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Crohn's Disease Forum » General IBD Discussion » What could be causing my pain?


03-29-2016, 03:10 PM   #1
eleanor_rigby
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What could be causing my pain?

Hello everyone, I hope you can help me, I apologise that this is long.

I have Crohn's disease located in the terminal ileum. I have had GI symptoms since 2006, which were purely abdominal stomach cramps that would hit in waves and be excruciatingly painful. Occasionally I would vomit a small amount when they hit. Sometimes they would last for days and return every few weeks or months. This went on for five years and I never went to hospital. I went to see my GP multiple times but was diagnosed with IBS without any testing.

In 2011 I developed horrendous pain on my right side and a fever and this ultimately led me to having a bowel resection due to a perforation and abscess. I was diagnosed with Crohn's disease but my pathology report after the operation came back and said there was no evidence of Crohn's and it looked like a burst appendix. Since 2011 I had no symptoms - the cramps completely stopped and I was not on any treatment.

In May 2015 I got the cramps again so I was referred back to my GI. In August I had an upper endoscopy, which showed inflammation that my GI suspected was as a result of coeliac disease (I had a weakly positive blood test). I then had a CT scan which came back entirely normal. I had a fecal calproctin test, which came back at 65. Then I had a colonoscopy in December 2015 which showed ulcers and inflammation at my terminal ileum. My GI said my small bowel looked "withered". I was officially diagnosed with Crohn's disease.

Then in January 2016 I started getting a dull ache on my right side, a week later I was started on 9mg of entocort. I took this for 7 weeks but the pain on my right side never went away. I then was told to stop the entocort and start on 40mg of prednisolone and had blood tests in preparation for starting azathioprine. I was told after 7 days to taper down to 35mg, and continue a 5mg taper every 7 days.

Well it has been 12 days of prednisolone straight after 7 weeks of entocort and I still have this pain on my right side! A couple of times during my time on prednisolone I have also had those stomach cramps, and from reading here it seems this could indicate a partial bowel obstruction.

The pain is a dull ache, a bit like I've been stabbed and it is there most of the time. I do not feel ill, I do not have a fever, I am able to work, it does not stop me from doing what I need to do. But I don't understand why it is there. My GP has felt my stomach and says it is not hard, it feels tender. It makes me think this can't be inflammation if the steriods aren't making the pain go away... Could it be possible my bowel is stuck to my ovary or something?
__________________


History:
2nd Generation affected

Symptoms since 08/2006 (age 17)

Emergency open bowel resection after perforation in 12/2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

Diagnosis:
Perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum)
Coeliac disease (age 26)

Meds:
50mg azathioprine (down from 75mg after my WBC dropped)
Gluten-free diet
03-29-2016, 05:44 PM   #2
DougUte
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Is the pain in the lower right side where the terminal ileum is? Does it come and go? Or is it triggered by eating? If it is a partial bowel obstruction the pain would alleviate as the food works its way around it. I had a almost complete bowel obstruction that was removed in surgery in 2010. Not fun. I wonder if it could be a fistula as well.

Being male this is not my personal area, but I could envision a fistula formed between the bowel and the female organs.
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Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
03-29-2016, 05:49 PM   #3
ronroush7
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I am wondering if you need a stronger dose of prednisone or a biologic? Talk it over with your doctor. Keep us updated.
03-30-2016, 01:46 AM   #4
eleanor_rigby
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Hi both,

Thanks for your replies. The pain is like a constant dull ache on the lower right side where the terminal ileum is. When my GP felt my stomach she said it felt tender and no sign of a fistula, abscess or perforation. Not sure she can really tell though...

In 2007 I had an episode of optic neuritis so I am not allowed to take ANY biologics due to my increased risk of multiple sclerosis. This scares me as I feel like I am left with very few options. I really hope aza works.
03-30-2016, 01:49 AM   #5
ronroush7
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Hi both,

Thanks for your replies. The pain is like a constant dull ache on the lower right side where the terminal ileum is. When my GP felt my stomach she said it felt tender and no sign of a fistula, abscess or perforation. Not sure she can really tell though...

In 2007 I had an episode of optic neuritis so I am not allowed to take ANY biologics due to my increased risk of multiple sclerosis. This scares me as I feel like I am left with very few options. I really hope aza works.
I hope Aza works for you. Let us know how you are doing

03-30-2016, 11:17 AM   #6
DougUte
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Hi both,

Thanks for your replies. The pain is like a constant dull ache on the lower right side where the terminal ileum is. When my GP felt my stomach she said it felt tender and no sign of a fistula, abscess or perforation. Not sure she can really tell though...

In 2007 I had an episode of optic neuritis so I am not allowed to take ANY biologics due to my increased risk of multiple sclerosis. This scares me as I feel like I am left with very few options. I really hope aza works.
I'm not sure how she can tell just by feeling around also. MS risk really messes around the normal treatments available for Crohns. I hope the aza works for you also.
03-30-2016, 03:33 PM   #7
DEmberton
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Several doctors felt my abdomen and said nothing felt wrong but I had a stricture that showed up on the CT scan, and a fistula that they only found during surgery.

Hope you get some answers.
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Diagnosed May 2014
20cm Terminal Ileum and Ileocaecal resection July 2014
125mg Azathioprine
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