Trying everything - Sick of feeling sick

Posted by januaryjane @januaryjane, Nov 20, 2019

Just had an upper scope done today for my forever annoying gut. Just as I feared, everything looked normal, they did take a couple biopsies, which wont be back right away.
Im just burnt out. After trying to figure out my gut and immune system for years…im heartbroken. 33, female, problems started around 19.

Ive been diagnosed with Slow transit constipation and pelvic floor disorder for a few years, but ive found no relief. Ive done everything, miralax, metamucil, benefiber, citracel, milk of magnesium, magnesium supplements, magnesium citrate, enema, suppositories, fish oil, probiotics, low fodmap diet, stretching, exercising, small meals, only liquids, linzess, amitiza, trulance, stimulants, sofers, am currently still working on pelvic floor therapy and biofeedback.

The only thing that helps is stimulants, mag citrate, and coffee paired with suppositories and enemas. And not all the time do these work.
I have constant constipation, i work at it every day, and i know that if i get rid of some, the process starts over.

Im having a hard time with finding no help. I just dont feel believed after i get a good test result.
I dont know what to do next. My mental health is suffering. I dont have steam, heart of an idea.

Feeling way too hopeless to be sober

@fourof5zs

@acid2come Do you have a hiatal hernia?

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Yes I do hv hernia. But the surgeon I was using said it’s to small to fix wright now ..

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@acid2come

Hi, do I just ask the doctor to write that it’s to small to fix? Or get a copy of his report?
I’ve been either not eating or eating very small amounts. I get so sick to stomach..
Any ideas on what makes my guts to sore to wear anything tight or driving down a rough road it hurts my stomach.. I hv to walk softly so it doesn’t jar my insides.. very painful..
Suggestions or ideals??

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@acid2come The reason I asked about a hernia that sometimes with the fundoplication they will use mesh to repair the hernia. If they did a repair like the surgeon I had at the time.. the mesh can cause pain if incorrectly placed. The surgeon I had at the time placed the mesh on the fundus for the repair. I kept complaining of pain and the surgeon ignored me and dismissed me. The hernia again brought my stomach into my chest and caused difficulty breathing. I wen to a different surgeon that my gastroenterologist recommended. He ran more test and said I needed to go to the Mayo Clinic in FL (I live in GA). He said they are very good at fixing other doctors' mistakes. He was correct.

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@fourof5zs

@acid2come The reason I asked about a hernia that sometimes with the fundoplication they will use mesh to repair the hernia. If they did a repair like the surgeon I had at the time.. the mesh can cause pain if incorrectly placed. The surgeon I had at the time placed the mesh on the fundus for the repair. I kept complaining of pain and the surgeon ignored me and dismissed me. The hernia again brought my stomach into my chest and caused difficulty breathing. I wen to a different surgeon that my gastroenterologist recommended. He ran more test and said I needed to go to the Mayo Clinic in FL (I live in GA). He said they are very good at fixing other doctors' mistakes. He was correct.

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Thank you, I hvnt had the hernia fixed yet because the surgeon said it was to small… I wish that I lived closer to a Mayo Clinic… I wld go in a second… I’ve went to a new Gastroenterologist and really like him so far..
I will b having test next wk with him.. I hope I get some answers as to what’s going on with me…

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@acid2come

Thank you, I hvnt had the hernia fixed yet because the surgeon said it was to small… I wish that I lived closer to a Mayo Clinic… I wld go in a second… I’ve went to a new Gastroenterologist and really like him so far..
I will b having test next wk with him.. I hope I get some answers as to what’s going on with me…

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@acid2come I advise everyone to keep notes on what their symptoms are… a diary. Notating what symptoms you are having what you ate or did before and during symptoms.. it can be very helpful. Also get copies of your medical records.. especially tests and procedures and read them. That way you can understand better what the doctors are telling you and you can up with questions of concerns you have. Take a notebook to your doctor visits with questions written down so you will not forget and if you can bring someone with you… two sets of ears are better than one… most of the time… but especially for me because some days my hearing is whacky or my mind is not right from lack of sleep. Make notes of the visit. Mayo has an app and they post the doctor's or NP's notes on there.

Best wishes for you upcoming appointments.
ZeeGee

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@acid2come

I know exactly what your talking about.. I’ve been so sick since August and it doesn’t seem like the doctors to help me.. because I don’t fit in there text book..(but we can’t give up)
I’ve had a fundoliption 10yrs ago and it was great..I had some side affects… but now something is wrong.. acid is coming up.. I can eat a couple bites and it makes me fell sick..
I think it wld b better if I could throw up 🤢
I’m going nx wk to a new Gastroenterologist for some test.. really do like him..
My symptoms are: nausea after I eat or drink
We I drink sweet tea I start coughing.. then I. can hardly breathe..

But plz don’t gv up: your not alone!!!

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Thank you. And im sorry youre having troubles. Getting diagnosed can be frustrating. It took about 13 years for 2 of mine.

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@januaryjane

Im getting burnt out on dealing everyday. On not knowing whats next in my care, or if i will ever have a more normal life again. Im either sad, sick or both. Usually both. They feed into eachother. Im just tired, i hate my birthday. Another year rolls around and i still have no solutions, other than a 7th opinion and option of surgery. Im feeling of losing fight. My life has become so limited.

