Discussions By Condition: Medical Stories

What is going on????

Posted In: Medical Stories 18 Replies
  • Posted By: rosie 56
  • January 17, 2007
  • 06:07 AM

I am a 27 year old female. I have 2 children. I have DVT and have had this since March of 1998. I know that this is going to sound pretty disgusting, but maybe someone out there can point me in the right direction. I have chronic diarrhea- I honestly can't remember the last time I had a "formed" bowel movement. A couple of months ago, I noticed that when I would wipe- I was wiping blood- not a lot, but it was there. It just went away after a couple of days. Today, I used the bathroom and the toilet looked like it was full of blood. I couldn't tell if it was blood or maybe just coloring from food. It was on the toilet paper as well. The color was a bright red. I immediately had to go again and it was the same thing. Later I went to the bathroom again- this time only to urinate and I noticed 2 streaks of what appeared to be blood in my underwear. What do I need to do?? Is there anyone out there who can help get me going in the right direction??!!

The cause of my chronic DVT is still unknown. I think that the doctors have resigned themselves to saying that it is a blood disorder; although they are unsure of which one- everything that I have been tested for is always negative. They have tried to say that it is hereditary; although no one on either side of my family (as far back as I can trace) has ever had this or any blood disorder. I can go on forever with the saga of my blood clots, but I want to see if someone out there has any answers for me.

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  • the good news is that bright red blood means an origin in the lower part of the bowel.this means it will be relatively easy to find the problem by colonoscopy.it is probably something simple like a bleeding pile,but you cant afford to take chances.the reason for the unformed stools may be unrelated,but needs sorting anyway.it is vital that you arrange for a colonoscopy as soon as possible.you must go .it is not as bad as you might imagine,but be sure to ask for adequate sedation.if it is done properly you will hardly know it is happening.you will be on your feet in ten minutes!be brave and keep us informed.
    Anonymous 42789 Replies
    • January 17, 2007
    • 02:03 PM
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  • Please visit the Emergency Room.I did not understand what DVT is.Be well.
    Anonymous 42789 Replies
    • January 17, 2007
    • 02:08 PM
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  • Please visit the Emergency Room.I did not understand what DVT is. Be well. DVT is Deep Vein Thrombosis aka blood clots. Thank you so much for getting back with me!!
    rosie 56 7 Replies
    • January 17, 2007
    • 05:44 PM
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  • the good news is that bright red blood means an origin in the lower part of the bowel.this means it will be relatively easy to find the problem by colonoscopy.it is probably something simple like a bleeding pile,but you cant afford to take chances.the reason for the unformed stools may be unrelated,but needs sorting anyway.it is vital that you arrange for a colonoscopy as soon as possible.you must go .it is not as bad as you might imagine,but be sure to ask for adequate sedation.if it is done properly you will hardly know it is happening.you will be on your feet in ten minutes!be brave and keep us informed. Thank you so very much for getting back with me. I will definately keep you posted on what is going on with me!! Afterall- I am just one of those little "medical mysteries"!! LOL Again- thank you so much!!! To be honest- I am scared. My step-father had colon cancer. I can't imagine myself away from my kids!!!!
    rosie 56 7 Replies
    • January 17, 2007
    • 05:47 PM
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  • Hello.... You are not alone....I will write up my whole story when I get some time but I have had extensive DVT's in each leg starting when I was 31 for no apparent reason. The closest I have gotten to a diagnosis is "Hypercoaguable State of undetermined orgin" from Mayo. I have read alot about Antiphospholipid Syndrome (Hughes Disease) although I have only once been slightly positive for IGg anticardiolipin antibodies. I am convinced that I have some sort of autoimmune disfunction that will someday have a name. I too have had somewhat frequent bouts of diarrhea for no good reason although it is not everyday and rarely red or black indicating blood. In your case it is important to know what drugs you are taking. This includes supplements. You are most likely on daily warfarin therapy which has many side-effects and cautions regarding mixing with other drugs. You should have been told all about this and dietary concerns when you were prescribed Coumadin. Your PT and INR of course is measured monthly at the very least and if you are found to have an elevated (>4.0) INR, then your warfarin dosage should be changed to get you into the proper target range determined by your doctor. I have seen many patients target for 2.0-3.0 and that is supposed to be enough. I target for 2.5-3.5 because blood clots are scary and expensive for me. I have had little problems with this target range unless I happen to drink too much alcohol (rare) which can give me headaches from (I assume) the extra thinning of the blood. If your INR is too high, it is possible to have some bleeding where you shouldn't and one of the first spots for this to occur is in your gastrointetinal system or stomach and then probably next would be your head. Therefore, it is important to let your doctor know when you have blood in your stool so you can get a PT/INR test to see if you are too anticoagulated. I personally have my own home test for this reason. I actually have two more to sell on ebay because the only way to get it was to buy 4 at once. But it offers me peace of mind to know that I am not out of my target range if I happen to feel sick or have a headache or whatever. Anyway I digress....point here is if you are on warfarin/Coumadin and you see blood in your stool....check with the doctor to see if your blood is too thin. I also have a personal suspicion that warfarin may cause loose stools sometimes. I also take fish oil capsules daily that may contribute to it. And I also have stomach pain many mornings which makes me wonder about IBS or other autoimmune type disorders that affect the gastro system and perhaps blood clots being a symptom of that underlying chronic condition. The doctors keep me guessing.... Good Luck and if you have any other questions for a fellow sufferer....feel free to ask me.
