Deep Vein Thrombosis

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biscuit
New Member


Date Joined Mar 2008
Total Posts : 12
   Posted 3/3/2008 1:33 AM (GMT -6)   
How common are vascular problems for people with UC?  My daughter was recently in the hospital with Deep Vein Thrombosis and Pulmonary Embolism.  I read a Japanese study which indicated there are vascular changes in people with UC.  Anyone have more info. on this topic?  Also...a warning to those of you with UC:  My daughter had a vena cava filter placed in her vein which got stuck there and had to be removed during a 3.5 hr. procedure at Stanford U.  Turns out that the UC played a role in this filter getting stuck.  I think it's b/c her body overreacted to the foreign object being placed in her vein.

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/3/2008 1:41 AM (GMT -6)   
Biscuit, welcome to HealingWell. I do know we have one member here who has UC and DVT, she's the only one I'm aware of. Perhaps you'll get a response from her in the morning.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


gaff
Regular Member


Date Joined Jul 2006
Total Posts : 442
   Posted 3/3/2008 9:41 AM (GMT -6)   
I have a relative with UC and the exact same thing happened. They couldn't attribute the DVT to anything and don't know why it happened.

gaff
left-sided UC since 11/05
 Rowasa, Colazal, Calcium, Centrum
Natren Healthy Trinity Probiotics


Jeremy "Mr. Snuts"
Regular Member


Date Joined Oct 2004
Total Posts : 162
   Posted 3/3/2008 9:56 AM (GMT -6)   
I have UC and i've actually had 3 blood clots since and a dual PE. I'll be on Coumadin my whole life because it's seriously like...3 days off of coumadin and I get a blood clot.
Diagnosed with Severe Ulcerative Colitis 1/04 -(18 at the time)
11/04 Total Colectomy
2/05 Ostomy Takedown
1/06 DVT In leg
5/06 Pulmonary Embolii
4/07 Another DVT In leg
Current Medications -
Vicodin 800mg when needed(yumyum)
Coumadin

http://www.myspace.com/mrsnuts/
http://www.livejournal.com/users/mistersnuts/


legalsec
Regular Member


Date Joined Feb 2007
Total Posts : 30
   Posted 3/3/2008 9:59 AM (GMT -6)   

Hi Biscuit,

I was hospitalized in February of last year with a DVT. It was pretty bad. I had many blood clots in my right leg and a large cluster in my abdomin.  I had read something about a slight chance of a DVT being caused by Colozal. When I was in the hospital three different doctors discussed and read up on the side effects and concluded that it was not Colozal. The doctors all felt that it was my birth control pills that caused my DVT.  I have also read that there is a slight chance that UC in general can cause a DVT. 

I had another CT scan and Doppler U/S in early February this year. It seems I still have some occlusion in my abdomin. I see my Hematologist tomorrow to find out what will be the next step as I have been on Coumadin for one year now and the cluster in my abdomin should have disolved by now.   

Also, I have had extensive blood testing to see if I have some type of auto immune factor that would cause me to be susceptible to have a DVT again. The first two tests came back positive for Anti Cardio Lypin Enzymes (SP??). I will get my results tomorrow for the third and final test.

From what I understand about UC, it is an auto immune disorder and we can expect other auto immune disorders may occur. I have felt the arthritis in my joints at times and if my DVT was caused by an auto immune disorder..... maybe, just maybe, this could all be connected. 

If you have any further questions, I would be happy to offer my advise.

Vonda


Pancolitis - dx December 2006

Colazal 750 mg - 9/day (generic)

Canasa 1000mg 1/day (???)

