The Ailment No One Ever Talks About

[SiouzQ.]

Okay, here is a long and hopefully not too convoluted post about my recent experiences with the hemmoroid surgery (plus I have nothing better to do while I am on bed rest). Here is a new twist to the sad saga I find myself embroiled in: it turns out I seem to have been labeled a "difficult patient who is seeking opiod drugs." That is making me so spitting mad on top of the physical pain I am in.

A timeline:

Last Thursday was the surgery. They sent me home with 5mg Oxy-325 Tylenol, otherwise known as Percocet, plus the usual post-op instructions, which included alternating Ibuprofen and Tylenol in between the Oxy dose, lots of Sitz baths, Metamucil and stool softeners.

I followed all instructions, but by Friday night I was in such dire pain I end up in the ER. They gave me a shot of Dilaudid and a prescription for 10mg-325 Tylenol. The higher dose helps somewhat but I still unbelievable amounts of pain, which involve (and continue to involve) uncontrollable screaming and sobbing while on the toilet and crawling in and out of a warm bath to try to ease things up. Sometimes I practically pass out from the pain and see spots in my vision. I have probably done this cycle 25 times in the last 48 hours. I called the on-call doctor over the weekend to see if they had any more advice. He said to try adding Magensium Citrate to my regime to help things along (I have religiously been drinking my Metamucil and taking stool softeners and drinking as much water as I can). Meanwhile my appetite is plummeting so I am barely eating because I don't want to add more food I need to digest to everything that I am somehow going to have to pass. Sorry for the TMI here). On call Doctor (not my surgeon) said it is a notoriously painful surgery and you just have to "get through it." So I manage somehow all day Sunday, by Monday I wanted to see my surgeon to make sure nothing was wrong so they got me in for an appointment yesterday afternoon. Mind you, logistics where I live is always a problem - with phones, with getting messages, getting someone to drive me into town, etc. It requires planning.

I saw the surgeon yesterday and she said the surgical site is fine and everything was "normal"; she told me to stop everything in my life and do bed rest (which is pretty much what I am reduced to anyway at this point. I can't leave the house, can barely stand up and move around for more than 15 minutes). She reiterated again that everything was "normal" and it is a notoriously difficult and painful recovery. I mentioned that I missed one dose of the Oxy because I was afraid that it was part of the cause of the constipation and I was going to try to start using less of it. She said don't worry about that since I am taking all the stuff to combat the constipation that often occurs when taking it. So I agreed to try the Miralax she recommended and left there with my friend who drove me into town. We went to a Walgreen's on the way out of town so I could pick up the Miralax. My friend asked if they had given me a new prescription because I will run out of the pain meds in a few days - they hadn't, and since we live so far away I called the office back to see if we could go back and pick it up the prescription (that is the only way to get pain meds anymore - a written prescription that you hand deliver to the pharmacy) I could get it filled now because I will run out over the weekend and it is a 60 mile round trip to go to the pharmacy. They agreed, so we went back down the street to the office to pick it up.

We then dropped it off at my CVS where I get all my prescriptions filled and instead of waiting for an hour, my friend needed to eat lunch so we left for a bit. By this time I am already in a lot of pain just being in the car; I can barely sit on the donut cushion and have to have the seat reclined all the way back). When we got back to CVS they said they couldn't fill it because I still had the prescriptions from the surgery and the ER. So much for trying to be efficient, so we left. I do completely understand that they are trying to crack down on prescription abuse.

By the time I got home from Santa Fe, I had a nightmarish three or four hours of alternately sitting on the toilet screaming and crying, then lying in a hot bath. Must have done that regime at least six to eight times. By midnight, I was so completely exhausted, spent and miserable I took an Oxy 10 and an Oxy 5, so for about two hours I was on somewhat on top of the pain, getting a little much-needed relief. I was lying in the dark with my phone and came across a website called "hemmoroidectomy surgery stories" and came across a whole slew of people, for whatever reason, did not tolerate the surgery well at all, and every single one of their symptoms matched what I have been experiencing exactly. So I am not the only one who is having a completely horrible time. I should add here that my surgeon said yesterday that she has never had a patient have such a difficult time with this than me.

