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 group.

@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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@contentandwell

@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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Colectomy

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@martft4

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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Thank you. But i havent been fortunate enough to find support. I look to connect all the time but it is very difficult where i live. NAMI doesnt have anything in my area, that leaves AA and church groups, many i tried. I dont have a big or close family. My mom does support me though, a chaotic relationship it is though.

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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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Try looking into histamine intolerance – not the same as nasal allergies. I learned from a DNA test that I lacked the genes to digest histamine found in most foods. When I started following the diet for histamine intolerance, my sick days came a lot less. It didn't cure everything but it definitely helped. I suspect I have more than one issue.

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Hello,
Hoping to reach out for guidance as here is what has been going on. About 6 months ago had a bout with what we thought was IBS. After a few days I felt better but about 2 weeks later minor symptoms came back regarding cramps after eating, weakness, yellow diarrhea. Saw a GI and recommended following a low fodmap diet. Had a little improvement for a few weeks but then symptoms slowly returned. In October had another bout where diarrhea is horrible (always yellow, pungent, greasy looking and sometimes green mucous). The diarrhea will last for days and during this time I have muscle twitches, pain in abdomen and under left rib cage, lots of belching, dizziness, nausea, headaches, brain fog, every muscle and bone hurts, and utter exhaustion. After about 2 weeks improvement started which was short lived as the symptoms have returned with a vengeance and have been active since early December. The symptoms are extreme thirst, ringing in ears, headache, nausea, muscle twitches/cramps, stabbing pain under left rib cage, orange/pungent diarrhea, dizziness, tiredness (will sleep 10-12 hours per night and wake up feeling like I haven’t slept), followed by the inability to sleep or stay asleep the next several nights, brain fog, passing out when standing up, sensitivity to smells and bright lights. It feels like a constant bad cold/flu (without the fever) that just won’t go away. I’ve also developed extreme sensitivity to just about all foods and can only tolerate puréed chicken and potatoes. I also get IVs three times a week to replenish electrolytes, B-vitamins, C and D vitamins. I’ve lost 30 pounds since October and constantly itch. I’ve seen tons of doctors who have run lots of bloodwork (CBC, metabolic panels, thyroid levels, A-1C, MRI of my brain, CT scan of abdomen/pelvis, GI stool map, colonoscopy, endoscopy, CT of heart, ultrasound of thyroid, X-ray of my spine, cortisol levels, ESR levels, CCP levels, mono, Lyme disease) In all the testing the only abnormal things noted were low lipase levels (routinely a 4 when anything over a 10 is considered normal), blood pressure drops to 80/60 upon standing, I have the MTHFR gene mutation and tested positive for the gene that leads to gastritis/parental cell antibodies/pernicious anemia, tested positive for h-pylori, and my secretory Iga levels are non existent. The weird thing is that I underwent the antibiotic treatment for h-pylori and ironically the 10 days I was on the antibiotics I felt normal. I feel like I am slowly dying and keep a detailed journal of daily symptoms, foods eaten, etc. in the attempt to figure out what’s going on. In an attempt to rule out medications…I am not taking any meds aside from a lot of multivitamins (which aren’t absorbing hence the IV’s for nutrients 3 times per week), Imodium, and a digestive enzyme. As you can imagine my anxiety is through the roof. I was prescribed amitriptylyne to try and calm the anxiety, slow the diarrhea, and maybe actually have a restful night of sleep but guess what…I had an allergic reaction to it. Before this started I worked full time as an accountant, and worked out 3-4 times a week and would run 12+ miles per week. I used to be healthy, active, social. Getting out of bed is a struggle and when I do I am exhausted after a few minutes. I also have a 3 year old daughter that I would like to be involved with. Her favorite words are now “my mommy doesn’t feel good” which breaks my heart. I am trying to get referred into our local university hospital system to see a pancreatic/GI specialist. I have petitioned both Mayo Clinic in Jacksonville and Rochester for both the GI department and internal medicine and have been denied for both. What does it take to get into a Mayo Clinic facility? What am I missing? Any thoughts or next steps, or any ideas of what this could be is greatly appreciated.

