Disappointed

Posted by martft4 @martft4, Jan 9 12:27pm

Well had my appointment and it was a waste of my time and energy.
Guess I will just have to not have a life anymore.
Since the stomach pain is affecting every part of it.
So disappointed and sad and feel like giving up.

I’m so sorry to hear about your disappointment with your visit. Do you mind sharing what happened?

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@astaingegerdm

I’m so sorry to hear about your disappointment with your visit. Do you mind sharing what happened?

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Well I met with the doctor and he asked what was going on
Why I was there and so I told him my regular gastroenterologist told me to come back to Mayo since he didn’t think he could help me anymore.
Been having terrible stomach pain and I am pretty much in bed from noon to till morning.
Having both constipation and diarrhea and throwing up green stuff and also orange greasy stuff and also white cottage cheese looking junk.
Can weigh 104 and after a episode lose 5 pounds a day.
Anyway he said just keep taking my meds and have a good day.

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@martft4

Well I met with the doctor and he asked what was going on
Why I was there and so I told him my regular gastroenterologist told me to come back to Mayo since he didn’t think he could help me anymore.
Been having terrible stomach pain and I am pretty much in bed from noon to till morning.
Having both constipation and diarrhea and throwing up green stuff and also orange greasy stuff and also white cottage cheese looking junk.
Can weigh 104 and after a episode lose 5 pounds a day.
Anyway he said just keep taking my meds and have a good day.

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Hi! How's your gall bladder? Mine went misdiagnosed for a year. Had calcium stones the size of marbles. Could have died… on verge of being gangrene. I was so ill, skin grey, back pain, front pain…really out of it… I remember throwing up… it was green and my pee was orange. Emergency surgery. It's a thought.
Have you been checked for H pylori too?
Have you had abdominal surgeries like Nissen or Toupet fundoplications? Adhesions?
Sorry you are hurting. I am too, but for different reasons.

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@sickvick

Hi! How's your gall bladder? Mine went misdiagnosed for a year. Had calcium stones the size of marbles. Could have died… on verge of being gangrene. I was so ill, skin grey, back pain, front pain…really out of it… I remember throwing up… it was green and my pee was orange. Emergency surgery. It's a thought.
Have you been checked for H pylori too?
Have you had abdominal surgeries like Nissen or Toupet fundoplications? Adhesions?
Sorry you are hurting. I am too, but for different reasons.

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Hi thank you for the message
I’ve had my gallbladder checked like six months ago and I guess it was fine.
My mother had the same thing when they did the surgery on her they said her gallbladder practically disintegrated it was so bad.
She had a lot of back pain and chest pain the doctor thought she was having a heart attack.
That’s one thing I didn’t understand why no tests done. Just I go in and since I have gastroparesis and systemic scleroderma that’s the issue and oh just eat small meals take your meds and that was it.
I think that’s why I am so frustrated and disappointed.
My regular gastroenterologist said go to mayo I can’t do anything else for you and it seems like that’s the way this doctor is also.

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@martft4

Hi thank you for the message
I’ve had my gallbladder checked like six months ago and I guess it was fine.
My mother had the same thing when they did the surgery on her they said her gallbladder practically disintegrated it was so bad.
She had a lot of back pain and chest pain the doctor thought she was having a heart attack.
That’s one thing I didn’t understand why no tests done. Just I go in and since I have gastroparesis and systemic scleroderma that’s the issue and oh just eat small meals take your meds and that was it.
I think that’s why I am so frustrated and disappointed.
My regular gastroenterologist said go to mayo I can’t do anything else for you and it seems like that’s the way this doctor is also.

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Sorry to hear your hurting also. Being in pain is so wearing and taxing on a person and it like beats you down so bad.

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@martft4

Sorry to hear your hurting also. Being in pain is so wearing and taxing on a person and it like beats you down so bad.

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@martft4 I’m sorry to hear that you had such a disappointing appointment. That must have been very discouraging. I really know very little about the problems you are experiencing, but to my uneducated mind it sounds as if @sickvick has some good suggestions, but if so, why wouldn’t the doctor have checked them?

I’m sorry you are both hurting, and I agree, being in pain really does wear you out.
JK

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@contentandwell

@martft4 I’m sorry to hear that you had such a disappointing appointment. That must have been very discouraging. I really know very little about the problems you are experiencing, but to my uneducated mind it sounds as if @sickvick has some good suggestions, but if so, why wouldn’t the doctor have checked them?

I’m sorry you are both hurting, and I agree, being in pain really does wear you out.
JK

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Thank you so much for the sympathy
That’s exactly what I was thinking.
Now I just don’t know where to turn. Ever since I was young all I heard was if your really sick and in pain go to Mayo.
They can help you.

