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  • Oral Pain Meds Not Well Tolerated! Is there a better way?

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    Old 08-19-2013, 09:23 PM   #1
    KibblesnBits
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    Oral Pain Meds Not Well Tolerated! Is there a better way?

    Hello Everyone,
    ANY thoughts would be very much appreciated in regard to my situation. I'll give a brief synopsis of my history. I am 19 years post surgery to remove all female reproductive parts due to Stage 4 Endometriosis. I have recently lost both my PCP and my cancer surgeon/gynecologist to retirement. I am once again beginning my journey seeking a comprehensive new team of doctors that hopefully can treat not only the abdominal/pelvic pain, but also debilitating joint pain in my neck, back, hips, and knees resulting from massive bone loss, and degenerative bone disease.
    My question is this: Is there a delivery system of medication that can bypass my restructured "stomach pouch" (1987 gastric bypass forever altered)? My experience thus far is than any med strong enough to relieve my pain, causes extreme distress/pain/vomiting as it enters my "pouch". So, I had basically given up, until today.
    I saw a new gynecologist specializing in endometriosis. He performed the vaginal/rectal exam, then sent me for vaginal ultrasound and lab work/blood chem panel. I won't have results til the end of this week. My husband asked him to do something for my pain, as we had a 2+hr drive home. I asked him about the possibility of suppository pain med or transdermal delivery. He said he wasn't "licensed" to prescribe those. He could, however prescribe "Butrans 5 MCG/HR patches to last me until I can get appointment with the pain management clinic back in my home state. A BOX OF 5 PATCHES COSTS $400! Who can afford this, even if it happened to be the miracle drug? I can't. Plus he said the strength is equivalent to the Tramadol I'm already taking. W-H-A-T??? If the Tramadol were working for me, I would not have needed to see new doctors/seek pain management. He mentioned "Fentanyl", but said he was not licensed to prescribe. My head is spinning. Must I suffer forever because it seems no one is willing to work with me? Meanwhile, I was in so much pain when I left his office from the probing, etc., it was difficult to walk out to my car. I couldn't have made it without my husband's help. Both of us are once again saddened and sickened that today's costly and painful trip left us dazed and confused. If you have thoughts or suggestions, I'd love to hear from you.

    Last edited by KibblesnBits; 08-20-2013 at 10:04 AM.

     
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    Old 08-19-2013, 10:56 PM   #2
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    Re: Oral Pain Meds Not Well Tolerated! Is there a better way?

    I am sorry you had such a bad experience today. Unfortunately more and more doctors are no longer prescribing narcotic pain medications because of stricter oversight. I suspect that may be the case with this doctor (as this was not my experience with him in the past). However, most doctors, even pain management specialists, are unlikely to prescribe narcotics on a first visit, and I can't imagine any that would jump to fentanyl patches or morphine suppositories without first trying other medications and modalities. I am a bit surprised that the doctor didn't offer a limited prescription for something like norco, but perhaps he felt that would be a problem in light of your stomach pouch?

    Did the new doctor offer any encouragement or treatment suggestions? Is it possible that he can recommend a pain management specialist or even an internist willing to prescribe pain meds?

    I had no idea butrans patches were so expensive!!! Was the cost so high because your insurance refused to cover them? If so, you can ask the doctor to contact them for an override. If a doctor insists that a particular non-covered drug is the only one to help you and there is no viable substitute, insurance companies will sometimes change their ruling and pay for a medication. You might also investigate if the manufacturer offers any sort of patient assistance program. Check out the "sticky" "Do You Need Help Buying Your Meds" at the top of this board.

    If you can get the insurance company to cover the patches, they may be worth trying. Our bodies react to different drugs in different ways, so even if these patches are the same strength as tramadol, because it is a different drug administered in a different way they may be more effective.

    You are obviously dealing with a great deal of pain and frustration, and my heart goes out to you. This can be a hard journey and from reading some of the stories on this board - and including my own - it seems it can be a long one. My best advice is be your own advocate and research like crazy.

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    Old 08-20-2013, 01:01 AM   #3
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    Re: Oral Pain Meds Not Well Tolerated! Is there a better way?

