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Stomach pains the medical world can't seem to find or fix
A year ago from mid August, my wife began to experience cramps in her upper abdomen (diaphragm area). They were absolutely debilitating. She's a teacher and missed most of the first semester of school, that's how bad. First the cramps, then the nausea due to the pain, which led to the tandem diarrhea. Very embarrassing to be in so much pain that you had it coming out of both sides uncontrollably. The first bad episode put her in the ER. She was drugged up, given fluids and looked over by the Gastrointestinal doctor and kidney doctor.
By the way, she's a kidney transplant patient.
Back to the ER. They admitted her and she was hospitalized for close to a week. During that visit several tests were performed including: a CT scan, an MRI, and an x-ray amongst other things (urine and blood tests, etc.). Tests came back negative. Once her pain had been managed and she had been off her feet getting fluids in her, she got better. She was sent home. We thought it was over. It wasn't.
About 2 weeks later, we were right back in Medical City Dallas' ER. Early last September, the exact same thing happened. She was given fluids and tylenol. Tylenol wasn't enough, so they gave her hydrocodone. Still not enough. Then the morphine, which worked well when mixed with phenergan (promethezine) to control both pain and nausea. However, at the end of the day, she was mostly given dilaudid. That's how bad it got. The tests were repeated and the results were the same. This time, an oncologist paid a visit. He spoke to her as if she were a drug seeker. He looked her right in the face and asked her in a conspiratorial tone, "How much pain are you 'really' in"? The problem with drug seekers is that they've learned to act like those with genuine ailments, making it difficult for people who struggle as my wife does with chronic pain.
Rinse and repeat. Things get better for a bit, then back to the ER we go. She had to get picked up by an ambulance this time because I drive a manual transmission vehicle, she's vomiting uncontrollably, and defecating at the same time. No matter what tests have been done, radioactive eggs included, they can't find anything wrong. Time passes, the symptoms subside again. They change her immunosuppressant drug for her kidneys from Cellcept to Imuran in hopes that that would help. It didn't
Rinse and repeat. Right back up there within 2 weeks. While trying to communicate to the GI doctor that we feel that she isn't being listened to, he leaves the room while I'm mid-sentence. We just stand there dumbfounded. I thought he was joking. Then we find out that he'd found a "...tumor in one ovary and a cyst in the other..." way back in August that they didn't think important enough to tell her about at the time because it looked benign. A gynecologist came in and said she'd operate on her, hoping that maybe that was the reason for the pain. She was amazing by the way. She got a general surgeon to look at everything from the operating site (my wifes midsection) and up while she looked at everything from the site and downwards.
As it turns out, there wasn't a tumor in her ovary, her ovary had simply become a tumor, about 2-3 times the size of the ovary that had a cyst about half its size in it (we have the pictures). So my wife lost an ovary. For us men, it's the equivalent of losing a testicle. It effected her deeply emotionally. The general surgeon found an air pocket in her upper intestine that made it hard as a rock. She always defined the pain as feeling like something hard twisting her insides. JACKPOT! Or so we thought. It went away after the surgery and we went home a couple of days later feeling hopeful.
Within 2 weeks, rinse and repeat. It is now November. During this time, her own mother told her that her pain could be psychological and that she should see a shrink. That maybe she was going through withdrawal. That maybe she had a problem. I'm a Navy veteran and I'm very very scrappy by nature. My patience was at an end. Just because somebody knows a little about psychology just because you read or heard it somewhere doesn't mean that all unexplainable pains are mental.
But apparently the hospital agreed. In the emergency room, we were told that she would not be admitted. It had been passed down that she should be put in observation and given fluids and nausea medicine, and that she would receive no further medical treatment (the nurses words, not mine). Her temperature was low, her lips and finger tips were blue, she wasn't very coherent and when I plead with them they just kept repeating a litany: go to observation, go to another facility or go home.
We went to Baylor University Medical Center of Dallas. Her eyes were hooded, she felt clammy and she was giving up. She told me she wanted to die, that it would be easier. When they took her vitals and got her in a bed, all hell broke loose. Every paramedic waiting at their ambulances, as well as all ER nurses not currently busy was called into her room. They got an IV in her and gave her a big dose of dilaudid with her saline bag. She had an infection on the donated kidney. They gave her IV antibiotics pretty much around the clock until they could get it under control. Her temperature was actually high at this time (from cold to a temperature of 100+ in less than an hour).
I asked her nurse how my wife would have fared had we gone home as originally suggested by the other hospital's staff before one made the suggestion of going to a different hospital. She told me that my wife would not have gotten very far as her vitals were getting worse right in front of their eyes. She was admitted and after 2 weeks of doctors testing on her (many of the tests the other hospital had never even mentioned, much less implemented) they could not find the source of the problem. It wasn't in the pancreas or pretty much anywhere they looked in the abdomen area. The last resort was to implement something called a nerve block. They couldn't figure it out, but they could treat the symptoms for longer periods if they could just turn off the nerves around that area.
