• 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 intro

Hi! omg I'm so excited to have found this forum :dusty:

after missing six weeks of junior high due to severe you-know-what and loss of appetite (I wouldn't even eat popsicles), I was diagnosed in 2012 with U.C.; a couple of years later I was told that it was actually presenting more like Crohns. yippee.
I've had difficulty sticking to my meds (I was finally diagnosed with ADHD last year); I've had prednisone off and on, am currently on Azathioprine and Mesalamine, and get iron infusions to supplement my iron supplements (apparently my window in which to absorb iron is basically shut).
in 2011, during an indescribable, undiagnosed several-month period of not eating, I developed a recto-vaginal fistula; in March, my colonoscopy showed narrowing, though I'm kinda-sorta asymptomatic other than daily nuisances.
my health coverage under my father's work insurance will terminate at the end of January, so I'm really hoping to be able to control this with diet.
 

DJW

Forum Monitor
Hi and welcome. Are you able to get your ouw insurance? Just so the doctor can monitor your progress. Fistulas can be very troublesome. They're also a sign of more aggressive disease.

Sending you my support.
 
Fistulas mean your disease needs serious medical care, more help than any diet can provide. You need to pursue aid programs that help you keep getting your medication such as RemiStart or the [http://www.abbviepaf.org/index.cfm]APAF[/url] for Humira.
 
Last edited:

CrohnsChicago

Super Moderator
Hey there and welcome to the forum!

Keeping up with your medicaitons is hard sometimes even without having ADHD. Do you carry a pill case with you that tells you when to take them? That might be a good way to start. You can also ask your doctor if there are other times you can take it that better fit with your daily schedule. I often find taking afternoon medications to be really hard so for some I set an alarm on my phone that reminded me to take them at a certain time. My doctor allowed me to split my dosages differently on other medications to make sure I was taking them.

Please know that diet MAY help to CALM symptoms, but it won't cure you. The underlying issue will always be there until you attack it properly. To truly get things under control especially during a flare it's important to work out a proper treatment plan with your doctor and it will most likely include medications.

You are young and just entering high school I am guessing (middle school in 2012)? Insurance is a tricky thing when you are a dependent. I'm sure your family will discuss options with your doctor about medical programs you may qualify for once dad's insurance gives out so that you don't have to worry too much about not having the right medications. If you are and adult and insurance gives out you can talk to your doctor directly about insurance options for yourself.

Until then, I'd say it sounds like you are doing a good job in taking the first steps to inform yourself about your own disease and how to manage it. Take a look around the forum, chime in on other threads, make your own threads if you have any other questions. We are here to support you!

As you will see on many threads here, we are our own best advocates when it comes to this disease.

Take care! :)

Crohnschicago

Hi! omg I'm so excited to have found this forum :dusty:

after missing six weeks of junior high due to severe you-know-what and loss of appetite (I wouldn't even eat popsicles), I was diagnosed in 2012 with U.C.; a couple of years later I was told that it was actually presenting more like Crohns. yippee.
I've had difficulty sticking to my meds (I was finally diagnosed with ADHD last year); I've had prednisone off and on, am currently on Azathioprine and Mesalamine, and get iron infusions to supplement my iron supplements (apparently my window in which to absorb iron is basically shut).
in 2011, during an indescribable, undiagnosed several-month period of not eating, I developed a recto-vaginal fistula; in March, my colonoscopy showed narrowing, though I'm kinda-sorta asymptomatic other than daily nuisances.
my health coverage under my father's work insurance will terminate at the end of January, so I'm really hoping to be able to control this with diet.
 
Hi and welcome. Are you able to get your ouw insurance? Just so the doctor can monitor your progress. Fistulas can be very troublesome. They're also a sign of more aggressive disease.

Sending you my support.
well I'm only able to work part-time, so I can't afford much, but I've been researching my options a lot this year. thanks for the support :)

Orchid said:
Fistulas mean your disease needs serious medical care and not some hogwash about eating some kind of special diet. It'll keep growing and growing without medication to control it.
yeah, I'm still taking my meds, and both my G.I. and surgeon say that it's not growing at the moment. I'll just try pretty much anything, at this point :p especially since I've heard of people with much worse IBD than mine at least improving with diet change
 
Hey there and welcome to the forum!

Keeping up with your medicaitons is hard sometimes even without having ADHD. Do you carry a pill case with you that tells you when to take them? That might be a good way to start. You can also ask your doctor if there are other times you can take it that better fit with your daily schedule. I often find taking afternoon medications to be really hard so for some I set an alarm on my phone that reminded me to take them at a certain time. My doctor allowed me to split my dosages differently on other medications to make sure I was taking them.

Please know that diet MAY help to CALM symptoms, but it won't cure you. The underlying issue will always be there until you attack it properly. To truly get things under control especially during a flare it's important to work out a proper treatment plan with your doctor and it will most likely include medications.

You are young and just entering high school I am guessing (middle school in 2012)? Insurance is a tricky thing when you are a dependent. I'm sure your family will discuss options with your doctor about medical programs you may qualify for once dad's insurance gives out so that you don't have to worry too much about not having the right medications. If you are and adult and insurance gives out you can talk to your doctor directly about insurance options for yourself.

Until then, I'd say it sounds like you are doing a good job in taking the first steps to inform yourself about your own disease and how to manage it. Take a look around the forum, chime in on other threads, make your own threads if you have any other questions. We are here to support you!

As you will see on many threads here, we are our own best advocates when it comes to this disease.

Take care! :)

Crohnschicago
oops, I meant to say that I was diagnosed in 2002 :facepalm:

I am doing a lot better with my medication, knowing that it's better to take the "2/3x day" meds all at once rather than spread out.
unfortunately I don't expect there to ever be a permanent cure for IBD, but I'll take any improvement I can get, haha. I actually saw my doctor today and she's staying with my current meds at the moment--thankfully, although a contrast enema a few weeks ago did show some narrowing in my terminal ileum, there isn't any in my large intestine. :dance:

thanks!
 
Top