Diarrhoea multiple times a day for a year now :(

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I'm a 29 year old female and tracheostomy dependant following a prolonged intubation of 10 days in ICU back in 2013.

My health has been deteriorating for awhile now. I'm desperate for some help and advice.


  • Diarrhoea for over a year now - progressively gotten worse, going multiple times a day, i liken it to mustard but also a poo tap 😦
  • Itchy sensation all over my body, drives me crazy
  • Shocking middle back pain - gets worse as day goes on
  • Full body fatigue, muscle weakness, faint - lost the strength in my cough which i need for my tracheostomy, the more I try to clear my tracheostomy the more faint I feel, black dots in my vision
  • Extremely tired, eyes half shut, sleeping a lot
  • Nausea
  • Weight loss almost daily

I've been having crazy symptoms since December 2017, ive had a brain MRI which was all clear, EEG scan also clear and ive seen a neurologist too. I honestly dont believe its neuro anyway but have been ruling things out which is a slow painful process.

Can anyone help me 😦

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10 Replies

  • Posted

    you should go see a gastroenterologist so they can figure out what is going on with your digestive system as it sounds like thats where your problems may be.

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  • Posted

    You need to go to your doctor's office. I don't know if you're on any medication but you should be journaling your symptoms until you get in to see your doctor. Discuss your symptoms and if you're on any meds (possible side effects, if any) with them. They will likely start ordering tests and refer you to the appropriate department.

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    • Posted

      That's a good thing, then that's one less thing to rule out. I'm on a lot of different medications for multiple medical conditions ranging from a nerve disease to a pancreas disease. I suffer from some side effects. I would journal if there's any specific foods that trigger your symptoms (spicy, greasy, certain veggies, etc.). What I have learned while being diagnosed with Pancreas Divisum (rare condition where your born with two ducts that never fuse together and can cause chronic pancreatitis) is that we can develop food intolerances at any age (as well as Celiec autoimmune disease). It's better to eat six smaller meals rather than three big ones as it's easier for the stomach to digest. If you're vomiting, journal how often and when (in middle of night or right after you eat), these types of details help the doctor. I suffer from itching as well, it's because bile gets backed up in my two narrow ducts. If you have a gallbladder it could be that or your pancreas because they both semi mimic one another however I had more flu like symptoms when I had gallstones. It definitely sounds GI related but you're in for a long ride. It took the doctors over a year to diagnose something I was born with. If it is your pancreas, the pancreas is the hardest organ to diagnose due to its location. Do not let that discourage you but also be patient with tests. I had an ultrasound, endoscopy and blood work all come back normal. A CT Enterography showed atrophy of my pancreas, then a MRCP was ordered and that's when my two ducts were discovered. I then had an ERCP and was diagnosed with CP at my young age of 38 (it's not common for people my age, it's common amongst the elderly). I've undergone every treatment but my two ducts continue to cause attacks and now I will need to have my pancreas removed. Technology nowadays is amazing. I'm sending positive vibes your way.

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    • Posted

      wow you've been through a lot. Sorry to hear. I had my gallbladder removed years ago from a gallstone stuck so i can rule out that too lol.

      I've found even when i drink water i will get diarrhea after so non of it makes sense. Im down to 57kg now too 😕

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    • Posted

      having your gallbladder removed can lead to chronic diarrhea as well as bile acid malabsorption, I had mine removed years ago as well and think i might have developed this. do you ever throw up on an empty stomach and if so what color is it?

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    • Posted

      When you have your gallbladder removed, you're supposed to change your diet to a low fat lifestyle (not one doctor told me this back in 2003) and I was running to the bathroom after eating anything with fat in it (I also didn't know about my pancreas issues back then). Also when having your gallbladder removed sometimes the doctor can nic the SOD (sphintor of oddi) which can cause pancreas issues as well. There's a lot of doctors who know about the pancreas but do not understand it. Most doctors rely solely on blood work but if you're already chronic then blood work won't show pancreas issues. However, blood work can rule out other conditions. I would ask for blood work and a fecal test for EPI (this test will show if your pancreas is producing enough enzymes and if your body is absorbing foods). I would also ask for a MRCP after a CT (if the doctors work with you). I wouldn't waste your time on an ultrasound unless you're having lower back pain (kidney area). In my experience ultrasounds are only good for kidney stones/cysts not the pancreas due to its location. I had experienced vomiting, nausea everyday, waking up in the middle of the night vomiting undigested food, feeling full after a couple bites, migraines, acid reflux, hair loss, clay/pale stools, pain after eating so bad I was scared to eat, debilitating pain even though I was already on pain meds, fatigue/exhaustion, pain that radiated to my left side of back, itching (super annoying but it's because bile gets backed up), rapid weight loss (I loss nearly 50 pounds in a matter of months), weakness, bloating so bad I felt like my stomach was going to explode and more symptoms. The above symptoms are my everyday norm for me now. I now know when my pancreas is flared I need to rest it by not eating solid foods for a couple days. I am allowed to take Tylenol to help with inflammation and I use heat packs on my stomach and back. I also developed kidney stones due to malabsorption because it took the doctors so long to diagnose me. Luckily, I was able to pass them but now I have a cyst on my kidney. Watch for kidney pain as well if you end up having pancreas issues. I kept a journal of my symptoms and it helped my specialist. I've been through a lot, so if you have any questions, don't hesitate to ask. Good luck and I hope you find answers soon.

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