How I Got My Ileostomy: My Crohn's Disease Journey
What Is an Ileostomy?
An ileostomy is a surgical operation in which a piece of the ileum is diverted to an artificial opening in the abdominal wall. This operation can be done for a number of reasons, but the reason that I had to have the operation done was because my colon, or large intestine, was too diseased to keep functioning. However, my story doesn't start here; it starts about two years ago.
Journey to a Diagnosis
The summer I turned 16 was when I started experiencing symptoms: vomiting, diarrhea, abdominal pain and more. My mother thought it might be an allergy, so she took me to see my doctor, who ordered for bloodwork to be done.
Sure enough, I had a wheat allergy. As someone who loves bread, I was horrified. However, I soon found out that wheat is in a lot more than just bread. It's used as a thickener in soups, puddings, and lots of other stuff.
I was mourning the loss of all things wheat—but I was still experiencing symptoms.
Finally, in January, I went to see a pediatric gastroenterologist, which is a doctor that specializes in working with the stomach and only works with kids. He told me that I either had a parasite or something called Crohn's disease. The only way to find out for sure was to have a scope done, which is a procedure where the doctor knocks you out with anesthesia and sticks cameras in you to find out what's going on.
I had the procedure done a couple of weeks later and was diagnosed with Crohn's.
What Is Crohn's Disease?
Crohn's disease is an inflammatory bowl disease. It isi based in the gut and digestive system. Basically, the immune system is on overdrive, and it attacks everything.
Crohn's is a chronic illness because there is technically no cure, so it lasts a lifetime. The medicines that I've been put on suppress the immune system so that it can't cause more inflammation: Humira, Stelara, and Entyvio. I've also been on prednisone, a type of steroid, so that my body would get strong fast. There are also several other things I've been prescribed to help me, like supplements and painkillers.
The Downhill Spiral
After I was diagnosed, my doctor put me on steroids to help strengthen my body, and Humira, to control the Crohn's. Everything was great for a while: I got better, and I was still able to do everything that I did before.
Then, about a year later, I had another scope so that we could check my progress. My doctor wasn't happy with how I was progressing. I was healing—but not as fast as he wanted me to be.
So in August of 2021, he switched me to Stelara. As time went on, I noticed myself getting weaker, and by the time Christmas came around, I could barely make myself do anything. I was put back on steroids, which did seem to help, but I was still very sick.
I had to start doing school at home, and I continued to do so until the end of the school year. In March, my doctor switched me to a new medication: Entyvio.
Why didn't you just go back to Humira, you may ask. Well, because of the type of medicine it is, your body can get antibodies to the medication if it's off of it. So, onto Entyvio I went. But I had a problem: that medication didn't work either. It seemed like everything was just spiraling out of control.
Several Hospital Stays
In May of 2022, I turned 18. I graduated, had my birthday party, and I switched GI doctors.
The first thing he did was test me for antibodies for Humira, since that medicine had worked for me previously. The results would take a couple of weeks to come back.
A couple of weeks later, I went to my annual doctor's appointment. My heart rate was so high that my doctor recommended that I go to the hospital. I went to the ER, and was eventually admitted.
I was put on IV fluids and steroids, and I wasn't allowed to eat for a couple of days so my stomach could rest. Then I went to a liquid diet, then a regular diet. Finally, I was discharged.
A couple of days later, I had my after-hospital checkup, and my heart rate was still too high, so they gave me fluids and were supposed to send me back to the hospital, but they sent me home instead.
The next day, I was back in the ER due to high heart rate. I did the whole hospital stay again, doing the same thing I did the first time, and getting discharged.
A few weeks later, I was very constipated and throwing up everything I ate. I went to the hospital once more, and a CAT scan revealed that I had a bowel obstruction and that my colon was severely diseased. I needed to have surgery.
This is the hospital I stayed at.
Surgery and Recovery
I don't remember much about the surgery. They put me under anesthesia, and when I came to I was in the recovery room. Soon after, I was moved to the ER and a couple of days later I was moved to the surgery level of the hospital.
It was now about recovery, learning about my ileostomy, and dealing with my pain. It was the worst pain I've ever experienced in my life. The first couple of days were pretty much torture, and only morphine could take the pain away. I tried Norco, but the dose was too low and it didn't work.
Soon, I was walking. About a week later, I was moved to a rehab center. I was doing physical and occupational therapy for three hours every day, and after two weeks, I finally went home.
The Aftermath
Now I'm living my best life: recovering, growing, and learning all about my new life. I may not love the situation I've been handed, but I'm learning to live with it.
Honestly, I feel so much better now than before I had my surgery because the diseased part of my body is gone. Everything is looking up now, and I'm excited for what the future will bring.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2022 Abigail Bowen
