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Hi, I need some advice!

I'm 20 years old and am living with UC. I was diagnosed three years ago and have never had it completely managed. Last January I began having a flare-up that continued to get worse throughout the year. I was hospitalized four times during Summer 2016. I'm a college student but was unable to return to campus because I was so sick and still am sick. In December, doctors found a blood clot in my lung, which they suspect is from the inflammation caused by the UC. I took Humira from July to December but it did nothing. I had a blood test done that actually showed almost no trace of Humira in my system, meaning my body had been rejecting it the entire time. I've been hospitalized again since being hospitalized for the blood clot. I can barely leave my house due to being tired, not feeling well, and constantly having to go to the bathroom. I've had more accidents than I can count. I pass blood almost every time I go to the bathroom. Things are pretty bad. 

Anyways, I have two surgeons, one local and one that I visited out of state, who think my colon should probably come out. I just switched to a new GI and he doesn't think I should have surgery. He wants me to continue taking the medicine I'm currently on, Entyvio, along with Lialda and steroids, to see if I will get better. Last year I had a pretty bad reaction to Prednisone, so I cannot take it, so he wants me to try Entocort. I'm leaning towards surgery but feel a bit unsettled that my GI is not agreeing with the surgeons. If anyone could give me some advice or helpful info about the surgeries, I would greatly appreciate it.

 Reply posted for erp2215.

My guess is that your GI is hesitant about surgery because you're young and a colectomy is irreversible. My pediatric GI was the same way. 

When did you start the Entyvio/Lialda combo? It might be worth giving it a couple of months because if it kicks in you could save your colon. Especially if you don't have fistulas or abscesses. 

Similar to you, I started having a bad flare just as I was graduating college (spring 2014). I was hospitalized that summer and determined Humira probably wasn't working even with methotrexate. But surprise! I was going to grad school. So new doctors, many ER visits etc, long story short, I switched to Entyvio fall of 2014. Unfortunately, I didn't respond quickly or enough, so in January of 2015 when they found fistulas in my latest scan I was scheduled for surgery. I had a bowel resection (not full colectomy because I have crohn's and my SI is worse) that February. Blood clot showed up in March. Other complications through the summer and we found out that the surgeon didn't do a great job so he had to go back in November 2015 to finish the job. Since then, I have been strictly on Entyvio and it's worked wonders. I'm in clinical remission.

Without knowing all the details, but based on my experiences I would wait on surgery until you know the new meds are too little too late. But that does not mean wait forever in agony. It's a balance. 

Best of luck.

My guess is that your GI is hesitant about surgery because you're young and a colectomy is irreversible. My pediatric GI was the same way. 

When did you start the Entyvio/Lialda combo? It might be worth giving it a couple of months because if it kicks in you could save your colon. Especially if you don't have fistulas or abscesses. 

Similar to you, I started having a bad flare just as I was graduating college (spring 2014). I was hospitalized that summer and determined Humira probably wasn't working even with methotrexate. But surprise! I was going to grad school. So new doctors, many ER visits etc, long story short, I switched to Entyvio fall of 2014. Unfortunately, I didn't respond quickly or enough, so in January of 2015 when they found fistulas in my latest scan I was scheduled for surgery. I had a bowel resection (not full colectomy because I have crohn's and my SI is worse) that February. Blood clot showed up in March. Other complications through the summer and we found out that the surgeon didn't do a great job so he had to go back in November 2015 to finish the job. Since then, I have been strictly on Entyvio and it's worked wonders. I'm in clinical remission.

Without knowing all the details, but based on my experiences I would wait on surgery until you know the new meds are too little too late. But that does not mean wait forever in agony. It's a balance. 

Best of luck.