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

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.

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.

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.

Ask and it is given......

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.

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.

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.

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.

Here's a good description of the worst-case scenario:

https://www.youtube.com/watch?v=DkGR65CXaNA

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 Why? Because as the cliche says, life gave me lemons, I made lemonade.

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.

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.

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

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.