DVT After Recent UC Flare

Introduction:

Male, age 50, diagnosed with Ulcerative Colitis age 26; professional educator-Middle School, Associate Principal, previously Physical Education/Health Teacher, coach (basketball, football, track). Dad of beautiful, smart, athletic 16 year old, husband of my best friend and l life partner Katie.

Some more about me:

Avid runner, cyclist, fitness nut. Have run numerous races from 5k to Marathon (completed 2) distance; cross-country skier competed in numerous races (completing over 10+ ski Marathons, 5 of the North American Birkebeiner, largest race in North America); competed in triathlons (completed 2Half-Ironman races)

Symptoms:

Currently weening off steroids, symptom free right now…thank God!

DVT After Recent UC Flare

Up until the past 5-years I have done well and spent a majority of my life in remission. Have worked with the same Gastro until his retirement last Sept.

Fast forward…after 3-weeks of steroid therapy feeling normal…Monday, May 13, 2013, unexplainable soreness in left calf…overnight excruciating pain…Tuesday, 6:30am had my wife check out my calf, she was upset that I didn’t wake her and said she was taking me to Emergency; after some painful hours in Emergency Along with an ultrasound and CAT-scan I was diagnosed with a large blood clot-DVT in upper thigh and calf. Avoided emergency surgery to eliminate swelling after IV Heparin was started. Home now on Cumidin for next 3-6 months. Clot still exists but I’m told the body will absorb it over time (does not give me great comfort) so I’m going to be monitored while on the Cumidin because of the risks it brings. I’m told I have no restrictions but to listen to my body and don’t push too much too soon. Spoke with my Gastro Dr today and he agrees the DVT is related to my UC.

I saw one post that was similar to my situation but they did undergo surgery and their clot was removed and no Cumidin therapy was needed.

Have others with UC dealt with blood clots and Cumidin?
Has anyone heard of other medication options?

Thanks for any feedback!

Medications:

Asacol daily therapy (2400mg/daily); prednisone 15mg tapering 5 mg weekly; I use a quality probiotic ‘Mega Flora’ 20-billion CFU, Lysine 500mg, folic acid

written by Kirk

submitted in the colitis venting area









7 Responses to DVT After Recent UC Flare

  1. Tim May 23, 2013 at 1:04 pm #

    Wow .. glad you took your wife’s advise. I’ve had UC since 1991 and never heard that DVT could be associated with UC. Thanks for the post with this important information.

  2. Ken May 23, 2013 at 1:17 pm #

    Tim,

    Glad you are going to be OK. Never heard of this as a symptom of UC,but nothing surprises meany longer. Thanks for sharing.

    I’m also a runner, (did 3 half marathons this spring) and have a sprint tri this weekend. Always glad to see others staying active with this disease.

    This also is a reminder to listen to my wife when I don’t want to go to the doctor!

    Ken

    • Kirk June 6, 2013 at 7:24 pm #

      Ken…sorry for such a late reply. I’m much improved but not yet back doing my ‘regular activities.’ I have gone back (crazy end of the school year). I had no idea there was any link between UC and blood clots….until I did a little research after my incident. UC patients are at risk (greater than general population) and much greater risk during a flare for clots than the general population. I will go through blood work to rule out other ‘deficiencies’ such as factor 5 as Jenifer suggested. I’m hopeful that there is no genetic ‘issue.’

      I believe an active lifestyle can help manage UC in general. Until my recent flare and the DVT I’ve never missed a day of work and only missed about 1-week of running several years ago during a flare. I plan to return to my regular activities hopefully soon. I’ve found that my best years have been when stress is low and I’m enjoying life’s simple things.

      Best of luck to you-stay active and enjoy everyday & every workout!

      Jen
      Thanks for the advice. The Dr on my case wants me to see a hematologist to rule out any underlying issues. I’m hoping everything comes back negative but…I’ll find out. Sounds like you do the best you can with your diagnosis. Hope you can get your flare under control and get back to ‘good health.’

      Natalie,
      I have also read that back issues can also be related to UC. I’ve struggled with some low back issues through the years but manage most of the time to do pretty well. and see a chiropractor regularly. Because of the nature of UC, it seems that so many things can be related to it. Lets hope. And pray for few and far between flares….stay healthy!

  3. Jennifer Schaeffer
    Jennifer Schaeffer May 23, 2013 at 1:22 pm #

    Hi – Have them check your blood for Factor 5 Leiden. That’s what I have. It’s a hereditary blood disorder that most people don’t know they have. It does cause blood clots, but luckily, I haven’t had any. My sister and other family members have it, but none of them have UC (I actually have Proctitis). My issue: I’m supposed to take a daily Baby Aspirin, but that can cause bleeding with the UC. Actually have a meeting with my GI doctor in a week to figure things out. (Getting over my most recent flare-up, so I’ve been off of it…can’t take anything else, like shots, for the blood disorder, as I also have a brain aneurism and the shots can make it pop.) Oh the joys…FEEL GOOD!

    • Natalie May 23, 2013 at 5:54 pm #

      Kirk,

      So sorry to hear of your DVT diagnosis but glad to hear that everything will be under control with the cumidin. Two weeks ago, I started to have excruciating pain in my lower back that traveled down to my butt and into the front of my thigh down to my knee. I had a thought it could possibly be a blood clot but actually figured I had sciatica. I just waited it out….if I still had the pain, I was going to go to either a Chiropractor or Physical Therapist. Luckily, the pain subsided. Thank God! I don’t know if that was related to my UC or not. Good luck Kirk!

      Jennifer,

      Sorry to hear of your blood disorder and the aneurism. How difficult it must be that you can’t have any shots for the blood disorder or baby aspirin. How were you diagnsed with the brain aneurism? Was it after you were diagnosed with UC? Good luck to you too Jen!

  4. Jennifer Schaeffer
    Jennifer Schaeffer May 28, 2013 at 12:40 pm #

    Hi Natalie – I was diagnosed with the brain aneurysm when I was pregnant! I had a migraine, and my OB/GYN sent me for an MRA. I was only 3 months pregnant, and if the aneurysm was larger, I would have had to terminate the pregnancy. Luckily, it is very small and we just watch it. I was diagnosed with Ulcerative Proctitis about 2 years before my pregnancy. There appears to be no link between the two…the doctors think I was probably born with the aneurysm. It’s always something, right?

    BE HEALTHY! Jen

  5. Charlene H
    Charlene January 25, 2014 at 8:39 pm #

    I had a DVT too. I have had UC since 1989. I had the DVT in 1999. I was playing with my kids and when I got up off the floor it felt like someone stabbed me in the back of my leg. I was in the hospital for a week on IV heparin and then 7 months on Coumadin. I did not have surgery. I was also told it would desolve. In 2013 I had another Venus dobbler done. The clot is gone so the Dr was right. I was never very athletic so it wasn’t a major lifestyle change for me. My valves were damaged by the clot and I now have lymphedema. I still wear compression socks 15 years later.

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