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UC and a Pulmanary Embolism at the same time

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Ulcerative Colitis
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Posted 5/6/2010 3:06 PM (GMT 0)

Hey there,

I'm a 30year old woman that was diagosised with Pan colitis Jan 5 of this year.  Hospitalized for 6 days I had been bleeding for 9 months. I was just glad to find out what was wrong with me most doctors said I had hemroids and to take a stool softener. They put me on the asocol, the 40mg of predisone, and said we will taper u in 5 weeks. At first it was great but then every time I go to 30 I start to bleed, so they put me on rowasa enimas which appeared to help I thought this is what is going to get me into remission. I start to flair again so the next step is Imuran.  In the mean time im cramping in my legs because I had developed a blood clot for 3 months I had leg cramps but my GP didn't catch it.  It was breaking off and going into my lungs, I developed a cough and was very short of breath. My GP said it was stress from the predisone and gave me cymbalta.  So March 19th im flairing again go to my Gastro and he knows right away its a Pulmanary Embolism.

So I stay in the hospital another 2 days they think it was caused by my birth control. So im injecting myself with lovenox for a week. And now im on blood thinners. My period was hell on this. And ive been flairing for 3 weeks. They say I have to be on the thinners for 3-6 months and all my Gastro can do is up my Predisone?  I asked him for how long as im still bleeding and hes like until u stop bleeding. Well now I have something wrong with my stomach terrable pain inflamation, bloating, loss of appatite, senstitve to the touch im very weak. They think its gasristis because of the predisone and blood thinners so they gave me kapidex. He wants to look in there but can't cause of the thinners. He said it would be dangerous because he did a sig on me 2 weeks ago to see how bad the UC had gotten and I bled real easy.

All they can tell me is take your kapidex, wait a month and a half for the imuran to kick in, and stay on the predisone even though its not controling my UC?  Im so frustrated cause they act like im the only person with UC that has ever had a Pulmanary Embolism. Its very frustrateing to have to take 40mg of predisone when its not doing anything but makeing me feel crazy!!!! And all I can think is im going to have to suffer for another 4 months cause I have to take blood thinners?  I hope I have a colon and mind left. At times im so depressed I want to just tell them to take my colon so I don't have to have all the bad side effects of these drugs im on. If its not going to heal just take the thing just to stop the pain.

Posted 5/6/2010 5:05 PM (GMT 0)
I am so sorry for your pain and the fear that comes with it.

Having 2 major medical issues at the same time is hard to deal with.
Make sure you don't get anemic. Sometimes docs forget to check for it so be aware.

Wishing you well.
Posted 5/6/2010 7:06 PM (GMT 0)
Hi...welcome to the forum.

How heartbreaking to hear what you've been and are going through at this time! I do hope that the meds you're on will keep further embolisms from forming and that you will be able to get your UC to a better state soon.

Are you now off the birth control meds?

Please make sure that you're checked for h.pylori and insist on an upper gastro scope to clarify there's nothing else seriously going on in there.

Are they giving you acid reducing oral meds to deal with some of the upper gastro pain?

I'm going to throw this out "just because"....ovarian cysts and ovarian cancer can cause blood clots and some of your symptoms as well...yes, I have knowledge of other women have experienced the same with other issues clouding the facts.

Your situation is very complicated, I do hope the doctors will explore all avenues.

Are you still on the Rowasa as well as another oral 5ASA med such as Asacol?

Please keep us updated!
quincy
Posted 5/6/2010 8:57 PM (GMT 0)

Hey there,

Thanks for the Welcome wink

Yeah, im still on my medicines. And yeah Im off the birth control as soon as I was admited to the hospital with the embolism. They took lots of blood tests and tested me for all the disorders. I then when to a cancer specialist and he did a bunch of tests on me that were all neg.    When my gastro  looked with the sig 2 weeks ago my colitis had improved so much he said it was mild but im so sensitive inside cause the blood thinners just the scope going threw my sig caused it to start bleeding during the test.

They are giving me acid reduceing meds for the pain heck Its so bad I wanted liquid lidocaine but he said he didn't want to give me something to stop it dead because then hes treating the symptom and not the cause. He also tested me to see if my pancreas was acting up because of the imuran and it wasn't.  He said give it till monday and if I haven't improved at all call his office and I guess they  will do a scope, which I wish they would but then he tells me how dangerous it is and how hes not sure how far he could go down and such.  I know something is wrong in my gut cause if I drink a soda I can feel it burn down.  If I eat it hurts if I don't eat its sour. If I get stressed it hurts.  What is really scary is the fact I get pain thats just not in my stomach but radates all around my upper torso, if I stand or walk or do dishes I just cramp.

I also have been thinking what if the cramping is a result of a  3 to 4 week flair that im still bleeding from that they can't control because of the thinners. So I really don't know If its my UC out of control giving me so much weakness and pain.

                One of my meds makeing me really sick.

                 Or somethings really messed up in my gut probally because one of the meds im takeing.

I really like these threads because people on here know what its like. I have started to feel so alone my husband is great but ive been so sick for so long and I just go over with him and talk to him so much about it and what could be causeing it and every ache and pain that I feel sorry for him tongue I wish I had something else to talk about but when a person is in pain its like im stuck until I can get out of the pain and live life.

