In May I met–for the last time–with my pain management physician. He refilled all my medications and told me which physician I’d be seeing until he gets set up somewhere. This was now not a certainty as I’d been led to believe before. Now he may or may not continue his practice elsewhere, and I’m somewhat concerned. I take the scripts and bid him farewell.

Thirty days later it’s time for a refill. I don’t have a treating physician anymore. I call the office and they arrange for a one-time 30 day refill of my medications in exchange for a urine sample. Apparently it was horrible of my previous physician to simply trust me and not require urine analyses (UAs) in the past, and some more stuff about why he’s a bad doctor and I should stay there. I’m told to make an appointment with the new physician. The appointment was 52 days away, and I had scripts for 30 days.

Thirty days later it’s time for a refill. I call up and this time I’m told that I’m not allowed a refill. Why not? Apparently it was “made clear to me” that the previous script was a “one-time thing” (which it wasn’t [made clear to me]). I was supposed to get an appointment before those scripts ran out! Wait, I did make an appointment. It was 52 days away. How am I supposed to get one 30 day script when my appointment was more than 30 days away? Well, according to “the system” my appointment was “just created” (likely because someone modified it or something and it changed the date it was edited) and that means I didn’t make an appointment and it’s my fault. I go in and they decide that, for yet another urine sample, I may obtain 14 days worth of my medication. Except that you can’t fill 14 days of fentanyl patches because they come in boxes of 5 and 14 days would be 7 patches and they can only fill them per box, so they only give me 5. I tell the office this. When my urine comes back “clean” they give me another 30 days.

Not quite thirty days later is finally time for my appointment. I come in for my new physician, the one that’s been writing these scripts, and the first words out of his mouth consist of some FUD about my current treatment being all wrong, and it’s very wrong for someone as young as me to be on “two hardcore narcotics” (he specifically and repeatedly used the word “narcotic” over “opiate” or “opioid”–both of which are more appropriate for medical professionals–because “narcotic” is a scary-sounding word) and instead I should look into permanent back surgery. I argue that I have no surgical options given my condition and that I’ve already had every interventional procedure that I could have. He tells me of an orthopedic surgeon I should immediately go see for a second opinion. As it turns out I know this orthopedic surgeon. He referred me to pain management–to the very office I am currently sitting in. When I tell him this I’m still instructed to “go back” to get new radiographs and with new radiographs, a new opinion on surgery. The surgeon had before told me the only thing he could offer me were spinal fusions. I turned him down given my age, which he agreed with, and he sent me to pain management which he deemed, in his own words, “the only reasonable next step.” Two years later my only reasonable next step is backwards, it seems. The new physician continues to try to alarm me about my current treatment, telling me that my medications are “dangerous and addictive.” I tell him I’ve been on them off and on for four or five years and have yet to have any issues with abuse or addiction, and that every UA he’s ordered on me has come back pristine. He tells me that narcotics build up in the body and always eventually cause addiction and that they’ll make me sleepy and surely I must be intolerably constipated and throws in every other classic opioid side effect, trying to get me to admit that there’s a reason to discontinue the therapy. I tell him no, the only side effect I even notice is constipation and I simply have a fiber bar or two every day and don’t even notice the difference. He’s angry, realizing that I’m actually educated about my condition and the treatment and ties up the appointment by telling me I have until August to find “other options” before he discontinues my medications.

One of the best parts of this whole thing is that when I first got there a resident finishing up her fellowship came in and talked to me first. After she went through everything she agreed with my current treatment and, after asking how it was working, thought I should increase my fentanyl dose (which I’ve been wanting to do for months). When the attending came in and shot down all that with his bullshit, she looked rather put off and disappointed. I don’t know if she was disappointed because he didn’t agree with her and thus she must be wrong, or because he was being so obviously obtuse about my treatment and there was nothing she could do to help me. The best part of this was that his own Fellow disagreed with him and thought my current treatment should stand. I liked her. She was a very nice lady. I’m sad I’ll never see her again.

Currently I’m waiting for some results from various tests I had with my rheumatologist. He’s a very smart physician. While he doesn’t know exactly what’s wrong with me (he suspects an extremely mild non-specific “type” of Ehlers-Danlos Syndrome, but it’s a wild shot) he told me he was positive it wasn’t progressive osteoarthritis, which is what my pain clinic has been telling me for two years. They also tell me it “just happens,” even to males in their early 20s. I’m also expected to see the orthopedic surgeon that originally referred me to the pain clinic in the first place. I’m not totally sure I’m going to do this, because I don’t see the point. I’m not going to have surgery, and the last time I saw him my options were “surgery or pain management.” Guess which one I chose.

