Iv been diagnosed since I was 9 and have been passed through all the drugs my whole life. I had started with a local doctor who honestly didn't know what the heck he was doing until I had finally found a proper gastroligist at duke to which he had gotten me straightened out to a certain degree. I was 12 at this point and my mind was completely f***** up to the point I didn't even know who I was or where I was. But my duke gastro doctor had found out my Crohns was causing a chemical imbalance and finally got me steady and on Remicade and let me tell you that medication was a god send it had helped me for almost 3 years but unfortunately as the pattern will show nothing lasts when it comes to sevear Crohn disease. My body had started becoming adjusted or immune to the medication so we had decided to switch to humira it worked "ok" for about a year and mby a half but honestly the shots were extremely painful at the time and I had to find something that worked better. We had then begun to take a medication who's name slips me but always came in huge amounts of pills. Not sure it's name but it worked out alright which made the doctor hopeful that it was only in my upper g.i but it turned out I was only in remission for a short while. I was then 17 when I had probably my second really big flare up so I was put back on steroids (which I was taking on and off as I transitioned from medication to another) and was forced back to Remicade at the highest dose every 4 weeks which lasted for nearly two years. We then had to find another medication cause even that was wearing thin. I then went to entyvio and it worked alright.... nothing like Remicade but it helped me manage but honestly I was still having agonizing flair that would pop up time and time again. So I finally took the big leap and got a upper stoma to separate my upper stomach from my colon where the main issue which was in my lower gi but while that lasted for nearly 2 years til I was 23 (I had the surgery when I was like 22~21) I still had issues so my doctor swapped my med to a new kid around the block stelara which I am currently on and am still struggling. I get these infectious liquid building up and emptying out of my rectum and I just have such a hard time dealing with this pain all these years so I came here to share my thoughts and see other ppl dealing with similar situations. I'm currently on a flair and have also been diagnosed with osteoporosis from all the high dose steroids so be careful with that
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