Ileostomy

I had toxic megacolon that required emergency open surgery total colectomy w ileostomy. I found out that the j pouch surgeries to reconnect my colon need to be open invasive surgery cutting open a large scar from abdomen to pubic bone from the colectomy. The colectomy and ileostomy was the most painful experience, the surgery was over 12 hrs w complications during and after. I can’t imagine reopening this scar and all the scar tissue around it 3 more times. I’ve had 8 spinal reconstruction surgeries in 10yrs w titanium screws, plates & rods including replacing my tailbone - those surgeries hurt less than the colectomy. Has anyone had j pouch after colectomy? I’m worried about pouchitis and other infections bec I have a primary immunodeficiency disorder? I read ppl have 8-12 bowel movts after surgery? How long does recovery take? Is the pouch connected and working after first surgery? Is life every normal w a pouch?
#CrohnsDisease #DegenerativeDiscDisease #Colectomy #Ileostomy #jpouchsurgery
#Pouchectomy
#colorectalsurgery #Scoliosis #PrimaryImmunodeficiency #InterstitialCystitis #demyelinatonsyndrome #demyelineatingsyndrome

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

I feel broken. I spend all day dealing with my ileostomy. My friends and most of family are done giving almost no support, a few texts and then nothing.
#CrohnsDisease

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

Today…. Today I woke up in pain… Not the mental pain of losing your health…. No the physical pain which then turned on mental and emotional pain…. The baggage…..The remorse…. The regret….
All surgeons happily grab a knife and promise a quality of life beyond the former life you had… When that fails to come to fruition you’re left with regret… Anger…. Sadness…. Deep seeded sadness….
Quality of life, lack of…. But I started out in one piece, not a butchered mess…
Now I have a bag, a permanent ileostomy bag… I accepted this life in hopes of a quality of life…. Now I’ve traded one problem for many many more…. Not even mentioning the sacrifices I make daily… Daily… Every day my life is timed…. A time to eat, a time to drink, a time to travel, time to shower, time to change my bag…. Nothing….. Absolutely nothing is spontaneous or untimed….
I miss having health problems in one piece… At least then I could deal with one problem…. What I wouldn’t do to turn back time…. To undo what has been done… It’s permanent…. No longer a surgical candidate…. They’ve ruined me this time…. Permanently…. I’m mad, I’m sad, I’m tired of trying to live this life…. Life is hard enough…. Then add medical negligence that has ruined your life and any hope you had…. Hope is no more…. There is no more hope… Only a shell of the person I once was, and regret…
Doctors aren’t Gods, they don’t care what they’ve done, they don’t walk in our shoes, the very shoes they’ve ruined…. And once they’ve ruined you, they walk away, they go back to their lives, the ones we pay for when we trust them…. We trust them to do what they say…. When it doesn’t come to happen, they walk away, they don’t need you anymore…. And they’ve ruined your life….
I will take my last breath knowing this surgeon lied…. And then, just like that, after ruining my life, my body, any semblance of normalcy…. They leave you worse off than you ever were before…. And they mow it!

Reflection over this medical journey I’ve faced is laced with pain, questions, questions of why… Why does our medical system continue to fail me? Why am I dismissed because I’m not a text book case? Why are doctors so ready to treat symptoms without proactively trying to find the cause of pain?
Almost 8 years ago I started this journey, with hope, determination, being my own advocate only to end in this place of more questions than answers, surgically botched and left to endure no quality of life, after promises of better quality of life.
Subtotal Colectomy with IRA…. Failed…. Permanent End Ileostomy…. Ending in severe internal rectal pain…. This is not normal. I’ve endured procedures for symptom relief without success, I’ve been given medication upon medication for symptom relief without success. So when does our medical professionals decide to proactively work to find the cause of our pain instead of treating symptoms? Of course I’ve had conservative testing which showed mild causes…. Never has a doctor approached a proactive decision to find the true cause of my pain. I’ve been dismissed, I’ve been failed, I trusted in our medical system and found the US healthcare is worse than a third world country. Europe, the UK, Egypt all have more progressive doctors that treat the patient as an individual, unlike the US treats Americans like a herd of cattle, herd’em in and herd’em out. Never did I dream I would be an American unable to find quality healthcare.
It is my mission until my last breath to make a change, to advocate for better healthcare for all Americans, to fight against our medical neglect to be a voice for all of us that remain unheard. This is not acceptable in America. We deserve better, we pay for better, and yet we receive neglectful healthcare, we receive pills instead of answers, band aids instead of solutions.
As I sit here running out of options, I’m reminded I’ve fought this fight, I will continue to fight and I pray for all of us facing neglect from our healthcare system that we may somehow band together to make changes, to get the healthcare we deserve and pay for.
To say this hasn’t affected me in every way would not be true. Physically I’m botched from surgeons only to happy to pick up a knife, promising a better quality of life. Only for them to go AWOL when complications aris and I’m not their text book success story. Mentally and emotionally I feel rejected, dismissed, failed, unworthy..Due to doctors not taking my condition seriously, being proactive, basically just sent home with more debt and no answers.
But as long as I have breathe I will continue to fight. We all deserve better!

As the night fall comes illuminating the views with shades of the sunset aglow, dancing just above the rolling mountain tops...it is now my mind begins to flow...to wonder...to dream a new day...

Hoping for a tomorrow, visions of happiness, joy, life beyond...Beyond this place I'm stuck in...

The evening seems a little quieter still, if that's even possible...only creaks of the house will I hear...

Followed by the evening sights & sounds of nature...Lightening bugs dance...Crickets chirping, rustling of the brush, with squirrels, deer, rabbits..

Nature without a hint of human existence.

The days seem to simultaneously flash by in slow motion...Into the night...