    I'm sorry you had such a frustrating experience after such a long drive, which I know increases the type of pain you have. If the abdominal/pelvic pain is the worst, especially if accompanies by bladder or bowel symptoms, I would consider having a laparoscopy to check for adhesions (scar tissue binding up organs). If present, the adhesions can be cut (lysed) and that can relieve pain. Pain from multiple sources is cummulative, so getting rid of one source or diminishing it can have an overall good effect. I am not a pain med expert, but you might research pain meds taken sublingually (under tongue) as well as transdermal. For the back pain, if disc herniations are present, epidural steroid injections can help. For the osteoporosis, are you on a medication given by injection like Prolia or Reclast (IV)? I would assess each pain separately and consider what can be done for it besides medication, in case there is another alternative for treatment. I hope you find a good Dr. who is compassionate and helpful.

     
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    Old 08-20-2013, 05:57 AM   #4
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    Re: Oral Pain Meds Not Well Tolerated! Is there a better way?

    I'd definitely see a pain management specialist. If you can't get any of your doctors to refer you, you may have to seek on our on your own. Most non-oral meds are of the stronger variety (fentanyl patch, or injectable or suppository meds like morphine or dilaudid). The Butrans patch could be an alternative, but like all these meds, its only if you have chronic constant pain which hasn't responded to non-narcotic treatments.

    A pain doc and your gastric bypass doctor should work together if they wanted to prescribe you pain meds. Yes Butrans is expensive (brand only). You may qualify for assistance from the manufacturer if you are low income. Also, its max dose is very weak in the opiate scale, although everyone responds differently. The manufacturer says to only use Butrans in patients on less than 80mg/day of morphine. Butrans can also make treating acute pain more difficult, as it blocks other opiates. Best wishes.
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    Old 08-20-2013, 07:29 AM   #5
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    Re: Oral Pain Meds Not Well Tolerated! Is there a better way?

    I'm thinking that the GYN probably can only prescribe CIII and not CII which is probably why he offered you Butrans. Its the only CIII med that comes in patch form.

    With your pouch, I imagine you have trouble absorbing most meds in pill form, but when you get into pain management, oxycodone also comes in liquid, so that also may be an option for you, especially if you don't need medication around the clock. I'm not saying that you don't have pain around the clock I don't have that kind of pain, so i don't know your needs, I'm just throwing out some idea's that might help.

    Good luck and let us know how things go for you.

     
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    Old 08-20-2013, 09:42 AM   #6
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    Re: Oral Pain Meds Not Well Tolerated! Is there a better way?

    Thank you for your posts. I really need someone to talk to. I don't discuss my issues with even my sisters (3) because they just don't understand. I wear the mask of "I'm fine" when I am able to do so, but crash into darkness on days that it's unbearable. My sisters are aware of my surgeries and suffering, but have never been ones to "show up" for support. BTW My mother is 87 years old and resides in a living center post hip replacement in 2005. Since I have her POA, I had to agree to "put" her there before her orthopedic surgeon would perform the hip replacement surgery. Thankfully, a brand new facility had just opened its doors less than 15 miles from me (less than 2 miles away from my sisters) They rarely visit her. I am "on call" 24/7. I say all that to say this. I have to find a way to treat my pain, not only for myself, but for those who depend on me. I apologize for rambling, as this is not the place.

