u/uncurlingthehelix

Note: I posted this on Chronic Illness subreddit a few days ago, but felt you all may have some insight too.

I have been hyperaware and quietly suffering for over a decade. I displayed chronic illness behaviors (ie. fatigue/fine motor skill issues/delayed milestones) since I was born. Sooooo many medical professionals examined me over the years to piece together what is going on and lessen symptoms with varying success.

Recently, my latest surgery brought my “invisible” illness into the physical (total colectomy with an ileostomy). Essentially, lost one organ to extend the life of two other organs. People finally believe me when I am weak, pain, etc. because it is a physical presence. They cannot deny it anymore.

My medical personnel finally agreed that a genetic test could give us a direction. For YEARS, I have begged for this. I have a hypothesis about the underlying cause. In previous decades, if you did not have the severe version of genetic disorders, people overlooked your struggles or called you a hypochondriac. If you were not missing a limb, my family said suck it up. My theory would explain a majority of everything I have felt since birth...and why my body fails me in my 40s.

However, there is another greater fear nagging and eating me alive: no negative genetic abnormalities. So many routine tests showed nothing strange. One physician said, “We might have to reevaluation if your health declines farther.” Guess what!? I lost my colon waiting for the decline. Other organs are waiting in line for the next surgery. No children. No career. Poor and drowning in medical debt. Nothing to show but pain and anxiety. The waiting longevity analysis makes sense, but it feels like you cannot act. It is my personal limbo hellscape.

It took so long to get to this point. I had to lose a major organ to valid what I have always known. Yet modern medicine and genetic testing might not know my possible mutations. I might get a negative result, but must wait for medical research to find a correlation.

I am internally screaming and having nightmares of being told nothing is happening or "wrong" to me. That my dysautonomia and immunodeficiency have no explanation. I hate the word “idiopathic.” I know that is the nature of medicine, human physiology, and biology. I accepted that there is no cure. All I want is to be believed and treated like a person.

However, laying at home waiting for a stroke, another brain lesion, sickness after illness because the immune system is failing, or losing the rest of your GI tract...I live in my own bodily purgatory.

Man, I hope the test explains over ten years of wandering in the dark.

Thanks for reading my inability to wait six weeks for...something!

I have been hyperaware and quietly suffering for over a decade. I displayed chronic illness behaviors (ie. fatigue/fine motor skill issues/delayed milestones) since I was born. Sooooo many medical professionals examined me over the years to piece together what is going on and lessen symptoms with varying success.

Recently, my latest surgery brought my “invisible” illness into the physical (total colectomy with an ileostomy). Essentially, lost one organ to extend the life of two other organs. People finally believe me when I am weak, pain, etc. because it is a physical presence. They cannot deny it anymore.

My medical personnel finally agreed that a genetic test could give us a direction. For YEARS, I have begged for this. I have a hypothesis about the underlying cause. In previous decades, if you did not have the severe version of genetic disorders, people overlooked your struggles or called a hypochondriac. If you were not missing a limb, my family said suck it up. My theory would explain a majority of everything I have felt since birth...and why my body fails me in my 40s.

However, there is another greater fear nagging and eating me alive: no negative genetic abnormalities. So many routine tests showed nothing strange. One physician said, “We might have to reevaluation if your health declines farther.” Guess what!? I lost my colon waiting for the decline. Other organs are waiting in line for the next surgery. No children. No career. Nothing. The waiting longevity analysis makes sense, but it feels like you cannot act. It is my personal limbo hellscape.

It took so long to get to this point. I had to lose a major organ to valid what I have always known. Yet modern medicine and genetic testing might not know my possible mutations. I might get a negative result, but must wait for medical research to find a correlation.

I am internally screaming and having nightmares of being told nothing is happening or "wrong" to me. That my dysautonomia and immunodeficiency have no explanation. I hate the word “idiopathic.” I know that is the nature of medicine, human physiology, and biology. I accepted that there is no cure. All I want is to be believed and treated like a person.

However, laying at home waiting for a stroke, another brain lesion, sickness after illness because your immune system is failing, or losing the rest of your GI tract...I live in my own bodily purgatory.

Man, I hope the test explains over ten years of wandering in the dark.

Thanks for reading my inability to wait six weeks for...something!

So I am over a month out from my total colectomy. For a long time, I slept on the couch because I was leaking constantly. I used bag covers first, but it does not stop the bag from twisting as I move. I found a neoprene band that works great while sleeping in bed and catches anything that leaks. Alas since neoprene does not breathe, I sweat across my abdomen, which caused a stoma yeast infection that spread throughout my entire abdomen.

My house does not have AC (only fans and a window unit that is not in the bedroom). My other medical issues can make me sweat randomly, even on colder nights. I fear I will have this yeast infection all summer unless I find another nighttime ostomy plan. I only sleep on my back and right side now because lying any other way causes my filling ostomy bag to shift and twist while I sleep. I have not slept well in a week because I wake and worry I have a leak.

What are your nighttime routines that avoid:

1. Twisting a filling bag while you sleep

2. Sweating under an ostomy band/belt

3. Handle gases as you sleep (my filters get blocked and turns the bag into a balloon...leading to leaks)

I placed a liquid-repelling barrier on my mattress that has worked wonders, but my primary issues are the filling bag twisting and tugging on the wafer.