Crohn’s and now blood clots – I’m worried

Crohn’s and now blood clots – I’m worried

Hi Everyone,

If you’ve been reading Nyx’s Blood Thinner thread you know a bit about my situation. In short: I have Crohn’s and blood clots (DVT and PE). I’ve been hijacking Nyx’s thread to rant about the warfarin (anticoagulant) not keeping my blood in the therapeutic range of “thinness” (thanks, Cindy! ), but I’ve had a new development and now I’m worried that the treatment for my clots is going to cause problems with my Crohn’s.

On Tues I got a crampy feeling in my right calf (which was the first symptom of my left leg DVT last Nov.) and called my GP's nurse, who got me in for a leg ultrasound. My deep veins are clear, thank goodness, but there are two long superficial clots and one of them looks "newer". Argh! They also checked my INR (blood test to measure how “thin” my blood is), which was 2.3, but now my GP wants it closer to 3.0 ("thinner") so he upped my warfarin and started me on coated baby aspirin... not the best for a Crohnie, he knows, but he's rather concerned about the clots.

Here’s my worry: if my blood is too “thick”, it seems likely that I am going to develop new clots (since that “newer” superficial clot likely developed last month while my INR was too low/"thick" for several weeks). And it’s also likely that I have a clotting disorder – anticardiolipin antibody – although I’m still waiting for the second test to come back. On the other hand, if my blood is too “thin” my Crohn’s bleeding starts back up. I had a little bright red blood in my stool this morning for the first time in weeks. My GI said not to worry about small amounts of blood, but I don’t want this to become large amounts of blood.

I have a good team of doctors now, but I’m worried. I’m 27 years old and I’ve lived with IBD for nearly 20 years so I’m no stranger to scary medical situations. I have a wonderful supportive husband and extended family. I’m not depressed, but my current situation has me scared.

Thank you for listening.

I am sorry Sabrina.....You are so young to have to be worrying about this stuff....If you do have this clotting disorder will you be seen by a hematologists? Maybe you need ask to see someone who specializes in blood disorders? The more people working on your side may help.....Keep swimming honey, it is all you can do for now....You sound like you are very aware of any abnormal symptoms...It is only normal to be scared...I'm pulling for you!

Thanks IMP! I have a Rheumatologist (my GI had refered me after I developed the clots), and he is married to a Hematologist so I've got connections :ylol2:

Thanks again for the encouragement, I really appreciate it.

Sabrina...I'm sorry to hear about the new clot! I hope the higher dose of coumadin works and it gets sorted out soon....if it's not one thing, it's another it seems *rant rant rant* If it's any consolation to you, my dose has been upped too from 7mg to 10mg. I'm still pondering the alcohol route....lol

Thanks Nyx.... It really helps me to know I'm not alone with all this warfarin craziness. I've never been on anything like warfarin before, where if it doesn't work they just keep giving you more - eek!!!! Not the most comforting thing in the world, is it?!?

In the near future we might be driven to :beerchug: to forget about the stress for awhile if nothing else :tongue:

I'm a 30 year old male from upstate NY. I'm right now in the hospital for blood clots (DVT, PE - both lungs). I had a bowel re-section August '09 for my Crohn's disease (had a fistula repaired - surgery started lap but went to open) and have been good since. I don't know what's going on, and if the two are related at all. I also take Adderrall, and am wondering if that drug affects Crohn's/Blood Clots. It's pretty crazy that I can have successful surgery, be healthy, and then get a blood clot from Crohn's. I just wonder what would have happened if I did as I normally do and never came to the hospital?

Been there, done that!!! I had emergency surgery last December for a perforated sigmoid colon and distended bowel and developed blood clots in my lungs during the surgery (both lungs as well). My doctor told me that the blood clots can be related to the Crohn's. Like we don't have enough on our plates already??!! That, and being rather stationary while in hospital can do it.

Are you on anything for the clots? In the hospital I was on Heparin shots, then when I got out, I was on Coumadin (Warfarin) for about 4 months, but they couldn't stabilize my INR so my doctor took me off it.