Day in day out, the phone never rings, the only time it gets its use is when I reach out to others..Or spam...

I wonder if they'll want to call when they no longer can...I wonder if they'll think of me like I think of them...I often wonder how the knot that tied us together shredded so easily after I became ill...

Was I only worthy when I was able to do everything for them? Was I only valued for what I gave and not for who I am? To them?

I often dream to be someone worthy of them, but that someone is not me...

No matter what the future holds, I know Ill always be remembered as the "woman" that loved & gave with her whole heart...and never asked for anything in return...I didn't ask, I didn't expect...

Here Im left piecing myself back together...

Without regret, learning to love myself

Love with your whole heart, not bits & pieces..

#ChronicIllness #ChronicPain #Depression #Anxiety #conqueryourmind #Ileostomy #Trauma #liveloved #Kindness #Loveothers #givegrace

Labor Day... While many families get together over this weekend (as we used to do).... I find myself longing for those days, yesterdays. Back when life was busy with our children, our family, BBQs, get togethers...Normal Life....

Time escapes so quickly, time has a way of redirecting our lives, shattering "normalcy" as we once knew. Children grow up, they move out, they move away, become independent, start families of their own...while we raise our children to become adults, the emptiness of our homes silence can become "deafening." Add into a silent home miles in between us, sporadic grandparenting, along with an unexpected illness....Our lives expectations have been redirected onto an unknown path leaving scars, trauma, loneliness, heartache, loss of everything so familiar for decades, in the wake of its path.

As I travel this journey alone, sometimes my heart just aches for yesterday. For a semblance of belonging, a sense of purpose, anything....

Anything resembling a hint of normalcy....

In a life where everything has changed, there I remain.

Pieces of me....

Scattered...

Left Behind....

Left to love from afar...

Cherishing those short infrequent conservations, lingering on every word, silently begging for a few more minutes....Of time...Time....

Time I so desperately miss......with them....

Is it truly the time I miss or the past full of treasured memories?

Memories of what was....What will never be again....

Then I sense that old familiar feeling, the creeks of this old house, the smells, the sense of wonder awaiting in this ever changing world....

My mind stops in that moment, reminding me....

Our purpose in life changes....

Sometimes without our permission yet always with redirection.....

And always on time....

This is my time... Im allowed this time to heal, to replenish all that I gave away, to piece myself back together, a reminder "Im" worthy of time... Of love....

Protection, redirection disguised as rejection...

Our minds are often fickle...More often our own worst enemy.

Guard your mind, your thoughts, what you allow yourself to believe...

Take captive those thoughts that dont serve you positively, those that dont add value, the lies.....

No matter where you are....You are worthy...

Regardless of your circumstances.....You Matter....

Even when you dont feel it.... You are loved......

#liveloved #Trauma #Ileostomy #ChronicPain #Depression #checkinonme #ChronicIllness #conqueryourmind

Sunday… A day of rest. A day of reflection.
Remind yourself of the victories over the past week; small or big.
Remind yourself to reflect on the “Big” picture.
Those obstacles we face may seem overwhelming in their entirety but….
We’re only asked to live moment by moment.
Break down your days into moments.
Future plans are great; don’t let them derail you from this moment.
Take time to do something you enjoy, even if it’s a small block of time. Get up and show up, however that looks like in your day. Show up for yourself. You deserve it! Learn to be a little kinder to yourself, it doesn’t happen overnight so take steps today to start loving yourself regardless of your circumstances.
Circumstances out of our control are inevitable. Feelings and emotions are fleeting. Find the love for yourself “outside” of circumstances, emotions, or feelings.
Never look for happiness as an end goal. Happiness is a feeling, therefore fleeting based on circumstances, feelings or emotions.
Strive for contentment; it’s permanent.
Remember the obstacles you face are yours.
Don’t allow comparison yo minimize your situation. Comparison can minimize your circumstances, therefore minimizing your feelings. Your feelings are yours and they are important!
Allow yourself to feel your feelings; we can never heal from trauma if we don’t allow ourselves to feel.
Most importantly;
Whatever your day looks like, today. Take time to love yourself a little more today. Accept “your” normal, even if it’s a little harder than your envisioned.
I’ve found the more I accept my normal…. is “not” normal, any day, the more I learn to be a little kinder to myself. Comparison brings me sadness, pain, and a whole host of emotions that can steal my entire day.
All I have is this day, this moment…. The more I realize this, the more I find contentment even in the overwhelming circumstances.
I’m broken, I’m flawed, I’m most times more than I can handle… moments are easier to move through.
Today, I choose contentment.
To see the silver lining.
To love myself.
To be a little more patient, a little kinder, and a whole lot more loving, to me.
In these times I realize, I matter, I’m important and if I don’t choose to love me…
Then who will?

As my mind goes; I will follow. Taking captive those thoughts that no longer serve me, with diligence and intention.
Alone in my mind I can go wherever I want; it’s easy to get lost. In those feelings, the emotions of what was, what I envisioned life to be…. Lost, yearning for that normalcy, that person I once was, carefree and full of life.
She is gone…
Yet her heart, her heart remains. Pure, untouched, unconditional, free to give. A gifted talent.
Surely as my heart has been broken, damaged, ripped to pieces, stripped of hope time after time; it continues on, untouched….
A heart so pure so full; continues loving those that have left it shattered.
After all these years, all these tears, all the emotions a heart riddles itself with… she just keeps giving the very best she can give.
So tonight as I look upon the stars ⭐️ I’ll think of those near and far. I’ll lay me head to rest tonight, in quiet slumber, in my dreams I’ll see the woman I used to be. I’ll remember beauty only runs skin deep…. that outward beauty may be gone…. Yet this heart,,, this heart of love beats on…..
Goodnight Moon 🌙