    ANY and ALL information that you all can provide to me will be helpful. I cried myself to sleep last night. I went to the new doctor in Memphis with the lowest of expectations (learned behavior based on experience). Still I was disappointed. My husband is hopeful this will lead to the help I have so desperately needed for so long. (My retired GP delivered me from the womb, and continued to deliver me from the pain of bone/joint disease and belly/female problems. He "put Humpty back together again" after my gastric bypass, 3 female surgeries, and 2 hemorrhoid surgeries. He was a caring man who did ALL that he could to decrease my agony. When my needs were beyond the scope of his abilities, he referred me to surgeons. For the most part, surgeons were DONE as soon as the incision was sealed. The bariatric surgeon saw me only once @ 6 week follow-up. I had traveled 6 hrs. and had to be "carried" into his office. He did NOTHING. I returned home to my GP once again to spend 9 days in the hospital, with IV fluids, suffering malnutrition, ketosis, and dehydration. That was my life for 3+ years following the gastric bypass in 1987. Yes, I lost 140 lbs, and have kept the 100 off for 26 years now. But I also lost my health and well-being. By the time I began to adjust to the bypass, several years down the road, I was crippled by the pain of undiagnosed endometriosis. Again, it was my old faithful GP that found it, when 7+ "renowned" gynos could not. And it was he who rushed me to Ochners Research Center in New Orleans when I suffered liver failure (endo lesion blocking common bile duct) in 1994. After the oncologist performed my 1994 surgery (open abdomen from breast bone to pubic bone) to remove stage 4 endometriosis, and clean/dissect lesions and adhesions of vital organs...it was back to my GP for pain relief and "quality of life care". His retirement "celebration" @ age 86 was more like a "wake" for his many patients in our community. I still cry because I don't have him to call...to help me. He was the last of the Mohicans, so to speak...having since been told "the days of Dr. M are long gone". No "single physician" is going to treat all of your problems. Maybe not, but even an ensemble needs a maestro.
    Oh, Lord...I'm still rambling. I'm just so lost and defeated right now. I'll try to get back on point. The new gyno/surgeon in Memphis yesterday seemed "frenzied"...caught up in mentoring/teaching @ UT more than in my needs. I had gone to extensive lengths to provide him with surgery records, medical history, current meds, etc. We had spoken 3 times over the phone. The first call he said he thought he could help me. The second call he said he couldn't help me, but wanted me to see his colleague in Jackson, MS. Then, after they consulted last Friday, he called me to say that I should keep my 8/19 appointment with him. He said on the phone that he thinks my body is quite possibly producing excessive estrogen, and that perhaps a piece of left ovary was left behind my rectal canal. He said there is a trial research cancer drug that is used to stop estrogen production in women battling breast cancer. However, he did not think that would be a good fit for me, considering the previous Lupron/Depot had not helped me. He wanted me to come to Memphis for testing and examination to try to pinpoint my problem. He is a gynecological surgeon, and does not recommend additional surgery. I asked him "what is causing my pain?" He said there's a less than 0% chance I'll ever get that answer. WOW...can't he further investigate potential adhesions structuring my colon/bladder, specifically in my left side where the pain literally takes my breath away? He sent me for intravaginal ultrasound. Yea, just what I was hoping for...penetration of an 8 inch probe after inability to have intercourse for 17 years now. BTW I had that procedure before initial endo diagnosis. It failed to show the endo. Yesterday's report said the only findings were "bowel" and that they were "moving" about freely. He said that was good news...now what did I want to do? Oh, Idunno...Perhaps a late lunch and a round of goofy golf, since I'm "walking on sunshine"...how about you? (see yesterday's post)Humor, though often dark, sustains me.
    He said that my lab results would not be available until later this week at which time he will call me. He said at that point he wants to hand me off to his colleague in Jackson for pain management. That's where my husband's hope still lies...that yesterday's painful experience may lead ultimately to the Jackson team of doctors specializing in treatment of endo pain. Dr. S in Jackson had called me last week, and discussed a new group of physicians he is assembling there in Jackson specifically for women's endo-related health issues. One of his new recruits has worked with either the Atlanta group or the Colorado group of renowned endometriosis clinics. Dr. S had said that since I already had the scheduled appointment with doctor in Memphis, that I should see him first. They highly respect one another's work and have stellar reputations in their field of gynecology. I forwarded all of my records to Dr. S last week also...received instructions late Friday afternoon via his nurse to "see Memphis doctor on Monday". Hopefully, upon receipt of lab results, I will get scheduled @ Jackson. I pray it's sooner rather than later.
    I know this post is way too long, but I'm still not done. I want to say "thank you" to those of you who have posted your thoughts for me. You CANNOT know how much it means to know somebody cares enough to take the time to help me...But then you DO KNOW because you suffer as well. The suggestions on these posts are a God-send, from doctors to suggestions of "teaching hospitals". I've always been scared of those because I fear they'll see me as the prime specimen to experiment with. I'm rethinking that, as Dr. S is the chairman/director/professor/MD/JD of the women's department at the University. He took the time to call me personally to discuss my pain. That, alone, is more than I've had since my lifetime GP retired. My current GP won't even discuss my pain with me.
    I remain confused about oral meds that can be tolerated due to "pouch" and/or absorption issues. And yes, you are correct, as absorption of vitamins/meds is severely limited as a result of the 1987 bypass surgery. I will do more research on what could possibly be available. Meanwhile please continue to respond to me with any thoughts. I could really use the support. Thanks for listening.

