My Personal Story

Crohn's Disease Forum

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Joined
Mar 16, 2013
Messages
29
Location
Colorado
Hey guys! The name's Cameron, I'm glad to be here, I just found the forum and signed up!

As I said my name is Cameron I am 19 years old, from Tucson, Arizona (born and raised). I was diagnosed with Crohn's Disease in around February of 2011. I told my mother of my problems I was having (slight stomach pain after every meal, extreme fatigue, no appetite) but she said I am probably just sick or something and kinda brushed it off. The next week I spoke to her about it again but told her that, "something just doesn't feel right". (especially after losing something like 30lbs in 3 weeks) I have no idea as to why this particular statement made her jump into action, but it did. She made an appointment with my doctor who then sent me to a G.I specialist (Dr. Fayez Ghishan). He told me that based on my simptoms he thinks I have "Crohn's Disease" my heart pretty much sank because up until that day I had been one of the healthiest kids I know! Also, I remember snooping around the internet searching my simptoms and Crohn's came up a couple times (when reading about Crohn's you think such disorders could only exist in nightmares from the symptom list).
Long story short, got some blood tests....Inconclusive. Got a CAT Scan....Inconclusive. Finally got a Colonoscopy which gave me a proper diagnosis.
I now take Remicade every 6 weeks and Pentasa 500mg 3x daily, along with Methotrexate .5 mL weekly. The Remicade has worked WONDERS for me and I have been pretty much flare free for a year or possibly a little more.

I am happy to say that I feel very blessed to have such great doctors to look after me, along with little to no dietary restrictions. (I started a food journal and used it for a number of weeks but to this day can't seem to find any trigger foods) I am able to eat what I want when I want, with no problems.
The reason I am here though is because I am currently in the middle of a flare up and decided that I need to expand my support base. Anywho, I hope I found the right place!

Thanks,
Cameron
 
Hi Cameron!
Welcome!
Sorry to hear you're in a flare. I'm in a minor one myself. I'll take my forth Remicade infusion on Wednesday, then see what my doctor wants to do after that. I'm hoping to be back in remission soon. Like you, I don't have any dietary restrictions. Only when I'm in a major flare-up, but I don't want anything to eat then anyway.
I've been blessed to go for years in between flare-ups. This is my first since 2006.
Like you, I didn't know what Crohn's was until I was diagnosed in 1999. You're right about the symptoms sounding like something out of a nightmare. And lucky me, I've had most of them at some point in time.
I agree that Remicade is a wonder drug. This is the forth different time I've taken it over the years and always had good results with it. Just hoping I do this time.
I wish you well and encourage you to look around this forum. There's a lot of helpful information here. Feel free to contact me if I can be of any help.

Current medications:
Imuran 150 mg
Lialda 2.4gm
Levbid .375 mg twice a day
Multivitamin
 
Hello Cameron and welcome to the forum :)

I am sorry to hear that the tum is acting up on you again :( Are up to date tests now being done to check on what is going on inside? What is your GI thinking of doing treatment wise for you? One thing I am curious about is why you are on the Pentesa still considering you are on much stronger meds for your crohn's and this is most probably pretty much ineffective as a treatment.

There is a lot of helpful info and support here so do have a good look around.

AB
xx
 
Ya it's not too bad, just a mild flare up, but still of course no fun. To be honest Angrybird I have no idea why I'm still on Pentasa. I usually don't ask too many questions I just take what he prescribes me ha-ha. And yes I am up to date with my tests I get blood work done every 6 weeks! =D my last labs were great, CRP down to 1 or 2!
 
Hi Cameron:

Welcome. Yes, indeed, you have definitely come to the right place if you are interested in hearing about how others around the world cope with Crohns. My daughter is 20 and she had Remicade infusions for three years, but had to stop in October 2012 because it lost all of its effectiveness, which is not uncommon after your body builds up immunities against it. She generally only takes vitamins now, even though she has a severe case and takes prednisone if her flare gets really bad. So my question for you is have you had you Vitamin B12, iron and Vitamin D levels tested? You need to insist that they test all of your vitamin levels the next time you had your blood drawn. They generally will not run those tests unless you ask. Once you know your vitamin levels, you are welcome to share them with us, if you'd like. The key vitamin is Vitamin D. You should consider taking Vitamin D3 along with cofactors (Folic acid, magnesium & zinc) everyday. These vitamins are the key to sustained, long-term remission. Checkout this string for more info: http://www.crohnsforum.com/showthread.php?p=616955#post616955

Do your research. It's your health, therefore, you owe it to yourself to find out how various medications and/or vitamins can help you lead a healthy life.

Wishing you all the best!

Lisa
 
Hey Lisa! Just had an appointment with my GI today and asked to get my vitamin levels checked! So I will be doing that this week and I will report back!

Thanks!
Cameron
 
Hey Lisa! Just had an appointment with my GI today and asked to get my vitamin levels checked! So I will be doing that this week and I will report back!

Thanks!
Cameron

That's great, Cameron! Once you know what your levels are, you will be able to figure out what supplements you need. :smile:
 
Alright, I don't know the exact numbers, but my vitamin B-12 was HIGH. Vitamin D3 was LOW and Folic Acid was NORMAL.

Hi Cameron:

My daughter's GI would just tell us, in general terms, that her levels were high or low, too, but you need to know the actual numbers. Ask them for your levels or, better yet, ask them to give you a copy of the lab report. They are your lab results so if you specifically ask for them, they have to give them to you. Knowing that your Vitamin D level is low, has your GI already prescribed some Vitamin D supplements?

Once you know your exact levels, you will be able to determine what dosage you should take of each of the supplements.

Lisa
 

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