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Trying to ignore on oncoming flare

I’m in an ICU with my father, yesterday, he had most of a tumor removed from his spine with two areas of his spine. L6 and L7 now have acflexible cage filled with fluid, six screws and two rods. His spine was straitened and he is a 1 inch taller now. There was s cancer in his liver bile ducts, just like my departed sister had.

He’s on so many drugs today and after a 6 hour surgery with an 18 inch incision he is spent and is loopy like a toddler. Wants to go home and keeps asking what the heck is going on or what are we doing?

A lot sleepy nights with fear. My sister died of liver cancer, not able to get a life saving surgery due to Crohn’s complications.

My brother died of heart failure, my mom from Alzheimer’s and two uncles in the last five years. We are the only two left in my immediate family.

The stress and sleepless nights and missing healthy meals are catching up. Cramps and nothing but large amounts of fluid in my ileostomy bag.

I’m walking a lot to manage my stress. I stay positive and encouraging and tonight with my drugged father out of his mind, I don’t get upset nor lose my temper answering the same questions twenty times. Painfully reminds me of my mom’s Alzheimer’s. I know better than to over react and hold onto bad feelings.

Running to the bathroom every 20 minutes and trying to ignore feeling physically miserable is hard, but with my dad frustrated, in pain and confused, I can’t leave until he goes to sleep. It’s a small price to pay for all he’s done for me. He’ll be lucid again, like he was earlier today, after a good night’s sleep.

Hopefully we can beat the cancer, with so many more tools than even 5 years ago. I know, like all of us, he has an expiration date, his closer than mine.

My ileum and part of my colon were removed last October, I think. I’ve been as healthy as I’ve been since diagnosed last in 2018.

In a couple hours I’ll go home and sleep with a new ileostomy bag big enough to let me sleep through the night, I hope to keep going

I feel I could probably go to the ER and get admitted but then, I wouldn’t be able to see my Dad.

I’m hopeful that as he gets back to himself I can get back on track and hopefully my flare won’t get too bad. I’ll say my prayers tonight and say 20 things I’m grateful for to lift me in my dreams.

The first girl I kissed, my former neighbor, has been calling me every night and supporting me. BTW, when we kissed it was my older sister’s doing. We were in preschool at the time. We joke, so much has happened since our first kiss.

A few times later as teens, sparks would fly and we once held hands but never kissed again. That could soon change.
Thank You,
My dad is improving and that eases the stress which has been a trigger for many, many, many flares. I’ve had 378 days in the hospital in the last 5 years and now I’m flare free for four months, a record for me that I need r to keep growing.

I feel back in control and my guts are calming down, letting Skyrizi do it’s magic. I’m taking super green and glutamine powders in my morning smoothies followed B12 and D3 liquid under my tongue.

I walk every day, always aiming for 5000 steps a day. Circulation is my best friend.

Crohn’s is a bully that can reek havoc anytime and anyplace and anywhere. It often feels like we have no control.

As hard as it’s been going, I’m fighting that bully and I may just win and I can’t fret a bloody nose, I have to keep on swinging and I know I can get through this.

A thousand more thank you’s for your encouragement
All the best to you and I hope you can get your flair under control before it gets to bad.
I may be fooling myself, the cramps are pretty bad tonight and they are unlike any I've ever had. Last October I had my ileum and part of my colon removed. It seemed we vacated the troublesome spots that have haunted me for 5 years and 378 days in the hospital. Over 20% of my life in three hospitals in my area. Now that another part of my intestines is being attacked, the hospital that, my dad is in. the one that I use and my GI prefers, is full,. They are using the ICU for medical patients who are not acute. My dad was supposed to be moved up to Ortho/Surgical floor a few days ago, but no go, not an empty bed available.

I am trying my best to not crash, but tonight I feel in trouble.