Hello, I've Joined this Forum

[Quazaka]

Hi there! So I'm new to this whole forum thing, (but not so much to the Crohn's thing) so here goes! My story: Well I got super sick freshman year of high school (I'm now 20) and went into the emergency room and was told it was 'just stress' (right...). I was admitted into the hospital about a week later and after many tests was told that I had an IBD. They weren't sure which one exactly but they were leaning more toward UC. They put me on prednisone (oh joy) and a couple months later I was back in the hospital. This time they were able to determine that it was in fact Crohn's disease and they started me on Methotrexate shots which I positively hated. Fast forward a couple months and my doctor switched me to Remicade with Methotrexate pills. That worked super great for awhile, until it didn't. They found antibodies forming about a year ago and my doc switched me to Humira and also Azithiopran (Methotrexate and me REALLY don't get along.) I like Humira but I'm also concerned about what happens next if Humira stops working but I guess I'll cross that bridge when I come to it. Anyway I'm super excited to have found this forum cause while my friends and family are great at being supportive they don't necessarily get it, so hi! And I look forward to getting to know y'all!

 

[Clash]

Welcome to the forum!

My son was dxed at 15 and went straight to remicade he has since moved to humira due to antibodies forming with remicade. Mtx was also added to both.

There is another anti tnf biologic if Humira fails, cimzia. Then of course there are other biologics that aren't tnf driven like entyvio.

Wishing you a long stable remission!

 

[my little penguin]

My kiddo is 11
He was dx at age 7
Also reacted to remicade after 8 months so has been in humira for 2.5 years
Others drugs
Cimzia
Stelera
Simponi
And entvyio

So a few to try
Good luck

 

[scottsma]

Hi and welcome.We have a" young adults "thread if you haven't already come across it.I'm sure you'll be very helpful to those who are struggling.Keep well.

 

[fuzzy butterfly]

Hi and welcome. Sorry you need to be here tho. There are few other options to try yet as the others have said.
Oh yes we get it! Only to well im afraid to say.. We are here if you need us and dont be afraid to ask anything as im sure it wont anything we havent heard of or dealt with between us all. Take care ...

 

[Quazaka]

Thanks guys! That really helps and I'll have to do some research on those medicines you all mentioned. I also checked out the young adults thread and it's great! Thanks for suggesting it

 

[smt]

Sorry that you are going through this. May I know if you are at university now? If yes, I know that it takes a lot to get going, but I am sure you would not give up, unless it truly becomes impossible. Someone mentioned here that in your country there are support structures within the university to help people like you and you can make use of them. I am as yet undiagnosed and the victim of neglect. I am a research scholar and I struggle - currently going through my comprehensive doctoral and have the viva voce on next Thursday. I wish you the best.

 

[Quazaka]

Smt, yes I do go to college, I'm actually just at a community college getting my associates before I apply for a nursing program! (Which isn't something I would have even considered before I got sick so some good came out of it in that I discovered exactly what I want to do with my life) it's really not easy but there are some supports in place to help people with things like this, for example I let my teachers know from the first day about my Crohn's so they are aware that I may have to leave in the middle of lecture to use the bathroom (this has been extremely helpful because I've had teachers that don't allow you to leave in the middle of a test but they have let me when I've had to use the bathroom) or I may miss an entire class due to being sick, and they've all been really great and helpful about it.
I'm sorry that they haven't figured out what's going on with you yet! I know a lot of times doctors are under such pressure to turnover patients that they aren't able to give the unique care to each patient that they should :/ don't give up though! Sometimes you have to be an advocate for yourself for them to find out what's wrong. Best of luck on your test on Thursday!

 

[smt]

Thanks for your wishes.

I am sure that you would be a great nurse. In this country (India) a cultural dimension called power distance is high, which essentially means that powerful people exercise undue influence over the rest, and physicians are powerful. So, in spite of constant pleadings I have not been able to convince them. I would go to Calcutta in mid-November to give it a last shot and would push for more tests. Hope something comes through. In this small town where I live, advanced medical facilities are not available, and I have little time.