Well I’ve been M.I.A. for a while now. I apologize for that. My life has been anything but exciting and I have had a lot of other stuff on my mind, i.e. school, work, what I’m going to do with my future… I will tell you, I have never been happier to see this box and syringe in my life. Okay, now I’m just sounding like a druggie (lol). consuming. But this is probably one of the most confident decisions I’ve made so far. I think I told you all I didn’t go through with the fecal transplant trial, there just wasn’t enough information for me… Hense, the word “trial”. Well before when I was on Stelara which is also sort of an experimental medication for Crohn’s, although is approved by the FDA, I felt amazing. And when I say amazing, I had so much energy, ate like a pig, and was loving life. It was great. So, after my washout period awaiting the trial, I thought back to when I was feeling good and wondered why in God’s name did I ever stop taking that wonderful drug. The answer was: the results of my colonoscopy and my doctor’s better judgement of what my insides appeared to look like compared to my outsides (typical). So yada yadaaaa he made me come off of this. Same old; on to the next one. After my decision to not undergo the trial I basically demanded to be put back on Stelara. Although I put 100% trust in my doctor, I know my body better than anyone else I don’t care how much education you’ve had. I’ve learned so much over the years and with this disease you NEED to know your body. And for all of you newly diagnosed, you will know exactly what I’m talking about a few years from now. Trust me. I’m kind of babbling on, sorry. But anyways, a month into Stelara I’m definitely feeling better but I still get that urge to go to the bathroom and there’s a few other things I’d actually like all you Crohnies opinions on. Here’s a few questions for all y’allllll…
Sometimes I just get wicked hot and feverish. It’s not a hot flash (believe me I’ve experienced those while on prednisone) but it’s more like sweaty and I feel like I have a fever. But, to make it clear I never show a fever. I’ve had people tell me it’s because of being on an immunosuppressant but I’m not sure.. Do any of you experience this?
Also, I work really hard on my body and staying fit. I eat very healthy 95% of the time yet I cannot seem to get rid of my bloat in my stomach. People tell me I’m crazy and I do not look bloated but I can feel it and sometimes I do look 5 months pregnant, scary I know. It mostly comes about when I’m not feeling too well. I’ve taken gas-x and all of those gas relieving OTC meds but I don’t think it’s that. I drink plenty of fluids too. I’ve heard though that Crohn’s patients tend to have a little “pouch” or their abdomen area appear to be swollen. It’s frustrating because I know it’s not “weight” and I just want to know what it is! GAHH. So I guess my question is have any of you heard of this or experienced this? Any suggestions or anything would be helpful!
Despite all that. As my friends and peers have been looking forward to this time in their life, I have been dreading it. College graduation time. The reason why is because my damn stomach has let me barely make it through each semester at a time. Granted these past few years have been the absolute hardest trying to control my disease but I look back and wish I had just pushed myself through it all. That’s kind of a stupid thought because at the time, sitting in the hospital bed every few months it was kind of beyond my control. And it’s not about having the “college experience”. It’s about the future, and what it has to hold for me. At this point… It’s not too much. I especially dread it when people ask what I’m going to school for or any of those “what my future holds” kind of things. I never know what to say and am frankly kind of embarrassed. I’m not complaining, I guess I’m just wishing I could be wearing a cap and gown these few weekends like all of my friends are.
Looking at the other end of it all I am actually really excited because I’m finally going back to school in the fall. Hoping this Stelara works and I have no more surprise hospitalizations coming up. I am very impatient when it comes to this stuff. I want to get it done now and make a life for myself. Not rushing my life away by any means, but I just know what I want for my future. Not only job wise, but just my expectations for life, happiness, and everything in general. I keep trying to tell myself it’s going to happen soon enough, and I know it will. I will figure it out. I truly believe and I know I’ve told you guys a thousand times over everything happens for a reason. I’ve been trying to live like it’s my last day. Cliché and a little corny, I know, but it’s so true. You never know. You could get in a car accident or be handed something life changing, or for all we know the world could end. Ha, at the rate we’re going robots are going to take over with all this damn technology. Don’t you just wish sometimes you could go back to the time when you actually had to, god forbid, call someone and TALK to them on the phone instead of just text or email. It’s gotten kind of ridiculous in my opinion. I get kind of side tracked in these, oops.
Well despite all of the wondering, stressing, and overthinking my life is pretty good. I can’t really complain. I’m feeling better than I was before and things are looking up. And this weather!!!! It needs to be summer now and then I’ll be happy as a clam 🙂
Side note: I can’t believe people actually come on here and read about my fascinating life (sarcasm) haha. I mean I like to think I’m pretty cool but thanks for planting the thought deeper in my mind 😉 bahah
Hope you all have a good night, I’m done babbling on for now. It was nice to get on here and write a little bit again. Sweet dreams!