Good luck...clots aren't fun! Make sure if you go for a scope and they put you under that you mention that you're a candidate for clots so they can monitor you during the procedure.

Thank you for the message. Did they find anything in your blood that caused the clotting? i mean, other than them saying, "it's the Crohn's," is there an actual medical condition causing your clots? If you're not on warfarin, what ae you on? Did they say why they don't think it's working? I was told I might have to be on blood thinners the rest of my life. (I'm 30 now).

I wasn't told what exactly caused the clots, but my doctor thinks it was the inactivity after my surgery. I'm not on any meds for it at all and it hasn't been a problem. Most likely just a fluke after my surgery. I don't have a condition that would cause the clots. I haven't been on the warfarin since April of this year.

Thank you for the info. I'm still in the hospital, though I might get out today. They won't know what caused the clots until all the blood labs come back in a few weeks or so. It's reassuring to know there are others who had clots and don't need blood thinner for the rest of their life.

When I had my stroke 5 yrs. ago due to a 12" clot on my brain, all of the doctors told me that pts. who have IBD are prone to clots when they flare or are hospitalized because their blood tends to become "sticky" due to the inflammation in their system.

Then I found a good hematologist well versed in IBD and she told me the exact same thing but ran tests to find out if I had any clotting disorders as well because some IBD pts. have that too. I was one of the "lucky" ones to have a rare genetic disorder, MTHFR genetic mutation where my body throws clots. As for treating them, IV heparin and coumadin caused me to almost bleed to death so now I'm on Lovenox shots for the rest of my life. She also told me that I have to keep my crohn's in check because when I flare, it increases my clotting over 75% and women who have IBD should avoid any type of hormone birth control (including the patch, IUD, shot,and pill) because that increases their risk of clotting & can cause a DVT, PE, or even a stroke. I knew about that yrs. ago & reassured her that my husband & I use NFP because it's the safest & most reliable method my Gyn told me about to avoid a pregnancy due to my many health issues.

Lovenox is good for those pts. who can't take coumadin/heparin due to bleeding issues. The downside is yes, you have to give yourself the shots in your stomach or side but there are no weekly blood tests to check the INR levels at all. You only follow up with the hematologist every 3-6 months and then get tested right at the office.

@GutlessWonder86

Thank you for the reply. I am having my INR checked today. I'm still on the Lovenox (last shot today) and coumadin (generic) pill maybe for the rest of my life. (I'm 30 year-old male, diagnosed with Crohn's about six years ago.) My blood tests have not come back yet, so I don't know what's going on yet. I appreciate your information, and will make sure my hematologist checks for MTHFR.

I see these reports are from 2010. My 25 year old son passed away on November 5th 2014 from a Pulmonary Embolism. His doctors, in Portland Oregon, were not using early intervention protocols to test for blood clots.
He had pains in his legs and was coughing up blood, over the past year. Nobody was considering blood clots. They sent him to a Pulmonologist and a Rhuematologist. They couldn't find anything. So his doctors pulled him off of the Remicade, switched him to Humira then switched him to Vedolizumab.
He went into the hospital mid October complaining of a serious headache and severe cramping. They thought they saw something in his lungs, diagnosed him to have Pneumonia and gave him antibiotics. The antibiotics caused him to seriously flare. The doctors couldn't get on top of the flaring or the blood clots. He had a massive sinus venus thrombosis with hemoraging in the brain. Then a massive Portal Thrombosis. Doctors are now saying they will include early diagnostic protocols in their IBD patients to test for blood clots. Would the out come been any different if we had been at the Mayo clinic or another highly recognized medical center? It was our understanding that we had an excellent team of doctors. Please be aware that there is a 25% increase in blood clotting with patients who have IBD. Our PCP was not aware of this. :-( Just saw a report on PubMed that in young people there is a 80% increase in blood clots. Please make sure your doctors are aware of the possibilities of clots.