Monday I’m going to talk to my primary care physician about what she could do for me if I lose my medications. The Monday after that I’m going to get the results of all my rheumatology tests, and maybe have an answer and even treatment. If all of this fails, come August I’ll have no answers and no pain management. I will have to quit my job, move home to St. Louis, and try desperately not to curl up into a miserable ball of existence, wondering why I should continue to bother to live.

According to various medical texts, the brain is not designed to be in pain for a long period of time. In fact, the nervous system in general is not designed to send “pain signals” for very long at all. As such, when chronic pain happens often times the neurons that send these signals “learn” to get better at sending them, in the way that your brain learns for memories. A common myth is that people exposed to pain frequently have a higher “pain tolerance,” when in fact the opposite is true. The more often you’re exposed to pain, the more adept your nervous system becomes at sending pain signals. If the same neurons send the same signals for long enough, something called neuronal plasticity happens: in laymen’s terms, those neurons physically change themselves to permanently transmit pain. There is no definitive way to tell when something like this has happened to someone, but it’s a good bet that when all interventional procedures such as disconnecting the nerves themselves (rhizotomy) still fail to provide pain relief, you have this situation. This is bad. There is no way to reverse this process. Your body is now in constant pain. In medical terminology:

Under persistent activation nociceptive transmission to the dorsal horn may induce a wind up phenomenon. This induces pathological changes that lower the threshold for pain signals to be transmitted. In addition it may generate nonnociceptive nerve fibers to respond to pain signals. Nonnociceptive nerve fibers may also be able to generate and transmit pain signals. In chronic pain this process is difficult to reverse or eradicate once established.

Being in constant pain is not only–you know, painful–but it also wreaks havoc on your body. People with high-intensity chronic pain have significantly reduced ability to perform attention-demanding tasks. Pain appears to strongly capture the attention of people with chronic pain; tests assessing the ability to attend show poorer performance than pain-free people on all tests demanding attention. The exception is found with tasks that are highly demanding of attention, where performance between the two groups is equivalent. In experimental testing, two-thirds of individuals with chronic pain demonstrate clinically significant impairment of attention independent of age, education, medication and sleep disruption. Individuals with the highest levels of pain showed greatest disruption of memory traces, suggesting that pain diminishes working memory.

Now that I’ve gotten some of that out of the way, I have another story about physical medication side effects. Last week I was at work. I work some two hours from my home. Right before leaving, I went to use the bathroom but found it difficult to urinate. I didn’t really give this much thought because I’ve had a “shy bladder” for close to a decade. It’s always been stressful and difficult for me to give urine samples for job applications or other reasons. I left work and when I got home a few hours later, I was still unable to urinate. This worried me. Since I usually get home late I tried a few more times and went to bed. When I got up in the morning and got to work I found myself still unable to urinate. At this point I was still leaning toward a shy bladder and figured that if I drank enough I could sort of force it out. This is the technique I use to give urine samples. A few hours later I was very much surprised to find that this didn’t work.

After consuming a large amount of fluids I felt as if my bladder were going to burst and I was in quite a large amount of pain and discomfort. I immediately ran to the bathroom where I was still totally unable to urinate. I realized at this point I had an emergency condition on my hands and tried to convince my carpool to start heading home immediately. By the time they had gathered their things I realized there was no way I was going to make it two hours back home, and decided to run to the hospital across the street from work.

Upon walking into the ER I told the triage nurse I hadn’t urinated for 22 hours and I was in severe discomfort. After a quick sign in with a list of medications and allergies I was rushed off to a room where she quickly (and not as horrifyingly painfully as last time) inserted a Foley catheter where she promptly drained close to 950mL of urine (a normal liquor bottle is 750mL). I felt much better. After a discussion with the physician about the possible causes he was leaning toward my pain medication, as opioids are a frequent cause (but individually rare (less than 10%) side effect) of urinary retention. After a urine analysis (I didn’t have trouble giving a sample this time–it came out of a tube), blood work, and a couple of non-contrast abdominal and pelvic CT scans all came back normal I was told the most likely culprit was the “vast amount of narcotic medications” and advised it would be best the catheter stayed in a few days. I was not entirely happy with that verdict. As I limped out of the ER (and when you’re a male with a tube up your penis, you limp) I was picked up by my carpool and taken home. After a few days of being told my PCP wouldn’t take out a catheter in the office and to go to the ER I realized I could either spend five hours at the bottom of the ER triage or I could take it out myself. I cut the injection port and let the balloon deflate and gently removed it without issue. Within a few hours (and since) I have been urinating just fine.

