What's it like to have an Inflammatory Bowel Disease? Advice needed.

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Hi All

Hoping some of you kind people might be able to share your experiences of suffering with an IBD, especially during flare ups.

The reason I ask is I've been having lots of problems with my digestive system for the last few years which was put down to IBS, and at points has made me feel very unwell. I recently I had a faecal calprotectin test done and my result was just over 1400 (whatever that means), which apparently is quite high. In light of this result I am due a colonoscopy in just over a weeks time, which will be followed up a small bowel MRI, to start an investigation into the possibility of me having an IBD.

I'm interested in finding out the symptoms IBD sufferers have to go through when their IBD is at it's worst. The reason I'm interested is that for the last few days I have felt worse than I ever have done since becoming ill a few years ago. My symptoms are sharp, sore upper and lower abdominal pain, lots of abdominal churning and gurgling, bloating, nausea, chest pain, pain around my back and especially around my shoulders, finding it hard to draw breath, feeling faint and very lightheaded, diarrhoea with bright red blood (although I only go once a day, never multiple trips to the toilet), feeling flushed in the face, and generally feeling very under the weather.

I'd be very, very grateful if any of you could comment on this, especially if my symptoms do indeed seem indicative of having an IBD, as I'm getting more concerned about my symptoms the longer they go on. I did have a combined endoscopy and colonoscopy 2 years ago, and the only thing found were polyps, which were removed, tested and found to be benign, oh and that I have a very long and mobile sigmoid colon.

Any thoughts, views and comments on this would be greatly appreciated.

Many thanks in advance.

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  • Posted

    Hi Paul , I have diverticula disease, IBS, Colitis, and gallbladder with stones. Some of your symptoms sound like you have gallbladder issues, could be stones or malfunctioning. My DD is left side related, sharp stabbing pains, dull constant aching pain, lower left abdomin, with pain in lower left back, radiating pain down my leg, left side testicular pain, and left back shoulder pain. My gallbladder pain is upper right under lower ribs with pain that goes to my back under right shoulder, sometimes the pain is intense, stabbing and burning pain. My lower right and center abdominal pain can be sharp and sudden stabbing pain, but were unsure what this pain is yet. I’m getting a left side resection and gallbladder removal in 3 weeks. 
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    • Posted


      Thank you for the reply, and sorry to hear that you are suffering with all those ailments, sounds like it must cause you quite a bit of trouble. I do hope the procedures you are having done go well and it improves your quality of life.

      I had an upper abdominal ultrasound scan a little while ago and all my bits, including gallbladder, looked good according to the Sonographer. The follow up review of my ultrasound by the doctor confirmed this. I don't know how accurate ultrasound scans are, but I've been led to believe they are actually very accurate in being able to diagnose some issues with the upper abdominal organs. I also had a faecal elastase test done, and that was normal, indicating pancreas is working well. Blood tests have revealed liver function is fine. In fact all other tests I've had done have shown nothing out of the ordinary, apart from my stool test for inflammatory markers, which gave a very high result, and has led to further investigation for possible IBD. I've got my colonoscopy in a few days so hoping it will at last reveal the reason why I've been feel ill over the last couple of years.

      Thanks again for your comments, and if my colonoscopy results come back normal, then I have an idea of where to start looking next. Good luck for the future and all the best.

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    • Posted

      Thanks Paul and good luck with the colonoscopy. Don’t forget that the gallbladder still could be causing problems even if there are no stones. If you still don’t have any answers after the colonoscopy then I’d ask to have a HIDA scan done to test the function of the gallbladder. I was scheduled for one myself but after the surgeon saw the stones he said there was no need, as it needs to come out. 
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    • Posted

      Thanks for the info. I've certainly made a note of your comments and should my colonoscopy prove to reveal nothing sinister, then I'll definitely push for the HIDA scan that you mentioned.

      Wishing you all the best for your upcoming procedures, I hope they go well for you and you see improvements in the quality of your life very soon.

      Take care and thanks again.

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