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Honesty please, what's the worst thing that can happen to us with UC?

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June4th
Regular Member
Joined : Jul 2017
Posts : 28
Posted 7/13/2017 9:29 PM (GMT -8)
I may very well have UC,

Will I need a colostomy bag?

Life span?

Increased colon cancer risks?

Surgery?

Wear diapers?

Anything else?

My biopsy said chronic inflammation in the cecum and active proctitis but I'm still in disbelief or denial. Please don't sugar coat that life is great regardless etc

Thanks to whoever replies. Sorry for the negativity.
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jerseyguy1
Regular Member
Joined : Jun 2017
Posts : 97
Posted 7/13/2017 10:27 PM (GMT -8)
It sounds like you are having a pretty awful night.

One of the moderators will be along soon to offer you a much more thoughtful answer than I can offer. Like you, I am just a person with UC.

I won't sugar coat a thing. Having UC sucks. It is life changing.

I'll never forget the day when I was first diagnosed that I was driving to work and there was emergency pothole construction and I was stuck in traffic for two and a half hours and eventually I had to pull over to the side of the road to poop on the side of the road. It was all over my pants. So, I had to buy sweatpants at the college bookstore in which to teach. I still have those sweatpants as a reminder of those bad old days.

But, your doctor will work with you to develop strategies to bring down the inflammation. Many, many people live long energetic lives, working to fulfill their own purpose.

Can I or anyone else guarantee that the eventualities you mention will not occur?

No.

Only your doctor can work with you to give you really good answers to your questions.

But, while you are waiting to hear from more knowledgeable people than I, you are likely to hear from people who have had surgery who are living wonderful lives.

The people on this board are truly amazing and are a wealth of knowledge. You really are not alone. You will get good answers here from people who have been where you are and who understand what you are experiencing.

Hold tight and draw upon your sources of optimism.

The moderators are on their way to give you really good answers.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16428
Posted 7/14/2017 2:41 AM (GMT -8)
See my inline responses in green below.

June4th said...
I may very well have UC,

Will I need a colostomy bag?
75-percent of UC patients do not need colectomy-surgery (removal of large intestine), and only 25 do ultimately need that surgery. So the odds are against you ever needing one. As an FYI, the defacto surgery for UC is called a j-pouch procedure and the end result enables pooping as you do now without an appliance/colostomy bag. J-pouch involves creating an internal pouch with the end of the small intestine to store stool and attaching it to the rectal sphincter muscles. You can hold poop for a long time, and urgency and other UC symptoms are gone.

Life span?
There is no statistically significant difference in life span between UC patients and the rest of the population. You should live just as long as your peers despite your UC diagnosis.

Increased colon cancer risks?
97 percent of us do not get colorectal cancer and only 3 percent of us ultimately do get it. Odds are in your favor here. The two factors that impact our CRC odds are UC-severity and time since initial diagnosis. Our CRC odds increase the longer we've had UC. After 10 years since our diagnosis we are screened annually or biannually via colonoscopy to counter tgat increased risk. Proctitis patients (those with only UC in their rectum) have no statistically significant increased risk of CRC. Proctosigmoiditis (rectum and sigmoid colon involvement) have increased CRC risk, and pancolitis (whole large intestine involvement) have a greater risk. CRC is generally a slow grower so there's time to catch it, infact increased screenings usually catch pre-cancer abnormal changes (dysplasia) and remove the large intestine for treatment before it turns to a cancer.

Wear diapers?
Accidents from crazy urgency are a concern on our minds. Many of us have never worn diapers, some have briefly during the worst of their flares (near incontinence) until a solution was found and they healed, very few wear them on a regular, ongoing, and indefinite basis (surgery often comes well before that).

Anything else?
UC increases our odds of having skin problems, joint pains, eye problems, and increases our risk of blood clots (DVTs especially). I'd try not to worry, not everyone gets these but they are extra-intestinal complications that some of us might run into and are at least good to be aware of.

