Reaching a Crohn's Plateau: Humira Every Week Still Having Diarrhea

So today (August 1, 2013) I went to see my gastroenterologist who was following up increasing my dosage of Humira. My health has been decent however not the same I was when I originally started taking Humira. I am still having diarrhea about 4-5 times per day. My pain level is decent. Most of the day I go without pain.

My GI said the goals for managing Crohn’s are making sure patients are eating well, not tired, no fever, and decent energy levels. My parents were not aware of this and they were thinking I would go without diarrhea. I mean it is sad in a way for now I will continue to have diarrhea. However, I know that as medicines progress could really improve not only my quality of life but the over 1.4 million people with inflammatory bowel disease (IBD). One good thing is that today if you have Crohn’s or ulcerative colitis you have more options. If you had Crohn’s or ulcerative colitis in the 1980’s or even early 1990’s you really only had a the option of Asacol or Prednisone. Now there are biologics, 6-MP, methotrexate, Asacol, Prednisone, and surgery. The surgery that can be done now is much minimal with surgeons taking out less of the colon and intestines and less scaring which is positive.

My doctor told me in the next year or so interlukin’s could be the next big thing for IBD. I believe STELARA is one of these since it targets interleukin- 12 and interlukin-13 which targets inflammation for Crohn’s. I covered STELARA here and the results from a trial.

The plan my GI laid out was to do a C-reactive protein test and to consider giving me anti-diarrhea/anti spasm medicines. Recently, I have been having IBS like symptoms. The idea is that this should do some good. I e-mailed the doctor I saw at Mayo and to get his thoughts and he suggested to a c-reactive protein test, in addition to a CBC (complete blood count), and c difficile test (since I did have c diff for so long). However, his recommendation would be to include 6-MP or methotrexate with the Humira to give it a boost. My GI today said that white males who are young have an increased risk of developing lymphoma (however the increased risk is on a percentage basis). I did some research and the risk was about .1% which is about 1 in 1000 (however it is still there).

I have been thinking about what I eat and last Sunday I ate a brownie sundae with ice cream and some Mexican food for dinner and really felt it. I think food has a role, however I think some people might overstate its impact. With this said my internist recommended a nutritionist who I have thought about seeing. The most I could lose is actually eating a well rounded diet. It would be nice if I could figure out if I have trigger foods. In general I think chocolate might make me worse and anything greasy. However, I still have pain if I have chicken noodle soup so.