PVT (Portal Vein Thrombosis)

[highlandsrock]

Up until last week I thought I has PSC (Primary Sclerosing Cholangitis) but I now have the results of my MRI scan and it turns out I have PVT (Portal Vein Thrombosis) instead which means there is a blood clot in my liver. I've been put on beta blockers to keep my blood pressure low and now await appointments with the liver specialist and haematology.

I read somewhere that following surgery for Crohn's you are more liable to clots so I'm wondering if that is what caused it. It does explain the other problems I've been having with esophegeal varices.

Is anyone else suffering from PVT? If so how does it affect you? Silly question but is it better to have PVT than PSC?

Any advice gratefully received

 

[David]

I don't have any advice and don't remember anyone mentioning PVT, but hope your appointment with the liver specialist goes well. Good luck to you!

 

[deb123]

Hi Highlands Rock,

Hope you have a bit more info about your PVT, i read your post and googled it, but i have never heard of it.
I had a scan before and it showed irregularities with my liver, i then had another scan - CT scan, but it showed that the bleeds in my liver have probably been there all my life, and no action was taken.

I hope it all turns out ok for you, and send you my best wishes

 

[Jennifer]

Hi highlandsrock! I also haven't seen anyone mention this before. I've had a resection but didn't deal with any clots afterwards. As far as I know about clots they can form from certain meds or from not moving around much (such as sitting or bed rest) and more than likely many other causes.

Keep us posted on how the appointments go. Since this isn't something we normally hear about on the forum we'd all be grateful for any information you have/get in the future.

 

[GutlessWonder86]

It's also a known fact that people who have IBD are prone to throwing clots when they flare up. Their blood tends to become "Sticky" due to inflammation in the body. My GI told me that and that is why any time I am in the hospital, the RNs put those lovely TEDS stockings on my feet. They clash with my entire wardrobe. lol

Anyway, there are so many reasons of throwing clots from drugs, not walking around after surgery, hereditary conditions such as Factor V Leiden, MTHFR genetic mutation, S protein deficiency, etc. that it's difficult to find a true cause at times until a hematologist can run tests to r/o hereditary conditions and run specific tests (I can't remember all the names) to find other causes and then get a game plan going to get the patient stable.

Hope you feel better.

 

[highlandsrock]

I really don't like those TEDS stockings. For the first day or so they are fine but then I find my big toes escape and I'm forever trying to get them back in.

The weird thing with getting this blood clot is that I also have thrombocytopenia (low platelet count) which makes clotting more difficult. I actually had an operation postponed because the surgeon was worried I would bleed too much! So in my non-medical brain the two conditions don't seem to add up.

I've now seen the haematologist who wants to put me on warfarin to make by blood thinner and attempt to disperse the clot in the liver but she wants the hepatologist to see me first. Have now got an appointment lined up with him on 10th September and I'm starting to put together a list of questions to ask. Any suggestions gratefully received as I've never seen a hepatologist before. At the top of the list is "what effect could it have on my life expectancy" - a bit heavy but I need to know this sort of information so I can make some lifestyle changes if necessary.

He will definitely want to know what is happening the varices (prominent veins) down my esophagus which are a side effect of the PVT so I've pushed to get an endoscopy appointment before I see him and success - booked for 3rd September. That's two things to look forward to in September!

 

[Brookelyn]

I just wanted you to know that you are not alone. I had a resection in February 2012 a few days after Easter I had pain in my right side so I went in to ER not knowing what it was. I had a CT only to find out it was a portal vein thrombosis. I was put on Coumadin for 6 months. The clot was gone after 2 months but my hematologist thought it would be best to do 6 months. I had another resection in June to remove scar tissue from the first surgery and haven't had any issues with clotting. I had every blood test possible to rule out other diseases or factors that cause blood clots and all came back negative. I do believe there is a correlation between the PVT and crohns. Have you found out any new information? I would love to know!

 

[highlandsrock]

Hello Brookelyn

Thanks for your post. I was going to say I'm glad I'm not alone but it's a shame you've got PVT as well. What happened to you to need a sceond resection in under a year? You don't mention any varices so I'm assuming you got diagnosed before they grew.

With me things have moved on quite a bit since the original post and we have a new explanation as to what caused the PVT in the first place. I was a little sceptical at first but it is now making sense. I've recorded it all on my blog. If you click on the link in my signature below and go to the post for October called "Azathioprine is blameless" it explains my consultant's theory as to the course of events.

Regards, Nigel

 

[Grumbletum]

Hello Brookelyn

Thanks for your post. I was going to say I'm glad I'm not alone but it's a shame you've got PVT as well. What happened to you to need a sceond resection in under a year? You don't mention any varices so I'm assuming you got diagnosed before they grew.

With me things have moved on quite a bit since the original post and we have a new explanation as to what caused the PVT in the first place. I was a little sceptical at first but it is now making sense. I've recorded it all on my blog. If you click on the link in my signature below and go to the post for October called "Azathioprine is blameless" it explains my consultant's theory as to the course of events.

Regards, Nigel

Hi Nigel
I realise this is long after the fact, but I've just been deagnosed with PVT and while investigating that they've discovered I'm flaring again after 3.5 years of remission. Off to have a look at your blog now.

