I'm new to this group - diagnosed with mild crohn's 7 years ago at 49 yo. have had this fissures in my vulva for many years, gynecologist gave me estrace thinking it was menopausal thinning skin, finally mentioned it when it happened to be present at a dermatologist appt. she did biopsies there - ouch - and it came up with all 3 showing crohn's there - in my vulva and perianal areas. So they immediately put me on Humira and gave me clobatesol (steroid cream) and itching and fissures (feel like a paper cut) went away for the most part. Specialist dermatologist told me that now this metastatic cutaneous Crohn's (that was they call it when it shows up in skin) is not the end point of therapy and that if I had these symptoms while on Humira, it might mean the treatment isn't working. One derm. wanted me to just take a montly dose of vaginal yeast medicine b/c Humira can cause more yeast infections, but my GI said no, if you have itching, get tested for yeast cuz we want to know if it isn't yeast, then we'll have to consider what is going on, etc.
the last month I have had extreme fatigue, flue like symptoms that don't turn into flu, stomach pain, on and off diahrea, vaginal itchiness (with no discharge) and twice a fissure in my vulva, along with depressions and anxiety of course (goes without saying, right). I got tested and no yeast. I sent a fax to my GI at UW in Seattle and the male nurse called me back and said my vaginal itching had nothing to do with my Crohn's (HUH???), i was probably coming down with the flu, that I was making more problems for myself to relax (seriously?) and that I should never fax them again - other "normal" patients call and leave a message and the nurses get back with answers. I was amazed, to say the least. 3 days later I had another fissure and got in to see my derm., she did 2 biopsies again to see what was going on and told me that only an idiot would say that my itching wasn't related to my crohn's - that was so validating. these doctors are so arrogant and dismissive. I have an anxiety condition - heredity and from the Crohns, fibromyalgia, ADHD - and sometimes when things like this happen it ramps up my anxiety, of course. You would think doctors who treat patients with ailments that normally have depression and anxiety and bedfellows would have some training with this and work at having a little more of a nurturing bedside manner. I've gone on enough.
If you have fissures down there and it isn't connected with a yeast infection, go to a dermatologist or a specialist - I am lucky to live close to UW and the dermatologist I saw had the knowledge to check into this. This extra-intestinal symptom puts me in a new ball game - rare and harder to treat. so starting with mild symptoms now I'm considered severe, but have been on Humira for 2 years and up until now have had good results. Anxious about what might be ahead, and waiting for the results of the biopsies - wish me luck.
