Mystery, just no idea

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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

Cooper

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9 Replies

  • Posted

    One thing, I don't know your age, but have you ever had a bad head injury?

    I ask because I had a lot of those kind of things and it was not until I got thyroid tests that they saw I had bad results.

    I also had problems with my pituitary function.

    I thought I had so many different problems and no answers and researched each little thing trying to figure it out.

    They can test your thyroid levels and go from there. It might take more than 1 test to compare at different times but its worth asking just to set your own mind at ease.

    A head injury can set off pituitary problems in women.

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  • Posted

    Sounds like me when i my diverticulitis attacked ... I was told its for the last 20 years , then my bowel perforated resulting in emergency surgery , they thought it was appendix but upon looking through a camera they see it was much more than that. So i had a right hemicolectomy to remove the infected bowel. Previously though twice i had a colonoscopy and sigmoidoscopy and they said all appeared normal in the bowel but they could not reach all the way round due to scar tissue? But assumed it looked normal. They were very wrong. So diverticulitis got infected and it perforated my bowel. 20 years treated for ibs ,, i also get amemic often and need high protein and high fibre and high water intake to help my body get goodness as my Cecum was infected for so long causing bloating nausea extreme pain after food, felt like i couldn't eat or drink as not long after i would be crippled with pain. Palpitations i suffer with too but I have high anxiety, ocds too so secret worrying causes this i think.

    Please ask them to check for other bowel diseases. I was clear on all tests so there must be better ones out there as all omg it was not clear.

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  • Posted

    IBS is different for everyone so it is possible to get localised pain from IBS. Your doctor is right about this. Some people get shifting pain, come and go pain or it can be generalised or constant. No one person is the same. When you have an ultrasound, all abdominal organs are scanned, including your gallbladder. If gallbladder problems were found, you would have been told. However, if you are still stressing about your gallbladder, ask for a HIDA scan to check gallbladder function.

    On the other hand, since all your tests have been negative, I would accept your doctor's diagnosis of IBS. Your doctor is the expert. IBS doesn't show on scans and tends to stay in flare up mode if you have ongoing anxiety. You could try the Low Fodmap Diet or a food diary and try relaxation techniques. Do you find your symptoms subside when you are busy? This can be a sign of IBS. Try light exercise such as walking or a hobby which can help to take your mind off your symptoms.

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    • Posted

      Im sorry, but i dont put as much blind faith in doctors as you seem to, I mean she’s lost a load of tests, admitted to doing wrong tests and once got me confused with another patient, file out and all, if I had your blind faith and just ran with it who knows what would have happened. IBS is also not a disease its a symptom of something greater. If you had brittle bones, and went to the doctor and said, I have broken my bones multiple times this year. And she said. Sorry you have BBS brittle bone syndrome, try not to move as much and not walk to quickly. Maybe buy some padding. You would shake your head in disgust. I think you would try to find out why your bones were brittle and how to get them back to a strong state.

      Telling me I have IBS for no reason, that it won’t get any better, that I just need to go home and limit what I eat and hope for the best is utterly ridiculous. Your bowel doesn’t just become irritated, that is a symptom of a greater problem. Limiting food may help it heal. But why has it gotten so weak in the first place?

      I’m 30 btw

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    • Posted

      I do not have blind faith my doctor. My belief in what I was told is based on the fact that I was correctly diagnosed with IBS when my other doctors failed. I was diagnosed with stress related IBS and this was true because stress preceded my symptoms. While I am calm, I have no symptoms, but when I get anxious, my symptoms come back. IBS is not necessarily a symptom of something greater. I have nothing else worse going on with my gut. Some people may have other things going on but this is not always the case. IBS is not a cut and dry syndrome. This why it is so difficult to diagnose and treat.

      I found that as soon as I trusted my doctor and accepted my diagnosis, my health anxiety and IBS got much better, However, since your doctor has made mistakes, you should see someone else you can trust. If you are given the same diagnosis by your new doctor, then you should accept it. I had no faith in the first few doctors I saw because they couldn't help me, but my last doctor identified my symptoms and that's why I trusted him. Try seeing different doctors and this may give you the reassurance you need and the correct diagnosis and treatment.

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  • Posted

    I myself had a multitude of tests until I felt like the medical staff thought I was a hypochondriac. I totally felt every visit I had to start over from scratch. I saw countless experts but until one simple remark led them to realize all the symptoms combined into one diagnosis. A physician sees you for one visit and often pressed for time due to government or private constraints. Seeing so many patients a day or even as you noted getting someone's information misfiled. I was asked my height and said funny thing is I seem to have grown a couple of inches, and I was then in my fifties.

    This was after all kinds of tests. labs, X rays scans, you name it. One week before my gallbladder burst I had a clean bill of health.

    A lot can change in a week.

    I got sepsis and even the ambulance guys thought I could safely get to the hospital on my own. I insisted they transport me so they could at least start an Iv.

    I am not saying my case is typical but if I had not insisted I would not be here today.

    If you do not think the staff is correctly treating you, get another opinion. A second opinion or how ever many it takes.

    A co worker just went through the bowel problems mentioned by another person here.

    Physicians can be mistaken like any other person.

    It is your body and your life. You know what is typical or normal for you, individually.

    No two people are exactly the same.

    It can cost more to get answers but can you put a price tag on your health?

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    • Posted

      I felt exactly the same way until I was diagnosed with IBS. I felt like a broken record with every doctor I saw. The funny thing was I was so anxious about not getting answers that I had forgotten that I had had six months of stress before my symptoms appeared. I hadn't been aware of the toll the stress had taken on my health. It was the doctor asking me if I had had any recent stress that got me diagnosed. I hadn't thought to mention it to my previous doctors because I hadn't thought it relevant. I assumed it to be something more serious than simple stress.

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  • Posted

    Over the last ten years I saw so many different physicians I lost count.

    So one day they asked what was bothering me the most.

    Until then I had not thought of prioritizing my health as to which ones I had already got used to and which I could not deal with for one more day.

    They add up taking a mental and physical toll.

    I am no expert but I do know how much I can endure and when to cry uncle.

    Don't get discouraged from advice here or from anywhere else.

    Simply state what your limits are and what your expectation as reasonable care is.

    Put it this way. You take a pet to the vet and you have to speak for your pet, as they can not voice their concerns. Would you not expect the same consideration from a doctor?

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