WOW...where do I begin again?
I'm ALIVE. That's a start, I suppose, though I feel like Lazarus. I've missed being here with my CP PEEPS.
Looks like I've missed a lot happening here, including new members and such. I want to first extend a warm WELCOME to all of you who arrived here via the Pain Train. It's a bitch of a ride that none of us chose to take. It's a comfort to know that we're not alone in this. We can lean onto each other for information, support and the much needed distraction. I personally seek the humor in all things...even my own health crisis. Laughter, even macabre, is the BEST medicine...
Soft toilet tissue is a close second!!!
Some of you know that I was hospitalized for almost half the month of October. Good news is that I'm gonna live. Bad news is that I've got to continue to live "with" it. My long, laborious life in pain is detailed in my threads and posts, so no need to repeat. I believe it's important to say that I believe my pain specialist's negligence caused this latest round of agony for me.
OPIOD INDUCED CONSTIPATION seems to be the "trending topic" of the last few posts. Perhaps my experience can HELP to answer some of your questions. My PM doctor was made aware on day one that I battle constipation
without opiates. He chose to ignore this, claiming he'd never heard of Linzess. Most recently I'd asked him about Movantik. His response was "too expensive", which it is but WTF am I supposed to do? Not his problem, obviously. Since I have no script insurance, my GP had me taking Miralax twice daily. I also took Senna softeners and laxatives.
BEWARE...both the Senna and the laxatives have damaged the mucosa of my colon.
I sought help through the ER twice, writhing in pain in my left side (to back). I was sent home the first time after a CT scan that revealed, and I quote "a colon full of stool and a bladder full of infection". I spent the following several days taking massive amounts of softeners, laxatives and enemas seeking relief. I had a partial bowel obstruction in my transcending/decending colon that I COULD NOT move. It felt as though something inside me was about to rupture.
The second trip to the ER included contrast dye with CT. The doctor admitted me for IV fluids and attempted to move the obstruction with bowel prep meds. I was in SO MUCH pain, but refused opiates because well you know...They make constipation worse. I was given Toradol in my IV, which helped me to endure the agony. The GoLyte, Magnesium Citrate, etc. blasted the blockage at a snail's pace. It looked like surgery may become necessary to avoid colon tissue death. Thankfully, surgery was avoided for now.
I was transferred to Baptist Hospital 2 hours away after 6 days in local hospital. My GI docs needed to do a plethora of tests and "emptying" studies, both upper and lower GI. The barium contrast causes constipation BTW, something I truly didn't need. I'm only now feeling like I've birthed all of the barium babies...maybe. No cancerous lesions or tumors were found inside my bowels, which I am ever so thankful. However, my colon was tattered, battered and heavily bruised from sub-human DISTENTION. It's still not healed, but it's much better. Although I have extensive bowel/bladder issues from trauma and subsequent surgeries, namely a crimp/twist in my left colon...It's plain to see that the opiate trials through PM made this MUCH WORSE. I've not taken the Oxycodone since this latest episode. I can't risk another obstruction.
YES...HELL YES, I need pain relief but I also need my bowels to move once in a while. Tough choice, huh? I knew this. That's why I steered clear of opiates for decades. I used Darvocet for minimal relief (and side effects of constipation) for decades until it was banned. I'd still take Darvocet if I could get access to the real McCoy. I digress. For now, I've got to white-knuckle through my spine/joint pain and endo pain with nothing more than Motrin.
My GI insists I MUST take Linzess 290 every day of my life, with Miralax at night. He told me to STOP ALL SENNA and laxatives before it destroys the lining of my colon. I told him that the cost of Linzess @ $300 per month will destroy my budget. He gave me some samples and told me to FIND a way to afford it.
smfh
BTW, I think Movantik is even more expensive, running upwards of $400 per month. As for me, the Linzess 290 is inducing bowel movements of some degree (daily) which is not something I've had for 20+ years.
Of course, though, I said I'm not taking the Oxycodone for about 3 weeks now. I never took the full prescribed dosage, because I feared the consequences. I've typed endlessly about my feelings on the subject. I've just never felt Oxy IR was right for me, personally. I need ER version, but unsure about ability to absorb ER Oxy form. Again, my PM "specialist" is a terrorist dick. Otherwise he could "manage" my pain without shutting down my bowels.
I still want to try the CBD/THC products for chronic pain. FUCK ME, because they aren't legal here. Yes, I tried smoking some herb but couldn't function and still felt equal pain. I want to try the oils or tinctures, but I can "want" in one hand and...
I need to stop my babbling, but let me get on my soapbox first...I was SO low physically and emotionally while hospitalized, my husband said he could see death in my eyes. Yep...I gave up. I watched the nurses method of administering meds through IV and considered shooting a vial of air into my vein. I just want the suffering to end. I feared urban legend wasn't accurate, and I'd survive, perhaps in a vegetative state. I've always kept a plan of exit tucked away "just in case" existence became too painful to bear. Macabre, but it comforts me to know that I can end this on my terms if need be. I share these thoughts because I feel that others certainly share these thoughts of exit when the pain is intense and never-ending. I know, it's a permanent solution to a "not so temporary" problem.
Yet we must soldier on, my fellow CP PEEPS. We must advocate for better treatment of our pain. I must say it's a war on CPPs...We stand little chance of empathy rather than the profound APATHY that is evident in the eyes of medical personnel. I try to refrain from painting all doctors with a broad brush of generalization. I wish they would return the courtesy for us pain patients.
Apologies for the long post and rant. I empathize with those of you who are battling cancer or have loved ones who are. It's a vicious beast. I appreciate all of your messages, emails and posts for me during my absence. I want all of you to know that I'm here for you.
Y'all mean a lot to me. I hope each of you are keeping warm and feeling at least some "relief" from pain.
((HUGS))
Sorry for the graphic description of "pelvic" pain. I can imagine how it'd make you wince and cross your legs!
YOO-HOO...Anybody home?
