Beat flare but wound up in hospital anyway with stroke from UC

omg, I don't have anything to add, but want to say that I am so sorry about the stroke and wish you the best for a quick recovery. I hope you will get more answers for this. Best wishes,
B

That is terrible. I remember you were just here talking about a trip to Hawaii. I can't believe you ended up having so many problems. I hope you're feeling better soon. Very scary stuff!!

thanks for posting, sorry for your ordeal. If it ain't one thing it's another. I never heard of stroke UC connection either.
Hope you get back to "normal" soon with no further hospital visits, that's scary.
I wonder if the plane ride to Hawaii had anything to do with it, I've heard about clot possibility from sitting immobile for many hours on a plane.

I was taking warfarin as a stroke/heart attack prophylactic because of a heart arrhythmia for about a year after being diagnosed with UC; including during a severe flare that had me out of work for five weeks. When I asked my GI about it he said except during a flare, anticoagulants were OK, and even during a flare cardio trumps GI. I just had to be more aggressive in treating my UC.

My cardio doc was able to invert my atrial fibrillation, and I was able to eventually get off the warfarin, but I still take 325 mg of aspirin daily. Again my GI said cardio trumps GI, and to take my asprin.

The bottom line is that UC is rarely fatal, and is curable with surgery; but a stroke or heart attack can kill or be severely debilitating. Cardio trumps GI! Take your blood thinners!

Hey man, sorry that happened to you. I had something similar happen to me. My problems began with a bad UC flare-up, which then led to me becoming dehydrated. I then developed a 101 degree fever for 3 or 4 days straight along with a very stiff neck and during that same time I developed severe headaches. I eventually could no longer handle the severe pain in my head and went to see my regular doc. He runs some tests and then suggests I go to the hospital. I tell him to go ahead and have me admitted since I knew I was going to need a few days worth of fluids for dehydration. I make it to the hospital and it seemed like the pains were just getting worse. Well, I stay in the hospital for 3 days complaining about my severe headaches and the doctors had no concern at all and all they gave me were pain killers. When I would ask what would cause me to have severe headaches they would just respond with "I don't know". On the third day I was released from the hospital.

Three days later I wake up early in the morning unable to move my left leg and I go straight to the ER. After being in the ER for about an hour or so of being scanned and poked my left arm goes dead and after that the doctor comes in and tells me my brain is bleeding. They get me to the ICU and tell me they are going to treat me with steroids instead of doing surgery because surgery is very risky. Early the next morning the nurse is unable to wake me up so they do more scans and decide to go ahead and remove the clot from my brain.

Before all of this happened, I was asked by several different doctors if I was taking any illegal drugs. I wasn't, so I told them no. While I was in surgery they continued to press my parents about any drug use. My parents knew I would never do any illegal drugs, so they told them I didn't use any illegal drugs nor did I drink or smoke. After I regained some sense after the surgery. I started asking one of the doctors what would cause my brain to bleed and she replied, "Well,we know it wasn't cocaine because we tested you for that." It was like she was implying that since it wasn't cocaine it had to be some other illegal drug.

So now I'm on disability trying to regain full use of my left arm and leg. In November it will be one year since this happened.

If you develope similar symptoms like mine, please make sure you go to the ER and get some kind of head scan. Live and learn, I guess?

aguywithuc said...

Hawaii was for Christmas time - never made it and now it sounds like ICU is going to be astronomical. I was pretty close to going back to work where there is good health care when this happened.

You didn't miss much, it rained alot here last Christmas.

aguywithuc, I was on warfarin for 6 months after my stroke associated with UC (cerebral venous thrombosis), and had my INR (how long it takes the blood to clot) tested once a week on average for the duration. As for Vitamin K, I was told not to avoid it, but to try and eat about the same amount when I was on warfarin. My INR fluctuated a few times though (from 1.2 to about 3.5) - the target was between 2.0 and 3.0, meaning my blood would take 2-3 times longer to clot than average.

Then I was weaned off the warfarin, and have taken an enteric-coated baby aspirin (100mg) daily thereafter, for the last 4 years, to reduce the likelihood of another stroke. I was on heparin while I was in hospital after the stroke. When I was on heparin, I had a several spontaneous nosebleeds, due to my blood becoming very thin, and a couple after I discontinued it and came home from hospital.

I have read that the chances of a second CVT are very low (~ 2-3%), with the greatest risk being within the first 12-18 months. Whilst CVT is a rare cause of stroke, it is most common in infants and people aged in their 20's (mostly women on the pill), so it seems odd the neurologist would say it was rare to happen at 46 (presuming this meant that it was rare to have one at such a 'young' age).

One thing I found helpful with recovery of my (left) arm was to do things with it that I would normally do with my right (dominant) hand - e.g. open jar lids, doors, etc. - force myself to use it. Things that (I think) helped the sensation to come back were - brushing my arm with a hair-brush, typing, playing the piano, holding or feeling something with my right hand (to feel what 'normal' is) and then placing it in my left hand - trying to make my brain realise that it was the same.

jbitBama, I was tested for drugs too when I went to emergency whilst having the stroke. Sadly, the first suspicion seems to be that if you're young and have a stroke, you must be on drugs. I too had blood tests in emergency to prove that I wasn't on drugs. I don't even drink or smoke.

I think my stroke began 3 days after starting 25mg prednisolone to induce a remission, after having severe UC diagnosed (had been previously misdiagnosed and untreated for a number of years). I had a brief, severe headache where the clot was, but then felt fine. Another 3 days later, I experienced numbness in my chest and left arm, felt light-headed, and had weakness in my left arm. about 12 hours later this progressed into a seizure, starting with my left arm, evolving into a grand mal a few hours later, by which time I'd gotten to the hospital. I believe that headache and seizure are not typically symptoms of arterial strokes, but can be for cerebral venous thrombosis (where a clot forms in a vein in the brain, rather than in an artery - like a DVT on the brain) which can be associated with UC, though is extremely rare.

mkl11 - From one hypochondriac to another -- I'm on ortho tri-cyclen and my GI has never expressed concern over it. I've been on it for about 2 years straight (was also on it for several years before that but took a year or so break). I wouldn't worry about it if you are otherwise healthy and you are only 22.

OMG, I'm happy that you're feeling better.