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taterbug
New Member


Date Joined May 2009
Total Posts : 6
   Posted 5/6/2009 12:42 AM (GMT -6)   
So has anyone ever heard of someone dying from UC?
 
Seems to me it is really just a nasty, nuisance illness, but not a killer.
 
What say ye?
 
Taterbug

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 5/6/2009 2:22 AM (GMT -6)   
It is possible to die from UC if you don't get treated in time. The most common cause of death from UC is from toxic megacolon.

I don't think many of us die from UC, because most of us either use alternative treatments and/or medicine to treat our conditions. And if that doesn't work, we get J-pouches.
Joy - 47 yrs and counting
Colitis Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 5/6/2009 6:37 AM (GMT -6)   
Having Uc doesn't mean a death sentence and the only time I can see of anyone dying from it is if they totally do not take care of themselves, like in absolutely no medical intervention with severe symptoms. I guess one can die of dehydration, anemia or toxic megacolon. But the odds of that ever happenening is.......well you have a better chance of getting hit by lightening.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/6/2009 9:05 AM (GMT -6)   
i used to say that UC was a disease that ruined your life but didnt even have the decency to shorten your life span.

Most people who die die from complications, like med side effects, or toxic mega colon, or dehydration, stuff like that. not the actual disease itself

UCinGV
Regular Member


Date Joined Mar 2007
Total Posts : 403
   Posted 5/6/2009 9:08 AM (GMT -6)   
People with UC are at a higher risk of colon cancer, which can kill you. But under treatment I don't think anyone dies just from UC.
12 Asacol
100 mg Imuran


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 5/6/2009 10:59 AM (GMT -6)   
I have a colleague whose father died from complications related to UC. That was 15 yrs. ago. I also read an online article about a young woman who died from UC. I asked my doctor about death from UC and he said it is very rare, but it can and does occur.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone down to 10 mg

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/6/2009 11:10 AM (GMT -6)   
I knew one person in the area, known to my husband's family, who was in her 30's. I never heard exactly what happened.
That young blonde acress from Poltergeist died from a bowel obstruction and septic shock, but I think she had Crohns.

I think we have less chance of dying from colon cancer because we have colonoscopies more regularly and have pre-cancerous polpys removed. Assuming we have them regularly...

I've always assumed I would not live to a really old age, because of the toll this disease and the meds take on my body. But who knows.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 5/6/2009 11:18 AM (GMT -6)   
I need to live to at least 82 just to catch up.
 
Tony Snow maintained his health, took his meds, had his colonoscopies, and still died of colon cancer from uc.
 
When even Readers Digest starts questioning the effectiveness of colonoscopies, there's a larger issue afoot, and in this case it's that they're not all they're cracked up to be.  It's looking wiser and wiser to me that many European countries place a heavy emphasis on colectomy at the 20-25 year mark.  It's contoversial, to be sure, but it's something to think about.

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/6/2009 11:26 AM (GMT -6)   
20-25 years old, or 25 years into the disease?
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 5/6/2009 11:36 AM (GMT -6)   
20-25 years into the disease.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 5/6/2009 12:49 PM (GMT -6)   
It's pretty rare to die directly from UC, it's even rare to die from crohn's and there are generally more complications with crohn's since perofrations are more common with CD than UC and with CD the many layers of the intestinal lining can be affected compared to UC where the inflammation is limited to the surface of the lining only, but even at that the biggest risk of that is a fistula (which is why fistulas are more commonly linked to CD...toxic mega colon is about the biggest risk but you'd feel symptoms of that (it's quite painful) and would likely be treated/have it caught before you'd die from it.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 5/6/2009 1:18 PM (GMT -6)   
I almost didn't get treated in time. My GI was in panic mode when I first saw him. It was because I had to wait to get my insurance so that I wouldn't have a pre-existing condition.

I was told by my PCP that people like me live to a very old age. I have low blood pressure, a low heart rate, and am in great physical condition. I think the fact that I have the chance to live to a very old age has made me less inclined to take Colitis medications. I'm going to need my bones and kidneys when I'm in my 80s and 90s.
Joy - 47 yrs and counting
Colitis Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 5/6/2009 8:05 PM (GMT -6)   
Complications or extra-intestinal disease can lead to all sorts of problems that could contribute to death....even one can have perforation from a colonoscopy, allergy or organ failure from meds...etc.

One woman I know of had asthma. She chose to go the natural route and her husband told me she died from asthma. Actually she died from being stupid and ignoring the symptoms that should have taken her to the doctor long before she basically suffered from suffocation.

I may die from PSC which has come in conjunction with UC.....

I take my meds for UC, asthma and hopefully keeping my body in some sort of status quo will help prevent the PSC from becoming active.

