Posted , 2 users are following.
To start, I believe I have some sort of connective tissue disorder in which my skin is extremely weak. I have a constant feeling of fluid moving beneath my skin which I've been dealing with for about a year now and rapidly lost weight over this time. Additionally, I have scoliosis. I have a lot of pain, nausea, difficulty eating, etc. and I also have a sensation of leaking from the duodenum area in my abdomen. It feels as though acid is leaking from the area. Due to the weakness in my connective tissue, my theory is that the acid was able to leak into my tissues which eventually resulted in acid eroding the tissue in my limbs. My skin is essentially like an acid filled bag around a skeleton now; it sags and is very loosely connected to my muscle. I am only 22 yet so much of my collagen is destroyed.
This leak has been near impossible to find due to the fact that the fluid does not stay in my abdominal cavity as is typical with a gastro leak and instead goes into my tissues. My first GI doctor believes this leak sensation is caused by SMAS (superior mesenteric artery syndrome/Wilkie's disease) because a scan revealed that my stomach and proximal duodenum were dilated. However, I saw a 2nd GI recently who disagrees. Either way, I began a full liquid diet as I cannot tolerate solid foods and have been consuming mostly protein/nutrition shakes and bone broth as well as supplementing with L Glutamine. I've gained 6 pounds already but have had zero relief and continue with an extremely sensitive abdomen.
I find that whenever I even ever so slightly bend my abdomen, I have extreme pain as well as this sensation of leaking, burning stomach acid. I've spent the past few months trying to keep my body and posture as upright and straight as possible to prevent this pain and allow my body to heal but the process is agonizingly slow due to the CTD. In November, I had more tests done with the 2nd GI and was diagnosed with pelvic floor dysfunction after scans showed large amounts of stool throughout the colon. He believes that that is the cause of my pain and that if I keep myself regular it will stop. I have been taking miralax and other medication to keep myself regular, however, I am still in pain.
I feel like the cause of my pain is my gallbladder or something with the bile ducts. I cannot tolerate fat, I have pain where my gallbladder is (and it feels as though it's pushing against my ribs), and pain at the bottom of my left shoulder blade.
If anyone has any idea what could be wrong with me or experience similar or any advice on my case in general please let me know, I'm so desperate and afraid.
0 likes, 4 replies