• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

My Introduction

SarahBear

Moderator
Location
Charleston,
Hi, everyone! My name is Sarah, I'm 20 years old, and I have Crohn's disease.

I was diagnosed shortly before I turned seventeen, in my junior year of high school. I had been experiencing stomach pains for some time - probably since I was eight or so. My mother believed I faked it to get out of going to school, so I went undiagnosed for quite a while. When I was fifteen or so, the pains got much, much worse and she finally took me to the doctor, who referred me to a gastroenterologist. A few tests were done and nothing was discovered. Then, I began losing weight - I dropped from 98 lbs to 91 lbs, but since I'm so small, it was a huge concern for my doctor. She ordered a pill cam. After that, I had a diagnosis and was put on Prednisone and 6-MP. My symptoms intensified again. Combined with the side effects of the Prednisone, it made for a fairly miserable time (I'm sure you can relate). I stopped going to school and switched to Home Bound (a program in which you meet with your teachers once a week outside of school). After many, many nights of insomnia, I began hallucinating and was taken off the Prednisone more quickly. Because I can't swallow pills (so, so inconvenient to have that problem with a medical condition that requires you to take medications), I switched from the 6-MP to methotrexate, and gave myself an injection once a week. Things were good for a while.

After high school, I took a year off, mostly to prepare for college because I hadn't expected to graduate on time, and thus hadn't even taken the ACT's. I had been very behind, mostly due to my attendance problems. Up until this point, I had been on my father's insurance. Because I was no longer a student, he chose to drop my coverage. At the same time, the gastroenterologist I had been seeing left. My prescription for methotrexate ran out and I couldn't go to the doctor.

I've been going to school this year, and my dad finally put me back on his insurance. I'm currently waiting for an appointment with a doctor - they were supposed to call within two days of receiving new patient forms, but it's been at least a month now. I've called several times and all they say is that they should be calling me the next day. As soon as I get an appointment with them, I should be able to get a referral to a new gastroenterologist.

My symptoms have been fairly bad lately (which is what prompted me to google what foods are easier to digest during a Crohn's flare up, and thus lead me here) and I'm worried that when I do get to a gastroenterologist, I'll be put back on Prednisone. I had a really rough time with it before and I'm especially concerned about keeping my job and attending school - because if I'm not attending school, my dad might drop me from his insurance again.

But anyway, I'm glad to be here and meet you all! I haven't met anyone else with Crohn's disease and it's great to find people you can relate to. :)
 

David

Co-Founder
Staff member
Location
Naples, Florida
Hi there Sarah, and welcome to the forum! I'm really glad you found your way here.

First off, your dad needs to be educated about how serious this disease is. Take him with you to the GI if necessary or do whatever it takes because dropping you from his insurance simply because you're not attending school is absolutely absurd. You need regular care and without insurance in the USA, that's somewhere between very hard and impossible.

With that said, you may want to look into enteral nutrition for now. It might help calm things down a little until you can get in to the GI.

We're here for you anytime :)

*hugs*
 

Angrybird

Moderator
Location
Hertfordshire
Hello Sarah and :welcome: to the forum. I can only agree that perhaps you Dad needs to be more educated about this disease so he can realise the knock on effect of dropping you from his insurance. With regards to initial treatment when you see the GI there is an alternative to the Pred (Budesonide) that can perhaps be tried, this is also a steroid but it is not always seen as being as 'invasive' on the system.

I hope you can get an appt soon so you can resume treatment and start to feel better.

AB
xx
 

David

Co-Founder
Staff member
Location
Naples, Florida
You're very welcome :) Please keep us updated as to how you're doing and ask as many questions as you have. We want to help in any way we can.
 
Top