I was diagnosed with Crohn’s disease when I was 17 years old, after years of undiagnosed issues. I had uncontrolled bleeding that led me to be hospitalized for two weeks at the beginning of my diagnosis. I was given a dose of Remicaid in the hospital as well as a variety of other things (I.e., Flagyl, Prednisone, a pic line, etc) to get me to remission. At the time it was great and helped me to regain my life as a very young adult. A couple years later I started Remicaid infusions regularly. I tolerated them well until I didn’t- I began having arthritic symptoms that were crippling. I then went on Humira- it worked until it didn’t and I had to have a bowel resection while on it due to a structure in my terminal ilium (I was 25 at this point).It seemed that the medications masked my overt symptoms and the disease just kept silently building scar tissue and causing problems without my knowing. After that I was put on Cimzia. That worked until I developed Lymphoma at the age of 28, as a result of the biologics I had been on for so long. Since that time I have been off of medication and very wary of going back on. I have taken corticosteroids occasionally when flares have been really bad but have generally managed with diet, exercise and management of stress- which has had varying levels of success. When I have gone on steroids I almost immediately end up with infections of some sort, which ends up being more of a disruption to my life than my Crohn’s symptoms. At least with “my normal symptoms” I know what to expect and how to deal- pain has been part of my life for so long that I often don’t modify my life for it and just push through, as I am sure many of you are familiar with.
So here is my current issue (I’m now 37 with two kids and a hope for a third) - I have been flaring more and more often over the last couple years. I have a significant structure at my terminal illeum again. I have tried steroids a couple times, I have modified my diet, increased yoga, done acupuncture, worked out more, reduced stress as much as possible, etc. and things are getting worse. Lately I haven’t been as good about doing all the things listed because I just feel too crappy and lethargic to put in the effort after work and family. The flares get better each time but come back with a vengeance and it is getting to the point that it is disrupting my life in ways I haven’t allowed it to in a very long time. My options are to try medication again, which makes me insanely anxious to even think about or to try surgery. Anyone have any similar experiences? Any suggestions? My doctor is open to surgery and understands my medication reservations but it’s my decision and one that is really weighing on me… which of course doesn’t help! Thank you!!
So here is my current issue (I’m now 37 with two kids and a hope for a third) - I have been flaring more and more often over the last couple years. I have a significant structure at my terminal illeum again. I have tried steroids a couple times, I have modified my diet, increased yoga, done acupuncture, worked out more, reduced stress as much as possible, etc. and things are getting worse. Lately I haven’t been as good about doing all the things listed because I just feel too crappy and lethargic to put in the effort after work and family. The flares get better each time but come back with a vengeance and it is getting to the point that it is disrupting my life in ways I haven’t allowed it to in a very long time. My options are to try medication again, which makes me insanely anxious to even think about or to try surgery. Anyone have any similar experiences? Any suggestions? My doctor is open to surgery and understands my medication reservations but it’s my decision and one that is really weighing on me… which of course doesn’t help! Thank you!!