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Crohn's Disease Forum » General IBD Discussion » Frustrateded! IBD/DVT?


01-11-2015, 06:10 AM   #1
M43
 
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Frustrateded! IBD/DVT?

Hello all. So here is my situation after years of on again off again extreme constipation and urgent needs for BM with no passing of anything (at the time just an inconvenience) in July 2010, out of the blue I became very very sick to my stomach, my doc did an ultra-sound (nothing found) gave me Zofran and sent me way with the all clear, all was OK until Feb 2011, I again had a nasty flare up with D, could not eat drink, was very sick to my tummy, a week later I developed a massive DVT (blood clot left calve) complicated by PE or Pulmonary Embolism (blood-clot to the lungs) that about killed me, was started on Coumadin (blood-thinner) etc. I remained sick passing a little blood and mucus in my BM's, I then stayed very very sick to my stomach, GI doc did colonoscopy came back clear, then he did an Endoscope and that came back clear, I stayed very stick to my stomach so they did a CT, that showed "thickening of my Sigmoid Colon" and the Radiologist suggested possible IBD, GI doc dismissed it because of the clean colonoscopy and no bloody D. I stayed very sick to my stomach and I also began to feel very very cold all the time especially after eating. After 6-months the Hematologist told me to stop the Coumadin, BOOM I clotted again two weeks later 2nd DVT from my calf to my hip with another PE that about killed me again (put on blood-thinners for life at this point). After this they did another CT scan and found "persistent thickening of the Sigmoid Colon", again GI doc dismissed IBD because of the clean colonoscopy and no inflammatory blood markers, doc did do a pill scope and again it yielded nothing of interest. I continued very sick, then I started to develop extreme burning pain under my skin up and down my arms and legs to go along with the awful chills and cold all the time. I have had a full Neurology work-up, full Endocrinology work-up, full cancer work-up, and all came back normal. But I am still so so sick to my stomach, cold with terrible nerve and burning pains.

I very much think I have IBD with extraentestinal manifestations, but the doc's ignore me! I have switched to Xarelto for life-long blood-thinning (yaaa no more INR nightmares). Anyway I know I have IBD, but the GI docs say no and just give me Zofran (useless) and a pat on the head! Any ideas how I can get through to them? I know blood-clots and IBD are related, I have 2 CT scans suggesting IBD, and I have many symptoms just no blood markers or visible inflammation. Any ideas?
01-11-2015, 06:49 AM   #2
Catherine
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Have you had faecal protectin done?
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
01-11-2015, 07:09 AM   #3
M43
 
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I have had a test for occult blood but I believe that is all, is that the same thing?
01-11-2015, 02:31 PM   #4
Malice67
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I have had a test for occult blood but I believe that is all, is that the same thing?
nope -- I thought so too at first... my GI did the occult bold test three times this year -- but the last time he did the test in front of me and all it does is change color if there is blood... it is just a yes / no test. The other test actually gives you a number which helps determine if there is inflammation. (Which makes me wonder why I have never had that one run myself???)

here is the link to this site's wikipage on fecal calprotectin

http://www.crohnsforum.com/wiki/Fecal-Calprotectin
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as needed to control anemia: iron infusions (using Venafer since I had allergic reaction to Injectafer)
01-11-2015, 03:15 PM   #5
wildbill_52280
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sorry to hear my friend. you first say your issue was constipation? But then you said you had diarhea again? maybe you are not explaining this right. But it seems odd that the gi would not come up with anything for IBD, I would say try another GI, but if not ibd it's hard to say what is going on. the only other thing comes to mind is colon cancer but that would have been visible on the colonoscopy right? so that's wierd.

Are you possibly ingesting any other supplements or products that may be unnatural to the human food supply? perhaps its doing something strange to your body and giving you these symptoms. Are their any work related exposure to toxic chemicals perhaps? good luck.
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01-11-2015, 05:05 PM   #6
M43
 
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Thanks Malice, I will ask for this test. It is weird I cant get a diagnosis. Colon Cancer is not likely mostly due to the fact that it has been four years since this first occurred, if I had colon cancer, I would almost certainly be in a life/death struggle by now WITHOUT treatment and likely not even be here to type this. I think it is IBD....has anyone else had IBD with a clean colonoscopy and clean blood-work?
01-11-2015, 09:54 PM   #7
wildbill_52280
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Thanks Malice, I will ask for this test. It is weird I cant get a diagnosis. Colon Cancer is not likely mostly due to the fact that it has been four years since this first occurred, if I had colon cancer, I would almost certainly be in a life/death struggle by now WITHOUT treatment and likely not even be here to type this. I think it is IBD....has anyone else had IBD with a clean colonoscopy and clean blood-work?
then its probably IBS, and possibly another cause for the clots. perhaps if you are over 50 its just heart disease or something, or undiagnosed complications of diabetes who knows, you need more tests though. and possibly another gi opinoin, but its so unlikely after all those tests they would miss ibd. i woudl believe the blood tests would have revealed inflammation markers, but the colonoscopy may be less likely to show evidence of inflammation. if they mess dup the blood tests, its possible you were misdiagnosed IBD.

since im not a doctor and never had colon cancer, I can't claim to know exactly what its like, and neither should you. wishing you the best.
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