Nurse Patient and Crohn's Survivor
At 17 I was finally diagnosed with Crohn's. I was misdiagnosed for one year. I was down to 70 lbs, and a priest read my last rights. After three months at Lenox Hill Hospital, I survived. After 48 years of a constant battle with Crohn's, I managed to get through 42 years of only my ileum affected. I didn't get any surgeries because I refused due to research showing it wasn't a viable solution, just a quick fix for temporary relief.
Working through the pain
I managed to marry a few times, bear five children, and successfully have a career as a psychiatric nurse, counselor, and teacher for special needs. All my years working, I spent many weeks in hospitals being treated for severe flares and needing IV treatment and bowel rest. Many holidays were spent in a hospital bed and not with my children. Many days I worked in pain, but my patients and students needed me. All was possible with medications to lessen inflammation and pain. Time went on. Then came 2023.
I get by with a little help from my meds
My Crohn's is now in an advanced stage, which was inevitable as biologics don't stop the progression of Crohn's, they only slow it down. I am in constant pain now, day and night, but it is tolerable with opioids that I've never misused or abused. But now with the crackdown on those who do abuse, misuse, and over-prescribe, I'm suffering. The availability is somehow so disturbed that patients who like me, are in chronic severe pain mode, are left to suffer.
My regular pain meds work quite well, even with a diseased small intestine, inability to eat more than one time daily, and constant steroid use. I can still function enough with the pain that sneaks through to care for my disabled teen, my 88-year-old mom, and myself. A leg amputation added to my pain, but my quality of life with pain meds was adequate.
I retired as a nurse/teacher and write full time now, advocating still for chronic severe pain patients and all special needs. I've always been there for my students and patients, but now, nobody is there for me. The War on Opioids has gone overboard, lumping all users of these drugs into one huge boat, which cut down on availability for them all. Even those, like me, who need these drugs to get through a pain that few could handle.
Month after month, my meds are not available. Pain management prescribes a new medication for me to try, and none of them work. They don't even touch the severity of pain that 48 years of Crohn's has caused, deterioration of the intestine, and a digestive system that is ready to close shop.
The pain is too much to handle
So at this time, my golden years of retirement which are supposed to be full of all those bucket list "to-dos," I can barely dress my disabled daughter, walk my dog, or avoid being so exhausted from the pain that laying down one hour here and there is all I can accomplish most days. With my typical pain meds, I can cook, clean, care for, walk, and even laugh or smile. Depression can be so bad with severe, constant pain that many days I'm ready to meet Jesus.
Opioid laws and lies
Somehow, I have hope and faith that these insane measures preventing us severe pain sufferers from obtaining the meds we need to carry on will go away. But the only meds that work for my pain without adverse side effects are still unavailable. I've been given every excuse possible: low manufacturing (false), inability to get the meds through the distributor (lies), and DEA restrictions rigidly in place (true) prevent them from getting to me.
Never mind that I still have a disabled teen and an 88-year-old mom that I care for. Never mind that now I'm at an advanced stage of Crohn's, much older, and have an amputation to deal with concurrently. Never mind that the pain obviously has worsened greatly in severity and frequency. And never mind that I haven't had one day of controlled pain in three months.
I just want to live a normal life
My mental health has declined as I attempt to deal with my responsibilities as a mom and daughter with unrelenting pain that overcomes my mind and body. All I want and need to carry on my normal day are the meds that allow me to do so. But I'm prohibited from such simple means. So I suffer, in 2023, in America, while my dog has more rights to pain meds than I do.
Something is so wrong here that it's unbelievable this is allowed.
Don't they know how much I'm suffering?
These 48 years of suffering from Crohn's and wearing that brave badge means nothing now. I've been told by pharmacies, doctors, and everyone that they have no control over it...but who does? What about my rights as an American citizen, a nurse for thirty years, a survivor, and a mom who is always advocating? I'm just left to suffer as the DEA and powers that be eliminate my rights, disregard my needs, and prevent my ability to have a life worth living.
I want to be around to see my children and grandchildren graduate, marry, and have careers, but the severe and constant uncontrolled pain is wearing my body and me down. Do they not realize what havoc this causes on the patient and family? Don't they see the cruelty in their decisions to sit back pain-free as we suffer trying to get through one more day, praying that those meds will become available tomorrow or the next day? My hope is still alive.
I got through near-death experiences with obstructions, comas, an amputation, and sepsis and still survived. However, the uncontrolled pain is what is unnecessarily enduring, and it might be the catalyst that stops me from another day.
Advocating with the strength I have left
How do we fight this? How do we get these fools to see what they're doing to us? How do we end this nightmare for so many? I barely have the strength now to fight the fools with no common sense, no statistics on what they are dealing with, and no clue what we severe constant pain sufferers are enduring at their hands. But I'm not a quitter, which is why I'm still alive.
I'll write, call, and try to attend meetings with the officials to make it clear, what they're doing is morally, legally, and ethically wrong. That's me the nurse, me the teacher, me the counselor, and me the mom who is a patient who won't give up.
We ALL have the right to not suffer and to achieve less pain by getting the meds we need to be prescribed, without interruption, excuses, and lies.
We have those rights.
How open are you about being diagnosed with IBD?