Colectomy

ADVICE for new colectomy for eating & coping #Ileostomy #Colectomy #CrohnsDisease #Ileostomy #Colectomy

So I’ve completed the 48 hour holter monitor. I turn it in tomorrow. Yesterday was really hard. I had very intense palpitations and had a complete break down with sweating, dizziness, vomiting, shaking. It was awful but the bright side is that I was wearing my monitor through it all so I’m hoping they will be able to glean some answers from what they find.

It’s so helpful to have my husband back home. He has been taking really good care of me. Making me soup, getting me water, and keeping track of my symptoms. He is also able to go pick up prescriptions and stuff like that which is just not possible for me to do alone right now.

Next week is a big week for me. I have a lot of doctors appointments including my surgical consultation for my #Colectomy. I’m nervous about it. I am worried the surgeon won’t be able to do the operation because my health is so poor. I’m trying not to get ahead of myself but it’s hard. Especially when I can’t do anything but lay around and worry all day anyway.

I’m really struggling lately. My anxiety, depression and emotions are on high lately. I have been requested to have IV hydration and oral nutrition by my doctors only to have the orders denied by Medicare because I’m not tube fed YET. I’ve had a total abdominal colectomy which causes increased dehydration, I can’t gain weight, I can’t eat enough or drink enough shakes to gain weight but the doctors won’t consider tube feeding me because I can eat orally, just not enough. Recently I had a CT scan with contrast showing I have a fatty liver. I’m 93 pounds at 5’4!?
I’ve undergone several blood tests and now have to see a pulmonologist and a doctor for my liver. Between panic attacks, anxiety, depression, my current health and all medically necessary treatments denied I feel treated similar to someone who doesn’t matter. Like my life doesn’t matter to these insurance companies, the doctors that have failed me, the waiting for the next appointment. I’m 53 years old and I have beautiful grandchildren I want to see grow up. Lately I’ve been struggling with overwhelming hot flashes and then so cold, my heart races, I’m bloated after one small meal. I’m getting so tired of fighting to be taken seriously, tired of appealing denials and getting no where. I’ve even started a petition at change.org for dignified healthcare, demanding they cover medically necessary life sustaining treatment for all. We are all individuals who don’t fit into one tiny box. With all of my out of pocket costs I’m exhausting our savings. My life matters, your life matters. Keep fighting because you are loved, you are unique and you are important! Don’t ever forget to be your own best advocate, even when you feel like you’ve hit a brick wall! Wherever you are in your struggles know you are never alone!

I’ll start by sharing my thoughts. I’m still working on recovery 18 months later. I’m 1lb heavier than I was prior to surgery. My vision is awful, my hair is falling out, my once beautiful teeth look horrible and I’m very down lately. I feel like no one (physically close) gets it. I’m searching for support in a place where everything seems to be a competition. I feel I’m in a place right now that I should be moving forward, yet I feel stuck. I feel stuck because I either have to fake that I’m okay or if I let anyone know I’m down, then all of the sudden they’re down. Everything going on with me now since my colectomy is a new issue. New issues mean more doctor appointments, more money and I literally feel like saving money is more important than my health issues. As I write this I want to cry, I don’t want to be a burden, I don’t want to suck the life out of the people dear to me. However, I don’t feel like they get it, they don’t get what I endure daily, they say they do because I tell them but they don’t physically get it. It’s like this is all just something I should be all well now after surgery. I’m battling malnutrition/malabsorption symptoms but my blood work is fine? I’m supposed to be on nutrition drinks but insurance won’t pay because I’m not tube fed?! Really?! Our healthcare sucks and I can’t imagine my family dealing with that or a colostomy bag. I apologize my emotions are all over the map. I miss the old me. I miss life. Wherever this New Year takes me I’m giving it to God because I don’t even know which way to turn.