Discussions By Condition: I cannot get a diagnosis.

Abdominal Pain

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: .emily.
  • October 9, 2008
  • 08:48 AM

I wonder if anyone can help me with this, because the doctors certainly can't!

My symptoms are severe abdominal pain which is worse high up and centrally. But this spreads all into my flanks, and basically over my whole abdomen. (with the worst bit being that top, middle bit).

The pain is always there at varying levels. It is a constant kind of pain rather than a sharp sort of thing. Sometimes it feels sort of tight, like I've got a really tight belt round there that's hurting. When it gets bad, its builds up pretty quickly and stays at a constant hurting level. This really bad pain is completely debilitating - I just can't do anything, I can't even stand up straight. It happens every day for some time, and sometimes lasts all day. The rest of the time the pain can either be very painful and stop me from doing things, or more manageable (but it never goes away).

I have diarrhoea every day. It really gets ridiculous. I average between 3 and 6 times a day - sometimes more. I can't remember when I last went only once a day lol. The diarrhoea is very bulky - there's loads of it - and has undigested food in it. It is yellowy in colour, unless I've had tomato sou; then it is orange. I do get mucus, but I don't get blood. I only had blood once, and that was very bright and so probably from a bleeding internal haemorrhoid.

My other symptoms include poorly joints - all painful and stiff, especially in my small joints (hands, feet). I get headaches and lots of nausea (sometimes sickness). I generally have a slightly high blood pressure, but sometimes this drops and I feel all dizzy, more sick, and like I'm going to pass out. This usually happens with a particularly huge poo, but sometimes just randomly happens. I often get quite disorientated - got lost in a place I know well twice last week - and my head sort of slows down, I struggle to comprehend stuff and I can't find the words to say something. Which is odd for me because I'm a very wordy person.

Drugs I have tried without effect: paracetamol, ibuprofen, co-codamol, tramadol, dihydrocodeine, nefopan.

Drugs that have worked: morphine (but I can't take that home with me lol). Although, even with the morphine, I was given 10ml and it lasted for about 40 minutes before the pain came back worse.

Current ones I'm trying: pregabolin (to block nerve signals), omeprazole, propranolol (we think I could be having migraine). The pregabolin I've been taking for nearly four weeks, and its not doing anything yet.

I've had a million tests. My bloods are annoying, they sometimes have a raised ESR and CRP (the inflammation markers) and are usually normal. I don't know if they are right, but once its gone back to normal, the doctors don't really care its been up (no other infection going on at those times either).

I had a gastroscopy and a colonoscopy, both normal. Ultrasound which was normal. MRI - normal (were looking at small bowel mostly). Just waiting now for CT Scan results, which will probably be normal.

I have also tried food exclusion diets with no effect.

This whole thing has been going on, and getting worse, for years and years. I am 19 now, and I have had these issues from being 12 or 13.

I'm fed up of being told its IBS, and being told they try a combined treatment approach. I forgot before, but I have also tried fibregel, mebeverine and buscopan (this made my pain worse). I also do not have the bloating and excess wind associated with IBS. I also get woken up in the night (for toilet and by pain), which is not typical for IBS.

I spent two weeks in hospital in August well they ran some of these tests. Apart from that, I've spent all summer at home being poorly and unable to do anything. I'm now back at university. Its only my second week and I'm missing loads of it already because I'm ill. I'm very, very tired and however much I sleep it doesn't make me less tired. I've tried just having a straight 7 to 8 hours sleep and that doesn't help either.

I realise that I could be looking at several separate things - like migraine, arthritis and something in my tummy. But I don't know, I just have this feeling they're overlooking something. I suppose that's because I'm so poorly, I just think "it hurts so much, there must be a cause!".

Any help or suggestions would be very gratefully received - this thing is ruining my life!

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5 Replies:

