Shame on Me
/By Rochelle Odell
Why a headline like “Shame on Me”?
I have lived with Complex Regional Pain Syndrome (CRPS), an intractable and painful nerve disease, for nearly 34 years.
And I used my fear of a pain flare to avoid getting a colonoscopy.
For four years, I thought I had hemorrhoids. They are painful, irritating and embarrassing. After all, who wants to bend over for your primary care doctor to examine them?
Yes, she said, I definitely have hemorrhoids. So I let the symptoms ride.
Parts of this column are a bit graphic. However, there’s a good reason why I’m sharing them. I don’t want you to make the same mistakes I did.
In January of this year, after spending three days on the toilet feeling like I was trying to expel whatever was in my bowels (along with the bowels themselves), a large mass emerged.
I saw my doctor again and she said it was hemorrhoids that had become very swollen and were bleeding.
Coupled with my CRPS, they made my pain even worse. Pain at a level I had never experienced before. It never lets up, never.
Lest we not forget, adult diapers have become my new norm as the mass is on the rectum/sphincter, so I am now stool incontinent. Oh joy.
ROCHELLE ODELL
This is a topic rarely discussed, but once it is brought up, I learned I am not the only one. When one discusses this, I learned others also suffer from the same problems – the same pain, the same embarrassment, and the same wearing of diapers.
My CRPS pain reached a new high and, of course, my one prescribed pain medication became a joke. It's a higher dose than many receive these days, but it basically only works for 30-45 minutes before waning.
My PCP added a new glitch to my stress level, when she sold out to an insurance company and became a private equity provider. How long would her practice continue? Not long. She retired at the end of August.
Like most patients when we find a good provider, we do not want to lose them. Ever. I liked Dr. Powell a lot, and saw her for eight years. Being a black doctor, I believe all she had to endure to get where she did helped her be a better doctor. All her patients gave her five star reviews.
My first question to her was did she still have autonomy when it comes to treating her patients, ordering tests, and speciality referrals? I believe that question surprised her as few people know about private equity and fewer understand the ramifications.
She did order a referral for me to see a surgeon for a hemorrhoidectomy. Not a surgery I was looking forward to, after all it would be a whole new team that I had to bare my toosh to. So I delayed making that appointment. Shame on me.
By June, the mass I had named George had grown. I had no choice, I had to see the surgeon. He also said the mass was hemorrhoids, no mention of anything more serious. So, the surgical procedure was scheduled.
Not one mention of cancer, he hadn't ordered any scans or tests, so silly me thought I had a big, bleeding hemorrhoid.
The day before the scheduled surgery, I was given the option of drinking two bottles of magnesium citrate or Golightly, a prescription laxative. I opted for the magnesium citrate, because it sounded less disruptive to my bowels. Shame on me.
Please do what I didn't, which is read about the many adverse effects that magnesium citrate can cause and did cause in me. It is not a harmless laxative. After half the first bottle, my ears began ringing and my heart started skipping all over. It went downhill from there. I truly felt like I was going to die.
The magnesium citrate did not even do the bowel cleanse. Kept waiting for the explosion I had heard and read about. I could barely move the rest of the afternoon and my pain was creeping up.
Mind you, I haven't been eating much these last few months. I was close to 200 pounds three years ago, the heaviest I have ever been. But eating caused very painful bowel movements and I lost my appetite due to the increased pain.
I came out of anesthesia to learn the surgeon had only performed a biopsy. My pain level was approaching a 10 when he told me the bad news.
“You have cancer,” he said, matter of factly.
I learned it is adenocarcinoma, the most common of all cancers that starts in mucous membranes, like the bowels/rectum. It totally surprised, even shocked me.
My PCP had ordered the Cologuard test about three years ago, after I flippantly told her I don't do colonoscopies. And of course I tossed out the Cologuard order. Shame on me.
I was sent home after the biopsy, still reeling from the magnesium citrate, and in excruciating pain. My sweet friend Stella, who has been a godsend, took me to the hospital and back home after I was discharged. I was in so much agony by the time we got home that I screamed into my pillow.
Stella urged me to call 911 and I finally did. I was taken to my local hospital where I was treated very well, and given strong doses of IV Dilaudid to manage the pain. The ER doctor ordered a CT scan, where the cancerous mass was glaring for all to see.
Oh yeah, they had to change my diaper every hour or so, and by this point everybody and their relatives had seen my bottom. So much for being embarrassed.
I was transferred back to the hospital where the biopsy was done and got another CT scan. I spent three days in the hospital before I was transferred to a skilled nursing facility for two weeks to gain strength and try to bring my pain under control.
Both facilities provided adequate pain management including a fentanyl patch, oxycodone and Dilaudid. For those two weeks, I still experienced symptoms from the magnesium citrate. Never again.
I had to leave my pain management group because they don't do palliative or hospice care, and they would not add any additional pain medication. With how badly cancer patients are being treated these days, I was so afraid my meds would be reduced. But so far so good
Because I need a portacath for imagery tests, it took four months to get an MRI scheduled at a university medical center in my area. Then I learned a doctor changed it back to another facility where they have no one to access my portacath.
I just shake my head at this level of incompetence. I have explained multiple times why I must have it at the university medical center. I normally have no issues with an MRI, because I am not claustrophobic. But because of George, I cannot lay flat on my back and must be sedated through the portacath.
I have not fully acknowledged the cancer diagnosis. Like today, when speaking to my oncology office, I ended up crying out of frustration. These senseless delays could ultimately cause my death.
A PET scan found a couple of small growths on each lung, so I am now waiting for the appointment for a biopsy. In the past, I have had scar tissue show up on my chest X-rays due to my asthma and I am praying it's not lung cancer.
I have done my best to exclude sugar from my diet, as sugar feeds cancer. I have lost so much weight, I’m down to 113 pounds. I can't remember the last time I was this small. My body has lost almost all the fat it had, my ribs and collarbone stand out, glaring in the mirror at me.
Chemotherapy and radiation haven't even started yet, and the expected weight loss from the chemo, well, I have no idea where it will come from. There is no more fat.
Living alone frightens me now. No, it terrifies me. I had to rehome one of my two dogs, because I can no longer care for myself and two dogs.
I have a whole new set of medical terminology to learn. Patients must navigate and fight for every part of needed care, when the last thing we want to do is be on the phone daily with insurance and one's Medicare provider.
I have also learned oncologists haven't heard of CRPS, a disease known to be triggered by chemotherapy.
I am tired, don't want to talk on the phone, and believe I shouldn't have to. My friend Stella has taken over calling and explaining all the issues.
My pharmacy is causing me grief now, it won't cover my full oxycodone dose, so I spent over 20 minutes on the phone talking to the pharmacist. He isn't taking on new patients on opioids because his wholesaler is supposedly giving him grief. I told him I understand his position.
In closing, please don't be like me. Don't use feeble excuses to not get a colonoscopy or let embarrassment keep you from having your doctor examine your toosh.
What I tried to delay for dumb reasons has actually caused my pain to worsen.
Shame on me.