It was December at this point. Two needles to the spine and the pain subsided. In two days the pain was completely gone. Even the headache she'd been fighting with since 2007 went away. No narcotics, no nausea meds, no diarrhea. Thank you Dr. Larry Melton. Thank you Dr. Brian Flanigan. Thank you entire Baylor staff. May GOD bless you all, and if you don't believe in that sort of thing, may good fortune always find you all.
However the nerve block is temporary and hers only lasted for about 4 months. We went back up to Baylor in April. ER on Saturday, nerve block on Sunday, back to normalcy on Tuesday. In and out. Now we have a schedule: nerve block every 3.5 to 4 months until we can fix our finances and get a permanent GI and pain management doctor.
Here we are in August. We scheduled for a nerve block and on Thursday we got the nerve block done. I noticed that her puncture points were a whole 5 - 6 inches higher. It has been five days and the nerve block has not kicked in. The doctors don't want to prescribe any more pain medicine. We've been getting the runaround for the past 2 days from her kidney doctors and the pain management clinic. I'm going to paste this everywhere in hopes that we can get some help. It has been a year and I feel lost. My wife is suffering and we can't seem to make any headway. Should we go to another state or another country with different methods? We can find a specific nerve cluster (2/3 of the time) to disable, but we can't find what causes the pain.
If I seem harsh or petulant just know that that isn't my aim. I'm a very very scrappy American ex-sailor with a lot of pride on my knees begging the world for aid. Anybody with any insight or constructive advice, please respond.
By the way, she's a kidney transplant patient.
Back to the ER. They admitted her and she was hospitalized for close to a week. During that visit several tests were performed including: a CT scan, an MRI, and an x-ray amongst other things (urine and blood tests, etc.). Tests came back negative. Once her pain had been managed and she had been off her feet getting fluids in her, she got better. She was sent home. We thought it was over. It wasn't.
About 2 weeks later, we were right back in Medical City Dallas' ER. Early last September, the exact same thing happened. She was given fluids and tylenol. Tylenol wasn't enough, so they gave her hydrocodone. Still not enough. Then the morphine, which worked well when mixed with phenergan (promethezine) to control both pain and nausea. However, at the end of the day, she was mostly given dilaudid. That's how bad it got. The tests were repeated and the results were the same. This time, an oncologist paid a visit. He spoke to her as if she were a drug seeker. He looked her right in the face and asked her in a conspiratorial tone, "How much pain are you 'really' in"? The problem with drug seekers is that they've learned to act like those with genuine ailments, making it difficult for people who struggle as my wife does with chronic pain.
Rinse and repeat. Things get better for a bit, then back to the ER we go. She had to get picked up by an ambulance this time because I drive a manual transmission vehicle, she's vomiting uncontrollably, and defecating at the same time. No matter what tests have been done, radioactive eggs included, they can't find anything wrong. Time passes, the symptoms subside again. They change her immunosuppressant drug for her kidneys from Cellcept to Imuran in hopes that that would help. It didn't
Rinse and repeat. Right back up there within 2 weeks. While trying to communicate to the GI doctor that we feel that she isn't being listened to, he leaves the room while I'm mid-sentence. We just stand there dumbfounded. I thought he was joking. Then we find out that he'd found a "...tumor in one ovary and a cyst in the other..." way back in August that they didn't think important enough to tell her about at the time because it looked benign. A gynecologist came in and said she'd operate on her, hoping that maybe that was the reason for the pain. She was amazing by the way. She got a general surgeon to look at everything from the operating site (my wifes midsection) and up while she looked at everything from the site and downwards.
As it turns out, there wasn't a tumor in her ovary, her ovary had simply become a tumor, about 2-3 times the size of the ovary that had a cyst about half its size in it (we have the pictures). So my wife lost an ovary. For us men, it's the equivalent of losing a testicle. It effected her deeply emotionally. The general surgeon found an air pocket in her upper intestine that made it hard as a rock. She always defined the pain as feeling like something hard twisting her insides. JACKPOT! Or so we thought. It went away after the surgery and we went home a couple of days later feeling hopeful.
Within 2 weeks, rinse and repeat. It is now November. During this time, her own mother told her that her pain could be psychological and that she should see a shrink. That maybe she was going through withdrawal. That maybe she had a problem. I'm a Navy veteran and I'm very very scrappy by nature. My patience was at an end. Just because somebody knows a little about psychology just because you read or heard it somewhere doesn't mean that all unexplainable pains are mental.