This story is obviously personal and represents a few things. The physician determined my situation was a side effect of my pain medication and so informed me in such a way as to say “maybe you shouldn’t be taking those medications.” Well, doc, I’d love to not take these medications but without them I can’t function due to Intractable Pain. Maybe if I was on Disability or some other form of I-don’t-work income I could try it and see what happens, but I have a job and a family to support with that job. So firstly it represents bias against people on pain medications, once again. This is a psychological (or maybe even social) side effect of pain medications. Friends and family may shy away from you because you’re on “narcotics” or worse, assume you’re an addict because you’re dependent. I’ve written extensively on how these differ, but the laypeople just fail to understand. There have even been episodes of Intervention-style shows on television wherein a chronic pain patient was accused by a weeping family of abusing their medications and being an addict. A lot of times on these shows it’s true: they’re quite obviously addicts; however, more than once I’ve seen a pain patient taking their medications as prescribed and enduring their side effects only to have this taken as “addiction.” What’s worse is that I’ve seen these legitimate patients forced into rehab more than once because of a bias against medication.

We are sick people. We are sick people with a serious disease. We have pain that’s caused by a disease or is a disease in and of itself. We take medication for that disease, and we withstand the side effects of both that medication and that disease. My only problem is that some of those side effects are man-made, and in a reasonable and educated world should be put to rest. Educate yourselves.

These people are from a secluded farming town in rural Illinois, near the St. Louis Metro East area. They don’t know anything about anything remotely medical. If their back hurts, they take Benedryl and go to sleep (or become alcoholics). These people only see narcotic analgesics when someone’s passing around some Vicodin along with the joint of marijuana. It only exists for people to take and feel good on. As far as these people are concerned, it might as well be beer for all they care. The first couple of guys told me “we all have aches and pains” and another mocked my “poor little back pain.” I gave them the benefit of the doubt and carefully explained what degenerative facet disease (or “facet syndrome”) is and what it does to you, and what foraminal narrowing (or “foraminal stenosis”) is and what it does to you. I explained it to them calmly, and with no anger. What do you suppose I received in response?

You need to see a doctor. You need help. It’s okay to admit you have a drug problem. Someone will help you. The pain can’t be that bad! The pain is from the withdrawal!

That was a summary of a couple of them… well, the nicer ones, and;

You’re just a junkie that doesn’t want to admit it. No pain can be that bad that you have to go and trick these doctors into giving you drugs all the time. You’re probably crushing them and snorting them or shooting them up. Show us some pictures of your arms, you dirty junkie.

that’s a summary of the vast majority of them. Why is this? Why are people more likely to believe you have a massive drug problem than a simple medical condition? In the world of the chronic pain patients we are used to being looked at with suspicion because of the narcotic analgesics we use every day to control our pain. Most of us are used to this prejudice; however, today I discovered another prejudice that I realized I’ve often been the victim of: not believing the intensity of the pain. I mean, it’s a no-brainer, it happens all the time–sometimes almost every day–but you explain it’s a serious medical condition that employs an entire field of study for specialist physicians and other medical professionals and the seriousness of the matter can usually–at that point–be somewhat understood by the general population. However, there’s always that group of people out there that will never believe you. No matter what’s medically wrong with you, there’s no possible way on earth that you could ever have pain that you can’t just get used to, or grin and bear. Like I said: these are tough farm boys, after all. The only time they’ve seen opioids is when someone’s passing around some Vicodin along with the joint of marijuana. It only exists for people to take and feel good on. As far as these people are concerned, it might as well be beer for all they care. They have no idea that heroin–a drug that has been demonized as to be the worst possible thing anyone can take because they’ll end up on the streets as a junkie–is an opioid, just like that Vicodin they use to relax from time to time. In small rural farm towns like this the drugs of choice tend to be alcohol and tobacco. When it comes to illicit drugs things like cocaine and even (or sometimes especially) meth are soft drugs, go ahead and have fun with them. For the most part, these people would never consider doing heroin–despite the fact they’ve all had a narcotic at some time or another.

The only extremely sad part about this particular conversation is that I went to school with most of these people from ages five through fourteen. Some of us were close friends. These people should know me. These people should be able to be entrusted with the knowledge of my medical condition. A few years out of town, and you’re a dirty junkie. This is why we, as a minority group, tend to not tell most people about our medical problems. It’s not a big deal to tell someone you can’t eat that because you’re diabetic and have to shoot insulin after every meal, but it’s a big horrible thing to tell someone you can’t do something because your pain limits your abilities and you have to take narcotic analgesics after every activity. Suddenly it’s no longer just a medical condition, but you’re a drug addict that’s totally faking it. When no one’s watching, you run and dance and play and do backflips, but when someone’s watching you break out the cane just so people will feel sorry for you.