Women's One-A-Day Multi-Vitamin

Calcium +D 500 mg - 3/day

Coumadin 2.5 mg/day (for DVT, dx 2/13/07)

Asacol (bad reaction); mesalamine supp. (bad reaction); Seasonale (birth control); cranberry pill - 300 mg  3x/day (urinary tract infec.);

Lovenox injec. 2x/day (for DVT); Prednisone - 10 mg/day; Folic Acid - 400 mcg x2/day


NIcepeter
Regular Member


Date Joined Sep 2007
Total Posts : 72
   Posted 3/3/2008 10:23 AM (GMT -6)   
According to a report in Chinese, UC pt have more tendency on blood coagulation. Make sure you guys take coumadin as doctor advised. Check your INR level in the lab to measure the clotting time. DVT is a dangerous disease. It can travel to cause Pulmonary Embolism and othere CV issuess.  Good luck to you all.
36 yrs male. From Arizona
 
Took a lot of antibiotics for my sinus infection caused by allergy, Augmentin and triple antibiotics regimen. Now qualilfy to join UC team.
 
Dx in 2007. Proctitis only( party of Ulcerative Colitis). Mild Hemorrhoid. Fish oil 2 capules twice a day, helps. Alo Vera sometimes helps. Propolis helped quit bit, but had to stop due to allergy issue.
 
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/3/2008 12:36 PM (GMT -6)   
Last year I was placed on progesterone for female related problems. This increased my Uc symptoms not to mention my monthly period pain. So I went to my GI and told him that my primary put me on progesterone. He looked sort of shocked and told me to stop it right away (which I did anyway) so I asked him why. He said that people with Uc have a higher incidence of blood clots then the normal population and add hormones too it such as birth control or any other med that can cause clotting increases the risk three-fold. I don't have any more information then what he said to me, but I definately heeded his advice since I trust him completely (I've been with him for 12 years).
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


biscuit
New Member


Date Joined Mar 2008
Total Posts : 12
   Posted 3/3/2008 6:44 PM (GMT -6)   
thank you so much for the information about deep vein thrombosis everyone.  i just don't understand why the doctors who should know about this do not know.  it's so frustrating.  my heart goes out to each of you for what you have to got through with this horrible thing. 

UC since'76
Regular Member


Date Joined Dec 2006
Total Posts : 77
   Posted 3/3/2008 9:48 PM (GMT -6)   
I might be the one with the UC and the DVT. I think I got my DVT from sitting around with nothing to do. Desparately need to work, have two degrees. No one will hire me because I'm 56. Husband left me after 28 years as stay at home mom.

I'm having a colonoscopy day-after-tomorrow. Coumadin is a big problem. Have to come off it, or I will bleed too much. I have to "fill-in" with Lovonox shots at $100.00 each for 6 days or GI will not do the procedure. My $700 a month insurance will not let me have the Lovonox. I have no job and all but a few dollars of my alimony goes to pay the $700.00 a month insurance. I may qualify as indigent. Indigent! With two degrees on the wall. Why did I go to college?

(sorry, real upset right now)
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
 
Never had a flare until MD gave massive dose of Magnesiun while hospitalized for bronchitis.
 
During subsequent hospitalization for the flare, GI looked me straight in the eye and said "don't ever stop using Asacol."
Insurance company thought otherwise so I'm on no meds.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 3/3/2008 9:54 PM (GMT -6)   
AHHHH don't scare me!! I have a flight from PVD to JFK to Germany to Singapore on Friday. I am guessing it will be about 20 hours total one way. Ill make sure to stand up and stretch frequently. (grrrr another thing to worry about)....
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 3/3/2008 9:55 PM (GMT -6)   
PS: UC since '76, have you tried fighting the insurance co? My doc writes me letters of medical necessity whenever something is denied and he battles it out w/ them. So far he has won!
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


UC since'76
Regular Member


Date Joined Dec 2006
Total Posts : 77
   Posted 3/4/2008 1:04 AM (GMT -6)   
I saw him just today and he did say something about that. They don't outright deny it, they just give me a yearly dollar limit. it is terrible because when the doctor wants to prescribe something, you have to think about what if I get sick in November and have used up all my $$$.
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
 
Never had a flare until MD gave massive dose of Magnesiun while hospitalized for bronchitis.
 
