me over 6 months to work through, and I have heard from others that their experience has been anywhere from 6 months to 1-2 years or longer. Healing of this magnitude takes time, focus, and patience.
Mental health is so important. Through all these experiences, there were days when anger and frustration would take over. I developed depression over not being able to be very active. I developed anxiety and PTSD over certain symptoms because I was constantly worried that something would go wrong again. I developed mood swings over my situation because it was hard to process and accept my medical situation as it was. However, through it all, keeping my mental health in check and reaching out to family, friends, and a therapist when needed were so important.
Now that I am on what feels like the tail end of this journey, I feel like it has been easier to deal with the steps and stages of the experience. I have to admit that when this all started, it was very hard to think positively about my situation. Even though I had some bad days, I allowed myself to lean into all the feelings I was having and gave myself grace in knowing that the ups and downs were all just a part of the process.
Eventually, more of those bad days turned into better ones, and I found myself starting to feel much more optimistic about my situation. Please know that if you ever face a health crisis like this one, there will be a light at the end of the tunnel. You might just be stuck staring at some of the darkness for a while before you can see it.
Photo Credit: Stone/Getty Images
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