So by this morning my boyfriend (who has been taking great care of me) is really pissed at the surgeon for lack of better aftercare from the surgery (I get the feeling that after she's done the cutting, everything else is someone else's responsibility, hence me having to go to the ER to get better pain relief because everything is supposedly "normal." So the BF called the doctor office this morning to tell them how difficult this has been for me, having me screaming and sobbing in pain, getting weaker and more exhausted, not eating, feeling like I am dying all because I need to take a dump and can't. Apparently the physician assistant (because the surgeon won't talk to us) told him I was non-compliant about taking the meds (all because of the one dose I didn't take because of my worry about constipation???) and that I had tried to take yesterday's new prescription and get it filled at several different pharmacies (which is a complete and outright LIE - my friend who drove me can back that up, as we only went to my usual CVS).

All they could offer to help me was to tell me to go back to the ER if it is that bad, thereby absolving themselves of the responsibility of treating my pain. In a perfect world, this is what I want: enough pain killer so they can do an enema and get me cleaned out without me passing out from the pain. That is really all I want. When I am in the thick of the pain I could see how dying would be a nice alternative, it's that bad.

[Teacher Terry]

That is so horrible! It’s their responsibility to take care of you during recovery. The lying is terrible and the fact they don’t care about your suffering. After reading this thread I am never having this surgery. It seems like common sense is going out the window. First they hand out meds like candy and now people in severe pain can’t get help.

[Tammy]

Do you have a stethoscope to listen to your bowel sounds? Did they listen to your abdomen? Are you passing gas? Hearing rumbles in your own belly?

These are important things to have happen - you don’t want to develop an ileus. That’s when everything stops moving in your bowels - including air. If you go to emergency again, talk about your bowels and make your pain complaint secondary. That will change their perception of you and it also is honestly the primary concern.

How long since your last BM?

[Lainey]

I am sorry this is happening to you, SiouzQ. Just a few days ago there was a protest at our state capitol by those patients on opioids with chronic pain and their family and friends. The patients felt they were being treated like drug abusers when in fact they need this medicine just to stay alive and functioning.
I know there is an opioid crisis but I'm frustrated for you and others who have to be treated as guilty until proven innocent. To have to endure all of this and to be labeled as "non-compliant" on top of that? That's worse than no aftercare at all.

[SiouzQ.]

I went back to the ER last night and luckily I got the same doctor as the other night ~ he is great! He actually really listened to me and I said it felt like if I could just get an enema to clear things out I thought I would feel A LOT better. But the ONLY way I was going to tolerate an enema is if I had a decent dose of pain killers before hand. He totally agreed, but wanted to do an x-ray first to make sure I didn't have an obstruction. The x-ray went fine; he said that actually there wasn't that much stuff to pass - not surprised, as I have barely been eating.

I got a really lovely nurse who took great care of me before, during, and after. I had to have quite a bit of pain medication, as it was absolutely excruciating. If I had waited it out like the surgeon said and had a BM on my own I feel like I would have popped open like a cork and I am quite positive I could have ended up passing out and dying way out here in Madrid with no land line to call for help. It was THAT bad.

So, I have a lot to think about when I go back to deal with the surgeon for my follow-up. And, as someone pointed out to me, her office manager broke a HIPPA law by telling my boyfriend the outright lie that I was "pharmacy shopping" for pain meds. I just might speak to a lawyer about that.

This morning I am making myself eat some scrambled eggs so I have something in my belly finally. I hardly ever lose my appetite - maybe I'll lose that damn 10 lbs. that's been evading me since I moved here. I am still pretty weak, exhausted and in pain, so another day or two of taking it real easy.

