Not just IBS pain..

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Just over 4 years ago I was diagnosed with IBS. This has been an ongoing problem ever since. However, for the past 2 months, i have been in agony with stomach pains, it doesn't feel like just IBS. 

I've had blood tests, stool tests and just two days ago, both a gastroscopy and colonoscopy. Everything has come back clear.

I'm really starting to lose it, I just want to be out of this pain. As well as the pain, I've lost half a stone in weight, lost my appetite, constant nausea, cramps, sharp pains, kidney pain and reoccuring water infections. I'm also diabetic and anaemic. 

I have an MRI booked for 29th September, but I'm scared they're going to tell me it's just my IBS. I'm sure I know my body and I know it's not - I don't have to eat anything for the pain to get worse. It's ruining my life. I'm meant to be flying out to Canada in 2 mnoths and worrying that I won't be well enough. 

Any words of wisdom/ideas of what it could be?

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  • Posted

    Hi. I have EXACTLY the same problem. I was diagnosed with IBS a few years ago but I feel like there is something else going on. I have had constant stomach ache all day every day for the past 13 years (I'm 19 now) yet the doctors insist it is 'just IBS'. It drives me mad. It has stopped me doing so many things. It's got worse since I had glandular fever 4 years ago (a bad bout which I had for 8 months). I have had numerous blood tests, a colonoscopy, endoscopy, too many ultrasounds to count (pushing 40, at least!) I have been taken to hospital 7 times (in an ambulance) in the last 2 1/2 years because it has gotten so bad. I will be on the toilet (not needing to go, it's just almost precautionary and a safe place, if you know what I mean) for about 3 hours before a paramedic is called because I physically cannot move to the phone. I will be screaming like mad because it hurts so much. Still they say it's 'IBS'. I was rushed in just before Christmas last year because I had a pain near where my appendix is. They said it wasn't appendicitis and said it was 'possibly' an ovarian cyst. However, this was never backed up and is in my notes as 'a bad bout of IBS'! 

    I have stomach ache ALL day EVERY day. It's like a dull ache and constant churning of my stomach. I eat healthy. I try and exercise but I can't because it hurts too much to stand up. I have to use a hot water bottle because the docs say that they cannot give me painkillers except paracetamol.. I have now built up an intollerance to paracetamol because I take it all the time (never od). As a consequence of using a hot water bottle all day every day (I went to college (on the days I could) and sat in lesson with it!) I now have severe burns on my stomach called Erythema Ab Igne. That hurts as well but I can deal with that because it eases my stomach pain slightly. I think it relaxes the muscles I'm not sure. My doc says, 'stop using the hot water bottle and the marks will go' but if I stop I will be in hospital every day because even though it is still painful, the hwb takes the hospital edge of pain away. They still insist it is IBS. In my opinion, it is bulls**t. I'm 19! I want to go traveling. I want to go out and socialise with friends. The ones that stick by me when I stop eating to see if that helps. The ones that stick by me when I'm chucking my guts up coz the pain is so bad. The ones that call the ambulance because I've passed out from the pain. But I can't. 

    I want ant to know what to do about this and I would love to be able to help you too!! 

    Something is causing this pain, but they are ignoring it saying that it is IBS and stress. They say, take the stress away and maybe it will help. 

    I need to to go now. I have to tell my dad to stop having cancer!! 

    Ive had this since I was 5. That has nothing to do with it!

    So sorry I have rambled on!! Just glad I've found someone in the same boat as me. 

    xxx

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    • Posted

      Ugh, sounds like you've got it rough, my dear. Sending you hugs. I also had glandular fever when I was 19, (I'm 27 now) and I honestly feel like I've never been quite the same since I had it. 

      Thanks for the message, and we can get through this together smile

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    • Posted

      Sending hugs back smile 💕

      I feel exactly the same. Something's definitely changed since having glandular fever. But can't quite pinpoint it. 

      We will get through this ❤️

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  • Posted

    I have also lost a lot of weight. I went from 97 kg to 60kg in about 3 months. That's about 5 stone. It's ridiculous. I stopped eating because it hurt too much. 