During subsequent hospitalization for the flare, GI looked me straight in the eye and said "don't ever stop using Asacol."
Insurance company thought otherwise so I'm on no meds.


uc/diabetes girl
New Member


Date Joined Feb 2008
Total Posts : 12
   Posted 3/4/2008 4:59 PM (GMT -6)   
Biscuit.
Ah yes along with joint pain DVT's are another little talked about aspect of UC. about 8 years ago I was hospitalized twice for DVT in my leg. The docs believe that my flaring uc and birth control pills played a factor in my clots. Now I where supportive stockings when I fly and walk around a lot on long plane rides and make pit stops during long car rides.

legalsec
Regular Member


Date Joined Feb 2007
Total Posts : 30
   Posted 3/9/2008 5:44 PM (GMT -6)   

Is anyone taking Coumadin and 6-MP together? I am in a flare for that past month and the bleeding is unbelievable due to taking the blood thinner.  For some reason my blood is dangerously thin this past week. It was at 4.7 last Monday and even though I stopped taking my coumadin for 4 days my protime is still coming back at 3.9 (It should be between 2-3). I will have it checked again tomorrow.

This concerns me because my GI is supposed to be starting me on 6-MP at my next visit on 3/17. I researched and it looks like the 6-MP causes our blood to be thinner. I plan on discussing this with my GI, but I was wondering if anyone on Coumadin and 6-MP showed a difference in their protime levels.

Thanks


Pancolitis - dx December 2006: Supposed to start 6-MP next week; prednisone 60 mg(started again 3/6/08); Colazal 750 mg - 9/day (generic); Canasa 1000mg 1/day; Women's One-A-Day Multi-Vitamin; Calcium +D 500 mg - 3/day; Coumadin 2.5 mg/day (for DVT, dx 2/13/07); Folic Acid - 400 mcg x2/day

Asacol & mesalamine enemas (bad reaction); Seasonale (birth control) caused DVT; cranberry pill - 300 mg  3x/day (urinary tract infec.) can't take with Coumadin;

Lovenox injec. 2x/day (for DVT)


Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 3/9/2008 8:08 PM (GMT -6)   
In Nov. of 2006, I was hospitalized with DVT and PE, and after a CT scan found to have a clot in my abdomen. I'll also be on Coumadin for the rest of my life. My GI took me off of the 6-MP as it kept lowering my white count. They did a bone marrow biopsy and I was found to have Factor V Leiden, a defective gene which can cause blood clotting. I was just in the hospital again this past November with what we thought was a UC flare, and also low back pain, for which I ended up with surgery. They wouldn't do the surgery until my INR was 1.3 or lower. I ended up with a PICC line as they were running out of places for IVs and to draw blood from. It was put in my right arm at first and I ended up with a swollen arm and a blood clot. I also had a small clot from an IV site. I'd never before heard of a connection between UC and clotting, but I'd be interested in finding out more about it, too.
Ulcerative Pancolitis (dx'd 6/2002)
Pentasa (4gm/day)
Prednisone (2.5mg every other day)
various meds for other conditions
 


Suns Fan
New Member


Date Joined Mar 2008
Total Posts : 6
   Posted 3/9/2008 10:06 PM (GMT -6)   

I was just in the hospital a month ago for DVT. I had no idea what it was until I went to the ER and got diagnosed. I had blood test to see if it was genetic, but everything came back negative, except one. They said that I have a thing called lupus anticoagulant. It has nothing to do with lupus, but it is a blood clotting antibody. They said that I will be predisposed to clotting in the future without blood thinners.
After I got out of the hospital, I did a lot of research to find out if it had to do with my UC. I also take anti-seizure meds for a epilepsy, and I got a lot of info saying that blood clots would form from taking phenytoin for too long, which is what I am taking.

Does anybody know what connection there is with DVT and UC, or has anybody had it explained to them, because I haven't found a doctor who will acknowledge that there is any connection between the two.

Also wanted to know for those of you who have had second and third clots, if you were on coumadin at the time when the clots formed?