Thanks all for listening; at this point I almost feel like I am doing a PSA for Metamucil ~ drink your fiber daily so you can avoid ever having to go through this!

[catherine]

Wow. What a terrible story. I'm so glad you are finally getting a little relief.

Good advice from Tammy, also. Because pain is so subjective, when opioids are concerned, yes these days doctors are very, very suspect.

Here's a similar story: DH had a minor accident a couple of months ago. He broke three ribs, and has also been experiencing back pain radiating to his legs. The ONLY thing that relieved his pain was a combination of gabapentin and 5mg of oxycodone. He took them absolutely as directed, and in fact, saved them for when he really, really needed them--such as "the grandkids are coming tomorrow and I don't want to be in pain so I'll take one then."

Nevertheless, over the past couple of months, whenever he asked for a refill (which was 2x since November), it was the same type of suspicious/concerned reaction from the doctor. He was referred to pain management, where they said they would NOT prescribe oxy unless he had cancer but they would give him a cortisone shot.

He got the shot last Thursday, and he was literally awake for 4 nights. He'd drift off for 5 minutes or 10 minutes at a time. So I looked online to see if sleeplessness was a side effect. Mayo Clinic didn't mention it, WebMD didn't mention it, but there were fifty patient reports about how awful it has been for them since the cortisone shots.

We left a message for the doctor to ask if that was common, and he got back to us the next day, but by that time DH was starting to sleep a LITTLE more (like an hour). So we're dropping it, because we could tell the nurse was already thinking we were a little nuts.

Doctors treat over 200 patients a week, and unfortunately they can't know all the nuances of every patient. That's why I think it is so important to speak out and be your own best advocate. Don't think anything is too stupid to mention, and if you're not taken seriously, move on.

[iris lilies]

Aww, sweeite, so sorry this has been a super ordeal.

[JaneV2.0]

Catherine, check into osteopathic doctors in your area; they're trained in adjustments as well as conventional medicine.

"The difference between an MD and a DO is in the approach and focus of the medical education they receive. Both DOs and MDs need an undergraduate degree, plus at least four years of medical school. Osteopathic medical school emphasizes the whole person, and the connection between the musculoskeletal system and disease and symptoms. Osteopathic physicians cover the same curriculum as MDs at osteopathic medical schools, plus, they receive an additional 300 to 500 hours of specialized osteopathic training, studying the musculoskeletal system."

[mschrisgo2]

What a horrible ordeal! It sounds to me like you might benefit from taking a magnesium supplement. It does several things, most notably helps moves bowel routinely, and Lessens Pain. My DO calls it "natures analgesic." Whole Foods, Trader Joes's, Vitamin Shoppe, are usually a better source than the drugstore, which usually only has magnesium citrate.

I know several people who routinely take 200-400 mg/day. One was prescribed for migraines- after absolutely Nothing else worked- and it works very well to prevent them! Another for a friend with chronic back pain, another for chronic leg cramps. If we were all able to get and consume a healthy dose of greens, that were grown organically, every day all year long, probably no one would need to supplement... Give it a try if you can get some.

[iris lilies]

What a horrible ordeal! It sounds to me like you might benefit from taking a magnesium supplement. It does several things, most notably helps moves bowel routinely, and Lessens Pain. My DO calls it "natures analgesic." Whole Foods, Trader Joes's, Vitamin Shoppe, are usually a better source than the drugstore, which usually only has magnesium citrate.

I know several people who routinely take 200-400 mg/day. One was prescribed for migraines- after absolutely Nothing else worked- and it works very well to prevent them! Another for a friend with chronic back pain, another for chronic leg cramps. If we were all able to get and consume a healthy dose of greens, that were grown organically, every day all year long, probably no one would need to supplement... Give it a try if you can get some.

She doesnt need to move her bowels necause she hasnt eaten.
What she needs is mf competant health care!