I hate crohns disease

[rpmacglaflin]

hi everyone my name is ryan and i am 20 years old and i'm from rhode island. i have crohns disease, i started getting the pains when i was 16. i went all of high school with out knowing what i had until it got so bad that i was unable to go to school my senior year. they started me on the steroids and lialda or something and i was feeling good until i was weening my self of the steroids. so my gi put me on remicad which went well for about a year and a half and then it got bad. over the summer i started to get this side effect from the medication, i woke up one morning in august and had a sharp pain in my left shoulder and as the day went on it got worse. the doctors thought i was just being weird so they gave me pain killer lol. and then a few days after it started it got so bad that i could not move and had to go to the ER and spent a week in the hospital. i ended up having fluid around my left lung and it sucked. sense then my lung haven't been the same and it become bad once sense the where i was in a lot of pain but the doctors gave me antiinflamitory pill and they helped a great deal. its been a month sense the fluid came back and i am already feeling it coming back and i'm starting to worry. i cant see me living a good life with my lungs being shit and always bothering me.. personally i rather have the adominal pains! i don't know what to do with my self. my gi keeps upping my dosage. i feel so alone..

 

[jed]

hey ryan

i dont think theres many people on this forum that dont know about
- misdiagnosis
- drugs failing
- inconsiderate doctors or medical staff (lots of us do find ones we love tho)
- the pain you've been thru
- the pain you're going thru
- fears of a life impeded by health complications
- not knowing what do
- not knowing if theres an end to it

so therefore you saying

i feel so alone..

is a little wrong.


you're not alone, and you've found the perfect place to have that proven to you.

welcome to the forums ryan.

join us with the ranting, the venting, the humour, mocking subjects that would be taboo around most dinner tables, and most of all, join us in sharing your experiences with others so they can see they are not alone either.

Glad to have you with us.
Jed.

 

[drew_wymore]

Welcome Ryan. Jed covered all the basics. You've found the perfect place to not be alone.

 

[My Butt Hurts]

Hey Ryan - welcome to the forum!
Do the docs say what is up with your lungs specifically? I haven't heard of lungs being involved with Crohn's. Did they give it a name, or is it just fluid, or what?
Anyways - you're not alone here at all. Welcome to the fam!

 

[kello82]

hey and welcome Ryan.
im 19 so were almost the same age heyyyy. youre not alone!
theres a lot of people here who youll be able to relate to and vice versa

 

[rpmacglaflin]

thank you guess it means a lot to me and i'm excited to take part in this community.

 

[teeny5]

Welcome to the forum!

 

[Stleger88]

Hey ryan, maybe you should see a different doctor ;-), maybe conventional medicine isn't for you, I had horrible side effects to remicade, why I stopped taking it. Everyone's bodies are different, and everyone's crohns is gonna react differently. Try
http://www.breakingtheviciouscycle.info/beginners_guide/the_intro_diet2.htm

exercise and maybe alternative medicine techniques, explore your options, find what works and get it under control, its a long term problem but it can be controlled, may wanna stay away from ice cream to ;-)

 

[atcig]

Hello and welcome, I'm new also here. I know what you mean about feeling alone. I don't know anyone irl who has it - but it seems like everyone knows someone who does. It it going to be good to have other people to talk to about this.

 

[MINI Cooper]

welcome!
Crohn's and everything that comes with it totally sucks, and
we all can sympathize. Only people with this dumb disease can really
understand how frustrating it can be. I hope you can get the proper
care and feel better soon! I have been through multiple doctors myself.
With the health care system, you sadly have to often be your own advocate.
:voodoo:
Hopefully you can find some good advice and comfort on this forum!