Undiagnosed since Oct 2018

Posted , 3 users are following.

In October 2018 I Started to feel a pain on my right side between my hip and my lower ribs.

About this time i started to see what i thought was blood in my stool. It would seep out like a soaked rag, red all the way through.

I went to the doctor they did blood tests, stool tests. The pain was slight and i had no other issues.

By January 2019 the pain had doubled, i now was not digesting food correctly, sometimes food would sit in my stomach for over half a day, leaving me bloated, burpy and really uncomfortable.

At the end of January i had an attack of sorts, had a large fatty meal. My body shut down, my right side was in so much pain. I also just felt poisoned, my urine was also this dark red colour over this time. The pain got so bad i had to go to hospital, where they said it was IBS and to go home.

I Went back to the doctors, they did liver function tests, red/ white bloods, all the normal. stool test for blood and celiac disease, all came back “normal”. I stressed that I thought this was gallstones or an issue with my pancreas and asked for an Ultrasound. It was a 3 week wait for my letter for the appointment for the ultrasound then a further 2 weeks for the ultrasound itself.

A week after the ultrasound I had another attack, this one was worse. I had cured meats one night, and again body shut down. This time there was vomiting, shivering, and huge inflammation from my stomach through my full intestines. My urine again was dark red. I had diarrhoea for 3 full days, every 15 minutes. I couldn’t eat, hardly slept. Due to the loss of electro lights my muscles started to ache and my toes started to curl and hurt. Started taking electro lights after this started to happen, stopped the muscle pain.

The diarrhoea was red, then it was just mucus, red/orange. Every time I drank water, more mucus would come out of me. I tried everything to stop from continually going to the toilet, out of desperation as I thought this was going to be my life from now till I died, I took a steroid anti inflammatory that my partner had left over from a treatment. Within 20 minutes the diarrhoea stopped. The pain went down. And I could eat again. But I had practically no stomach acid. Anything I ate sat in my stomach, caused huge amounts of pain. Passing through me mostly undigested. At this point I was on boiled rice and boiled chicken.

I bought stomach enzymes, bile salts and stomach acid pills. Food was now being digested and now I had solid stools.

I waited two weeks for my ultrasound which I got the results over the phone, they said it was fine no issues. Then 2 week wait to see my doctor to go over the results. She didn’t have the scan, only the letter from the radiologist, which stated the size of my kidneys was normal. Which isn’t really what I had the ultrasound for. No mention of my gallbladder or anything else. I was told I might need to wait for another ultrasound, at this point she had no record of the tests in January. So I had to have them all redone as well. That was Friday the 29th of March.

I am still in a lot of pain, my right side is really sore. I am still seeing what looks like blood seeping out my stool. I have stopped taking the acid pills, but continue with the bile salts and the enzymes.

I have no pain lower down only my right side and my stomach. I had tests for a urine infection when I had my first attack as well as checking my appendix. I’ve also had tests for helicobacter pylori No signs of anything.

The doctor after her about the lack of stomach acid, prescribed me omeprazole and peppermint capsules. I asked, if I feel as if I’m not digesting food, even to the point of supplementing my stomach acid, why prescribe something to reduce the stomach acid in my stomach. She said it would “create a protective barrier” which I’m not quiet getting.

She has stated on every occasion that I have IBS and that’s that. When I said the highly localised pain isn’t a symptom of ibs usually. I was told that it can happen.

Long term problems that might be import, maybe?

in my late teens and early 20s I had random rush’s of adrenaline my heart would race for no reason, beat out of my chest. Then stop. They tested my heart, refused to test my adrenals. It got less frequent over years. Then stopped.

High carb meals since 13/14 years old till today have made me drop a sleep for 12 hours plus once for 48 hours. I started taking modafinil in my 20s to stay awake. This was on off till I gave up carbs.

Mid 20s I gave up carbs and went on a low carb diet for 5 years it changed my life I stopped falling a sleep and felt more present. Before this I gave up gluten. It helped but not as much as giving up a high carb diet. ive had to give this up since oct 2018.

I have had ADD for most of my life, I have only recently been diagnosed as I now have the money to see a specialist. However the stimulants put me to sleep. No matter how many I take. I have been prescribed Adderall and Ritalin and Vyvanse, all of which have had no effect other than to put me to sleep. My doctor doesn’t really understand why. Since my mid 20s I have started to lose my hair and have scalp acne, it is almost constantly sore. I’ve tried every shampoo with no SLS or no additives. Baking soda. No shampoo. Etc. Everything you could think of. Nothing. Scalp feels soft, red, swollen.

Any help with my failing body would be amazing.

I feel as if my doctor wants me to just admit that this is it and not come back. But I’m seeing her in two weeks. So any help you can give me would be really beneficial.

Thank you


0 likes, 4 replies

4 Replies

  • Posted

    do your stools really stink ? and often yellow loose stools ?

    • Posted

      tbh they have been all different colours 😄 for a long time they were a greeny yellow and they stank. I mean they still stink, but they are mostly a burnt red, with red that seeps out

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