I'm just learning to like myself....would hate to die too soon after this point.

quincy
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 5/6/2009 8:17 PM (GMT -6)   
Never heard of PSC....I just googled it....nasty.... Do you have it now and are taking meds for it?
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Started left-sided, most recent scope shows pancolitis
Medications:20mg pred (as of 4/27/09), 12x pills Asacol per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Multivitamin.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 5/6/2009 8:25 PM (GMT -6)   
Q, good chance you would have gotten PSC even if you hadn't gotten UC, there is no dierect link to the 2 conditions. It's still very rare to die as a result of having an IBD, as I mentioned above, if one was to have a perforation, you'd pretty much know it and would likely be in the hospital to get it taken care of before you died from it (my MIL experiance with her perforation). As far as the meds used for UC, the ones that can cause organ failure or severe issues like that are ones that you'd be monitored while on them.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 5/6/2009 9:11 PM (GMT -6)   
Possibly......chicken or egg? who cares, I have it, so that's not my situation. It happens more in males than females..I'm female, what does that say? The point is that it's not treatable and it's considered fatal but not terminal. there is absolutely no cure for it, and the meds are only to keep the bile flowing, not to slow or stop the progression.

And I said one cannot die from UC alone....one can die from a freaking cold if it's ignored long enough and left to fester into a nasty infection....or even die from a piercing of the tongue if it gets infected.

One can die from smoking.....see where I'm going? One can die from eating candy and choking on the stupid thing...ever watch 101 ways to die?

no use in debating it because there are all sorts of stuff that can go wrong given the right circumstances.......

quincy
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 5/6/2009 9:18 PM (GMT -6)   
Point is, with all the newbies here I think the last thing they need is to be scared that they will die from having an IBD when it's very rare, but thanks for pointing out the obvious that there are many ways to die.
My bum is broken....there's a big crack down the middle of it! LOL :)


quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 5/6/2009 9:40 PM (GMT -6)   
OMG......you want to protect the world too. The newbies have an internet and if they come here for information they can check out what freaks them out and make their decision for themselves rather than hanging on every freaking word on here.....and I was a newbie with PSC and knew I would eventually die from it unless something else got me first.

And with all the information I had...there was only one article where a doctor mentioned that the testing in itself was flawed and could exacerbate or put an early state of PSC into high gear.

So, it is what it is..


Besides you make sugar out to be a death sentence....balance it out please.

q
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 5/6/2009 9:46 PM (GMT -6)   
Here's balance for you, I'm talking about the OP's question about death and UC and I only mentioned one little thing about your PSC yet in your last post you only discuss your PSC, and that's not what this post is about...again, bottom line, no sense in scaring people about dying from UC when it's very rare.

Sugar can lead to death in the form of diabetes, cancer, shall I go on????
My bum is broken....there's a big crack down the middle of it! LOL :)


quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 5/6/2009 9:59 PM (GMT -6)   
well, it's nice to know that we think the same. Must be the weather again.

Well, UC and PSC are linked...sorry...at least in my case....so I can blame it on UC if I die.

You should get your hormones checked.....or have some chamomile tea to soothe your mood.

I'm waiting for a caramilk bar soon on its way.

enjoy your evening.....

As for the OP's original question....no, you probably won't die from UC....unless something happens from something completely related or not.

quincy
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 5/6/2009 10:12 PM (GMT -6)   
I should get my hormones checked? Who's the one flipping out in these posts? Not me, quite obviously you need your sugar fix, as we all know, sugar does affect mood as well, which you've proven with your flip replies. Trust me, we don't think the same, I don't make it habit of accusing every first time poster as being a spammer (DRDR) because of their veiw/experiance with diet. Which BTW you still haven't shown any concrete evidence that food does not affect flares.  I also would never have the nerve to tell another new member that shares the fact that they are HIV positive, not to have children, not just because they have UC but especially because of being HIV positive as well, so no, we don't think the same at all.

Sorry OP for getting dragged into going off topic on your post, I know better enough than to do that so I apologize for doing so.


My bum is broken....there's a big crack down the middle of it! LOL :)

Post Edited (pb4) : 5/6/2009 9:18:13 PM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 5/6/2009 10:22 PM (GMT -6)   
and so it continues....take a break already
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/6/2009 10:43 PM (GMT -6)   
Ladies, I wonder, since those who hang out often can get PMS all the same time, do you think it can happen over the internet if we all chat too often lol??? I have PMS right now so I am just trying to be funny, not piss anyone off, so no claws ok. I am calling a cease fire between you two before this thread gets locked on the poor OP - not that I'm a mod or anything... but now I'm seriously curious, how does that work where girls that spend a lot of time together get on the same cycle? Time to hit the google :)
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 5/7/2009 12:19 AM (GMT -6)   
quincy said...
and so it continues....take a break already

Take your own advice...ironic I'd even have to tell you that.
My bum is broken....there's a big crack down the middle of it! LOL :)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 5/7/2009 12:22 AM (GMT -6)   
FitzyK23 said...
Ladies, I wonder, since those who hang out often can get PMS all the same time, do you think it can happen over the internet if we all chat too often lol??? I have PMS right now so I am just trying to be funny, not piss anyone off, so no claws ok. I am calling a cease fire between you two before this thread gets locked on the poor OP - not that I'm a mod or anything... but now I'm seriously curious, how does that work where girls that spend a lot of time together get on the same cycle? Time to hit the google :)

Yup, my daughter and I are on the same cylce (and she doesn't even live at home anymore) however, I'v already had my rag 2 weeks ago and as you can see from my posts, I haven't been the one freaking out in my replies tonight...I used to PMS but since I cut sugar out of my diet that doesn't happen anymore.
 
:)
My bum is broken....there's a big crack down the middle of it! LOL :)

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