     
    Old 08-20-2013, 10:36 AM   #7
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    Re: Oral Pain Meds Not Well Tolerated! Is there a better way?

    Kibbles, Please don't apologize for ranting, we all need to do it at times, and I find its actually easier to vent here to people who understand what we go through day in and day out rather than the people in our lives who don't know what chronic pain feels like. Me, personally, I don't know what endo feels like, but I am no stranger to pain, so I feel for you. Vent anytime you need to, if nothing else, we can at least listen and offer you support. Sending you prayers and gentle hugs.

     
    Old 08-21-2013, 03:14 PM   #8
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    Re: Oral Pain Meds Not Well Tolerated! Is there a better way?

    I just wanted to say I hope the new doctor can help. There's nothing worse than being in pain and having no one who understands and will help you. I have recently had that issue myself and I never want to do it again. Keep on going until you find one, because they are out there.
    My Mom also had the gastric bypass and can not absorb medications as well. She uses the liquid lortab and it seems to work for her so maybe that would be an option?
    I wish you luck and will be praying you find relief soon!
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    Old 08-21-2013, 03:15 PM   #9
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    Re: Oral Pain Meds Not Well Tolerated! Is there a better way?

    I just wanted to say I hope the new doctor can help. There's nothing worse than being in pain and having no one who understands and will help you. I have recently had that issue myself and I never want to do it again. Keep on going until you find one, because they are out there.
    My Mom also had the gastric bypass and can not absorb medications as well. She uses the liquid lortab and it seems to work for her so maybe that would be an option?
    I wish you luck and will be praying you find relief soon!
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    Old 08-22-2013, 01:57 AM   #10
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    Re: Oral Pain Meds Not Well Tolerated! Is there a better way?

    Dear kibbles, Im so sorry & i wanted to say that i think there is a problem when too many specialists keep passing the buck concerning pain, imho, however Dr S seems promising to me in the endo realm. I had hysterectomy young & due to blood clots cant take hormones so i have osteoporosis & it hurts!! I had an auto immune malabsorption bowel disease ,ulcerative colitisin remission now & my gastro wont let me have even IV bone growth meds for it, they are hard on the gi tract according to him. So, gyn recommended liquid gelcap absorbable calcium with vit D & "miracle"i can take it! Also in texas all the drs no matter the specialty have to pay for special prescription pads to prescribe schedule 2 narcotics & many, many drs choose not to buy them so they can avoid the narcotic conversation & now there are certain requirements to prescribe narcotics as a pain clinic but regular drs can prescribe them if they want to but only if they purchase the pads, i heard my dr say that they are expensive. I have worn fentanyl patches for 13 years due to arachnoiditis, & severe back pain & they come in generic, cost $10 co pay on my insurance for 15 patches a month, i have always had good success with pain relief from them generic or brand, duragesic. Oschner is a wonderful hospital & is their still a St. Josephs in memphis that ive always heard great things about? Wherever you live there is surely a pain mgmt dr somewhere, i hope, & with the medical history & documentation of the pouch problem & everything else, you poor thing, it should be enough information that if all is recent testing that in my experience i was prescribed the fentanyl patch on the first visit. But & very, very crucial it is only prescribed to "opioid tolerant" patients that have" constant 24/7" cancer or non cancer moderate to severe pain otherwise it cannot be prescribed according to my dr & the manufacturers information insert. I truly hope that you find a caring dr& there are many caring, competent pain mgmt anesthesia drs & physical medicine & rehab drs , physiatrists, that treat acute & chronic pain & thats who i see & his main goal is to restore function & quality of live to all types of patients meaning, intractable pain, orthopedic, gyn, abd pain, back pain, knee pain etc from failed surgeries. God bless you & we are all here because we know pain & truly care if you are hurting so please let us know how you are, anytime.

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    Old 08-22-2013, 07:10 AM   #11
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    Re: Oral Pain Meds Not Well Tolerated! Is there a better way?

