Hi all - I was diagnosed with Crohn's about 7 years ago and my case is complicated b/c I also have divertiulosis, IBS, depression, anxiety, PTSD, ADHD, sleep apnea, fibromyalgia, arthritis - so sometimes it is hard to tease out exactly what is going on. And my anxiety can often create a situation where doctors may think I'm over-reacting, etc.
I started on entocort a year after I was diagnosed and stayed on that for a couple of years, and then weaned off due to high blood pressure, weight gain, cataracts, etc. the following fall had 3 biopsies (done by a UW dermatologist) b/c I had recurrent fissures in my vulva area for many, many years and it showed Crohn's down there. Am on Humira now for 2 years. Am on Socl Sec. disability for 2 years now. really would rather work and have a normal life.
the last month has been filled with stress (marital counseling), extreme fatigue, changes in anti-depressant medications, took a part time job at end of Dec. that turned out to be very stress-producing and quit after a week, diarrhea on and off (some food related??), feverish, headache, and 2 episodes of a fissure in my vulva along with vaginal itchiness (yeast test negative).
I wrote a fax explaining all this to my GI Dr. at UW in Seattle - the male nurse responded that i was probably coming down with the flu, the itchiness had nothing to do with my Crohn's, I was just making things harder than they have to be and to NEVER send them a fax again - other "normal" patients just call and then wait 2 days to get a response. I was floored b/c my GI was the one who told me if I had itchiness there to go check for yeast and if there was none, he wanted to know about it. After the fax I had another fissure flare up and went in to the nice dermatologist who did another 2 biopsies down there (ouch) last week and told me only an idiot would say that my itchiness, etc had nothing to do with my Crohn's. Also she would fire the nurse if he was in her department. that was validating for me, b/c it is crazymaking being treated that way by someone who is supposed to be there to help guide you and ease your worries. Most Crohn's patients have some form of anxiety/depression that goes with having this disease. I wonder what training these docs have in this area? Obviously mine skipped that class.
I'm waiting for the results of biopsy will will be definitive, but I'm never sure how to know if and when to call my Dr. - how do you all know if you're in a flare, while on something like Humira - where do you draw the line and insist on going in to see the GI? I've made an appt. with a different GI, but that isn't for about a month. feel like I'm between a rock and a hard place. Want to write a complaint about this Dr. and his staff (for many reasons), but don't want to burn bridges, know what I mean?? I need to stay within the UW system. Thanks for your thoughts and support.
I started on entocort a year after I was diagnosed and stayed on that for a couple of years, and then weaned off due to high blood pressure, weight gain, cataracts, etc. the following fall had 3 biopsies (done by a UW dermatologist) b/c I had recurrent fissures in my vulva area for many, many years and it showed Crohn's down there. Am on Humira now for 2 years. Am on Socl Sec. disability for 2 years now. really would rather work and have a normal life.
the last month has been filled with stress (marital counseling), extreme fatigue, changes in anti-depressant medications, took a part time job at end of Dec. that turned out to be very stress-producing and quit after a week, diarrhea on and off (some food related??), feverish, headache, and 2 episodes of a fissure in my vulva along with vaginal itchiness (yeast test negative).
I wrote a fax explaining all this to my GI Dr. at UW in Seattle - the male nurse responded that i was probably coming down with the flu, the itchiness had nothing to do with my Crohn's, I was just making things harder than they have to be and to NEVER send them a fax again - other "normal" patients just call and then wait 2 days to get a response. I was floored b/c my GI was the one who told me if I had itchiness there to go check for yeast and if there was none, he wanted to know about it. After the fax I had another fissure flare up and went in to the nice dermatologist who did another 2 biopsies down there (ouch) last week and told me only an idiot would say that my itchiness, etc had nothing to do with my Crohn's. Also she would fire the nurse if he was in her department. that was validating for me, b/c it is crazymaking being treated that way by someone who is supposed to be there to help guide you and ease your worries. Most Crohn's patients have some form of anxiety/depression that goes with having this disease. I wonder what training these docs have in this area? Obviously mine skipped that class.
I'm waiting for the results of biopsy will will be definitive, but I'm never sure how to know if and when to call my Dr. - how do you all know if you're in a flare, while on something like Humira - where do you draw the line and insist on going in to see the GI? I've made an appt. with a different GI, but that isn't for about a month. feel like I'm between a rock and a hard place. Want to write a complaint about this Dr. and his staff (for many reasons), but don't want to burn bridges, know what I mean?? I need to stay within the UW system. Thanks for your thoughts and support.