Reclotting not revolting. My iPad autocorrected that.

I often wondered the same thing. I have IBD and DVT. I have not been tested for clotting factors yet, but when I come off Xarelto its something I'm discussing with hematologist. If the IBD is thought to be from an autoimmune condition, Hughes Syndrome or APS is something to discuss. http://m.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/mskpages/Hughes_syndrome?open
My sisters and I have autoimmune conditions, and from what I have read, it could be considered a clotting risk on its own. I am going to wait until I have choice to come off Xarelto and further along in my recovery
to investigate it more, but please let me know if you learn anything.

Julie, do you experience any upper gastro issues or spasms/flutters on Xarelto? I get palpitation feelings after eating. I hope you feel better.

jbmc, do you have IBD or IBS? I thought it was IBS. That's not the same thing as IBD and there's no link between IBS and clots.

I have IBD and it can make some people more prone to clotting. If you suspect IBD, you need to get a colonoscopy. So get checked out by your doc to either rule out IBD or confirm it.

I will certainly post if I learn anything. Regardless of what my hematologist says, I will discuss being referred to a gastroenterologist with my PCP because this is definitely something I need to have looked at. I've been wracking my brain trying to figure out what caused my PE. I refuse to accept an unexplained PE. It's too weird that I had what I've been calling a stomach bug right before I clotted. It wasn't a stomach bug. How would the five other people I was sharing a bathroom with - including my immunocompromised nephew - have not caught it? I'm a good handwasher but those are crazy odds.

I haven't really had any big issues with xarelto. Some reflux I suppose but I've had issues with that before.

Yeah, I wouldn't even talk about it with your hema. I'd get a consult with a GI doc.

One thing I will say... there really could be a no identifiable reason why you clotted. I have IBD and it makes me more prone to clotting but I had my PE when my diseased was in remission so who knows if that was the sole cause or if it was some other anomaly in my body. Sometimes the answer is there is no answer and in that case, you have to get right with that so you can move forward.

So yes, for sure get checked out, because regardless, pooping that much isn't normal.

Julie, I don't think your Dvt was a direct cause of IBD, or IBS. The things I have read focus more on autoimmune disorders being related. That is why when I come off X I want to know my risk factors to clot again. And discuss with my hema my known risks to decide our plan. I have to get tested for the known factors first though. If I find out I'm factor V for example, it doesnt matter if I have autoimmune issues or genetic tendenciewl, ill choose X for life. I had DVT after ankle injury/surgery, so that could even be cause. I hope you find some thongs out to ease your mind. But some healthy people do clot out of the blue.

RMB, I have IBS, and take hyoscyamine. I see a gastro all too often. Right before Dvt I had some issues we thought were gastritis. And confirmed it with a scope right before going on X to make sure I wasn't
a bleed risk due to ulcer past and issues. But my family has Colitis all over, and given the pain and the awful symptoms, we worry I'm on the path. I considered switching docs, but decided dealing with Dvt and PE was time consuming enough lol. My current gastro wanted to put me on a strong drug, but it can change blood pressure, so we were stalling until heart Cath results. Sound familiar to any drugs u know?

Colitis and ulcerative colitis are two different things. UC is part of IBD same as Crohn's. Colitis is inflammation of the colon usually caused by an infection so it's temporary.

IBD is an inflammatory autoimmune disease. IBS is not, at all. It's typically a diagnosis given when IBD and other GI diseases are ruled out.

Sorry to be so firm on this but I'd hate for others here who may have IBS to think that's why they clotted. It's the IBD that increases the risk for clotting, not IBS.

Dont apologize for being "firm". They are way different. Its funny you bring up the "ruled out" in determining IBS after eliminating other issues, that drove me nuts when I was a kid. I thought they were just trying different tests for the hell of it and I was an experiment.
Did your autoimmune condition impact your long term warfarin plan rmb?
Julie, there was a long thread on here somewhere that was full of good autoimmune info. I suck.at technology and can't find it though, but I know is there.

The plan was never to keep me on warfarin due to the UC. I was on it for 6 months and then came off like most people do when there's no genetic clotting factor present. I had a second clot and that's why I'm on warfarin long term which is a standard recommendation for someone who has more than one clotting event. Having IBD may increase the risk for clots so people with IBD should be aware of that should they require surgery, are flying etc.

Honestly, if it made sense for me to be off anti coagulation, I'd not be on it. Being on most drugs long term can have adverse side effects and other repercussions. With Xarelto being so new, there are a lot of unknowns about long term use. So those are things to weigh when considering long term anticoagulation.

I used the word "firm" because so many think IBD and IBS are the same and it's not. IBD affects and damages a lot of other functions in your body. If I could trade IBD for IBS I'd do it in a heart beat.

If someone suspects theu have IBD (Crohn's or UC) check out CCFA.org as a resource for the differences between IBS and IBD, symptoms of IBD, getting a diagnosis, treatment, etc.

Thanks so much for your input. I understand the differences and I will be calling my doctor to discuss a referral to a gastro. I do understand that IBD doesn't necessarily mean the cause for clotting just because you have it. However, for me, the timing of things would add up as I was certainly in a flare when I clotted. That's not to say I wouldn't be concerned and cautious about the possibility of clotting at other times though. The history of a clot is a risk factor in itself. This link is not something I was aware of and I wonder if how I presented things to the doctors when I was hospitalized (I was on vacation and had a "stomach thing"...) precluded them from making that possible connection.

Have you seen a gastroenterologist? I think he would be the one that would help Krohn's. IBS is the diagnosis if the tests are normal, making it a catch-all diagnosis. If you are showing signs of Krohn's that should be followed up on.

I have made an appointment with my GP next week to discuss a referral to a gastroenterologist. Thanks!