Long suffering mystery illness, out of ideas and hope.

Posted , 8 users are following.

Hello everyone, i am looking for some thoughts and advice about a health issue i have been battling for 8 months now.

I am a 24yr old male and it all started back in july/august.

Over 2 weeks i had 4 random episodes consisting of sudden overwhelming sickness usually followed by vomiting or gagging and sometimes a severe bowel movement or activity.

Then one day in august shortly after getting up and eating normally it hit hard. had the same vomiting and severe nausia, but refused to stop all day and could not eat.

The next day followed the same, vomiting and gagging shortly after waking up with added severe diarrhea, no apatite, shaking, feverish, weakness, anxiety and abdominal pain. This occurred every day for 2 weeks. I was absolutely dead, would spend most days sat and wandering about my land necking bottles of water.

Eventually the diarrhea (replaced with sticky fowl smelling pale stools) and gagging/vomiting stopped. But the rest continued with general nausia and almost daily panic/anxiety attacks continued up and down in severity for 3 months causing me to loose about 2.5 stone over that time.

During this time i saw 4 diffrent GPs once a week, was forced onto liquid meals for a while to counter the loss of apatite and weight loss the best i could. Went gluten and dairy free. Took over 10 stool samples which all came back clear except fecal calprotectin that came back 68 (told 0-50 was normal) 4 blood tests which were normal and ruled out celiac. Underwent a upper endoscopy and colonoscopy which came back clear including biopsies.

The symptoms toms slowly got less severe and 2 months ago managed to actually gain some weight back and had periods of feeling normal. But to this day i still suffer from abdominal pain and tenderness/soreness around my belly button especially after eating, tiredness, mild loss of apatite and nausia, bloating and gas and generalised anxiety and even over the smallest daily tasks especially eating.

I feel that my doctors are out of ideas and classed it as ibs but with non of the following medicines greatly helping

Colestid, mebevaline, Amitriptyline 10mg, buscopan, probiotics, slippery elm extract, lansoprazole, imodium.

I am a ruined man. It has destroyed my life and am on my knees begging for help.

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11 Replies

  • Posted

    Hi Bsaman001

    You do not mention having any blood tests. You should have a full blood count.

    Low iron, Low vit b12 and vit d can cause digestive and gut problems also tiredness and fatigue. Ask your doc to order the blood tests as a second opinion...

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  • Posted

    I'm so terrible sorry for what you are going through. I've suffered some abdominal problems and I want to offer just a bit of information that may help. My colon was adhered to my bladder and that caused some similar problems in me. I'm afraid surgery was required to fix my problem.

    Is it possible you have parasites suddenly living in your colon? There is a therapy discussed on

    youtube by a Doctor Jay Davidson that may interest you. It worked for me and I was actually able to see the little buggers in the bowl. Oh it's called the Gerson Therapy. I hope you find

    an answer soon.

    Ron351

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  • Posted

    Yes i have had 4 general blood tests to check for any abnormalities which all came back clear.

    I did think about a possible worm or parasite problem, the doctor told me any parasite or worm would show up instantly in a stool sample and having 10+ clear he doubts it. I did secretly take a course of worm medication which failed to help, having a rural lifestyle i hoped that would be a possibility.

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  • Posted

    Suggest you consult a registered dietition or nutritionist who can give you a daily menu of food to consume for your condition. Many will accept insurance if referred by your doctor.

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  • Posted

    Dear Bsaman001,

    I have similar problems but it NEVER means we have the same issue.

    I also feel very sorry for you and hope you hang in there. Do NOT give up.

    The first recommendation if your are going to try to help the G.I. Dr's find this issue is to watch how much comes out. If you are NOT going to the bathroom much and the amount going out is less than what is going in. The food is NOT going into stomach for whatever reasons or staying in stomach and is a Gastro issue.

    If you are just having bad stool and suffering. It sounds like a post gastro colon/prostate or maybe even Pancrease.

    The biggest problem you and the Doctors could be experiencing is a problem that is slowly about to show its ugly face when it completely fails. I got lucky on my diagnosis that they found the problem on the first endoscope. Because the second time they did endoscope. The problem was not present and I got rejected for 2 years and fought for my life. Then when it was obvious I was going to die, they admitted it was an intermittent issue and it had finally failed and they no longer debated my diagnosis.

    Never give up. Keep asking questions, keep begging, keep checking into E.R. too when it is at it's worse.

    Eventually it will be so present the right Doctor will make your day. Diagnosis is the first step towards recovery. As far as anxiety attacks. They are my worse enemy. And the treatment is to blame it on psychology and ignore your issues. Do your best to hide and conceal it. Make them focus on the real issue causing it. It is NOT always a psychological issue. I wish I was a Dr...There is another guy in this form Pippa.

    He seems to be the best help. Food Diary on what goes down and what comes up is a very good start.

    I did same thing and even charted my daily weight losses on a chart. It was useless after I found out what my disease was. But it did help me narrow it down. I still have certain foods and drinks I can eat and some I can NEVER touch again. How much weight have you lost so far? Do NOT let it get below 120lbs. or you will be in surgery danger zone.

    At 90 lbs and less no Dr. can help you. Onlya feeding tube will keep you alive. When you are ready go for it.

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    • Posted

      My apologise. Went back and read your statement of losing 2.5 stones which is 35 lbs. in the U.S....I think you might be getting close to qualifying for a feeding tube. Must lose 1/3 of your weight in U.S. to qualify. There are 2 types. 1 a tube down the nose. Second a G-Tube hole and tube placed in stomach. I hated it..BUt it saved my life. Whenever you feel like you cannot handle it anymore beg for feeding tube.

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  • Posted

    The lack of energy,diarrhea, and anxiety attacks are being caused by lack of food intake. Glad it goes away now and then..BUt when it is at it's worse..That is when to let them try again.

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  • Posted

    You must quit throwing up/vomiting..... Every time you vomit you train your stomach to expel instead of digest. You must retrain your stomach to digest by never vomiting again

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    • Posted

      Some of us have Achalasia which is when the LES sphincter completely closes to the width of a noodle and starve to death. Starvation is not as bad as dehydration. I can go 3 weeks without any food. But 6 days is my record for no water. This guy is NOT throwing up by choice. I also read an article a month ago where a father had his daughter unable to eat due to a gullet disease.

      I wish it was as easy as mind over matter. But when you cannot get food into your stomach there are lots of diseases or issues that cause that.

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  • Posted

    I had that problem for about 1 year ,sick on my stomach throwing up and my navel hurting. decided to see a dr and had an ultrasound done but it said that all was ok even my gallbladder was ok but about 4 later I seen another doctor and he said that I had a navel hernia and that I need it fixed as soon as possible so I scheduled it but the morning of the surgery the nerve ask me if I was feeling ok or had and problems and I told her only sick on my stomach and throwing up so she called the doctor to tell him and he wanted to talk to me and told me that he was canceling my surgery because he thought that my gallbladder was bad and I told him no it can't be because I just had it tested and he ask me how and I said by ultrasound and he said that the ultrasound is not real reliable so sent me to get a test where I had to drink this drink and they took pictures and the doctor called me that day and told me that my gallbladder was bad and that was what was causing me all of my problems and that the throwing up is what caused my hernia so he took my gallbladder out and fixed my hernia at the same time. Hope this helps

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  • Posted

    It was called an esophagram Ted.

    Good Job!! I forgot how important those are for this type of issue.

    You drink a barium shake like drink then get in front of an x-ray that records the barium going down through your digestive system.

    That is an excellent item for him to do if the Dr's have not allready done it.

    Other than that. Those are all the tools they have to treat digestive issues.

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