Its a sloppy shuffle going through this. Not sure how ill end up winning

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1 Peter 5:7 casting all your anxieties on him, because he cares for you. From the Bible

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@januaryjane

Im getting burnt out on dealing everyday. On not knowing whats next in my care, or if i will ever have a more normal life again. Im either sad, sick or both. Usually both. They feed into eachother. Im just tired, i hate my birthday. Another year rolls around and i still have no solutions, other than a 7th opinion and option of surgery. Im feeling of losing fight. My life has become so limited.

Its a sloppy shuffle going through this. Not sure how ill end up winning

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Dear @ januaryjane – I understand your feelings of being burnt out. You are so young! My daughter- close to your age/ has been going through a similar ordeal- she ended up at home with us- it’s not easy. Her father is somewhat similar to yours. Her main illness is gone but other autoimmune problems popped up- so it is still a struggle. She is working now- I think this has helped her moving forward and dealing with her health problems. She doesn’t have enough income to move out, which is my goal for her. I’m also dealing with chronic illness that has drained all energy- even now after I was cured – autoimmune illness of course. I see a therapist once a week. Do you have opportunity and funds for that?
May I ask what kind of surgery you might have?
Are you able to live independently? Somewhere with convenient public transportation to get everywhere you need to go. Have you applied for Disability? Maybe talking to the Social Services office to find out what services you are entitled to. I know you are tired, but you are the best spokesperson for yourself. Same with me. I would sit here and rot if I didn’t force myself out there. Write down your goals and deal with one at a time.

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@januaryjane

Im getting burnt out on dealing everyday. On not knowing whats next in my care, or if i will ever have a more normal life again. Im either sad, sick or both. Usually both. They feed into eachother. Im just tired, i hate my birthday. Another year rolls around and i still have no solutions, other than a 7th opinion and option of surgery. Im feeling of losing fight. My life has become so limited.

Its a sloppy shuffle going through this. Not sure how ill end up winning

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Don’t give up.
I felt the same way after my doctor appointment at Mayo,like why can’t they fix me! Or even just do something to help with the never ending pain.
But then I realized I have to fight even harder to make the doctors understand how it is in my body.
And I will go on.
We have family and friends who wouldn’t want us to just give up.
Keep on fighting JanuaryJane we all care and pray that answers will come for you.

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@januaryjane

Im getting burnt out on dealing everyday. On not knowing whats next in my care, or if i will ever have a more normal life again. Im either sad, sick or both. Usually both. They feed into eachother. Im just tired, i hate my birthday. Another year rolls around and i still have no solutions, other than a 7th opinion and option of surgery. Im feeling of losing fight. My life has become so limited.

Its a sloppy shuffle going through this. Not sure how ill end up winning

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@januaryjane @astaingegerdm and @martft4 both have excellent advice, having both gone through similar situations. You really must force yourself to get out and to advocate for yourself as difficult as that may be. I know how difficult that is because although problems I have had have been different from yours I have found that if I don't advocate for myself I get nowhere.

What type of surgery is suggested for you?
JK

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Im getting burnt out on dealing everyday. On not knowing whats next in my care, or if i will ever have a more normal life again. Im either sad, sick or both. Usually both. They feed into eachother. Im just tired, i hate my birthday. Another year rolls around and i still have no solutions, other than a 7th opinion and option of surgery. Im feeling of losing fight. My life has become so limited.

Its a sloppy shuffle going through this. Not sure how ill end up winning

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@januaryjane– are you home now or in a hospital? What kind of surgery might make you better?
Again- do you have access to a psychologist or social worker? It’s always good to have someone else close by knowing what you are going through.
I understand what you mean talking about birthdays. For so many years when I was not well I would predict at New Year’s that the new year would be better. Finally I stopped being so positive and I knew it would be another bad year- except that was the year both my major problems would be treated!
Science came through and offered a treatment. That’s why I don’t want you to give up- there is always a possibility that your turn had come. It is difficult for you with different ailments that may involve more than one specialist. If you don’t have the strength to push forward maybe there is someone that can help you organize a way to get your doctors to talk to you about options.

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@astaingegerdm

@januaryjane– are you home now or in a hospital? What kind of surgery might make you better?
Again- do you have access to a psychologist or social worker? It’s always good to have someone else close by knowing what you are going through.
I understand what you mean talking about birthdays. For so many years when I was not well I would predict at New Year’s that the new year would be better. Finally I stopped being so positive and I knew it would be another bad year- except that was the year both my major problems would be treated!
Science came through and offered a treatment. That’s why I don’t want you to give up- there is always a possibility that your turn had come. It is difficult for you with different ailments that may involve more than one specialist. If you don’t have the strength to push forward maybe there is someone that can help you organize a way to get your doctors to talk to you about options.

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I am home. The surgery would be a colon surgery to remove part or all of my colon because of my persistent and worsening CIC. Yes, i see a therapist and a psychiatrist, have before all this. Glad you got relief, what types of autoimmune troubles do you and your daughter have? I am on disability, have been for maybe 3 years. Before i got diagnosed i moved out to low income housing and wanted to go back to school or at least work. I wasnt going to be reliable so i volunteered instead. Im glad i did that but my health wasnt getting better, depression got bad so came back home.

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