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@martft4

Well I met with the doctor and he asked what was going on
Why I was there and so I told him my regular gastroenterologist told me to come back to Mayo since he didn’t think he could help me anymore.
Been having terrible stomach pain and I am pretty much in bed from noon to till morning.
Having both constipation and diarrhea and throwing up green stuff and also orange greasy stuff and also white cottage cheese looking junk.
Can weigh 104 and after a episode lose 5 pounds a day.
Anyway he said just keep taking my meds and have a good day.

Jump to this post

So sorry to hear about your experience. I'm guessing from you saying to come back to Mayo that you had been there before?? Was this the same doctor you saw before? I sooo understand wanting to give up because of the pain. Don't give up!! The answers are there you Just have to keep searching. I know that sounds condescending but it's not meant to be. Eventually you will find what you need. Where did you go? Rochester? Can you see another doctor? I do get some relief from acupuncture and massage. If I can support you in anyway let me know!!!

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@mutter3

So sorry to hear about your experience. I'm guessing from you saying to come back to Mayo that you had been there before?? Was this the same doctor you saw before? I sooo understand wanting to give up because of the pain. Don't give up!! The answers are there you Just have to keep searching. I know that sounds condescending but it's not meant to be. Eventually you will find what you need. Where did you go? Rochester? Can you see another doctor? I do get some relief from acupuncture and massage. If I can support you in anyway let me know!!!

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Yes I am in Rochester.
No the doctor I had seen last time is gone. I was hoping to get him again but no such luck.
Yes the last time I was here it seemed like they were mostly concern with me taking laxatives.
So I ended up back again last January for the pelvic floor therapy.
It helped so I don’t take laxatives anymore and now this doctor wants me to take milk of magnesia.
So I’m just confused.
I won’t give up I was just so frustrated and confused about what the next option is.
Thank you for listening and I appreciate all your feedback.
I will check into massage therapy.
I guess it’s back to the drawing board and looking for another doctor who will listen.
I almost feel like the doctor thought I was looking for pain pills.

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@mrtft4 – I understand how it feels to be disappointed after going to a top medical facility. As you have noticed, many doctors are not good at getting down to the patient’s level and EXPLAIN why no tests needed to be ordered as well as going through in detail again why you feel so sick- what is your body’s response to your illness. You do have a very difficult disease but you have to be told what happens along your intestinal tract. In my personal experience it is easier to deal with the daily misery if I understand what is happening and what the medicines are doing to help you.
I think someone mentioned acupuncture- could be worth a try – as well as other treatment modalities aimed at relaxation. It might be helpful to see a therapist about living with a chronic illness. Don’t give up!

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@astaingegerdm

@mrtft4 – I understand how it feels to be disappointed after going to a top medical facility. As you have noticed, many doctors are not good at getting down to the patient’s level and EXPLAIN why no tests needed to be ordered as well as going through in detail again why you feel so sick- what is your body’s response to your illness. You do have a very difficult disease but you have to be told what happens along your intestinal tract. In my personal experience it is easier to deal with the daily misery if I understand what is happening and what the medicines are doing to help you.
I think someone mentioned acupuncture- could be worth a try – as well as other treatment modalities aimed at relaxation. It might be helpful to see a therapist about living with a chronic illness. Don’t give up!

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Thank you
I have been doing some relaxation techniques I learned online to help try and deal with the pain.
Yes it is not easier but helpful and I do a lot of reading about it. I also have a sister who suffers from the same disease so we do a lot of talking to each other on the phone about it. So having her to talk to helps a lot.
I’m not giving up I have my grandchildren and children who need me around sick or not,lol.
Usually I am upbeat but yesterday just knocked the wind out of my sails I think so I jumped on the pity pot.
I’m feeling better this morning and didn’t have a episode last night so I actually got a straight 5 hours of sleep so getting that much sleep helps my mood also.
I think I’m just in a flare that is taking longer to be done then I normally have. Most last two or three months and this one has been six at least. So now it’s time to put my big girl bloomers on and keep on trucking,lol.
That is true about the doctor especially when I hear about the green bile vomit and how it could be gallbladder or something not related to the gastroparesis. It would of been nice to hear why no tests ordered especially since it’s been over a year and half since had endoscopy.

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@martft4 – it is nice to hear that you and your sister have each other- mini- support group! There will be good days and less good days. Do something special on good days- that’s what I used to do the years I spent with pain.

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@astaingegerdm

@martft4 – it is nice to hear that you and your sister have each other- mini- support group! There will be good days and less good days. Do something special on good days- that’s what I used to do the years I spent with pain.

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Yes since she has lived with it longer it’s always good to know what to look for or just complain too,lol.
I tell her she is the energizer bunny because she just keeps going and going. Even when she is having a tough day.
I want to be like her and I try.
And then other days bed is my bestie lol.
On my good days I do as much cleaning and cooking for my family and also baking.

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