Tough Life Decision: Humira or no Humira....

Hello fellow Crohnies. I'm 22 years old and have had my entire life flipped upside by this disease in the last year.

After a severe and rapid onset of Crohn's disease I had my colon removed in August '13 and welcomed Walter (my stoma) into my life and accepted life with a permanent ileostomy. A few months later, after being fully recovered and back to my old self, my rectum/colon stump began to flare up, forcing me to have a second surgery - total proctocolectomy - in April '14. Now here I am, about 2 months out of my second surgery and once again feeling back to my old self and weight. I am, as far as the Dr's are concerned, in complete remission, since all of the Crohn's diseased organs have been removed. I am able to eat whatever I want (obviously avoiding gassy foods and taking necessary supplements/vitamins) and am back in the gym, feeling great.

I'm now faced with a horrible life choice, to which there is no actual "right" answer, and to which I am receiving differing opinions on from multiple GI Drs. Should I take Humira to hopefully prevent the recurrence of the disease elsewhere in my GI tract (namely my small intestine), or should I continue as I am today and hope that the disease does not recur elsewhere in the future? I am forced to weigh out the risks and benefits of either side. If I start taking Humira I am basically using up what's left in my arsenal of treatments (I've already tried Remicade, which failed) and will be left with no solution if the disease returns later in my life once I have stopped the drug. Moreover I am faced with all of the possible and horrible side effects of Humira that I am reading about, most notably living my life immunosupressed and susceptible to all sorts of sickness and infections. On the other hand if I don't start taking Humira I avoid all of these terrible side effects, but I risk the possibility of Crohn's recurring in my small bowel. If this happens I am basically ****ed since there isn't much left to take out of me. My disease has been extremely aggressive and severe up until this point, so if it returns in my small bowel there isn't much left we can do besides trying Humira and hoping it takes hold then.

I am currently seeking second and third opinions from other GI Drs and am going to get the necessary bloodwork/tests done to make sure that I am in as complete remission as it seems. But the choice will ultimately have to be made somewhat soon, and at the end of the day the decision is my own. I have no idea what to do. I know that my case is very unique, as are most people's with this horrible disease, but I am hoping that some of you may have some advice that will help me in my decision-making process.

I'm a bit confused; did you have any small bowel disease prior to surgery? Your disease being extremely aggressive in your colon will not necessarily translate to extreme aggressiveness in the small bowel; in fact, it tends not to (and vice versa; people with extremely aggressive small bowel disease usually still have all or some of their colon left). You are not wrong to be concerned about it, but if you've had exclusively colonic disease up until now, I would not jump the gun with Humira.

Just keep a close eye on things, with monthly blood tests if possible. Try to get your doc to do the faecal calprotectin test as well. If your disease is going to return after surgery, it will most likely happen in the first year. I had your same fears and, so far, nearly 16 months later, I am still okay. If my disease has returned, then it hasn't struck with anything like the severity of my Crohn's colitis. I don't even know if it has returned (though I'm slightly worried it has.)

Best of luck and hope you remain in remission and healthy for a long, long time. As inane as it might sound, try to enjoy your good health in the present and let the future do whatever; so much easier said than done, but still...

It is a brutal choice. I chose to go back on meds to help maintain remission. I also sought out many opinions of experts and everyone thought my best chance of staying healthy was going on meds. I trusted their opinion, but I really hate taking meds.