Insomnia strikes again! Insomnia is frustrating to me because I am wanting more sleep these days to heal. Also because Aunt Flo is visiting and she kicks my butt! But the past few days I am asleep on the couch by 7 wake up around 1ish and can’t fall back asleep until 5:30 am. My alarm clock goes off at 5:45! 😁
My mind gets the best of me while I am awake at night. I am usually in some sort of pain as well. As of recently, I am considering the permanent colostomy/ ileostomy bag more and more. I had a colonoscopy last wed and the results indicated more inflammation and deep ulcers in the sigmoid and rectum compared to last year. (Last year I was on no medicine; this year prednisone and entyvio). My GI informed me entyvio isn’t working and we shouldn’t waste time adding methotrexate along with entyvio at this point due to the amount of inflammation that exists. The plan is to wait for the biopsy results to rule out CMV infection/virus and then get referred to Cleveland Clinic to see what others options I have. Surgery is still the last resort, but ultimately it is my decision when I say enough is enough.
I am not in constant pain from my disease at this point nor am I in going to the bathroom 20 times a day. I am also on a significant dose of prednisone which I am sure masks my pain and my diet I think also helps decrease the amount of BMs, along with probiotics. However, with that said my quality of life is significantly affected by disease. I do have pain with bowel movements which can be intense and exhausting. At times, I poop my pants. I wear panty liners or pads in the case of accidents. I recently somehow managed to get poop on the outside of pants at the mall when it was contained to the pad I was wearing (hooray for not having to go commando for 10 minutes am having to buy new undies). So yes, everyone knew I had accident because I didn’t know the poo was there until it was too late. Mornings are rough. I just enough energy for work but nothing else. And depression is creeping back in. I want my life back.
I want to exhaust all my options before I make the decision for surgery because it is a BIG decision. I don’t want to have regrets and wonder what if I would have tried this. I also don’t want to waste much more of life living like I have the past 6 months. Some days I don’t know if the steroids are even making me functional, but rather just keeping me alive. I also don’t want more complications as a result of the surgery and have my life be much worse. This weighs heavily on my mind.
My thoughts then return to: am I doing the best I can to take care of myself right now? No. I am eating dairy free and gluten free cookies that probably irritate my insides. No probably about it, I know they do. While, I try to limit myself to a few ( which I am doing well at) I shouldn’t be eating them at all. I also have been drinking diet snapple- again the sugar and the black tea I know bother me. I haven’t been taking my probiotics regularly either, along with drinking slippery elm which I know helps. Anything that requires effort at this point is limited due to exhaustion, time management fails, my own laziness, etc. I could be doing better. I will say- I have been much better with not eating out. I used to get Chinese food (chicken teriyaki) like 2 times a week. While fried food is a no no; my holistic dr said this was a safe option when eating out- as in on occasion – not two times or more a week. So I cut that out completely. I can’t help but wonder if that was contributing to the inflammation, nonetheless, it’s for the better at this point. What am I trying to say here: I want to know I did my best, before I go make the biggest decision of my life.
I fight daily to stay positive and battle this disease. Some nights it gets to me and I need a therapeutic cry. And that’s okay as long as I “dust myself off and try again.”
I am only human. I need to remember that.
Until next time… Thanks for reading. 🙂
*photo compliments of google image search