This is my life with Crohns


Many of you know about my health issues and many of you don't. I don't keep that part of me private as I want to share my daily struggles with you all. Not for the attention, but just so you know that your life may but tough but not tough as mines. So live your life to the fullest because I can't (well, I can with lots of setbacks). Well, here's a little preview of it.

In 2010, I was diagnosed with Crohn's Disease, which is an inflammatory disease of the digestive system. Crohn's causes the lining of ones intestines to become inflamed. The lining of ones mouth, esophagus or stomach may also be affected by the disease.

Since then, I've been able to successfully manage this "invisible illness" until about a year ago. At one point, I was taking up to 16 oral medications daily until I started getting IV infusion about 5yrs ago. I had about 36 IV infusion treatments until I hit a brick wall. I was no longer in control of this invisible illness. It now has the upper hand.

On 10/9/16 (exactly a year ago), the pain was so excruciating that I went to the ER. They ran some test and sent me home. The next day, I received a call from my treating physician telling me I need to be admitted as soon as possible. I had a perforated tear in my colon that needed to be monitored and treated with antibiotics. I was in the hospital for a week.


On 10/31/17, I started feeling some ankle and knee pain. Thought it was just from walking around trick-or-treating all night. Went to bed feeling OK then woke up a few hours later to use the bathroom only to find that I was unable to move both my legs. Both legs were swollen from the knees down to my toes. Woke Justin up so he could carry me to the bathroom then to the ER. In the ER, I got my left knee tapped and about an ounce of fluid was removed to check to see if it was infectious. While we waited for the results, I was admitted and was unable to use my legs for about 3 days. It was like starting all over again. I needed physical therapy to teach me how to get outta bed and put weight on my legs. I was admitted for a week and was told that because of my condition and the fact that I've been on antibiotics, infection could have spread.


I was out of work from October to the end of the year.

....fast forward to 2017....

On 8/14/17, I was celebrating the retirement of a coworker when I was hit with another round of excruciating pain. This time the pain felt like it was in my bladder (like having UTI), like I had to pee so bad but i couldn't. Took some pain medication and figured that would take care of it. Well, the pain meds didn't do anything for the pain. At about 4am, I woke Justin up to take me to the ER. When I got there, they ran a pelvic exam, CT scan, ultrasound and lots of blood work. Got admitted again because I had an abscess pocket that needed to be treated. I had a drainage tube placement inserted for about a week and a half. It needed to be flushed and drained 3x a day. It was so depressing to have that bag hanging from under my tummy but it was necessary to help remove the abscess fluid. Doctors ran some test to see if the current treatment was still effective and results were that my body was no longer responding to it. New treatment was recommended. Again, I was admitted for a week.



On 9/10/17, I started having abdominal cramps (while I wait patiently for my treating physician to prescribe a new treatment). It must've been something I ate so I tried to throw up and force myself to use the bathroom but nothing helped. The next day, I call the doctor's office asking for medication or something to help ease the pain. I was told because of my history, just go to the ER, so I did. Well, it was a good call by my doctor as I had a bowel obstruction (meaning I couldn't poop). Had a nasogastric intubation (NG tube) inserted. This is a medical process involving the insertion of a plastic tube through the nose, past the throat, and down into the stomach. I was told it would only be in for about 24-48 hours. Well, that was the most uncomfortable 2 days. I couldn't eat comfortably, every time I used the bathroom I had to call the nurse to disconnect me then had to carry the canister with me to the bathroom and I had to sleep upright. Since this was my 4th admission in just shy of a year, my surgeon suggested that the next time would result into surgery. Surgery would be removing the damaged intestines and resectioning. I'm hoping this new treatment works and I can avoid surgery altogether.



I'm still trying to knock down my hospital bills from last year and then on top of that I have this years bills and on top of that I have my new +$10K treatment. I've been out of work since August trying to maintain my health until I can get my new treatment and making up for loss time with Legend.







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Crys Castillo 
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Kaneohe, HI
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