    Thank you very, very much. I'm still waiting for my lab results from Monday in Memphis. He said it could very well be the weekend before he calls me with those. My hope is, at that point, Dr. S will schedule me in. Although, with their consult of my case last week, I would think I'd already have an appointment. My pain is constant, be it skeletal or flesh. I awaken many days only to feel disappointed that I'm still here to have to suffer through another day. As you know, pain affects our moods as moods affect our pain. I try to find something funny somewhere, as a "merry heart doeth good like medicine". But on those days/all-nighters when you are in so much pain that you can't eat, sleep or poop, there isn't much to laugh about. On a good day (when sometimes a shower/shampoo and clean underwear is a VICTORY) I'll treat myself to a chuckle by dancing naked in front of the mirror I don't expect "perfect" but I do need "possible"...a respite from the agony. I fake it til I feel it for the ones who are less fortunate than I. My joy comes from making others smile, whether it's calling Bingo for the folks at my mom's living center, or baking cakes for their birthday bashes. I think our elders are being cast away and forgotten, but that's a whole separate conversation. Today's society is caught up in "digital dementia". So-o-o many out there just crave a kind word, a gentle touch, a simple "Hello Sweet Pea...How are ya today?". We ALL in constant pain need to hear that it's going to be alright, even when we know it isn't. Meanwhile, I'm doing some research on pain meds with optional delivery systems, based on some of the posts here. It's going to be trial and error with my train wreck of a digestive system, but if Dr. S lives up to his reputation, there's hope.

     
    Old 08-22-2013, 02:06 PM   #12
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    Re: Oral Pain Meds Not Well Tolerated! Is there a better way?

    Dear kibbles, Oh i know where you are coming from & that pain place i have just been in recently & there is one thing that happens during that time that may just be specific to me but heres what happens. I forget that i get better! Truly it seems so awful & im hurting so much it seems like i dont even look up to see people really but my family tells me over & over that i always get better, that #10 pain doesnt last forever, for some weird reason i cant remember that so they remind me that i always get better because i always do! When i get back to #5-6 pain i can remember that but i ask them to remind me of that fact for me & it helps me & it is true not just a nice comment. Do you always get out of #10 pain eventually, like down to a tolerable pain level? If so is there someone to remind you?

     
    Old 08-22-2013, 02:18 PM   #13
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    Re: Oral Pain Meds Not Well Tolerated! Is there a better way?

    Hi again kibbles, I forgot to tell you that carafate helps me when the meds hurt my stomach along with a proton pump inhibitor & i finally found eating dried prunes helps me more than medicine & also i use a TENS unit when in severe pain & it works for me & i feel like it saved me from needless suffering when my NS retired, changing pain mgmt drs, do you have one?

     
    Old 08-22-2013, 02:21 PM   #14
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    Re: Oral Pain Meds Not Well Tolerated! Is there a better way?

    yes, have your doctor prescribe you injectables...

     
    Old 08-22-2013, 03:17 PM   #15
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    Re: Oral Pain Meds Not Well Tolerated! Is there a better way?

    Hello gmak,
    I thank you for your posts, and I am sorry for your suffering as well. Today has been another stress-filled day of waiting to hear the results of Monday's tests with Dr. M in Memphis. He told me (forgive me if I repeat myself) the results could take til the end of the week...into the weekend. Patience is not my strongest characteristic. I just think healthcare is so filled with bureaucracy...plus doctors overbook and "undertreat" IMO. I left there so-o-o literally "hurt" and drained, physically and emotionally. He "flittered" around with his protege' (a young female med student) and his computer screen, while answering his phone, as he asked me "what do you want to do now?". A physician/surgeon with his experience should not have let me leave his office in pain, period. I try to remain hopeful that I will soon hear from Dr. S in Jackson, once they've assessed my test results. I've tried calling/faxing, but their system, like most, is automated. I'm at the mercy of their "call back". His nurse has been rude and condescending to me already (not a good sign).
    Yes, with proper meds that can decrease my pain without increasing "gastric pouch" distress should bring my levels down to tolerable. I appreciate posters sharing their experiences, both good and bad. The suggestions are helpful, if I can ever again find a doctor who cares enough to work WITH me. Dr. M is NOT the one...His yammering as though I were a med student made no sense. Mind you, I am Southern to the bone. I not only speak s-l-o-w-l-y...I hear s-l-o-w-l-y

     
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