Hello all, I hope to talk more socially later. I just joined and have a problem, maybe another person has it too. I am Carol, my sidekick or tummy kick is A.K.A Stella, and at times A.K.A Stella Fire Queen from Hell. She has me raw. My question and also some venting too... I have a primary care doctor. For the past 2 1/2 years, I am now in palliative care. They offered it to me, explaining it is an extra layer of care, like that extra blanket. I am a 67-year-old gal, had lung cancer 5 years ago, cured to my knowledge. Presently, I have severe COPD, use oxygen 24/7, had a botched hip surgery, used some screws from Lowe's I think, and a lot of pain in my lungs, ribs, ileostomy, stomach, and my upper back feels like bees stinging me and I don't get any honey for my pain. I have been on hydrocodone 7.5 ml, 325 aspirin for 3 years and 5 months. I take it every 6 hours. I have always complied with the doctor's rules and only get what she prescribes. Now she will not fill it any longer, stating in the toxicology tests I do monthly, I tested zero twice for that drug to be in my system. I do not know why. I had emergency surgery, woke up a month later with an ileostomy. I was told I was a 15th case not expected to live. I went to rehab for 3 months, learned to walk and use my hands again. Then, I will be darned, I was home less than a month, broke my hip, back to rehab. Learned to walk again for 3 months. Well, that's my "what happened to me" story. I have chronic pain. I do my best most days for quality of life. For me, to think of quantity is useless. I am a long-winded gal. Does anyone else get zero the same as me with toxicology tests for pain meds? My GI system is very fast since ileostomy. I can't take time-release meds. They come out whole in my bag. I have had constant diarrhea for 3 years and 5 months. No meds she gives me help. I feel very ill and in a lot of pain physically and emotionally. I have terrible vomiting and severe diarrhea. I told my NP that today. He works with that doctor. I feel she has broken my trust, and the first words defined in palliative care are to attend to the patient's pain. Okay, I am done talking about it. I read all your stories, every sadness and every laughter. It does say we are still kicking, and I shake my head yes at times when I read who you are in the stories. Some I have been there, and some I applaud you for having the courage to face what you must. Be careful out there. If anyone coughs on you, shake your finger at them and get outta there. Sincerely, Carol.b
Doctors give very few pain meds these days, you might try Mary Jane, tea, weed, dope, joint or whatever else it is called these days.
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Hi cburton027, you have really been through a lot. They are really cutting back on pain medicine. I have been cut back to two hydrocodone 7.5 ml. 325 a day. My son said the other day the ones that are making these cutbacks should have some severe pain and see if they liked the cutbacks. I hope you can get the help you need. Best wishes
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I would absolutely file a complaint. The rates of false positives, false negatives, etc. are very high with in-office testing, and metabolization of drugs varies from person to person. Some people carry a genetic mutation that makes them rapid metabolizers, ultra-rapid metabolizers, and poor metabolizers. Until recently, these people went unbelieved, falsely accused, and undermedicated. If we don't stand up for the ethical rights of people in pain, these rules will only keep getting stricter and victimizing more people than they save.
If your doctor is part of a larger network, I would speak with a patient relations rep to get info on the process of contesting this. Once you're flagged in your medical chart, most of the time, other docs outside of that network can see these things too, and it could affect future treatment. If that isn't helpful or your doctor is not part of a larger network, try the clinical manager of his/her office or manager. Don't let them label you and brush you off; you have a right to have your pain evaluated and treated appropriately. I would even file a complaint with the medical board if it were me. As a nurse and a patient, this infuriates me that so much attention goes to saving people not yet addicted to drugs while ignoring the pain of very real patients today.
Hello Carol.
Thanks for posting your story and, although I don't have an ileostomy, I feel I can empathise and sympathise with your condition.
I understand it is fairly common for people with an ileostomy to have the medication go straight through their system without having any beneficial effect. If you are gettiing negative toxicology results, then it feels as if your doctor should not simply be witholding medication, but should be exploring ways to get the medication to work by trying alternative delivery systems.
This aspect has been discussed many times on this site and, I feel sure that someone more knowledgeable than me will chip-in and let you know how and where you can get some good advice for both yourself and your doctors.
I do hope that you can get this problem resolved asap.
Best wishes
Bill
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
Hi Carol! You sound like quite the trooper... that's awesome. But seriously... get another doctor... or at least a second opinion. I've met so many bad doctors that I'll leave in the middle of an appointment if I feel I'm wasting my time with the one I'm talking to. Sign the medical release form and have them make a copy of your medical records (there may be a small fee) and hand carry them to another doctor. If you like what they have to say, keep 'em as your new primary care doctor. Get yourself some quality care, girl!!!
;0)
Bob
Hi Carol, welcome to the site. I agree with what others said. You have to be your own advocate for better care. Question everything and make them explain their reasoning. Good luck.
Agree with all statements above. Most primary medical doctors are getting away from prescribing pain medications for chronic conditions. You may want to check out a pain specialist since they are more likely to keep you on the medications you need since they are looked at a little differently. That is what they do for a living. Just another suggestion. Good luck, you have been through a lot already!
Agree with all statements above. Most primary medical doctors are getting away from prescribing pain medications for chronic conditions. You may want to check out a pain specialist since they are more likely to keep you on the medications you need since they are looked at a little differently. That is what they do for a living. Just another suggestion. Good luck, you have been through a lot already!
Wow! Sounds like you've been on our friend Ritz's roller coaster!!! God bless you in hopes for healing and happiness.
