Colectomy

Both my kids are persevering with multiple serious medical problems. I’m a single mom with very limited family, friend and community support. I’ve nearly died three times this year and 1-2 times every year for the past six years. My kids are very depressed about almost losing me again. My kids both have treatment resistant depression, CPTSD, endometriosis/ademomyosis,
rheumatoid arthritis, Crohn’s, epilepsy, polymigratory arthritis, degenerative spine disease, scoliosis, reynaud’s syndrome, cardiac issues, migraines and fibromyalgia, complex regional pain syndrome. The crushing guilt of being an ineffective mother, giving birth to two children who each have 5-6 illnesses inherited from me and their father who hurt them physically and emotionally especially when I was in the hospital getting 8 reconstructive spine surgeries with hardware, screws, plates in nine years covering most of my spine. My son is autistic spectrum disorder high functioning and affectionate. I’m so lucky to be here for my kids with my kids. I understand that without emergency surgery and a fully invasive opening, I wouldn’t be here today. I’m grateful to Gd for saving me. What have I done to my kids. I wasn’t so sick when I got pregnant. I didn’t know when I got pregnant that the kids father’s side has most of the same illnesses and there are many. Now both my kids, as they mature, their health diagnoses increase to longer terrifying lists of diagnoses including many of my dozens of disorders including from Crohn’s, epilepsy, an unspecified connective tissue disorders, immune modulatory disorder, endometriosis, interstitial cystitis, seronegative rheumatoid arthritis, primary immunodeficiency disorder, MGUS/multiple myeloma (monoclonal gammopathy of unknown significance), demyelinating syndrome like MS without known disease prognosis. This year I almost died three times from necrotic aspiration pneumonia with large abscesses in my lungs. I am eligible for the reversal ileostomy surgeries (2 surgeries- the first 8-10 hours is almost as devastating as the emergency colectomy. There’s a small window (4months) when surgeons can do this. It’s my only chance to get my life back to live w/o an ostomy. It’s a long process after surgery and the stoma is repaired in a follow up surgery. I need this surgery. It’s a long long recovery and major surgery with many complications. How can I do this to my family? I worry that my son & daughter can’t handle this much disruption, stress, sadness. We have such little support and no one called my kids to check on them as the plan we created was supposed to happen in emergencies. No one called. Every one gave excuses, so disappointing. Such a problem for future surgeries. I know they should be independent by now yet given their medical status, being an independent young adult is very challenging. I’m so thankful to my daughter who has been helpful beyond any thing I could have hoped for. She’s incredibly giving and loving to me. It’s hard to be here. Not functional, not effective.

#UndifferentiatedConnectiveTissueDisease #MixedConnectiveTissueDiseaseMCTD # primaryimmunodeficiencydisorder #PrimaryImmunodeficiency #AutoimmuneImmunodeficiency #CrohnsDisease #PTSD #ComplexPosttraumaticStressDisorder #ComplexRegionalPainSyndrome #CongenitalHeartDefect #Epilepsy #RheumatoidArthritis #DegenerativeDiscDisease #Scoliosis #InterstitialCystitis #Pneumonia #AspirationPneumonia
#necroticpneumonia
#Gastroparesis #gastrointesinlbleed #RheumatoidArthritis #singleparent #SjogrensSyndrome #DiffuseIdiopathicSkeletalHyperostosis #Diabetes #ComplexPosttraumaticStressDisorder #Ileostomy #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.