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@bree9107

Hello,
Hoping to reach out for guidance as here is what has been going on. About 6 months ago had a bout with what we thought was IBS. After a few days I felt better but about 2 weeks later minor symptoms came back regarding cramps after eating, weakness, yellow diarrhea. Saw a GI and recommended following a low fodmap diet. Had a little improvement for a few weeks but then symptoms slowly returned. In October had another bout where diarrhea is horrible (always yellow, pungent, greasy looking and sometimes green mucous). The diarrhea will last for days and during this time I have muscle twitches, pain in abdomen and under left rib cage, lots of belching, dizziness, nausea, headaches, brain fog, every muscle and bone hurts, and utter exhaustion. After about 2 weeks improvement started which was short lived as the symptoms have returned with a vengeance and have been active since early December. The symptoms are extreme thirst, ringing in ears, headache, nausea, muscle twitches/cramps, stabbing pain under left rib cage, orange/pungent diarrhea, dizziness, tiredness (will sleep 10-12 hours per night and wake up feeling like I haven’t slept), followed by the inability to sleep or stay asleep the next several nights, brain fog, passing out when standing up, sensitivity to smells and bright lights. It feels like a constant bad cold/flu (without the fever) that just won’t go away. I’ve also developed extreme sensitivity to just about all foods and can only tolerate puréed chicken and potatoes. I also get IVs three times a week to replenish electrolytes, B-vitamins, C and D vitamins. I’ve lost 30 pounds since October and constantly itch. I’ve seen tons of doctors who have run lots of bloodwork (CBC, metabolic panels, thyroid levels, A-1C, MRI of my brain, CT scan of abdomen/pelvis, GI stool map, colonoscopy, endoscopy, CT of heart, ultrasound of thyroid, X-ray of my spine, cortisol levels, ESR levels, CCP levels, mono, Lyme disease) In all the testing the only abnormal things noted were low lipase levels (routinely a 4 when anything over a 10 is considered normal), blood pressure drops to 80/60 upon standing, I have the MTHFR gene mutation and tested positive for the gene that leads to gastritis/parental cell antibodies/pernicious anemia, tested positive for h-pylori, and my secretory Iga levels are non existent. The weird thing is that I underwent the antibiotic treatment for h-pylori and ironically the 10 days I was on the antibiotics I felt normal. I feel like I am slowly dying and keep a detailed journal of daily symptoms, foods eaten, etc. in the attempt to figure out what’s going on. In an attempt to rule out medications…I am not taking any meds aside from a lot of multivitamins (which aren’t absorbing hence the IV’s for nutrients 3 times per week), Imodium, and a digestive enzyme. As you can imagine my anxiety is through the roof. I was prescribed amitriptylyne to try and calm the anxiety, slow the diarrhea, and maybe actually have a restful night of sleep but guess what…I had an allergic reaction to it. Before this started I worked full time as an accountant, and worked out 3-4 times a week and would run 12+ miles per week. I used to be healthy, active, social. Getting out of bed is a struggle and when I do I am exhausted after a few minutes. I also have a 3 year old daughter that I would like to be involved with. Her favorite words are now “my mommy doesn’t feel good” which breaks my heart. I am trying to get referred into our local university hospital system to see a pancreatic/GI specialist. I have petitioned both Mayo Clinic in Jacksonville and Rochester for both the GI department and internal medicine and have been denied for both. What does it take to get into a Mayo Clinic facility? What am I missing? Any thoughts or next steps, or any ideas of what this could be is greatly appreciated.

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You need to get ahold of the h pylori. That will wreck your body, people die from it. You had no ulcers? One thing that comes to mind is blocked bile ducts, or problems with them. Ive just read about them while doing my own research. I also saw exocrine pancreatic insufficiency, chronic pancreatitis, cystic fibrosis, and malabsorption. Kinda all related. Watch your fluid loss, keep Pedialyte or gatorade on hand, or go to hospital. (Sorry, my moms a nurse). Might want to try a blood pressure med for right now, be safe. Im not much help, but really hope you find relief! probiotics seem to help me at times. or eat plain, full greek yogurt to help your gut…though not sure your gut could handle rite now.

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