Newbie

[misfit_kt]

Hello,
my name is Katie and I am 24 years old. I was diagnosed with Crohn's Disease at age 18. When I was 13 I started getting terrible cramps that parents thought were growing pains. It wasn't until one Sunday after noon when I had such bad cramps that I was crying hysterically while curled up in the fetal position that I was rushed to the hospital. The doctors questioned me for at least an hour trying to get me to admit that I was pregnant... which I was not. They sent me home with no answers to my pain.

In summer 2005, I started to develop a lump on my bottom. It was so painful, it couldn't walk or even sit. My mom took me to the doctors and they laced it saying it was just an infection or a cyst. I was sent to the surgeon who thank god suspected that it was a fistula. He sent me to a colon/rectal surgeon who completed a colonoscopy and determined that I had Crohn's. About a year later I needed to have 3 seton's to keep the fistula's draining continuously. I still have flair up's and my doctors do not like how my medications are working.... so we are debating remicade. Until then I am on Asacol and folic acid..... only problem is remembering to take them :frown:

 

[Keona]

wow Katie... if they were so convinced that you were pregnant, why didnt they just do a pregnancy test on you?? Bizarre... What a terrible thing to do to a 13 year old... wow...
Sorry you are having problems with fistulas. They sound painful. Someone on here just recently posted something about having several seton's put in place.
I am glad you are able to work with your doctor on a new medication .... is your medication that you are prescribed not working now because you keep forgetting or do you keep forgetting because it isnt really working?..lol how long have you been on it for?

Take care and welcome to the forum... glad you found it!

 

[sparkles]

Wow you've been through a lot, and it's not fair that they tried to get you to admit you were pregnant at 13!
Anyway, I hope everythings ok in the future and you enjoy this forum

 

[dreamintwilight]

Hi Katie!

Thanks for sharing your story with us. Sounds like it was really tough for you at the beginning!

I think Remicade would be a great option for you since you have a history of fistulas. The biologics specifically target fistulas, so hopefully they clear up!

When id your doc say you might start Remicade?

 

[CDDad]

Hey Misfit,
It's amazing reading stories like yours - where the hospital was no help at all back then. Must be so frustrating.
Don't debate the remicade too long - You might get some good results when you start. Humira is more convienent if your doc does not care which you take. But if you forget to take your pills, you might forget to do the shot every 2 weeks!

Good luck to you.

 

[xJillx]

Hi Katie and welcome! I can forget my meds easily, too. To help remember, at night I divvy out the next day's meds in a smaller pill bottle. Therefore, at night, the bottle better be empty, otherwise I obviously forgot a dose. I like this approach better than a huge weekly pill box, so I don't feel like my grandma.

Granted, you won't have to worry about missed doses with Remicade. Remicade has done miracles for those with fistulas. Have you stopped in the Remicade Club sub-forum? Lots of good information in there. I look forward to seeing you around!

 

[misfit_kt]

Wow, thanks everyone for the support! It was rough being interrogated in the hospital at age 13.... I don't know why they didn't just give me a test and get it over with. They really thought I was faking it or something. They thought it was my appendix..but when all the tests came back clear they really, really thought I was faking!

Although I have been on medication for Crohn's for the past 6 years... I am still not use to taking medication. I hardly ever took medication at all before that. When I lived at home with my parents, my mom would be on me to take my medications and I hardly missed a dose and the medications still didn't work...... I will be looking through the remicade forums, thanks for mentioning it. I really like to do my research before making a big decision!

 

[ameslouise]

Hi Katie and welcome!

I always use a days-of-the-week container to help remember to take my meds/vitamins. Plus it's easier than doling it out each day when you have multiple things to take.

Good luck with the Remicade. I hope it works for you!

- Amy

 

[dreamintwilight]

I agree with Amy. It sucks to have a huge weekly supplement container, but I find that it does help me stay on track with taking them. I also try to take them with a meal. That helps me remember to take them too because you got to eat!