Scrappyjrt
Regular Member


Date Joined Jul 2006
Total Posts : 212
   Posted 3/10/2008 8:18 AM (GMT -6)   
I have Factor V Leiden a genetic blood disorder that causes my blood to clot too quickly. This has complicated my UC . I had a couple big DVTs,one in my jugular from a PICC line. Then a hematoma after my colostomy surgery from the drains. I am not on Remicade or any of those type drugs,and no steroids.But still have to inject Lovenox every day.And yes you can develope clots even on thinners.Too high a dose can make you bleed. I also tested positive for lupus anticoagulant.Maybe you could ask your Dr. about the FVL and see if you have the gene mutaion. If you have already had trouble with the PICC line,I wouldn't suggest another one.I will NEVER give permission for one again,I don't care if they have to put the IV in my foot.!!!

  1. Colostomy May07
  2. Rectum removal and hernia repair Oct 07


legalsec
Regular Member


Date Joined Feb 2007
Total Posts : 30
   Posted 3/10/2008 8:30 AM (GMT -6)   
Is a bone marrow biopsy the only way to find out if I have Factor V Leiden? Is there a blood test to check this? 
 
I did test positive twice for antiphospholipid syndrome/anticardiolypin syndrome which is an auto immune disorder. I contribute this to my UC, since UC is an auto immune disorder as well. It is my understanding that once we are diagnosed with an auto immune disorder it is likely that we may develop other auto immune disorders.   
 
I have been on Coumadin for one year and still have a cluster in my iliac vein. I have a second opinion with a new hematologist on 3/27. I will question him further regarding the connection between DVT and UC.

Pancolitis - dx December 2006: Supposed to start 6-MP next week; prednisone 60 mg(started again 3/6/08); Colazal 750 mg - 9/day (generic); Canasa 1000mg 1/day; Women's One-A-Day Multi-Vitamin; Calcium +D 500 mg - 3/day; Coumadin 2.5 mg/day (for DVT, dx 2/13/07); Folic Acid - 400 mcg x2/day

Asacol & mesalamine enemas (bad reaction); Seasonale (birth control) caused DVT; cranberry pill - 300 mg  3x/day (urinary tract infec.) can't take with Coumadin;

Lovenox injec. 2x/day (for DVT)


biscuit
New Member


Date Joined Mar 2008
Total Posts : 12
   Posted 3/11/2008 2:24 AM (GMT -6)   

What does '6-MP' mean?  What is a PICC line? 

With regard to the question about the relationship between UC and DVT, all I know is that I read the results from a Japanese study which concluded that there are 'vascular changes' in those with UC.  Also, someone on this site posted something about a Chinese study which concluded the assoc. bet. clotting and UC.  With regard to the clotting factor, however, I don't know specifically.  It has to be related to the vascular changes.  I have to assume also that the DVT is part of the inflammatory process going on in the body of those with UC.  Inflammation is inflammation is inflammation...no matter where it occurs in the body.  It is the inflammatory process which needs to somehow be eliminated.  What do you think? 

But we don't need Drs. or studies to tell us there is a connection bet. UC and DVT...it is clear there is a connection here.

Also, I am aware of the various genetic components which can predispose one to the UC and clotting, etc.  However, I believe the treatment is pretty much the same: Coumadin. Heparin. Right?  That's why I haven't focused on the genetic component too much...the treatment is the same as it only treats the symptoms not the cause.  Am I right about this?

Has anyone adhered to the Specific Carbohydrate Diet?  What results did you experience?  This diet makes sense to me.

Also, I am trying to get my daughter's dr. to go along with Naltrexone treatment.  Anyone have any experience with this?  I have high hopes for this drug. 

I wish I had more answers for you but the Drs. don't even have the answers, do they?  I think the focus should be on eliminating inflammation in the body...thru all means.  But this is only my little opinion.  What kinds of conclusions have you guys reached about the causes of your particular cases of UC?  Do you think your diet played a role prior to the initial onset?


legalsec
Regular Member


Date Joined Feb 2007
Total Posts : 30
   Posted 3/11/2008 8:22 AM (GMT -6)   
Biscuit,
 
6-mercaptopurine [6-MP] is a immunomodulator medicine used for UC. It is used to suppress the immune system to prevent inflammation. I was questioning about the 6-MP because my doc. want to start me on this next Monday, and I believe it will cause my blood to be too thin in combination with taking coumadin.
 
