Feeling helpless with Ulcerative Colitis
Mon, February 26, 2018 10:30 AM
Reply posted for Bunbun9218.
Hi Megan,
My name is Thailaya. I am 22 years old, diagnosed in 2010 (age 14). The symptoms began after a traumatic event involving an estranged family member. At first, I thought my loose stools were due to the onset of my cycle (I usually had an upset stomach during that time). My cycle came and went and yet the symptoms were still there. I was going to the bathroom at least six times a day, spending minimally 30 min each time.
My father began to think I was sneaking off to talk on the phone so I could talk to boys. I was to embarrassed to tell him exactly what was going on, scared of what was happening and I didn't even know how to describe it. I started keeping a food journal, thinking that it was something I was eating that was causing this. After about a month of this, I began to eat less and less, but it wasn't until I saw blood in my stool that I decided to speak out.
I was rushed to an urgent care facility where they ran a series of test and found absolutely nothing wrong. My father started to think I was doing this for attention (my biological mother is famous for pretending to be sick for this reason). After that visit I stopped eating altogether, I noticed that, I went to the bathroom less if I avoided food. My follow up appointment was the next week and it was there that they recorded I had lost ten pounds. So in roughly 7-10 days.
At that point the doctors and my parents realized that something was actually wrong, I was deficient in most of my vitamins, my had gotten gaunt. I told my parents why I was eating. The doctors ordered more tests, more needles, stool tests,and ordered me to start eating again. My parents had to force feed me every morning, I would be in legitimate tears while eating because I knew what pain would follow. Still the doctors came up empty handed. My symptoms began in February, Valentine's Day to be exact, I did not get an answer until the end of April. I had ulcerative colitis.
I was the only person in my family with it, the only teenager in my highschool seemingly with it. I was embarrassed and in pain for weeks. After treating it with Asacol my symptoms eased up alot, I gained weight back, and I started feeling normal.
In 2013, my healthcare provider stopped carrying that drug and prescribe colozol as a replacement. It was not effective. They also prescribed antibiotics for a sinus infection I had. Well... I was thrust back into a world of pain, pain worse than my original symptoms, they treated me with prednisone and told me it was a flare up. Three months later, still not sign of relief, at that point they ran a stool test and found that I had C.Diff, prescribed more antibiotics. After I week my symptoms started to clear, then they came right back... this time it was a flare up, they gave me more steroids, this time 13 pills a day. I gained weight, mood swings, lost hair, depression, I missed so many days of class (college) that my doctors note was written for the entire semester. I had to withdraw from math Twice. It was terrible. The doctors told me to withdraw from school altogether and to take a break. I stopped taking the steroids a week early and switched to herbal remedies (2014).
Since then I have been fine, minor flares here and there but fine. Until recently. Now I am in pain 24/7. I don't find joy in doing anything because I hurt all the time. I am disconnected from the world around me, overwhelmed, stressed (i am an honors student in college), worried, embarrassed, anxious, nervous. Luckily I am still able to be on my parent's health insurance.
I too, worry about being a burden to those around me, I worry about being a "bad" daughter, friend, girlfriend, student, employee, vice president of an honor society, etc
I wish I had more words of encour
Thailaya BerryJoined Feb 26, 2018
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