My Story

[chatteegrl]

My name is Lea. I am 25 years old. I was diagnosed with Crohn in February of this year. I can still remember the phone call confirming the results. I broke down. I really did not understand the disease at that time. Tried not to read about it until I knew I would be dealing with it. But with all that said my parents, husband and friends have been GREAT! They don't know exactly what I am going through but they are understand and that is the best thing I can ask for.

I know I have a long road ahead but I am ready for the journey!

 

[seebee]

Welcome to the forum. I was also diagnosed this yr at 24. Having support from family and friends is really important. I'm glad that you have that.

 

[tots]

You are very lucky to be surrounded by so much support!!

Good luck I hope you feel much better soon


Lauren

 

[David]

Hi Lea and welcome to the community

I can imagine how hard it was to get that phone call

How are you feeling these days? What treatments are you on?

All my best to you!

 

[chatteegrl]

David thank you for askkng how I feel. Somedays are great. Other days not so good. My crohns is a mild case. I have not been in the hospital. And guess u could say still learning what a flare up really is. It seems everyone is different. Also trying to figure out what is going to work for me and help me. That seems to be a challenge. A lot of stuff to read and lot of things to try.

 

[Thermo]

It would be great if we could download another person's knowledge on something, I have spent hundreds of hours researching this disease and I'm still not close to knowing anything. The only point I am at is when I call my doctor and ask for something they give me whatever I want and tell their nurses to hurry lol, maybe thats just because I pay her so much money. One thing that has kept me going over the years is saying to myself it could be worse. I personally think diabetes is worse, heart failure, kidney failure, cancer are much worse. Crohns is more like a struggle that wears you down and makes you dull to the world over the years, just make sure you stop and smell the flowers and enjoy lifes' little moments otherwise it can overwhelm you. Keep us updated through the years and don't let the mild case fool you into thinking you don't need a good plan now, it can change in the blink of an eye.

 

[chatteegrl]

I have to agree with the download. I feel like all I do is research and don't feel like I know a lot. My doctor helps where ever he can. I agree that everyone has something. My husband has type 1 diabetes. So that does help him under my tiredness for no reason. But how did you come up with your game plan?

 

[Thermo]

Well don't do what I did and live in denial for 15 years that doesn't work. The best thing I can suggest is get the majority of your research out of the way when you are feeling healthy over months/years. Learn about the disease progression, procedures/scans and the different tiers of medications and side effects. This way if (Hopefully never) your disease decides to one day go from bad to worse which Crohns often likes to do, you will be aware of all of your options and when a doctor suggests something you will immediately know what he is talking about and can make an informed decision on the spot.

 

[Amanda D]

Hi chatteegirl,

I too was recently diagnosed with Crohn's (June) and am still working out things emotionally as well as physically. I have found the forum to be very helpful and supportive so I'm glad you found it too!
Thermo sounds very knowledgeable and I believe educating ourselves only empowers us to take control of our lives (which seem so out of control otherwise).

Feel better soon!

 

[michaelearnest]

Hello Lea - I was in an airport on a layover in Baltimore Washington International. My doctor paged me to call. He said he had my results but could not discuss them over the phone. That freaked me out and I finally talked him into telling me over the phone. He told me I had Crohns Disease. A few minutes later, I hung up and flew to my next destination. I must have asked about 20 people if they knew what Crohns disease was and none of them did. My point is, back then I had barely any support. Today, you have research, information via the web, great doctors and Forums like this one.
Life gets better, surround yourself with positive people, keep using this forum and things will get better for you. BTW, that was 1988 when I was diagnosed.