    When end my stomach is bad (worse than usual) it cramps and spasms. That's when I know a full blown attack is coming on. 

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  • Posted

    I still say get tested for Celiac through blood test and endoscopy.  All those symptoms could be related to it.  Also have all your vitamin and minerals levels checked.  This is both for Sparkle and Nutty.  Gluten is in more than just food like bread and pasta.  It can be in your medications, canned soups, sauces, gravies or anything with a label. 

    It can take months to a couple of years to start feeling normal again depending on the amount of damage.   

    IBS meaning Irritable bowel syndroms is an umbrella term when doctors can't figure out what is wrong with you intestinally.  Logically speaking, If your bowls are being irritated,something has to be the trigger to cause the irritablilty and gluten causes inflammation anywhere in the body. 

    Please get tested.  Even if the blood test comes back negative, have them schedule an endoscopy.  Blood tests have a lot of false negatives.

     

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    • Posted

      Hi, I did actually cut out gluten for 4 1/2 years (forgot to mention above) but it didn't make any difference. I've cut out gluten (properly cut it out. Got a different toaster as there were normal breadcrumbs in it, checked every single label so I was definitely clear). I've cut out dairy. Cut out meat. I've cut out most things. Cannot eat any acid food either - apples, oranges, pineapple etc. (Think I might be mildly allergic to pineapple actually as I always get massive blood blisters in my throat when I eat pineapple...should probably get that check! 🍍😂) I've recently started eating gluten again in small a,amounts and nothing has changed. My stomach ache is always worse after I eat or drink (especially eat). Doesn't seem to matter what food it is
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    • Posted

      I had an endoscopy with biopsies and blood tests for coeliac and they were all negative. 
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    • Posted

      No. I went gluten free about 2 months afterwards just as a trial and error thing. I lost weight through it and that's why I stuck with it. Lost about 5 stone in 3 months and developed a bit of an eating disorder though it was never properly recognised. Wanted to Lose more weight even though I was quite thin so kept at the gluten free. Had 
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  • Posted

    Please let us know how your blood test goes. Do you have any upper middle or lower back pain with your stomach ache. Where are you abdonail pains located. May I ask your age. I am in the same boati lost 5 pounds this week.
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    • Posted

      I'm a 27y'o female. 

      I get the pain across the whole of my abdomen, sharp pain on my lower left side, and sharp pain under my left rib cage.

      I get burning sensations in my lower back, I've had a couple of kidey infections recently, and am wondering if it's related...

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  • Posted

    Ugh, I feel like it's getting worse. Yesterday, I had such bad pain, I was doubled over, in tears, breathing in made it more painful. It was like this for an hour, and then it eased slightly. Later in the evening, I was really bloated. Eating makes it all worse, yet I know I need to put on weight, and not eating is dangerous for my diabetes.

    I've been like this for 9 weeks now, I can't go on like this. I'm due to go to Canada  to represent Diabetes UK in just under 9 weeks, scared I won't be well enough. 

    Another thing, I've got my MRI next Tuesday, but I don't have a follow up appointment with the consultant, I've been told I'll get my results by letter, unless they find something serious. I don't want it to be like this, I'll be forgotten. Is there any way to make sure I see the gastro specialist?

     

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  • Posted

    A month has passed and still things aren't great. I've started taking anti-sickness tablets which does help to reduce the nausea a small amount. I'm still in a lot of pain though, and it's really got me down.

    I'm due to get my MRI results this week, though hve been told it could be another 2 weeks still. I do however have a follow up appointment...for January...Part of me wishes it's IBS, and nothing else. However, I've tried so much to help my 'IBS' that I don't think I'd be able to cope with a 'just IBS' result. I feel like I'm never going to get better. It gets bad even when I've not eaten and I'm not particularly anxious/stressed. That makes me think it's not IBS.

    I'm feeling really down about this. 3 months I've been like this, I just want to be well. sad

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