    winsall 15 Replies
    • January 23, 2007
    • 08:39 PM
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  • Oh my Gosh, winsall!!! It literally sounds to me like you are writing about my life!!! I can't believe it!!! It makes me feel good to know that I am not alone in all of this. You just don't know what a relief it is!!! I go to my regular doctor in the am and am having a colonoscopy done on Monday. Of course, I really feel that nothing new will come out of the doctor with the DVT- it never does!! As you said- someday there will be a name for whatever it is. It just really gets so old having to deal with it all of the time. It seems to me that the doctors just get tired of dealing with it all. I have researched and researched until I am blue in the face. I have wanted to go to Mayo myself, but don't have the money. It is hard to hold a job 'cause I am told that standing or sitting all day is not good. What am I supposed to do??!! My kids (bless their hearts) know a little about it and they can tell when I am really hurting. I hate it for them 'cause I don't get to do all the things that I want to do with them. I know that it has to bug the heck outta them, but all at the same time- they seem to understand it all. They worry and I really hate that. Any time I am hospitalized........... the looks on their faces. Anymore though I get diagnosed as having blood clots and sent right back out the door. Like I don't know that I have these things!!! Anyhow- I, too wish to write my whole story down and share with you. I will when I have more time to do so. I don't know if I can give my e-mail addy on here so I will wait and see. Thank you so very much!!!
    rosie 56 7 Replies
    • January 24, 2007
    • 06:09 AM
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  • Well Rosie....I am glad my post made you feel better but you really didn't comment on your medicine or warfarin dosage or target range. The original post involves blood in your stool and that is a possible sign of potentially serious bleeding from too much anticoagulation. There are many people who have blood clots and the typical patient is a woman who suffers either a difficult or failed pregnancy. If it weren't for this fact, I am convinced I would be dead because most of the research and knowledge is a result of the pregnancy issue. I continue to research in hope of finding some evidence that some of my weird symptoms over the years are related to my hypercoag state. I have had some weird vasovagal episodes which sort of sound like anxiety attacks but feel entirely physical as well as some itchy red bumps on my palms and sides of my heels occasionally and also my uvula will swell up and sort of get a bit shiny looking a couple times a year. Weird stuff but overall with Coumadin, I can have a mostly normal life and I only have to deal with the damage to my left leg as they went in and fixed my right leg with a catheter last time so it is mostly normal. By the way, Mayo clinic is not any more expensive than other hospitals and insurance will cover it most times. In fact, it was cheaper for my dad to have his prostrate removed there than at home in the Milwaukee area. Transportation to Minneapolis is the only real expense (we drive) but they really do make you feel like they give a ***t and know what they are talking about versus most doctors. It is a quality place. Unfotunately, they didn't tell mw anything and only confirmed that my care up to that point was appropriate and complete/accurate. Mayo was my second opinion after I had my second DVT. Well good luck and let us know how the colonoscopy goes. I need to get the courage to do that one of these days and see what I have as far as GI problems. -rob
    winsall 15 Replies
    • January 24, 2007
    • 06:16 PM
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  • OK here goes!! Like you, my target range is 2.5 to 3.5 whereas "normal" is 2.0 to 3.0. The amount of Coumadin I take is unbvelievable. I have never been able take take even just 5 mg- it is always up over 12.5- ALWAYS!! Here in the great Kentucky- they just really have no clue- that's why I want to get out of here. My step-dad had colon cancer and went to Vandy to have his surgery and still follows up there. I have thought of trying that route as well. I went to my regular doctor this morning and he seems to be wonderful!! He is young and fairly new. He actually explained things to me in more detail than anyone has within the 9 years I have had this. The whole diarrhea thing could have been caused by my gall bladder (which I had taken out the year before the onset of DVT). He gave me a medicine called Welchol (it is supposed to help filter out the bile- in other words- help to put some "form" back into the ***t). I have to go in for fasting lab work within the next day or two. He also is going to put me back on Lasix to help with the swelling. I just hope that he can finally give me some answers to all of this crap!! LOL