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Hi Carol! I read your story and could only say life's sometimes the bitch but you seem to be a tyrant on getting through the worst. First, if you are unable to keep meds in your system long enough, some may be in liquid form or chewable. Also, if you take in more fiber foods, you would slow down the diarrhea. I have mostly watery output but not always. Eating habits play a big role in that. Some say that they can live with what they got and not care to do anything about it. As Bob said, you are a trooper! He is so knowledgeable and gives great advice! Take care and let us know what we can help with. Mike
Thank you mates for your welcome and kind and wise thoughts. I could only wish my Dr. showed just half the concern as people I have only met in texts. This is day 6 with no pain medication, I can only take Tylenol in limited amounts as my kidneys are damaged from the near-death shutdown. My plumbing still thinks I can poop so every day I have severe poop cramps but no reward for my effort lol. Has anyone tried the herb Kratom for opioid withdrawal and pain relief? I am wanting to try and little leery but I went from getting through my days, well most of them, with tolerable pain and quality time with my family who I live with since 2018 when this all happened. I came to El Paso to be with my daughter and hubby and grandchildren. My 20-year-old grandson had fast-moving cancer treated aggressively, he passed on 9/11/2018. I, in fact, was also in the hospital not given much chance to live, my poor family, how horrible it was for them both of us at death's door at the same time. I did get to hold him, they let go bedside at hospice place for a few hours from rehabilitation. Oh my, we all know where the heart goes in grief and disbelief. Oh, I do have an appointment in a week for pain management but until then suck it up I guess I am very to myself when I feel bad don't want no one around so I hunkered down in my room. I have, by the hard way, learned a few tricks for a better deal and tips. This has been a long one so I will put it short to the point if anyone interested. I had a very hard time not leaking because even though I had a flat tummy before surgery after it is two mounds one on each side of the belly button, I do not know if this is how they do it for everyone up and down right through the belly button. I fought leaks for 2 years now it is much better, fewer leaks ahhhhh what a great feeling. Ok, I will yak later now that I found you all wish I had been here sooner....maybe some say I go on a long-winded one oh no. Not always I can be to the point. Sincerely Carol.B
Carol,
I will pray for healing and relief for you! The people on this site are so helpful and kind! Use their resources and reach out to vent anytime!
Hi Carol, it sure sounds like they need to help you. For my nighttime pain, I smoke marijuana. It makes me paranoid if I do it during the day. But it helps so much for me to get to sleep. I have a little pipe, and a few puffs is all I need. It shuts down my non-stop self-chatter. It is legal in Oregon. Oh, today I went in for my last antibiotic shot for a kidney infection. I asked the nurse to ask the doctor a question, and while they were talking across the hall, I simply got up and shared myself. I told him something is really wrong, but I have no clue what. It ended with him coming into my room, and he told me if I want help from other doctors, I have to be my own advocate like I did today. Then he squeezed my shoulder, and he left. I love that guy.... he actually cares.
Thank you Gimo, sounds like you have a good doc. We know when our body is up to no good getting sick and such. Having a doctor you have trust with is so important, when the bond is broken it is time to ease on down the road and find a better one. I know I am going to. Sometimes I want to shout "I'm still standing" every good day is sweet and I'm so thankful for them. I get all I can out of one lol. Best day to you Carol
Hi Carol! So you have an umbilical stoma? I've never encountered anyone with one of those, but have read about it. Seems it had been poo-poo'd by surgeons for the longest time due to complications with the umbilical cord.....but there was some discussion of it coming back in favor around 2018....but I never followed it after that. I thought they only did that when they were sure they could reverse the ostomy........as the reversal would be invisible if the stoma was in your navel. But to answer your question........no, that's not how they normally do it. You should ask your surgeon why he did that. As for your tips and tricks.......we are ALWAYS interested in hearing those........so please share. And if you think you're long-winded.........you haven't read many of my posts!! There's no word count limit on here.........so type until your heart's content!!! It will all get read, I assure you. Looking forward to hearing more from you!!
Thanks,
Bob
Carol,
I have tried kratom. In fact, I think it's pretty darn good depending on where you buy it and what type. I'm no expert in this stuff but I would stay out of local shops, everything I got there was expensive garbage. I was very happy with the stuff I received from an online retailer called Golden Monk. Not only are they reasonably priced, but the quality, and therefore the effectiveness, is great. It's better than tramadol, in some ways and sometimes, better than Norco, but it's not as great as the strongest of pharmaceuticals. Oh yeah, and it tastes like crap so you either can take a bunch of capsules or learn how to take it as a powder without coughing it out into a green cloud everywhere lol. It's effective though and let me say I am truly sorry and deeply troubled by your experience. I would urge you to pursue matters further, but I understand when you're sick, you just have so much to deal with. You have had even more than that recently, my condolences for your loss.
Basically you want either green or red maeng da types. Red is strongest, depending on your tolerance levels and personal chemistry, it might be not enough, might be too much. I bought both so it's not too develop a tolerance to the red and I try to alternate with the green when the pain is not so bad. And like the pharmaceutical counterparts, I try to reserve it for when it's really bad. But it sounds like that's where you're at, they also ship fairly quickly. If you have any other questions, your freedom message me if you want. I wish you all the best.
There are several types for pain but for you I'd say that only green mung
I had been fighting sciatic pain for close to 2 years (they said it was from a bulging disc pressing on a nerve). They pumped me so full of dope it wasn't funny - and NOTHING touched the pain. About that time, I got the perforated colon which led to my stoma, and was on 2 courses of IV antibiotics for 6 weeks each to try to handle the infection. Son of a gun if the pain didn't disappear! It wasn't a disc in my back but an infection in the nerve sheath! Stupid pain management clinic pushing dope on me and didn't even know what was going on!
My niece was in a car accident with resulting severe back pain since. The ONLY relief she has ever gotten has been smoking medical marijuana - which does manage the pain and allows her to actually live a full life.
My hope is that you find something as well that helps with your pain, and know there's a lot more out there than just dope.