 

[drenfroe]

Helen, I do not have Crohn's but was diagnosed with PVT about 1-1/2 years ago. Mine did not go away with 2 weeks of Lovenox injections and continuous Coumadin over the past 1-1/2 years. The live specialist and hematologist finally determined that I have a high Factor VIII count as well as in indeterminate lupus anticoagulant test reading, that continues to come back like that so I am on blood thinners now for life. I recently changed over to Pradaxa but have not been on it long enough to know how I like it yet or how I will tolerate it. Anyone else on here on Pradaxa? I will also have to have an EGD and numerous blood test for liver function every six months from now on as well. It is a pretty scary diagnosis and one that there is not much information on, as I guess you have found out. I am lucky to work at one of the largest teaching medical centers in the south though and have a great team of physicians so I feel very well taken care of. I hope you are doing well. If you have any questions about my journey, please feel free to ask. I think I have had every test imaginable now associated with this diagnosis! Thanks and best of luck to you all. I am glad to have found this site. Debbie

 

[Grumbletum]

Hi Debbie
Thanks very much for the reply - and a big welcome to the forum. Yes it is very scary and to be honest, I am still trying to get my head round it. I live in Burma so had to be flown to Bangkok for treatment. Doctors there are lovely. They reckon the PVT is related to the Crohn's as apparently sufferers have 'sticky blood' so are prone to clots.
I'm doing pretty good, although I tire easily and my anxiety levels are pretty high.
The hematologist has said 3 - 6 months on the Warfarin then they will do tests to determine whether the clot has dissolved or not.
I have a stricture at my resection site which needs attention but the GI is waiting for my current flare to die down and to see if I can come off the blood thinners.
Is Pradaxa supposed to be a better drug than Coumadin?

 

[drenfroe]

Hey there! So glad to hear back from you so soon but sorry to hear you are still having issues with the PVT. The reason I came off the Coumadin and on to the Pradaxa is because of the constant blood testing, the INR levels. Since I will have to be on it now for the rest of my life, my doctors discussed it and think I will get the same benefits that I need for the PVT from the Pradaxa and not have to go in for the blood test all the time. I am very happy about that. It seems on the Pradaxa I will need to have a CBC in two weeks, another in about 8 weeks and then I am good to go if those look OK for about every 6 months or so. Take care of yourself and let me know if you have any questions. Debbie

 

[highlandsrock]

I've been tending to use Twitter and blogging to communicate with the IBD Community (oh, and sometimes FB but usually regret going on some of the groups!).

Can't believe my last post was in 2012 on this subject. Things moved on and I underwent various tests (1 liver biopsy + 2 bone marrow biopsies) . I went through all the risks with my haematologist and have decided not to take blood thinners. I've also been diagnosed with severe bile acid malabsorption but again decided not to take Questran or similar. I want to avoid taking any additional drugs.

Unfortunately, like Grumbletum, I also appear to be coming out of remission some 5 years after my stoma reversal so it looks lie I will need some additional medication after all. Will know more after a colonoscopy mid-July

 

[Grumbletum]

Hi highlandsrock
I was wondering how you were getting on. I'm really sorry that you are flaring again. Have you had the colonoscopy yet?
Things have moved on a bit for me too. My last post I was still in the hospital and a bit institutionalised and spaced out on painkillers etc. Of course, when I got out of hospital I Googled PVT, Warfarin etc and got totally freaked out! I came back to Myanmar and work and hating being on it in a country where taking a taxi and crossing the road are scary enough without worrying about possibly bleeding out! ( I know, I am a panic merchant. )
Anyway, I have been back to Bangkok for checkups on a regular basis and all the readings that should be going down have done. They put me on Pentasa for the Crohn's flare and it seems to be working, so my dose has been reduced, although they say I should stay on it for at least 18 months.
My - is it D-Dimer? - results were really good last week so, after 3 months, they have taken me off of the Warfarin. Ironically - having been so scared of it at first - part of me is worried that I have been. They want me to go back in 3 months for another check up.
I have BAM too. Well, I haven't been tested for it, but after my resection, I'm pretty sure that's what it is. My Thai doctor prescribed me Questran but only for when things were bad, but I find if I watch my diet I can control it. Unfortunately that means avoiding Myanmar cuisine which is really oily.
The project I'm working on comes finishes at the end of August, although they are trying to negotiate an extension with the new government. I have no idea really whether the environment here had anything to do with my flare up, or the PVT, or the stomach infection I had when I was hospitalised, but I'm thinking it might be time to move a bit closer to home.

 

[highlandsrock]

Hi Grumbletum

Sounds like you are on the mend. My colonoscopy is set for 13th July. Will be interesting to see if there is any inflammation starting up again.

I may have had my clot for over 30 years as one of the causes is surgery + Crohn's patients seem to be more susceptible to clotting. My clot was diagnosed after the veins in my esophagus burst one evening. Quite an experience. I wrote the story here - Back in Hospital, Again - if you are interested. I also Googled PVT and Crohn's after the diagnosis and the first article said "inevitably fatal".

I hope your project gets extended, I'm not sure I would want to work in Myanmar with IBD. So far I've been lucky enough to work in London but the commuting is finally getting to me and I think I will retire as soons as I can. Never know what Crohn's might have up its sleeve!

 

[Grumbletum]

Hey
Your post above made me laugh - now after the fact. I think I found the same article as you did when I came out of the hospital. Really shocked and depressed me.
How did your colonoscopy go? Hope the news is good.
I'm well on the mend. Had a CT scan last month and as the clot is no longer acute, they took me off the Warfarin, much to my relief. The Pentasa seems to be working too. Blood levels all good and the mild pain I was having ( I thought it was from scar tissue ) has gone. Having some issues because of the stricture but the gastro said if I'm not in a lot of pain, she'd rather not do a balloon dilation because of the risk of perforation. So it's pretty much all good.
Workwise, there is a proposed 7 month extension to the project, but it still hasn't been signed off by DIFID. Political changes in Myanmar and now of course, Brexit, possible holding things up.
Myanmar is lovely in many ways, but not the easiest place to live so I've gone with my desire to be somewhere in Europe and managed to get a job in Austria starting in September.
Bit of a contrast......