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MarjieKay
Veteran Member
Joined : Jun 2017
Posts : 611
Posted 7/14/2017 3:40 AM (GMT -8)
The best thing I can offer is to say to try and chill. Yeah, the uncertainty sucks, but odds are that you'll fare much better than the visuals your worried mind currently presents.

Not only that, but stress seems to be our worst enemy. The best thing to do if one has health anxiety is to dwell upon the folks here who have positive outcomes and try and assume your situation will be ok, too.

I am by no means attempting to belittle your perspective, on the contrary, as I too spent some time worrying about worst case scenarios. But when the dust settled, I realized that I was causing myself a host of unintentional misery by projecting crappy outcomes.

Just learn as much as you can and pay close attention to YOUR body....we all respond a little differently and the details really help , IMHO.
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Richard in NY
Regular Member
Joined : Nov 2012
Posts : 208
Posted 7/14/2017 4:18 AM (GMT -8)
With CRC, you also need to look at the cumulative risk and not just the risk time sliced into periods:



/www.ncbi.nlm.nih.gov/pubmed/11247898

Gut. 2001 Apr;48(4):526-35.
The risk of colorectal cancer in ulcerative colitis: a meta-analysis.
Eaden JA1, Abrams KR, Mayberry JF.
Author information
Abstract
BACKGROUND AND AIMS:

Controversy surrounds the risk of colorectal cancer (CRC) in ulcerative colitis (UC). Many studies have investigated this risk and reported widely varying rates.
METHODS:

A literature search using Medline with the explosion of references identified 194 studies. Of these, 116 met our inclusion criteria from which the number of patients and cancers detected could be extracted. Overall pooled estimates, with 95% confidence intervals (CI), of cancer prevalence and incidence were obtained using a random effects model on either the log odds or log incidence scale, as appropriate.
RESULTS:

The overall prevalence of CRC in any UC patient, based on 116 studies, was estimated to be 3.7% (95% CI 3.2-4.2%). Of the 116 studies, 41 reported colitis duration. From these the overall incidence rate was 3/1000 person years duration (pyd), (95% CI 2/1000 to 4/1000). The overall incidence rate for any child was 6/1000 pyd (95% CI 3/1000 to 13/1000). Of the 41 studies, 19 reported results stratified into 10 year intervals of disease duration. For the first 10 years the incidence rate was 2/1000 pyd (95% CI 1/1000 to 2/1000), for the second decade the incidence rate was estimated to be 7/1000 pyd (95% CI 4/1000 to 12/1000), and in the third decade the incidence rate was 12/1000 pyd (95% CI 7/1000 to 19/1000). These incidence rates corresponded to cumulative probabilities of 2% by 10 years, 8% by 20 years, and 18% by 30 years. The worldwide cancer incidence rates varied geographically, being 5/1000 pyd in the USA, 4/1000 pyd in the UK, and 2/1000 pyd in Scandinavia and other countries. Over time the cancer risk has increased since 1955 but this finding was not significant (p=0.8).
CONCLUSIONS:

Using new meta-analysis techniques we determined the risk of CRC in UC by decade of disease and defined the risk in pancolitics and children. We found a non-significant increase in risk over time and estimated how risk varies with geography.
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17872
Posted 7/14/2017 5:48 AM (GMT -8)
OOOh, worst case scenarios, fun to think about - but almost NEVER happen.

Here are a few.

  • Cancer. People with UC are at increased risk for Colon Cancer, as Richard points out. On the positive side, colon cancer is treatable. On the other hand, some UC medications have a risk of a rare and aggressive cancer called HSTCL Hepatosplenic T-Cell Lymphoma. This cancer is very rare and aggressive, and being it is quite uncommon, there are not a lot of options for treatment. The prognosis is quite dismal and often ends in death.

  • Unsuccessful Surgery. about 20% of people with UC end up having surgery. I did. Mine has been successful and I am living SO much better than I did the entire time I had UC. Unfortunately, not all surgery is successful. You have to be realistic and realize that over 95% of people only regret not having surgery sooner (even people who opt for permanent ostomies), but the 5% of people who end up worse off, can be in dire straights. Either they continue to suffer with UC symptoms, they are diagnosed with Crohn's, they have short bowel and they end up unable to eat, constantly going #2, suffering blockages, on tons of drugs...

