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Crohn's Disease Forum » Support Forum » Undiagnosed Club » No diagnosis, intense pain 24/7 for 20 months


09-19-2016, 08:29 AM   #1
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No diagnosis, intense pain 24/7 for 20 months

Hi everyone,

I found this forum with a search and thought that I would create a thread in the hope that someone may offer me something by way of a diagnosis.

I'm 45 and have generally had IBS symptoms my whole life. In November 2014 out of nowhere a sharp pain developed in my lower left quadrant, 1 inch to the left and down from my naval (belly button). This pain is like no IBS symptom I have ever experienced, it is a sharp, cutting, slicing and sometimes burning like pain. It feels like I have been cut/stabbed deep with a very sharp knife and that it has been left inside me. The worse the pain is the more it radiates around and goes up under my ribs and around the back. I have had blood/urine/stool tests and I'm told they were all clear so cannot be IBD related. Colonoscopy is clear, urology clear, CT and MRI scans clear. The pain is so intense I'm on Tramadol which doesn't help all of the time.

I have noticed that some foods and drinks make it worse, alcohol, carbonated drinks, spices all make it worse, but then sometimes don't, it can be quite inconsistent. When I had my preparation for my colonoscopy I had to take two sachets of picolax. The first one had no affect on the pain at all but after taking the second one the day after, the pain was the worst it had ever been.

The more I eat the worse the pain in that area. The less I have eaten, or the longer I have gone without food, the more the pain radiates and becomes a burning/stinging pain, just like it is right now and I'm in agony typing this.

On Saturday I went for a walk, I was very lethargic and my whole body felt heavy. I stopped for a break and for something to eat and I lay back to relax. I put my hand down to the painful area for a feel like I always mindlessly do and felt what I would describe as a 'fat sausage' swelling (sorry) to the left of my naval, right where the pain is. I pushed into this swelling right on the epicentre of the pain and I almost jumped out of my skin, I had a massive instant shock of intense pain the worst I have ever felt. I'm not even sure if this is my small bowel area at all, Ileum? Jejunum?

So here I am, no diagnosis, in constant pain, feeling lethargic (but sometimes not) and wondering where I go next. I am practically in despair, I'm too scared to eat most of the time as the effects especially the day after (like now) are excruciating.

Do you think I have IBD?

Thank you.
09-19-2016, 09:14 AM   #2
ronroush7
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I am not sure. I think you said it was on your left. The terminal ileum is on your right. I am thinking about the jejenum but then again I don't know. Please keep us updated.

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09-19-2016, 10:44 AM   #3
Julia S
 
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What do your doctors think you might have? If you felt such a palpable mass close to your navel it could be a hernia. I had two as a kid. Not fun, but easy to fix with surgery. I would go back to your doctor or even to hospital and insist that you are in a lot of pain and describe the mass you felt. Was one of your stool tests for fecal calprotectine? That test has a very high negative predictive value for IBD. That means that if your fecal CP is in the normal, low range, you most likely do not have IBD. Hope this helps, and do go to the ER if your pain level is that high.
09-19-2016, 10:47 AM   #4
ronroush7
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What do your doctors think you might have? If you felt such a palpable mass close to your navel it could be a hernia. I had two as a kid. Not fun, but easy to fix with surgery. I would go back to your doctor or even to hospital and insist that you are in a lot of pain and describe the mass you felt. Was one of your stool tests for fecal calprotectine? That test has a very high negative predictive value for IBD. That means that if your fecal CP is in the normal, low range, you most likely do not have IBD. Hope this helps, and do go to the ER if your pain level is that high.
Agree

09-19-2016, 02:16 PM   #5
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I am not sure. I think you said it was on your left. The terminal ileum is on your right. I am thinking about the jejenum but then again I don't know. Please keep us updated.
Hi, yes it's on my left, the area apparently could be either the ileum or jejenum, I don't know either sorry.
09-19-2016, 02:32 PM   #6
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Join Date: Sep 2016
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What do your doctors think you might have? If you felt such a palpable mass close to your navel it could be a hernia. I had two as a kid. Not fun, but easy to fix with surgery. I would go back to your doctor or even to hospital and insist that you are in a lot of pain and describe the mass you felt. Was one of your stool tests for fecal calprotectine? That test has a very high negative predictive value for IBD. That means that if your fecal CP is in the normal, low range, you most likely do not have IBD. Hope this helps, and do go to the ER if your pain level is that high.
Hi, my doctors have sent me for various tests as detailed in my original post, the next stage is to look at my small bowels but they seem to be quite clueless about what the actual problem is. The mass I felt only happened a few times before and is normally associated with extreme fatigue. The idea of a hernia has been explored early on and have been ruled out by my scans.

I did go to ER last year due to the pain and that is when I was first prescribed Tramadol by a doctor there but they did not investigate but sent me home. The Tramadol helps but when it's as bad as it is right now nothing helps at all and I'm on the maximum dose.

I'm not sure about fecal calprotectine sorry, but I guess they would have tested for this.

Thanks for replying I know there are lots of threads like this.
09-19-2016, 02:39 PM   #7
ronroush7
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Fecal calprotectin can measure the amount of inflammation in your gut.

09-20-2016, 10:00 AM   #8
Julia S
 
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I would find out if they tested fecal calprotectine or not. Call a nurse and find out, maybe? As I mentioned, it has a very, very, high negative predictive value. Many studies I've read say that if your fecal cal is below 50, you have a 90-95% chance of NOT having an IBD. Its just a very easy, non invasive way to rule out IBD as a possible diagnosis. Mind you, if your test results are above 50, that does not mean you DO have an IBD, because the test only detects inflammation in the gut and cannot tell you the reason for your inflammation, but like I said, a negative test result could rule out IBD and put you at ease.
09-20-2016, 11:17 AM   #9
Clash
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Fecal calprotectin is a great test. I would get several results over a period of time though.

My son has Crohn's disease. He has never reached remission so he has had ongoing inflammation. The fecal calprotectin test has been a good monitoring tool but it's not fail proof. He has twice had values under 50 yet we know he had active inflammation because the tests were in the same time frame as scope or MRE. In fact, he required surgery a month after an fc showed a result of 48.

He is asymptomatic so fecal calprotectin is helpful in conjunction with other monitoring tests such as scope and imaging. Inflammatory markers in blood work have never shown high results even when flaring.

His highest fecal calprotectin result was 1700, his lowest has been 37.
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