Whenever this first happened- I went to Louisville for a 2nd opinion, but got basically the same response. I kept searching and looking and no matter where I turned- I was always told the same thing. It really gets old after a while- as you already know. When it first happened- I ran a 105 degree fever. I have done that twice in all of this. I have the Vena Cava filter in and also a stint within a stint. After Dr. Vora put the first one in- it collapsed and he put another in. I was also the first one that he used Urokinase on. At the time he said that only one other doctor in the US was doing the Urokinase. I don't know if you know anything about it or not, but what it is a clot-busting medicine that goes in and is supposed to bust up the clots. He was only supposed to have to go in once, but when it didn't work- he had to go back in again. It was pretty painful from what I was told. I really don't remember a lot about the first time I was in with these things. They had to put a turniquette (sp?) around my thigh and ankle. It had to be on for like an hour and then they'd come in and release it for 5 minutes and put them back on. The second time- he only had it around my ankle- I still have the nice scar from it all. Obviously- it still didn't work. I never had the whole diet thing explained to me. I was told to stop eating greens, bananas, etc. I have learned over the years more about it all. I recently just got medical coverage back- I haven't been on Coumadin since April. Even with my coverage before the price was atronomical and I definately couldn't afford it without the insurance. I lost my doctor and had to get a new one. It has been a living nightmare!! I never was offered COBRA from my last insurance provider and I even tried contacting the local contact here in Owensboro for it. I never got any kind of response. The insurance company sent me info on Dental, but that was all. It was crazy!! I know that that is against the law- they're supposed to offer COBRA, Correct?? I just don't know. With all of this I have suffered from Depression. I fight that on a daily basis as well. As I said- it is a nightmare!! The only good thing that has come out of this is that I am definately a much stronger person from all of this!! LOL How can you not be?? OK I will stop for now and hope to hear back from you again!! -Jana
    rosie 56 7 Replies
    • January 24, 2007
    • 08:43 PM
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  • Hey you want to know what is weird? To maintain aroud 3.0 INR I take 17.5 mg MWF and 15mg T,TH,SAT,SUN. Nobody can beleive it when I tell them....doctors and such that is... We are quite similar after all..... I had thrombolysis done on my right leg a couple years ago on my most recent DVT. They went in with a corkscrew and vacuum with urokinease or one of those like it being secreted as they went. Then they would leave the catheter in my leg overnight secreting the clot busting juice and went back in the next day to vacuum some more. I do remember it despite getting Versed (which is supposed to help you forget it) and it got painful when the thing was up in my liver where the clot was more difficult to remove. They did a great job overall but I think they got frustrated and quit when I complained about the pain in the liver. I wish I had just put up with it. That surgery was like $60K. My right leg is sooo much better off for the surgery than my left leg. I had no tourniquettes. Generic warfarin should be cheap. I mean like $20-30 a month out of pocket. Have you tried walmart? I do have insurance but even without it....it isnt alot. You should get the highest dosage and split tablets to save money. I split 10's and 5's to get 15 and 17.5 daily. I too had a COBRA nightmare. When I exhausted my COBRA, I was owed a letter within 30 days saying I had insurance until whatever date so I could use it to get other coverage and they never sent it. So after a month of waiting, my coverage lapsed and for two weeks I kept calling and asking for the letter. Thank God our state has a plan for High Risk people like me who dont have employer based insurance and cannot get any other coverage because everyone else was denying me based on my one DVT. So while I was waiting (during the two weeks I wasnt covered) I had my second DVT. I had a feeling that morning that something was up so I mailed my app to the state without the letter I was waiting for 6 weeks for. Well good thing I did cause I ended up in the ER that night and the surgery I talked about happened the next two days. The insurance was in effect as of the day they received it which was Day 2 in the hospital and so only the first day of my stay was out of pocket. That still was many thousands but nothing like what it would have been if I had continued to wait for that damned letter. And that is a law but there is no enforcement of things like this. It is rotten. I know about the depression. We should talk. Do you have an IM that you use?
