• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Newly diagnosed and still going through testing. .

katiebabie87

katiebabie87

Hello chronies,
I am a 26 year old female that was diagnosed last January 2014 with Crohn's disease, esophagitus and a strangulation stomach hernia.

I honestly had always had all of the awful symptoms of Crohn's but never though there was anything wrong because I'm never talked about my problems. I actually was scared because I was really sick with vomiting and lost 60 pounds in a month. I thought I was pregnant. Thank god I was because the guy I was dating flaked out on me when he found out I had a disease instead. My grandfather and great uncle had Crohn's and ibd are all genetic on my mother's side...my cousins have celiac disease.
After being diagnosed I am completely gluten free and can not eat any raw fruits or veggies.
I currently just ended oral and anal enemas of pred.
I also take pentasa and many other vitamin s daily.
They are still wondering what parts are causing inflammation besides my colon. My inflammation markers arnt going down from the steriods...sso I am getting an Mr entograph.
This is really hard learning to deal with my Crohn's...I have almost lost my job and many friends ships because they don't understand. ..I am newly dating someone and it's so hard to hear the question all the time of "how I feel?" IM GLAD I FOUND THIS COMMUNITY I NEED SOME VENTING AND PEOPLE TO RELATE TOO.
 
alex_chris

alex_chris

Hi Katie,

Great that you signed up. Not only can you vent here, there is also tons of good information around here if you browse through the different parts of the forum.

I am a bit confused, you say you are on Pentasa, but then you mention steriods. Pentasa (mesalazine) is not a steroid, it is a drug today usually only used to help treat UC. For Crohn's disease it's effectiveness has been questioned and doctors have mostly abandoned it as the only maintenance drug used for a patient, e.g. http://onlinelibrary.wiley.com/stor...13BDA797560391.f02t01?v=1&t=i07pvasb&88d4cd3a

If you keep having problems and inflammation, I would have said the normal course of action is to put you on a biologic or 6mp/aza (after a course of steroids such as prednisone) in order to induce and keep you in remission. Constant inflammation is a big no no, as the scarring from that leads to strictures and even potential surgery if it builds up over years.
 
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