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dpmkmm
New Member


Date Joined May 2008
Total Posts : 1
   Posted 5/16/2008 2:09 PM (GMT -6)   
My 13 year old son who has uc was diagnosed with a dvt,multiple blood tests have been done and it was determined he does not have a clotting disorder.Has anyone with uc ever had a blood clot.?Also after reading about all the side effects everyone has and not being able to get uc in control how come no one talks about j-pouch?

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/16/2008 2:46 PM (GMT -6)   
I know one other UCer who had DVT. She has since had jpouch surgery.

I had jpouch surgery and talk about it all the time!!!

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/16/2008 5:39 PM (GMT -6)   
Most people I've heard from who've had the surgery say they wish they had done it sooner. I think the biggest reason you don't hear about it much on here, as they say, it's because for the most part they're out living a med-free UC-free live and don't feel the need to come here as often because they're not feeling sick.

Sometimes I think about having the surgery but there are so many things to think about. I have a big enough problem with my body image as it is so I'm not sure I'm strong enough mentally to handle it yet. But I think after I have kids I'm just gonna get rid of the stupid thing if there isn't a cure by then.

As for the blood clots... I personally have not had one however every visit to my doctor he checks my calves for signs of a blood clot because with UC you're much more susceptible to them (especially since I'm also on birth control).
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


Bum Deal
Regular Member


Date Joined Jan 2008
Total Posts : 34
   Posted 5/16/2008 8:19 PM (GMT -6)   
Hi,
 
Yeah, last time I was in hospital I was given Clexane injections to thin my blood - my main gastro doc (who I trust a great deal) told me there's an increased risk of DVT in UC patients. Apologies but I can't point you to any solid studies, as from what i've read the link is definitely there (http://www.cdc.gov/ncbddd/dvt/faq_dvt.htm#risk). (There's not much info but it confirms UC as a risk factor in the "Who is at Risk? bit.)
 
As regarding J-Pouch, have a look on the "Ostomies" forum on this very website - hopefully it should answer some of your questions. (I have no experience with the surgery procedure myself, so good luck!).
 
 
 
 


DW

Male 30 Years Old.

Diagnosed Pancolitis June 2007

Currently 15mg Prednisolone, 9 tablets Asacol, 50mg Imuran (started Dec 07), 50mg Mercaptopurine (following allergic reaction to Imuran)

Post Edited (Bum Deal) : 5/16/2008 7:28:31 PM (GMT-6)


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/16/2008 8:32 PM (GMT -6)   
This link will take you to a thread where the DVT/UC relationship was discussed recently:
 
 
Welcome to HealingWell, and yes, check out the ostomy board to talk to people who have had surgery.
 
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 5/16/2008 9:16 PM (GMT -6)   
Yes, I have.  In 2006, I was hospitalized for two weeks with DVT and PE, while also in a UC flare.  No one ever attributed it to the UC.  I was found to have Factor V Leiden, though, a mutated gene that can cause blood to clot.  I'm on Coumadin for the rest of my life.
Ulcerative Pancolitis (dx'd 6/2002)
Pentasa (4gm/day)
Prednisone (currently at 5mg/day, tapering by 2.5mg every 2-3 wks)
Aranesp injection every week for anemia
6-MP (discontinued as it lowers my white count)
Immodium-AD (occasionally)
various meds for other conditions
 


Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 5/16/2008 9:21 PM (GMT -6)   
Judy, that link just takes me to the list of discussion areas.  Any idea what board that thread might be on?
Ulcerative Pancolitis (dx'd 6/2002)
Pentasa (4gm/day)
Prednisone (currently at 5mg/day, tapering by 2.5mg every 2-3 wks)
Aranesp injection every week for anemia
6-MP (discontinued as it lowers my white count)
Immodium-AD (occasionally)
various meds for other conditions
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/16/2008 11:04 PM (GMT -6)   
Sorry, try this and see how it works:
 
http://www.healingwell.com/community/default.aspx?f=38&m=1059900
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 5/17/2008 2:04 AM (GMT -6)   
Thanks, Judy.  That link worked.  ;)
Ulcerative Pancolitis (dx'd 6/2002)
Pentasa (4gm/day)
Prednisone (currently at 5mg/day, tapering by 2.5mg every 2-3 wks)
Aranesp injection every week for anemia
6-MP (discontinued as it lowers my white count)
Immodium-AD (occasionally)
various meds for other conditions
 

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