    winsall 15 Replies
    • January 25, 2007
    • 11:54 AM
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  • We really are so much alike!!! I can't believe it!! I feel a closeness to you and we've never even met!! LOL I have MSN messenger (to go with my hotmail e-mail). My address is cuffs56@hotmail.com. I also have a sit on My Space. That one is: http://www.myspace.com/rosiecuffs. Yes I will explain all the cuffs thing if you wish. LOL Anyhow- we seriously need to talk. You understand all of this so I feel that I don't have to go it alone!! LOL I was told that I can't take the generic warfarin sodium- that I have to take Coumadin. That was from the cardiovascular doc that I first saw back in 98. I will keep this short for now, but hopefully talk to you again real soon!! Jana:)
    rosie 56 7 Replies
    • January 25, 2007
    • 06:48 PM
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  • Jana... Is your dosage stable? In other words, do they have to change the amount of Coumadin you take often? If it IS stable, then there is no reason why generic warfarin will be any different for you. I have gone both routes and to be honest, I think I might be more stable on the generic but really they should be exactly the same. It really doesn't matter what kind of WARFARIN you take if you are having the required blood tests to maintain the correct INR. If you were to try generic and then had trouble maintaining a stable INR then I would say you are one of the few who actually need Brand Name Coumadin but to be honest....I think it's just one of those things that some doctors learned somewhere but nobody has any real proof that it is different or it wouldn't be legal to sell it as warfarin.... Anyway...if that saves you money...I certainly would ask you doctor if you can try it. Maybe get one extra blood test to make sure you are in range but I bet it works the same for you. I will check out your page and keep in touch in case you have any other questions. -rob
    winsall 15 Replies
    • January 25, 2007
    • 11:49 PM
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  • Hi... I just noticed that you said you were off Coumadin for awhile. Are you saying that since you couldnt afford it you just didnt take medicine? How many DVT's have you had? It would seem that no warfarin would be quite a risk for you. Have you heard of pparg? They will give you free meds if you get in the position to not be able to afford them. I have insurance so I dont qualify but if you really dont have insurance ever again then you can check them out at www.pparx.org. Going without Coumadin if you have the filter and stents and stuff I would think is pretty risky.
    winsall 15 Replies
    • January 26, 2007
    • 10:48 PM
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  • Rob...........Yeah- I wasn't taking any medicine until recently. I couldn't afford it at all!! I am back on it now though and go in Wednesday again to see the doc. I have missed talking to you!! I was worried!! I had the colonoscopy one on Monday (the 29th). He sent off a piece of my colon to the lab, but said that everything looked ok. I should be getting the results from the lab back any day now! Who knows though!!! Now that I have your e-mail address- I will definately keep in touch and keep you posted. Thanks for the address for the meds!! I'm sure that it will come in very handy!! I will let you know more later on!! Jana
    rosie 56 7 Replies
    • February 5, 2007
    • 10:20 PM
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  • Cool...glad you got the info....It is also important to not stop taking Coumdin abruptly. In other words...you should taper down your dosage instead of just stopping it one day. You can have catastrophic clotting when you stop abruptly.Also....when you start taking it again...you are supposed to be taking either heparin or Lovenox (both injectable and EXPENSIVE) at the same time for the first few days until you get to the target INR range. This is because Coumadin can actually CAUSE clots to occur when you first start it until you get to the target range. So the Lovenox/Heparin shots keep the clots away until the Coumadin kicks in fully. These things are both important in case you ever get in the situation of no meds but that place I mentioned will get you meds if you dont have insurance. It's a tax writeoff for the pharmaceutical giants.Glad to help. Good Luck and keep in touch.
    winsall 15 Replies
    • February 5, 2007
    • 10:46 PM
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  • All the doc gave me was a script for the Coumadin. I had to take the Lovenox injections while I was pregnant with my daughter. Very expensive!!! I struggled then with it, but I was able to get a medical card due to being pregnant. It was great to hear from you!! I had fasting lab work done after the colonoscopy, but no one ever called with results. He just wrote a script for Coumadin and told me to take as directed- so I am. We'll see what happens!!! Talk to you soon Jana
    rosie 56 7 Replies
    • February 5, 2007
    • 11:20 PM
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  • The same thing has been happening with me for a few months. First they said it was strees, then it was Irritable Bowel Syndrome, then a viral infection. Last week I had a colonoscopy & endoscopy. They found a hernia that will require surgery and anal polyps (they were removed for biopsies). They won't operate at all until the biopsies come back. I hope you find the answer soon. I was told that my condition could have been easier to deal with if they had found it sooner. Hope yo feel better soon. I know what you're going through.
    Anonymous 42789 Replies
    • February 6, 2007
    • 05:03 PM
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  • Rosie, I am very concerned as you probably are!!!! The diarrhea is the first sign and now the blood.. I was diagnosed just recently with colitis. There are ulcerations in the whole intire right colon.. I had the diarrhea that would not stop then the blood. You need to go to your doctor immediatly and tell him what you are experiencing. This is vitally important and should be considered an emergency. I went to the doc and in 2 days was in the hospital having a colonoscopy, that is when they found the colitis. I am on treatment and hopefully I can get this healed. Please don't wait call your doc. Good Luck...... Shareoll
    Anonymous 42789 Replies
    • February 6, 2007
    • 07:35 PM
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  • ^^She has informed her doctor which is why she has had a colonoscopy.....Rosie...call the nurse and get the test results. Nobody wants to do their job these days.
    Anonymous 42789 Replies
    • February 6, 2007
    • 11:49 PM
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