# My Story



## vickylovesims (Feb 8, 2015)

My name is Vicky, I've been living with IBS for 3 years and was diagnosed when I was 13. I've had a lot of intestinal issues prior to finding out about my IBS. When I was about 2 1/2, I had a tumor taken off my coxycc bone. It was a type of tumor that would normally grow outward - the doctor would see it when you were born and just cut the growth off - but mine grew inwardly into my stomach until a doctor found it when I was 2 1/2. My parents were told that I would always have stomach issues as a result (constipation) and that I might have trouble having children in the future.

When I got diagnosed, we knew something was wrong with my stomach because I couldn't eat any food. I would take a bite of food, and less than five minutes later (probably 2-3 at most), I would be running to the bathroom in urgency. I literally could not leave the house and I wasn't eating anything because I didn't want to stimulate my bowels. When I asked my dad if he thought I would go to the bathroom in my sleep, he said no... as it turns out, I ended up going to the bathroom while I was asleep one night. After that, I wore an adult diaper to bed every night.

Where I live, we didn't get enough medical support. The only pediatric gastroenterologist who had any availability told me to drink some gatorade and take over the counter meds. Knowing the Rome Criteria now, she should have given me a colonoscopy and endoscopy because I was losing weight and my family had a history of bowel/colon cancer. I went to urgency care about 2 times to get rehydrated because I was going to the bathroom so much. After no help from anyone in our state, my family and I went to NJ (where we had recently moved to the South from) to get good treatment. I got a colonscopy, endoscopy, and blood tests - it all came back clear, so I was diagnosed with IBS. My symptoms went on for about 2 months, and after that, I had heightened, but not as severe, symptoms for a few months.

My IBS got better during my freshman year, and my sophomore year was the best in terms of my lack of pain. Now, during my junior year, I'm horrible. I miss about one or more days of school per week due to chronic pain so bad that I can't focus on anything else. I take one medication (gabapentin) that's also used for diabetic nerve pain, and it does help. If I need anything stronger, though, I have to take my dicyclomine, which makes me fall asleep. I've lost a lot of my appetite, but since I force myself to eat at least 1,200 calories a day, I've only lost about 15 pounds from it over the past few months.

I really love the school that I go to - it's all girls, and I've made some amazing friends. I do feel pretty awful about missing out on experiences with them, but I'm more worried about what will come in the future. My high school is extremely undestanding, but what about college? Will I even be well enough to go? If I make it through that, what about getting a job? I don't know if I'll ever be able to function. I've heard that IBS gets better as you leave your teen years, so I'm hoping that happens with me. I'm constantly trying new interventions as well, so I hope that one sticks soon.


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## AlanZ (Mar 7, 2015)

Hi Vicky,

Mine didn't really start until I was in my 20's but I will say that over time it has definately gotten better, though I am still far from well. I carefully plan my life around the difficulties that I have and for the most part have been able to make it work.

This affects us all differently so what has worked for me might not work for you. I started off by never scheduling anything before around 11:00 am. I would then get up early to eat and drink things (coffee and eggs for me) that would irritate me and cause me to go to the bathroom repeatedly, but I knew that once that was over I had time to recover and make it to where I needed to be. Some people have difficulty discussing this with others, but I was always upfront and honest about it with those around me. If a person was too insensitive about it, I just had to cut them out of my life, either by degrees or completely. Over the years I worked with nutritionists to improve my diet and eventually started working out & training in martial arts to get a little exorcize, both of which have helped me greatly. It's not the best, but I manage pretty well.

As far as a job goes, believe me I understand your concerns. My solution to that has been to explain the issue to my future boss during my interview, and ask her/him if it will be a problem. That might make it harder to get a job, but once you do to a certain degree it takes the pressure off of your shoulders. They already know about it, and if you have an issue they won't feel deceived or like you ambushed them with it. To date it has never caused me to lose out on a new position, but I have also chosen what kind of jobs I apply for carefully.

As I said, these might not be the answers for you, but there are answers. Try to keep your chin up, figure things out one step at a time, and your life will happen.


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