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Firstly, just want to say how grateful I am for this forum and for all of us having a communal place where we can feel less alone. My name is Dave and I was diagnosed with Crohns when I was 20 years old. I ended up developing a fistula as well at the time and lost considerable weight so had a resection which led me to years of relief and remission. Fast forward 14 years (I'm 34 now) and have recently begun experiencing symptoms again. My gastroenterologist put me on Stelara and I've been doing injections every 8 weeks about 10 months now. It's hard to say if it's helping -- right now, it assuredly doesn't feel that way.
I woke up yesterday with a strange and itchy rash underneath my chin which I just assumed was related to shaving or an allergic reaction. But as the day went on, I noticed my stomach disagreed with me more and more throughout the day and I began experiencing those all too familiar "contraction-like" waves of pain. At first, they were manageable and I thought that perhaps I had even had too much dairy or something but as the day and night went on, I'm in Day #2 now of extremely painful flare-ups that are debilitating. I'm afraid to eat. I made myself a smoothie this afternoon thinking it would be an easy thing to digest and have been sipping on coconut water throughout the day to try and stay hydrated. When the waves of pain come, it makes me nauseous. I worry that the pain is an indication that I'm developing a fistula or a fissure or something else. I hate the way the pain also saps away my presence -- I feel in a fog and just totally lethargic. My stomach feels so bloated that even walking is such a tender exercise as I can feel each and every footstep all throughout my abdomen.
Reading some of the posts, people talk about using cannabis to help sleep and to deal with the pain. I think I might try it although, I doubt it would be to eat because at this point I'm too afraid to put anything in my stomach. Although, I know that tomorrow if my symptoms are still ongoing, I'm going to need to find a way to eat even if it's drinking Ensure. I have an appointment next week with my gastroenterologist and am glad that I'll be able to speak to her about this most recent flare-up; it's probably the most severe one I've experienced since I was first diagonosed in 2007.
More than anything, this post makes me feel slightly more connected and a little less alone in knowing that others have to suffer through these debilitating symptoms too sometimes. I'm hopeful that the Stelara will make a bigger difference going forward and think I need to also consider trying to develop some mindfulness practices and carving out time for stress relief in a way that perhaps will alleviate my symptoms.
My wife and I are expecting our first baby in 7 weeks and I panic when I think of trying to manage a flare up like this amidst being a new father and trying to support her and my son once he arrives.
Thanks all for reading and hope you're staying healthy and are taking care of yourselves.