  • I forgot to write, I have also tried diclofenac and metroclopermide.
    .emily. 2 Replies
    • October 10, 2008
    • 09:13 AM
    • 0
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  • I am so sorry to here about your pain I wish I could help you.Your instincts are probably right.I am 43 and I have been sick since I was 28.Take my advise and stand up for yourself.I have just started.I have spent 15 years letting the doctors treat me like a nut case or a silly little girl.Tell them what you think I know your in terrible pain but do research and then request the test you think you need.You probably have a rare genetic disorder look in that direction.Good Luck and God Bless,Lamb232
    Anonymous 42789 Replies
    • January 8, 2009
    • 08:34 AM
    • 0
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  • Hi - my name is Janet. Don't know if I have your answer, but have some suggestions you might check with your doctors. I developed Systemic Lupus Erythematosis (SLE) when I was fairly young, either late 20s or early 30s. It is an autoimmune disease, found primarily in women, especially those who have a family history of same (your history could also include any type of arthritis, because Lupus mimicks arthritis). Systemic Lupus affects your entire body - different people in different ways. I myself have had 21 surgeries, about 16 of them abdominal, 13 of them for bowel issues. This has been going on since I was 29, and I am 48 now. My Lupus often stays in remission, but when it hits, it does so hard. It can virtually affect any and all areas of your body, especially your intestinal system. Doctors often confuse it with IBS, Chrone's Disease, Celiac Disease, etc. You need a specialized blood tests called an "ANA", which will give your doctor something called a "titer." Depending on the results of the test, if you do have Lupus, they may be able to place you on medications which will dramatically help you!! You would be shocked at how often I have had to ask a doctor "Do you think my Lupus could be causing bowel problems?" It's like they never even relate the two! I wish you the best, and I do know gut problems SUCK! I have had most of my bowel removed (barely missing having to have cholostomy bag), and have had chronic diahrrea for 20 years now. I urge you to see about getting a Lupus test, or even just one for Rheumatoid Arthritis. Best of luck - and I hope you are feeling better soon!!
    Anonymous 42789 Replies
    • January 10, 2009
    • 03:31 AM
    • 0
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  • Hi. I have a 6 yr old daughter with 2 month long abdominal, loss of appetite (no major weight loss), but normal bowel movements. Tested her blood and results normal: no anemia, normal white blood cell count, no celiac disease, but she had a raised ESR of 51. We did a CT scan of her belly and fortunately no neuroblastoma was found and all organs looked normal. We will test her ESR again next week and pray for a decrease, but the inflammation could be from anything. I hope your CT gave you some answers.
    Anonymous 42789 Replies
    • February 19, 2009
    • 05:40 AM
    • 0
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  • I wonder if anyone can help me with this, because the doctors certainly can't!My symptoms are severe abdominal pain which is worse high up and centrally. But this spreads all into my flanks, and basically over my whole abdomen. (with the worst bit being that top, middle bit). The pain is always there at varying levels. It is a constant kind of pain rather than a sharp sort of thing. Sometimes it feels sort of tight, like I've got a really tight belt round there that's hurting. When it gets bad, its builds up pretty quickly and stays at a constant hurting level. This really bad pain is completely debilitating - I just can't do anything, I can't even stand up straight. It happens every day for some time, and sometimes lasts all day. The rest of the time the pain can either be very painful and stop me from doing things, or more manageable (but it never goes away). I have diarrhoea every day. It really gets ridiculous. I average between 3 and 6 times a day - sometimes more. I can't remember when I last went only once a day lol. The diarrhoea is very bulky - there's loads of it - and has undigested food in it. It is yellowy in colour, unless I've had tomato sou; then it is orange. I do get mucus, but I don't get blood. I only had blood once, and that was very bright and so probably from a bleeding internal haemorrhoid. My other symptoms include poorly joints - all painful and stiff, especially in my small joints (hands, feet). I get headaches and lots of nausea (sometimes sickness). I generally have a slightly high blood pressure, but sometimes this drops and I feel all dizzy, more sick, and like I'm going to pass out. This usually happens with a particularly huge poo, but sometimes just randomly happens. I often get quite disorientated - got lost in a place I know well twice last week - and my head sort of slows down, I struggle to comprehend stuff and I can't find the words to say something. Which is odd for me because I'm a very wordy person.Drugs I have tried without effect: paracetamol, ibuprofen, co-codamol, tramadol, dihydrocodeine, nefopan.Drugs that have worked: morphine (but I can't take that home with me lol). Although, even with the morphine, I was given 10ml and it lasted for about 40 minutes before the pain came back worse. Current ones I'm trying: pregabolin (to block nerve signals), omeprazole, propranolol (we think I could be having migraine). The pregabolin I've been taking for nearly four weeks, and its not doing anything yet. I've had a million tests. My bloods are annoying, they sometimes have a raised ESR and CRP (the inflammation markers) and are usually normal. I don't know if they are right, but once its gone back to normal, the doctors don't really care its been up (no other infection going on at those times either). I had a gastroscopy and a colonoscopy, both normal. Ultrasound which was normal. MRI - normal (were looking at small bowel mostly). Just waiting now for CT Scan results, which will probably be normal.I have also tried food exclusion diets with no effect. This whole thing has been going on, and getting worse, for years and years. I am 19 now, and I have had these issues from being 12 or 13. I'm fed up of being told its IBS, and being told they try a combined treatment approach. I forgot before, but I have also tried fibregel, mebeverine and buscopan (this made my pain worse). I also do not have the bloating and excess wind associated with IBS. I also get woken up in the night (for toilet and by pain), which is not typical for IBS. I spent two weeks in hospital in August well they ran some of these tests. Apart from that, I've spent all summer at home being poorly and unable to do anything. I'm now back at university. Its only my second week and I'm missing loads of it already because I'm ill. I'm very, very tired and however much I sleep it doesn't make me less tired. I've tried just having a straight 7 to 8 hours sleep and that doesn't help either. I realise that I could be looking at several separate things - like migraine, arthritis and something in my tummy. But I don't know, I just have this feeling they're overlooking something. I suppose that's because I'm so poorly, I just think "it hurts so much, there must be a cause!".Any help or suggestions would be very gratefully received - this thing is ruining my life!Hi.....I noticed your post, and I have to tell you I had the same type of symptoms starting when I was also 13. I am now 54, and after all of the testing I went thru, I was continually told I also had IBS. My internist sent me to yet another gastroenterologist....but he did one test they didn't have 40 yrs ago: a HIDA scan on my gall bladder. It showed that it my ejection fraction was almost non-existent and I had gall stones. None of the MRI scans, Endoscopes, X-Rays, Barium Enemas...showed anything....but the HIDA scan was the only one that showed I needed to have my gall bladder removed. It was no big deal, after all of the years of pain.Just a suggestion...I did find out my esophagus was inflamed during my endoscope...Good luck!
    Anonymous 42789 Replies
    • November 24, 2009
    • 07:14 AM
    • 0
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