  • Septic Shock. Either from fulminant UC or medications. If you have very severe UC that is unresponsive to treatment, you could end up with a bowel perforation that can lead to sepsis. The drugs themselves weaken your immune system and leave you susceptible to infection and sepsis. Worse than sepsis, is septic shock (this happened to me from UC drugs). Septic shock is very serious and can lead to organ failure and ultimately death. /en.wikipedia.org/wiki/Septic_shock

  • Severe UC. A life with severe UC is pretty terrible if it's not responsive to treatment. If it gets bad enough a person could literally be frightened to leave their house. Even with a diaper, it's humiliating, smelly, expensive and you're walking around with diaper butt. Over time you lose friends, family, spouse, career options. You end up sick, alone, destitute, unable to get insurance, unemployable, in pain, making 30 trips to the toilet (day & night) with zero notice, on tons of drugs that make you feel terrible and you can't afford, and the cherry on top is the consideration that this illness is genetic, so you will likely pass it on to any children you have & they can look forward to all the same "worst case scenarios" possibilities.
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MarjieKay
Veteran Member
Joined : Jun 2017
Posts : 611
Posted 7/14/2017 5:57 AM (GMT -8)
Ask and it is given...... shocked

I might (if it were me) after digesting all of that, reiterate the fact that these possibilities are rare enough to not spend too much time preparing for them.

Can't hurt to understand the serious nature though, I suppose. Knowing those things has certainly helped me be more diligent about adhering to my docs suggestions.
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Andreita
Veteran Member
Joined : Aug 2011
Posts : 3838
Posted 7/14/2017 6:49 AM (GMT -8)
I think the worst is toxic megacolon and death if untreated. But nobody with a healthy mind would not go to a hospital if that happens.
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Plucky
Regular Member
Joined : Jun 2013
Posts : 383
Posted 7/14/2017 9:33 AM (GMT -8)

June4th said...
I may very well have UC,

Will I need a colostomy bag?

Life span?

Increased colon cancer risks?

Surgery?

Wear diapers?

Anything else?

My biopsy said chronic inflammation in the cecum and active proctitis but I'm still in disbelief or denial. Please don't sugar coat that life is great regardless etc

Thanks to whoever replies. Sorry for the negativity.

Well *the worst* has pretty much been my life since January.

My answer would have to be:

The worst thing that can happen is your diagnosis gets changed to Crohn's disease.

Good luck, and may the odds be ever in your favor.
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Canaveral
Regular Member
Joined : Aug 2016
Posts : 268
Posted 7/14/2017 9:34 AM (GMT -8)
Worst case scenario is, your UC goes into clinical remission but you have zero improvement of your symptoms whatsoever, and the rest of your life is a nightmare because you're chained to a toilet 24/7 and are scared to walk to the mailbox for the imminent threat of an accident.

<----This person.

(Screw you, colon.)

Post Edited (Canaveral) : 7/14/2017 11:39:52 AM (GMT-6)

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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16428
Posted 7/14/2017 9:43 AM (GMT -8)
I'm sure a few people with UC that are now celebrities and a few have won the multi-million dollar lottery jackpot but those situations are highly improbable outliers and very unlikely to happen to you or to I. None of us anticipate to be rich or a celebrity after getting UC. The same goes with the highly improbable, really rare Uc complications, yet they somehow get within our minds and nest.

The mortality rate with UC is the same as the general population due to modern medical care. Sepsis (from intestinal perforation from severe inflammation or infection from excessive immunosuppressive), toxic megacolon, and the types of lymphoma associated with UC meds are all very rare and very treatable with access to modern medical care. A very few amount have died due to UC but it's extremely rare unless somebody refuses hospitilization and doctors suggested treatment. Ceetainly it's good for us to be aware of such things, know what tgey mean and when they're likely to occur (and suggest it to our doctors).

