Deep Vein Thrombosis

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.

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.

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

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).

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)

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!

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.

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.

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.!!!

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?

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.

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.