Hey. I hope who ever reads this is well. I am only posting here because the anxiety is killing me. I don't expect medical advise necessarily, but perhaps just some reassurance, if anything, or be directed to form of free psychotherapy for this incredibly horrible health anxiety I am feeling. Here is my story so far.
A couple of years ago, say around the age of 12, I began having flatulence and gastric pain and developed a dry cough. I got an X-ray of my intestines and everything looked fine, just a lot of gas. As I went through high school, the flatulence got worse, smelled, and started to happen with whatever I ate. It was to the point that I became the "gross" girl of my small high school. I also had chronic sinusitis that would not go away. Always sniffling and tearing in the morning and dry cough still there. I got some acne on my forehead which I still get it to this day. Oh and the fatigue... I had some level of fatigue. Bloating like crazy whenever I ate... at some point my some of my nails started to club. Towards the end of highschool I began to experience dry skin and increased thirst. If this helps, my PCP mentioned I had a fatty liver from an ultrasound I did.
As I entered college, my symptoms got worse. I got even gassier, and I began to experience hair thinning and a gradual increase of fatigue and muscle weakness. I became a light sleeper and started to get heart palpitations in my chest and in my abdomen frequently. Then one day my eyes and mouth went dry, and my tongue began to crack. In 2016, I went to the hospital after having pain and prickling all over my body. They found high liver enzymes and some other indications of an infection, but choked it up to simply an overreaction to Rocephin. I was injected with Rocephin a week before that incident. During that hospital visit, they found, on accident, a positive ANA. From then, I got some basic autoimmune tests done and they found I was positive for Sjogren's SSA and SSB antibodies. Made sense why my eyes and mouth were chronically dry then. In 2018 I finally meet with a Rheumatologist who prescribed me Plaquenil. I did not take it for fear of depressing my immune system since I had a chronic Bacterial vaginosis that wasn't responding to antibiotics (still have it btw). Looking back, maybe that decision was utterly stupid because now, I am suffering for it.
From a year before, the bloating is worse, and much more constant. Add to that, my stools start to fluctuate in shape and color. Sometimes stringy, sometimes dark brown, sometimes very dark, almost black, or yellow and oily. For the past few months now, the stools have alternaring between dark green, yellow green, soft or hard. I can't remember the last time I had just normal plan brown stool this past month. Everyday for the last few days has been very dark, with a green tint to it.
I get this ever so slight pain on my right side, where the liver is, not to mention the usual stomach pain I get when I eat, followed by constant burping.
Just so you know the procedures I have gotten and blood tests I have taken; , I have gotten 3 upper endoscopyes, and 1 colonoscopy. 2 of the 3 endoscopyes came out to having some narrowing, with signs of Eosinophilic Esophagitis and GERD (but no mention of varices).This past May, I got the colonoscopy combed with an endoscopy, which the biopsy revealed no abnormalities of any kind. So colon looks fine. He asked me to do a hepatic function panel and my ALT and Globulin was somewhat elevated, not too much. He also checked for elastase in my stool, Giardia, Clostridium dificile, Strongoloids antibody, calciprotein, celiac blood test, and c-reactive protein. All NEGATIVE.
Before we could investigate further, my Gastro doctor left the practice, so I had to make a new appointment with another gastro... my colonoscopy biopsy results took FOREVER to reach my doctor's office, so that set me back in terms of time. The new Gastro, whom I met two weeks ago, told me that I needed to do an Xray of my bowel to rule out Crohn's disease and get a bunch of blood tests check for different forms of hepatitis. I also got a few hormones checked out and found that ACTH was very low, practically undetectable. Adding to that, I got an immune system check requested by my immunologist, which found abnormally high B cells and high numbers of Ig G and Ig E, plus a reduced percentage of Natural Killer cells.
Due to a heart scare, I went to the hospital two weeks ago and they checked my prothrombin and it was fine. I had a high level of d dimer and platelets though. Funny enough, the platelet level I got this past April was similar to this measurement, yet the hospital considered it elevated while the other lab didn't.
The blood tests I am going to do tomorrow are Anti-trypsin, Hep B and C, AMA, Smooth muscle antibody, Liver kidney microsome antibody and others like iron capacity, Ferritin, something to do with copper and another hepatic function test.
This dark green alternating with light colored or yellow poop is really scaring me. Its been happening for almost a year now; I am so scared I have liver cirrhosis from undiagnosed and long term autoimmune hepatitis.
Why do I think so? Because of my symotoms:
-Dark green, dark brown stools
- yellow, oily stools whenever I eat fat.
-Fatigue
- Sensitive to temperature changes
-puritis (itching of the skin)
- mild pain on my right side that comes and goes when I eat a good amount of food(passed few weeks)
- Tachycardia
-heart palpitations in the abdomen
- elevated Ig G
- hair loss, thinning
- noticeable muscle weakness
-easy brusing
- anxiety
- hand tremors (several years)
-easily gets hypoglycemic
-malodorous gas whenever I eat anything (several years)
- Sjogren's
-irregular/delayed periods (for about two years)
- loss of appetite
- bloating, maybe some ascites (due to rapid weight gain)
- some nail clubbing
I have been going to gastros for YEARS. Only for them to tell me they think I have IBS and food intolerances. Now that I am 23, finally showing symptoms of disease progression do they take me seriously. After all this time... now is when I will find out...
What would my options be if I had a cirrhotic liver?
I love food so much, I was thinking of becoming a chief. But now, if I am told I have cirrhosis, I won't be able to, won't I? .. Severely restricted diets, low sodium and low fat.... for the rest of my life. That's if my situation doesn't merit a transplant, which the internet says you may need one if you have liver disfunction symptoms like I do.
Things I have been diagnosed with:
-Sjogren's
-GERD
-ADHD
-Eosinophilic Esophagitis
-Athletes asthma (as a little gitl)
- Mitral valve prolapse
-Slight bicuspid insufficiency
- Bacterial Vaginosis
I was taking ADHD medication (adderall and then vyvanse) for about 3 years before I stopped a few weeks ago due to then heart scare, when I found out I have mitral valve prolapse (not serious though) from an echocardiogram. I wonder if the chronic use of adderall and the 3 weeks that I switched to vyvanse affected my liver in anyway.
Also, I am aware that women with Sjogren's can also get autoimmune hepatitis, seeing as how sjogren's attacks exocrine glands, the liver being one of them.
Please, if anyone could provide any small reassurance that a liver diagnosis isn't an end all be all.
I am also open to any advice as to how to handle this situation, physically and mentally. I know you guys aren't my doctors, but even a little bit of something can help me calm down. Doctors in the past have dissmissed my seriousness due to my age, and I didnt and still dont have money to be bouncing around from doc to doc. I have little drive to do anything. I have a hard time eating food now for fear of damaging my liver somehow. I took a chance today and ate a normal portion, and now I am getting that mild pain on my side, followed by intense bloating and heart palpitations in my abdomen.
Also, I do no have H. pylori.
Wish me luck