If only.

Opioids are well known for causing constipation as either as an indication (loperamide) or a side-effect, as was my case. Opioid-induced constipation, or OIC, is frequently noted as requiring active prevention or it can be severe. Severe is an understatement.

When I originally started using opioids for pain I noted that, while morphine and thus codeine both caused severe constipation (requiring enemas), semi-synthetic hydrocodone (Vicodin®) did not. For a long time I used only hydrocodone to manage my pain and didn’t pay any attention to constipation because it rarely occurred. I also had low incidents of constipation when I switched to oxycodone (Percocet®) and methadone. After a while on methadone I’d have hard stool, but nothing too severe. It was nothing at the time because I had just come off morphine, which was far worse.

When I switched from methadone to fentanyl (Duragesic®) I figured since it too was a synthetic opioid and thus far I’d only had problems on natural opiates I didn’t worry much about constipation. I should have. My stool usually consisted of extremely hard nuggets and I rarely had bowel movements (maybe once a week). I tried taking low doses of docusate (Colace®) to help, but it wasn’t enough.

One day at work I tried to pass a piece of stool that was not only hard, but far too large to pass. After some severe pain I diagnosed myself with a fecal impaction. I left work early and went directly to the emergency room, as a bowel obstruction is nothing to play with.

While waiting an agonizing three hours to be seen my bladder seemed to get fuller and fuller, and yet when I attempted to urinate I couldn’t. I frequently have this problem in public situations (shy bladder), but I had a nice private bathroom all to myself and still couldn’t go. I knew something was up. When I was finally called back and got a room the physician that saw me concluded I was correct in that it was a fecal impaction and she manually attempted to break the large chunk of stool up by shoving her fingers up there and beating at it. This was, as one might imagine, less than comfortable. I thought this would be it, though, so I endured it and tried to used the restroom to no avail.

Next, the nurse prepared a large enema. I figured this would do it, since they had worked for me in the past and the large hunk of stool was no longer an obstruction (or so I thought). During this entire time I was becoming more and more uncomfortable due to my bladder being extremely full and I was still unable to empty it. I went through four very embarrassing enemas and runs to the bathroom from a largely incompetent nurse (I never saw the physician again until I got her $1,300 bill for the three minutes I had seen her).

Eventually I concluded that nothing was going to work while my bladder was so full. I told the nurse I thought my bowel was blocking my bladder from emptying, and vice versa. The nurse refused to consider this and tried to continue fruitlessly administering painful enemas. I told her to catheterize me, and until she did I wouldn’t allow anymore enemas. Eventually she talked to the physician and brought in a catheter. Now, let me tell you friends, being catheterized with no anesthetic and no pain medication (because I was honest with them about my medications, they refused to administer further pain medication despite my obvious suffering) is an extremely painful experience. It’s definitely a ten on the pain scale. After I was catheterized, they collected just over a liter of urine within five minutes. About five minutes later, I passed the still-huge hunk of stool and went home. As I had predicted, my huge colon and my distended bladder were preventing each other from emptying.

I spent the next two days recovering. I was in extreme pain from writhing around and tensing up every time they shoved a tube in either side of me. I was given no prescriptions upon discharge. I just had to ride it out, just like I had to ride it out under their care.

There are many lessons in this graphic story I’m sharing with you. The main point is that, don’t trust medical personnel just because they’re there; that doesn’t mean they’re competent. I spent over six hours in that emergency room and I have no doubt I would have spent another six had I not diagnosed and treated myself. Another is to stress the perils pain patients have to go through. I was suffering a painful condition caused by my pain medications, which I require to function in society. Despite this, they only saw a guy that was having a known side effect of opioids, and they never looked past that. They never saw the pain patient, they saw the opioid user. On this basis they treated me with no respect, likely assuming I was abusing my medication, and also refused to administer further opioids during my stay. Any other person with a fecal impaction that wasn’t caused by chronic opioid use would have received IV opioids for pain relief. No one should ever have to have a large, hard rubber tube shoved up their urinary tract with no analgesia.

Today, I’m very proactive about my bowel regimen. I take much larger doses of docusate and I’ve also changed my diet to include more veggies and less red meat. I also take in regular amounts of fiber, and my bowel habits are fairly normal.

So, even though my back pain is being treated, I was not treated for the pain caused by my medication because I was on such taboo medication. Shame on every medical “professional” I encountered at that hospital. Not only did they prejudge me and treat me stereotypically, they didn’t even fix the problem until I diagnosed and prescribed the treatment myself!

Doctors are sadists that like to play god and watch lesser beings scream.