Crohn's Disease Forum » General IBD Discussion » PE after Bowel Resection. Now on Xerelto (blood thinner)

05-31-2017, 01:46 AM   #1
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PE after Bowel Resection. Now on Xerelto (blood thinner)

Sorry for the lengthy title. I have nobody to talk to about this that can really relate and understand my paranoia.

I had a bowel resection April 13th and was sent home April 17th. I was readmitted to the hospital on April 20th due to a (small) pulmonary embolism in my left lung. I spent two nights in the hospital on IF blood thinners, and I was sent home on Xerelto.

I have been having head aches on and off and slight light headedness. I did look it up, and it appears to be side effects. I'm very scared of this drug. I'm scared I'm internally bleeding or I will start to, and that will be that. I can't sleep I'm so scared. Please tell me somebody else has experienced this and it turned out okay. I stupidly Googled too much, and I found horror stories 😩
05-31-2017, 07:44 AM   #2
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Call your doctor and let them know what is going on.
05-31-2017, 08:07 AM   #3
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I cannot relate as far as the blood thinner goes but I can relate as far as the google searches. My recommendation is to stay away from google. To me it seems is all you find is the worst case scenarios that get you feeling anxious. I would call your doctor and let them know what is going on. I would think there would be some sort of test they could do to see whether or not you are bleeding internally.

Please let us know what you find out.
3rd Generation

Dx with CD 4/16

Ileocecectomy 3/17

Reoccurrence 8/17

Current Medications: Lialda 4.8g daily, Azathioprine 100mg daily, Prednisone 20 mg daily. B12, Folic Acid, Primal Defense probiotic.
05-31-2017, 10:18 AM   #4
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I can certainly relate. In addition to Crohn's I also have a heart arrhythmia, which means I have to stay on a blood thinner. In my case it's Eliquis, which is similar to Xarelto. So I know exactly what you are going through. I feel like I'm constantly on a knife edge. If I fall off one way I get bleeding in the small bowel (potentially serious bleeding thanks to the thinner). If I fall off the other way I can get a stroke due to a clot produced by the heart arrhythmia.

So far I've managed the balancing act for about 5 years now. The only bad bleeding episode I had actually occurred before I started on the Eliquis.

One suggestion I can make is to talk to your doctor about switching your blood thinner to Eliquis. According to the published clinical trial data, Eliquis has a lower bleeding risk than it's two main competitors Xarelto and Pradaxa. However, the data in all cases was generated by comparing each drug to warfarin rather than head-to-head comparisons against each other. Direct comparisons would be better, but these studies have not been done. And the reduced risk with Eliquis, while significant, is not huge. But I'll take any reduced bleeding risk I can get. And so far it's working for me.
05-31-2017, 11:35 AM   #5
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I had a massive PE six years ago, just before I was diagnosed with Crohn's, and almost died. I'm still on Warfarin. I too panicked at first, it takes a while to get used to the idea. If you have any kind of head injury they recommend you to go to the ER to have it checked out. I don't think you will spontaneously start to bleed somewhere, but you could check with your doctor for peace of mind. There are warning signs for bleeding, like black stools, that you should watch for. I'm probably going to stay on blood thinners for life. There is a 10% chance that I will have another PE within a year of stopping the medication, and I don't want to take that risk. I have never had a bleeding episode myself.
05-31-2017, 11:46 AM   #6
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I should mention that my PE was unprovoked, no known cause, so my chance of getting another one is much higher. Since yours was caused by surgery, you don't have to worry about that.

Crohn's Disease Forum » General IBD Discussion » PE after Bowel Resection. Now on Xerelto (blood thinner)
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