A PICC line (peripherally inserted central catheter) is a central venous catheter inserted into a vein. I believe this is what Scrappyjrt had placed while she was in the hospital when she had surgery.
 
You are right on regarding immune disorders causing immune disorders. I believe for me, one day my immune system went out of wack somehow. That is my only explanation for my getting this darn UC. I don't contribute my UC to anything else (i.e. diet, illness, stress).
 
Thanks!

Pancolitis - dx December 2006: Supposed to start 6-MP next week; prednisone 60 mg(started again 3/6/08); Colazal 750 mg - 9/day (generic); Canasa 1000mg 1/day; Women's One-A-Day Multi-Vitamin; Calcium +D 500 mg - 3/day; Coumadin 2.5 mg/day (for DVT, dx 2/13/07); Folic Acid - 400 mcg x2/day

Asacol & mesalamine enemas (bad reaction); Seasonale (birth control) caused DVT; cranberry pill - 300 mg  3x/day (urinary tract infec.) can't take with Coumadin;

Lovenox injec. 2x/day (for DVT)


Suns Fan
New Member


Date Joined Mar 2008
Total Posts : 6
   Posted 3/11/2008 10:21 AM (GMT -6)   
Biscuit,
 
You were asking about the SCD diet, most likely from Breaking the Vicious Cycle. It does make complete sense when reading it. Following it is a whole different story. It is VERY strict. You are extremely limited on what you can eat, and they say for it to work, that you have to follow it without cheating. They say that you should start noticing signifcant improvements within one month of the diet. I tried it for 3 months, and didn't notice too much of a difference, plus I couldn't gain any weight, and I was loosing wieght too rapidly. The book said that for colitis patients, it would take up to two years to eliminate the symptoms, and as hard as it was to follow, I was not about to stay on it for two years.
I did find some recipes that were pretty good. It gets expensive and time consuming to make these recipes every day though. I bought a lot of almond flour just so I could have some form of breads again, and you can do a lot with it, but again, it is very expensive.
I do believe that the diet probably does work for a lot of people, it just didn't work as well for me unfortunately, but you will not know unless you try it for yourself. If you type in scd recipes on google, it will bring up hundreds of recipes that you can look at, and you can see for yourself what kinds of foods you are able to eat.
Hope it works out well for you if you try it.

Scrappyjrt
Regular Member


Date Joined Jul 2006
Total Posts : 212
   Posted 3/11/2008 10:49 AM (GMT -6)   
Buscuit,there is now a test for FVL. You go to a Hemo-Oncologist for it. But it is an expensive test,and takes a few weeks to come back. Your Dr. will decide if he thinks you should be tested. No bone marrow,just blood. Legalsec is correct about the PICC line. When treated correctly you can still have surgeries,I came thru the colostomy and rectum removal with no clotting at all. Lovenox is another thinning drug like Heperin,it is a lower molecular weight thinner that has to be injected sub-q. Heperin made my colon bleed,so we had to switch to the Lovenox. I do have to have my levels checked each week,we draw a PTT-INR to make sure my Lovenox dosage is okay.This test checks to see how long it takes your blood to clot. But I live a pretty normal life,and am glad I had my surgeries,they helped get rid of a lot of my UC symtoms. Of course it didn't "cure" it,but life is much better for me now without the pain and constant diarrhea,and having a pouch is not half as bad as soiling my pants.

  1. Colostomy May07
  2. Rectum removal and hernia repair Oct 07


biscuit
New Member


Date Joined Mar 2008
Total Posts : 12
   Posted 3/11/2008 11:10 AM (GMT -6)   
thank you so much for your feedback!  you all are such a wealth of information.  your input will be invaluable to me as my daughter and i try to navigate the maze of treatment options for her and decipher all the medical information out there.
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