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

My daughter has been suffering digesting problems since her teens. She is 26 now. She too has had test after test that come back normal. She did have a surgery done on her intestines in her teens. Trying to figure out if what was going on then, is part of what is going on now. Or if the surgery triggered a different set of digestive disorders. She too has tried all different methods of trying to find relief. I am pretty sure she has an autoimmune problem and something going on that is rare and hard to diagnose. When she went through bouts of constipation one thing that did help were colonics (hydro colon therapy). They brought some relief for that part of her health problems. Right now she continues to go from doctor to doctor hoping someone will look outside the box instead of running the same tests. We know what she doesn't have! She too gets very depressed because she is just tired of feeling lousy all the time. It affects every aspect of her life. If it is an option, a place like Mayo clinic would probably be able to diagnose you. We are in the process of trying to get her seen there. I feel for you. Don't give up.

Liked by januaryjane

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@januaryjane. Your problem sounds very similar to @ghennel’s daughter’s problems. Here is a link to the discussion she just started:
https://connect.mayoclinic.org/discussion/sick-daughter-goes-undiagnosed/
It is very frustrating to have an undiagnosed problem. I went through that for a year and a half, so not nearly as long as you have. As I said to @ghennel please get an appointment at a top medical center, a major teaching hospital. They see so much more that they are better able to get to the bottom of the problem. Plus, most of the doctors are at the top in their specialty. I know now, that if I ever again have a health problem that is not diagnosed in a reasonable amount of time I will head down the road to Boston.

JK

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@ghennel

My daughter has been suffering digesting problems since her teens. She is 26 now. She too has had test after test that come back normal. She did have a surgery done on her intestines in her teens. Trying to figure out if what was going on then, is part of what is going on now. Or if the surgery triggered a different set of digestive disorders. She too has tried all different methods of trying to find relief. I am pretty sure she has an autoimmune problem and something going on that is rare and hard to diagnose. When she went through bouts of constipation one thing that did help were colonics (hydro colon therapy). They brought some relief for that part of her health problems. Right now she continues to go from doctor to doctor hoping someone will look outside the box instead of running the same tests. We know what she doesn't have! She too gets very depressed because she is just tired of feeling lousy all the time. It affects every aspect of her life. If it is an option, a place like Mayo clinic would probably be able to diagnose you. We are in the process of trying to get her seen there. I feel for you. Don't give up.

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Thank you so much for sharing your daughters story. I have never done a colonic but hear mixed things. Its good to know it brought her some relief. Did your daughter ever have Mono? You were referring to maybe an autoimmune disorder, and I think that may be my case. I never had problems with my bowels. The only significant thing that happened before this was getting Mono at 17. I had a very hard time, and now have had many reactivations of the ebstein-barr virus. Doesnt help that I have a close family history with autoimmune disorders. Anyway, Ive read that this virus can trigger autoimmune disorders. Not sure if thats the case for your daughter. Im still in the process of seeing rheumatologists and people who specialize in immunology.

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She was never diagnosed with mono. Our family also has a history of auto-immune disorders Ehrlos-Danlos Syndrome, specifically. It runs very heavily in my family and is not easy to diagnose. It is questionable whether I have it, due to some health issues I have had over the years. We questioned many doctors on whether this could be part of her problem. Each and every doctor acted like we had no idea what we were talking about and never bothered to address it at all. She did see a rheumatologist and he knew something was wrong with her and ran a lot of tests. Then the insurance company would not approve any more testing and he was one doctor who was willing to try to keep working with her to find something out. For now she keeps going from doctor to doctor hoping one will look outside the box and try to help her figure out why she is so sick. I hope you find some answers with the specialists you are working with.

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@ghennel

My daughter has been suffering digesting problems since her teens. She is 26 now. She too has had test after test that come back normal. She did have a surgery done on her intestines in her teens. Trying to figure out if what was going on then, is part of what is going on now. Or if the surgery triggered a different set of digestive disorders. She too has tried all different methods of trying to find relief. I am pretty sure she has an autoimmune problem and something going on that is rare and hard to diagnose. When she went through bouts of constipation one thing that did help were colonics (hydro colon therapy). They brought some relief for that part of her health problems. Right now she continues to go from doctor to doctor hoping someone will look outside the box instead of running the same tests. We know what she doesn't have! She too gets very depressed because she is just tired of feeling lousy all the time. It affects every aspect of her life. If it is an option, a place like Mayo clinic would probably be able to diagnose you. We are in the process of trying to get her seen there. I feel for you. Don't give up.

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Gastroparesis?

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I was thinking the same thing
I have it and took a long time to get diagnosed also.

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I notice that many of the things you’ve taken are acid suppressants. You might get benefit if you consider taking an acid/pepsin supplement instead. You could be a naturally low acid producer in which case the passage of chyme out of the stomach can get delayed.

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@ghennel

My daughter has been suffering digesting problems since her teens. She is 26 now. She too has had test after test that come back normal. She did have a surgery done on her intestines in her teens. Trying to figure out if what was going on then, is part of what is going on now. Or if the surgery triggered a different set of digestive disorders. She too has tried all different methods of trying to find relief. I am pretty sure she has an autoimmune problem and something going on that is rare and hard to diagnose. When she went through bouts of constipation one thing that did help were colonics (hydro colon therapy). They brought some relief for that part of her health problems. Right now she continues to go from doctor to doctor hoping someone will look outside the box instead of running the same tests. We know what she doesn't have! She too gets very depressed because she is just tired of feeling lousy all the time. It affects every aspect of her life. If it is an option, a place like Mayo clinic would probably be able to diagnose you. We are in the process of trying to get her seen there. I feel for you. Don't give up.

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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!!!

Liked by januaryjane

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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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@acid2come Do you have a hiatal hernia?

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Things can slip out of place in the Nissan… Medical professionals are hesitant of admitting something has gone wrong with what they did… So Opinions of others is important to add to your knowledge base.. knowledge is power.. get it in writing at the end of any consolation…
Does eating a smoothie or soup cause the same nausea as eating as you did before this …cut all food in small pieces, chew really well, don't eat much at a time.. snack.. don't lie down with food in the stomach… gravity has to drain the stomach..

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@fourof5zs

@acid2come Do you have a hiatal hernia?

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

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@ken82

Things can slip out of place in the Nissan… Medical professionals are hesitant of admitting something has gone wrong with what they did… So Opinions of others is important to add to your knowledge base.. knowledge is power.. get it in writing at the end of any consolation…
Does eating a smoothie or soup cause the same nausea as eating as you did before this …cut all food in small pieces, chew really well, don't eat much at a time.. snack.. don't lie down with food in the stomach… gravity has to drain the stomach..

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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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@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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