My name is a Jonz, a 40 year old college student in Sociology in the Hawaiian Islands. I have been diagnosed with Ulceritis Colitis by Dr. Grant Chen here in Honolulu, Hawaii who was from China but moved here to Hawaii to practice medicine. Ulceritis Colitis was actually something he learned in Shanghai so he was able to easily see the symptoms and know how to monitor it easier than my veteran general practitioner. What I am about to say that is quite unique about this situation is that UC is not only a major condition in my life, but a blessing in disguise which I will explain further. With UC, I entered a new chapter in my life and am ready to share that chapter.
My Ulcerative Colitis Story:
As I had mentioned earlier, my illness was properly diagnosed in 2008 and still affecting me to this day. I had mentioned it was a blessing because it validated almost every singular health issue I had encountered since age 5 when I was seeing doctors repeatedly.
At age 7, I lost a significant amount of weight and was often sick at times. I was in the emergency room a few times a month because of severe abdominal pains, boils in my skin, cuts and bruises that didn’t heal properly and then bad burning sensations in my hands and feet. Of course, this was the late seventies and there wasn’t much information. At first, they removed my tonsils saying that was the cause but my health problems continued, even escalated after having them removed in 1977.
When I moved to Hawaii in 1981, I went out the beach like any normal ten year old would, and one day I came home with a severe rash. Then each time I went out into the hot sun, my arms legs back face and body was covered in a rash hat would dry up, blister, and even bleed like tiny lesions. We did research and it took a doctor from Korea who diagnosed me with having an allergy to ultra-violet light having me excluded from any outside activities. This seemed to do the trick provided I cover up every time I went out in the sun which included wearing a jacket or long sleeve shirt.
Other problems began to emerge in the late 80s when I became severely depressed. I would learn years later that depression is another symptom which included self-mutilation where one night, I bled so much I passed out only to wake up with two permanent scars on my right arm. I was lucky. Then the depression lead me to a road of alcohol and drugs that seemed to subside the internal bleeding in the bowels, the upset stomach, and depression. Of course, alcohol and drug abuse had its own set of problems.
In 2004, I decided to give up the booze and drugs and go sober. This is when major health situations came to arise. At first, I thought it was after affects of sobriety and maybe just some part of a withdraw symptoms. I had the returning burning sensations in my hands, wrists, arms, elbows, shoulders, neck, legs, ankles and feet. The depression returned, the bleeding in the stool, and the upset stomach. I was seeing another doctor before returning to my regular doctor. The temporary doctor just said it was major withdrawal symptoms and that it would eventually go away soon. That didn’t work. The blood in my stool followed by sharp pains and gas were enough for me to change doctors fearing it may be colon cancer. Luckily it was not. But they did find a couple of pre-cancer cells in the colon during a colonoscopy. I received treatment from a then intern resident doctor named Dr. Grant Chen from China who were here to practice medicine. He figured what I had was UC based on his experience but had to do some elimination tests such as a liver test, food allergies, wheat gluten, rheumatoid and Lupus, Anemia, Crohn’s Disease and cancer. I didn’t have these illnesses and then he was able to confirm it was indeed UC.
This was in 2008 and my life changed for the better! He was able to tell me that all of my childhood illnesses into adulthood were all related to one primary source. It was not all in my mind as many had suggested or just extreme cases of withdrawals. Because of this illness, I was able to get financial funding for college from the DVR Dept. of Vocational Rehabilitation, got rental assistance from Section 8. and receive free medical and drug coverage from Quest.
Through my education, I was able to better cope with my flareups and symptoms by using school as my security. They have a program called ACCESS that helps and supports people with disabilities to help them find ways to make my learning experience a good transition. I used art, poetry, writing, and awareness to get the word out about UC and the people who have it.
It is not easy as the symptoms just seem to come at random and really bring me down. I have used different methods to deal with it from using my school education, talents, art, writing, and a sense of humor. Yes, as bad as it gets, a good sense of humor really does help. The laughter helps relieve your stress hormones, loosens the muscles that tighten around your stomach, and it makes the situation less uncomfortable. Instead of being ashamed of it, I am quite candid and have earned a lot of respect.
Last fall, my final grade was to create a installation piece and a good part of the grade in art class was to create a piece and describe it. Consciously, I had constructed an erupting volcano (Pompeii) with white ash covered victims fleeing and dying on the ground. But it wasn’t until I was in class that I saw my volcano resembled my colon with blood erupting and the white victims were my white blood cells fleeing. I had to speak about my illness which my art professor knew about but was surprised I mentioned it. He then gave me an A for the class and the grade using my idea as an example of using negative things in life to enhance art. I joked at the end of the demonstration that “I have to take my colon now.” which got a lot of good laughs.
Then last night, while working at a club, I took a break and had to go somewhere less crazy because of the cramping pain and gas when I ran into a couple of friends who were asking if I was ok. I kind of was like shaky and sweaty so I just told them “it’s just gas.” simple, to the point and they left me alone. That helped settle it. Pepto does help. Asacol keeps the bleeding to be less frequent. And the Preds I take when it is very unbearable like the blood being constant or my arthritic pain is so intense I feel like I have a cut on my feet or I’m so tired after doing simple things like bathing, homework, etc.
I also am walking every morning for 12 blocks which helped me lose weight. I try to balance out my days by doing the same type of activity daily. If I disrupt a routine, then my flareups act up. And finally, I am honest with everyone about what I have. This way, if I have to back out of a commitment or cannot do as much, they at least know it’s health related.
All in all, this has been a blessing for me because, it makes everything that I do more compelling, goals reached are more important, and most of all, know that we are all not alone in this illness called Ulcerative Colitis which I am not a victim or a sufferer, and I am not living with UC as it is living with me and that I am a recipient of UC.
Asacol (400 mg) which is a Melasamine which is more like Tylenol for the colon inflammation.
Prednisone (20 mg) a steroid injection as well as in pill forms.
These seem to work consistently and takes about 24 hours or so before it takes effect.