Posted 5/6/2010 10:13 PM (GMT 0)
They are unfortunately connected. Or, having UC puts you at a higher risk of PE. My brother has had UC for 10 years and had PE this year. Was put on about six months of coumoudin. His first respirologist would not acknowledge there was a connection, but when he went to a better specialist (a hemotologist at a top hospital) she told him he was definitely at higher risk due to his UC. Glad they caught it early.
Posted 5/7/2010 12:07 AM (GMT 0)
Hey there Killcolitis,

Your brother is the first I have heard that had the PE and UC. Ive looked all over the internet for info. My heart goes out to him how is he now? PEs are painful and scary but im glad they caught it too because ive heard alot of people have no symptoms until they can't breath at all. It often goes undiagonised so your brother and I are the lucky ones. My gastro told me he has heard there is a connection between the UC and blood clots too , but he just seems baffled on how to treat a flair while im on the blood thinners. And it seems like my lung doc, my gastro, and my proton nurse seem to think its ok if I bleed all the way threw my coumoudin treatment as long as it doesn't get worse. He told me in the hospital if it did get worse they might have to use vein filters but when we asked if i needed them he said im not bleeding enough for that. So I don't know whats going to happen next. I just hope they can stop my stomach pain. The scary thing is if its my blood thinner and or the predisone causeing an ulcer I can't stop the medication to get better. So UC and PEs at the same time are a real pickle. I hope your brother is alot better I know my lung plersy went away in about a month but that first month was the worst and heating pads work magic. I just remember not being able to sleep in a bed and having to lay in a recliner at least I can lay down now.
Posted 5/7/2010 6:17 AM (GMT 0)
hI rose254 and welcome to hw.I'm sorry you're going through a lot at the moment. I'm glad you found this site, it's been such a help to everyone who finds it.

FELL GOOD SOON
mARTY
Posted 5/7/2010 8:35 AM (GMT 0)
Thanks Marty,

I'm calling my Gastro tommorrow because the pain has woken me out of an ambien sleep and im crying uncle im willing to try any test they are willing to try to find out the cause of this gut pain dangerous or not. Its so incourgeing to hear from others that have gone threw the UC nightmare.
Posted 5/7/2010 9:43 AM (GMT 0)
Hi

I have had UC since 2000 (thankfully not particularly active at the moment) and had a severe case of PE last year - still on warfarin (coumadin) 14 months later. I had exactly the same thing with not being able to lie down - the pain was unreal - at first the back pain was my main symptom so they didn't work out it was blood clots till I'd really bad pain for over two weeks, during which time I'd hardly managed to sleep at all. Once they worked it out, the hospital didn't tell me there was a known connection between UC and PE, but luckily my brother is a medical researcher and he looked it up and told me straight away - the hospital confirmed once I asked. There is definitely an acknowledged link there, but its not that common - so it doesn't show up that well in google searches unless you use the full-on medical terms (like thromboembolism instead of PE etc).

I had a CT scan after 6 months which showed the clots had all gone, but they are keeping my on warfarin in the meantime as it was such a severe case. When I had a colonoscopy recently they just reduced my warafin dose a bit and checked with a blood test - my INR went down to 1.9 and the colonscopy went fine- the other thing they can do is change the blood thinners to the heparin injections (clexane or similar) for a few days - as they only last 12 hours you can miss just one, have a procedure, and then have another one immediately afterwards so the period you are at risk is as short as possible.

Good luck with your Gastro.
Cassey
Posted 5/7/2010 11:41 AM (GMT 0)
I'm surprised that your GI has not heard of the connection between blood clots and Uc. My GI nearly had a fit when I mentioned to him that I was on hormone therapy for a short while for another health condition - synthetic hormones can cause an increase chance of clotting in Uc'ers. Go check out www.ccfa.org It can tell you all about Uc and/or IBD in general.

Btw, welcome to HW! I am so sorry to hear of all the difficulties you are having. But definately come back to us whenever you feel like because we can truly understand what you're going thru.
Posted 5/7/2010 11:59 AM (GMT 0)
Sorry to hear you're in such rough shape.  Your doctor probably has a point in normal circumstances: treat the cause, not the symptoms.  But, this is temporary.  I'd push to treat the symptoms, too.  It's not like it's one or the other in this case or that treating the symptoms is masking the cause.

Good luck.

Posted 5/7/2010 1:32 PM (GMT 0)

Hi Rose -

You're definitely not alone.  I was diagnosed with UC 3 years ago at the age of 31.  Almost 2 weeks later I got a blood clot in my leg and a PE.  Because I was so young, I thought it was just a pulled muscle in my leg from trying to exercise too soon.  I had the PE for over a month and they didn't connect the dots until my leg started hurting again and I mentioned it to my dr.  I was on thinners for over a year. 

Good luck to you!

Posted 5/7/2010 11:07 PM (GMT 0)
Thanks for everyones storys and encouragment. :-) My doctor called back today and ordered a h ployi blood test. It takes 3 days to a week to get it back. Im in pain but I don't know what else to do but wait.
Posted 5/8/2010 6:20 AM (GMT 0)
Oh I"m so sorry.   I know how you feel...so I did do it...I finally had the surgery.   And I was a bit different, I got the blood clot after surgery, while in the hospital.  But, yeah,  I had to give myself lovenox, then go on coumadin.  It sure was nice to be able to go off it!!!  Good luck to ya, hun!!  hang in there...its the difficult times, that make us appreciate just how good it feels to feel good...hoping that day of feeling good comes soon for ya!
Posted 5/12/2010 12:34 AM (GMT 0)
Hey Christie,

I just read your blog, Wow its amazeing how strong the human body is.  I have been thinking mines about to give out with the UC,PE, werid irregular periods because I can't take BC anymore cause of the PE, and then the werid stomach pains that are still undiagnoised but you know your website gave me alot of hope. You have been through so much tryed so many things and it seems to be what im going through. I really enjoyed your website. :-)

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