I would never suggest anybody to wear a set of rosary-beeds for constantly worrying about every single possible complication we can have. As health anxieties feed on that sort of thing.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16428
Posted 7/14/2017 9:47 AM (GMT -8)
The one thing UC does is hit us hard in quality of life and anxiety when we flare badly. Remissions we're normal. Just try to make remission bliss long, and flare misery as short as possible. If the suffering from a flare is unending and most meds fail the answer is a surgery as that does give back a good quality of life.
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17872
Posted 7/14/2017 12:56 PM (GMT -8)
Stop sugar coating!!! We are trying to come up with the worst possible, albeit, extremely uncommon scenarios. Can anyone paint an uglier picture than I did?

I actually had a few of those things happen to me, surgery (luckily it was the key to getting my QoL back), septic shock, and lived with severe unresponsive UC.
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June4th
Regular Member
Joined : Jul 2017
Posts : 28
Posted 7/14/2017 6:22 PM (GMT -8)
Thanks guys I appreciate it.
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beave
Veteran Member
Joined : Mar 2007
Posts : 2355
Posted 7/14/2017 6:50 PM (GMT -8)
Here's a good description of the worst-case scenario:

https://www.youtube.com/watch?v=DkGR65CXaNA
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June4th
Regular Member
Joined : Jul 2017
Posts : 28
Posted 7/14/2017 6:53 PM (GMT -8)
LOLOLOL
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Red_34
Elite Member
Joined : Apr 2004
Posts : 23581
Posted 7/14/2017 7:32 PM (GMT -8)
Worst case scenario? Let's see...besides what already have been said. Having children but being unable to attend various school functions because you're afraid of crapping yourself in public or in too much pain. Making plans with friends for an exciting night out - which you were really looking forward to, only to have to cancel because your colon is being too squirrelly. To not be able to take an N-Said when your joints are on fire so you settle for a hot bath instead. Oh and let's not forget the enemas that you do at bed time - oh so much fun! And the ever lovely colonoscopy that you have to have every year or 2 after reaching the 10 year mark.

UC changes EVERY aspect of your life. But! Every dark cloud has a silver lining. Yes this is a very challenging condition and it can seem bleak at times. I have had UC 26 year but never lost my optimism and humor smile Why? Because as the cliche says, life gave me lemons, I made lemonade.
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June4th
Regular Member
Joined : Jul 2017
Posts : 28
Posted 7/14/2017 8:17 PM (GMT -8)
Do flares get worse over time or the same?

My first flare if this is indeed UC, had no blood, no urgency (frequent bm's) but never had to run to the bathroom, maybe once or twice, but I was working darn near the whole 4 weeks at my job which is fire department. Also never had blood, no food has bothered me ever in 37 years.

I said this in another post I just did, but let me say it again here if no one read the other, a huge thank you to this forum, it helps me so much physically and mentally to have people here.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16428
Posted 7/15/2017 3:28 AM (GMT -8)
Flares are random in severity, no two are alike. Some are mild, others are moderate, while others are complete hell incarnate. I had a really severe flare followed by a real minor one. Much like a box of mixed chocolates, you never know what it'll be.
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MarjieKay
Veteran Member
Joined : Jun 2017
Posts : 611
Posted 7/15/2017 3:29 AM (GMT -8)
Yeah June4th, there is a HUGE array of different manifestations I've seen here at this forum. So much so, that it makes me wonder if we are all actually suffering from the same disease and not a collection of them instead.

I am an outlier, too. My primary symptom is lots of mucus and constipation. But if I let these go too long (while trying alternative remedies, etc) then I end up escalating to blood and mucus both.

If it weren't for my biopsies that indicate recurring inflammation and ulcerations, I'd think I had hemmies instead.

Even though this is my primary description of symptoms, I still do get some VERY strange changes out of the blue sometimes.

I am happy to report that I am the most controlled right now than I have been in 19 months, but if you see my sig line, I am trying a bunch of different approaches all at once.
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judyjo2011
Regular Member
Joined : Aug 2012
Posts : 21
Posted 7/15/2017 7:45 AM (GMT -8)
Longevity:
Well, here's my story. I am 71 years young. I have had UC since about a month after I turned 16 years old. Do the math. 55 years. I have outlived via life span my mother, sister, grandmother, none of whom had UC or any form of bowel disease.

