New and still a little lost with the disease

[amberleanne]

My doctor suggested joining a forum to get support from other people living with the disease as I don't know anyone who has it.

My name is Amber and I am 25 and I was just diagnosed in August 2013.
I got really sick in May, and spent numerous days in the hospital over the next two months. I had 3 CT scans and a colonoscopy and gastroscopy.
Then then diagnosed me with Crohn's Disease. I have it all the way from my mouth to my colon.

I was first put on ciprofloxacin and entocort.
I then got changed over to Imuran and Entocort and slowly got rid of the Entocort.
I now get the choice of either Remicade or Humira. Which Im trying to gather as much info on them as I can, neither one seems that good to me.
Id rather just take my Imuran and entocort but apparently its not working so Im on the next step of the pyramid.

I struggle a lot with this disease. I never feel fully 'normal'. I take my meds and I eat as best I can, but some days certain foods will be fine and the next time I have them, they send me to the hospital. I try and stay active but I have a lot of flare ups and hate going to the hospital, I swear they have a room reserved I am there so much. Im tired a lot. Sometimes I don't have energy to get out of bed, and some days I can run 5 miles.

My Doctor told me that in the first year of being diagnosed everything is a test. trying out pretty much whatever to see what works.

Ive read a lot of forum threads and they were helpful.
But I guess Im just trying to find as much information as I can, as Im really new to this and just want as much information as I can get, as I feel like Im blind in this disease. My doctor has been great shes been really awesome, but she said other crohns patients are the best people to talk to.

Thanks guys!

 

[Nipeli]

I am so sorry Amber, I really hope you can find balance soon.

 

[rrhood1]

Welcome Amberleanne. There is lots of information available through this forum and lots of support. Lots of us have done the Imuran, Humira, Remicade route. You have to see how you do on them - some people have no problems with them and others do. This is a very individualized disease - everyone seems to have different symptoms. Our poor GI's have to try to unravel the symptoms and try to treat them.

Some people keep food logs to help them find their trigger foods. We all have different triggers - mine is onions and nuts. You will begin to figure this out over time.

It sounds like you have a great doctor - that's half the battle when you have someone you can trust.

Take care and let us know if you have questions.

 

[Pink]

HI amberleanne,
Welcome!!
My 19 y.o son was recently diagnosed and was ill for quite a while with many flare ups over the years with no diagnosis. The first drug recently suggested to him was Remicade because of where his disease is located ( Duodenum mainly). He is doing great on the meds with no side effects so far! He chose Remicade because he didn't want to self inject. You are wise to be asking questions. It was a hard decision, but this forum certainly assisted me in gaining knowledge and making an informed decision. Good luck and feel free to ask any more questions!

 

[KitPierre]

Hey Amber, sorry to hear of your struggles, I was also diagnosed in August 2013 (I was 25 too at the time). I had a horrible time finding a medication regiment that worked for me- resulted in weeks in hospital and 2 surgeries
I started Remicade in January 2014, I’m also still on 150mg of Imuran, the combo has drastically improved my quality of life. I feel almost 100% back to normal. I still watch what I eat but am not near as limited as a lot of people with CD are. I'm back running daily and feeling great! Just a little success story to keep you positive… It’s a huge learning curve and feeling out what works and what doesn’t. Best of luck, hun!!

 

[carrollco]

Remicade gave me my life back. It is like the last ten years never happened. #feelingblessed

 

[DJW]

Hi Amber. Welcome to the forum. The first year is difficult because everything is so new. It takes time to sort out the meds. But a full and rewarding life is possible. There are a lot of great people here. Im inspired on a regular basis. Best wishes.

 

[Allison M]

Hi Amber! I am new too, but was excited to read the replies to your story. HOPE! Here's hoping you have some relief!