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

Interested in more discussions like this? Go to the Digestive Health Support Group.

acid2come | @acid2come | Jan 3, 2020

In reply to @fourof5zs "@acid2come Do you have a hiatal hernia?" + (show)

Yes I do but the surgeon said it to small. That it doesn’t need surgery

acid2come | @acid2come | Jan 3, 2020

In reply to @ken82 "Things can slip out of place in the Nissan... Medical professionals are hesitant of admitting something..." + (show)

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??

acid2come | @acid2come | Jan 3, 2020

In reply to @fourof5zs "@acid2come Do you have a hiatal hernia?" + (show)

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

ZeeGee | @fourof5zs | Jan 3, 2020

In reply to @acid2come "Hi, do I just ask the doctor to write that it’s to small to fix? Or..." + (show)

@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.

acid2come | @acid2come | Jan 3, 2020

In reply to @fourof5zs "@acid2come The reason I asked about a hernia that sometimes with the fundoplication they will use..." + (show)

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...

ZeeGee | @fourof5zs | Jan 3, 2020

In reply to @acid2come "Thank you, I hvnt had the hernia fixed yet because the surgeon said it was to..." + (show)

@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

januaryjane | @januaryjane | Jan 6, 2020

In reply to @acid2come "I know exactly what your talking about.. I’ve been so sick since August and it doesn’t..." + (show)

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

martft4 | @martft4 | Jan 21, 2020

In reply to @januaryjane "Im getting burnt out on dealing everyday. On not knowing whats next in my care, or..." + (show)

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.

januaryjane | @januaryjane | Jan 21, 2020

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

JK | @contentandwell | Jan 21, 2020

In reply to @januaryjane "Im getting burnt out on dealing everyday. On not knowing whats next in my care, or..." + (show)

@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