But apparently the hospital agreed. In the emergency room, we were told that she would not be admitted. It had been passed down that she should be put in observation and given fluids and nausea medicine, and that she would receive no further medical treatment (the nurses words, not mine). Her temperature was low, her lips and finger tips were blue, she wasn't very coherent and when I plead with them they just kept repeating a litany: go to observation, go to another facility or go home.
We went to Baylor University Medical Center of Dallas. Her eyes were hooded, she felt clammy and she was giving up. She told me she wanted to die, that it would be easier. When they took her vitals and got her in a bed, all hell broke loose. Every paramedic waiting at their ambulances, as well as all ER nurses not currently busy was called into her room. They got an IV in her and gave her a big dose of dilaudid with her saline bag. She had an infection on the donated kidney. They gave her IV antibiotics pretty much around the clock until they could get it under control. Her temperature was actually high at this time (from cold to a temperature of 100+ in less than an hour).
I asked her nurse how my wife would have fared had we gone home as originally suggested by the other hospital's staff before one made the suggestion of going to a different hospital. She told me that my wife would not have gotten very far as her vitals were getting worse right in front of their eyes. She was admitted and after 2 weeks of doctors testing on her (many of the tests the other hospital had never even mentioned, much less implemented) they could not find the source of the problem. It wasn't in the pancreas or pretty much anywhere they looked in the abdomen area. The last resort was to implement something called a nerve block. They couldn't figure it out, but they could treat the symptoms for longer periods if they could just turn off the nerves around that area.
It was December at this point. Two needles to the spine and the pain subsided. In two days the pain was completely gone. Even the headache she'd been fighting with since 2007 went away. No narcotics, no nausea meds, no diarrhea. Thank you Dr. Larry Melton. Thank you Dr. Brian Flanigan. Thank you entire Baylor staff. May GOD bless you all, and if you don't believe in that sort of thing, may good fortune always find you all.
However the nerve block is temporary and hers only lasted for about 4 months. We went back up to Baylor in April. ER on Saturday, nerve block on Sunday, back to normalcy on Tuesday. In and out. Now we have a schedule: nerve block every 3.5 to 4 months until we can fix our finances and get a permanent GI and pain management doctor.
Here we are in August. We scheduled for a nerve block and on Thursday we got the nerve block done. I noticed that her puncture points were a whole 5 - 6 inches higher. It has been five days and the nerve block has not kicked in. The doctors don't want to prescribe any more pain medicine. We've been getting the runaround for the past 2 days from her kidney doctors and the pain management clinic. I'm going to paste this everywhere in hopes that we can get some help. It has been a year and I feel lost. My wife is suffering and we can't seem to make any headway. Should we go to another state or another country with different methods? We can find a specific nerve cluster (2/3 of the time) to disable, but we can't find what causes the pain.
If I seem harsh or petulant just know that that isn't my aim. I'm a very very scrappy American ex-sailor with a lot of pride on my knees begging the world for aid. Anybody with any insight or constructive advice, please respond.
I know you posted this along time ago and I really hope your wife has found the care she needed, just fyi, I left texas due to horrible healthcare, was put on hospice and forgotten, 2yrs later after the wondeful doctors at the University of Michigan hospital I'm still fighting, they manage pain artfully and have been trying different chemo therapies, never give up
barbinpain, BetterGetBetter, I wish I could word my appreciation for your patience and feedback. This is more of a short story than a quick question and I thank you for reading it and responding with wonderful suggestions. I will keep everyone who cares to read and/or comment up to date with any new developments as my information may serve to aid someone else that finds themselves in a similar predicament.
Barbinpain, I really like your answer to the original poster. It is kind, thoughtful, and hopefully the original poster will find it of some use.
Travis, you mentioned "out of country." Hmm.... That is very clever, very thoughtful. If I had a spouse with those issues and someone mentioned seeking help outside of the country, I think I would feel good about considering some place in Canada, at least for a consultation.
There are lots of people on this forum. I hope you get some more answers and the help and blessings you and your family need.
Travis, you mentioned "out of country." Hmm.... That is very clever, very thoughtful. If I had a spouse with those issues and someone mentioned seeking help outside of the country, I think I would feel good about considering some place in Canada, at least for a consultation.
There are lots of people on this forum. I hope you get some more answers and the help and blessings you and your family need.
I feel so sorry for your wife. When you're dealing with doctors, you have to be persistent. Get on the internet and research. Get copies of all tests and start looking up definitions. Start printing out all relevant info. Don't settle for CD, tell them you will need the written report. Use the excuse you are going for a second opinion. This sounds paranoid but I've been there. Keep your own records. And when you get a new doctor don't leave his office until the Why? And please explain?, are answered. They are working for you. And by all means , go to another state, look up MD on Healthgrades website. They are rated there. Good and bad reviews. I hope and pray you will find some relief for your wife.
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