Quality of life: CAREER: I won't lie. My quality of life has been affected. Not extremely but somewhat. I did go to college. I became a teacher and had a long and successful career (over 40 years). It was not always easy. For all of my career, I got up at least 2 hours before I wanted to arrive at work. Mornings were always hardest for me...symptom wise. Still I had days at school where I stood in pain teaching, fearing an accident if I could not get to a bathroom. I always tried to have a classroom close to where there was an adult facility. And eventually I developed trust with one colleague close by who would cover my class. SOCIAL LIFE: For me, this was the hard part. Because I was young, and not really dating much when diagnosed, my social skills lagged behind. Plus it was at a time when there were not as many meds out there; tests consisted of barium enemas and sigmoid scopes and I felt constantly embarrassed and demeaned. Having just really hit puberty bigtime at age 14, I was still uncomfortable in my own body. Having UC made it much harder. When I did start dating in college and after, I was never able to talk about having this disease. It was just too embarrassing and I did not know one person who had this horrid disease. No internet, no support groups. It was kind of lonely. I did have good friends, but even they never really got it because I never really looked sick..... I never married though I had a decent amount of relationships. I am sure more factors than the disease were involved but over time I became OK with, in fact happy with my status (I have seen too many friends in miserable marriages......). As well, I really feared having children. From age 16 through age 25 I was on and off heavy duty doses of prenisone. I always feared either passing on UC or having offspring suffer some issue due to all the meds I took.

NOW. I started having some longer periods of "remission" in my late 40s, 50s...especially after menopause. At 71 I have been going through somewhat of a flare. I know my disease is considered "moderate" now though when I was diagnosed at 16 I was severe, spent a month in the hospital, lost 30lbs in a few weeks, and needed 6 blood transfusions. But prednisone then seems to reverse the pancolitis to the ascending left portion. I still get frustrated when I flare but now as senior citizen, most of my friends/relatives in my age group are beginning to go through health issues much worse, from cancer to MS to diabetes to depression.

I will never say this is an easy disease with which to deal. It is not. But when I am in remission mode, I feel proud and happy to have beat back UC. When in a flare, I come here or other forums to talk to others, get support, and learn about new treatments. I hope that soon there is a cure......no one should have to live with this disease any more than those living with other diseases. When I was young, I felt few people cared much about those of us with IBD. Now I know there are many groups and medical personal out there and that should give you hope.
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Celeriac
Regular Member
Joined : May 2017
Posts : 197
Posted 7/15/2017 11:28 AM (GMT -8)
What? No mention of the potential for debilitating joint pain and swelling? Or did I miss it?
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ewafromwarsaw
Veteran Member
Joined : Jun 2013
Posts : 1423
Posted 7/15/2017 3:07 PM (GMT -8)
when you have uc, all terrible things may happen to you, but when you look round, you will see that the same horrible things may happen to those who have been uc-free throughout their lives smile
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Poppie
Veteran Member
Joined : Feb 2014
Posts : 2169
Posted 7/15/2017 3:16 PM (GMT -8)
I worry about getting a blood clot in my leg, or someplace. My grandmother had UC and died in hospital due to a blood clot in her leg, so yeah I worry about blood clots.
I worry that I will get another auto immune disorder as I already have a few since contracting UC. Once you have UC you are extremely susceptible to other diseases illnesses.
I have a real fear that the Medicine I am taking isn't going to work and I will end up having to have surgery, which could kill me in the wrong hospital.
I worry that my daughter will get IBD. I am the fifth family member to get it.
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judyjo2011
Regular Member
Joined : Aug 2012
Posts : 21
Posted 7/15/2017 4:09 PM (GMT -8)

Celeriac said...
What? No mention of the potential for debilitating joint pain and swelling? Or did I miss it?

I honestly have not have issues with joint pain. My ankles do swell but I am 71 and overweight, so there's that. My joints (wrists and ankles do have strange bumps I attribute to prednisone while still growing).

I did forget to mention I did have a bout with uveitis but that was just last year and after having UC for 53 years.
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