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UC flare ...or not?

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Posted 8/4/2017 1:56 PM (GMT 0)
Was told i had colitis back in December 2016.

Last couple weeks iv started to bleed (heavily), have thin stool, mucus, urgency to go toilet etc.. thought it was a flare up.

Went to the doctors to go back onto Pred, (which was the only thing that stopped me bleeding previously) only to be told he wouldnt put me on it, as he doesnt think the colitis is causing the bleeding as there was 'no signs of inflammatory' when i got my blood results back , and something else must be causing these issues.. (cant stop thinking about rectal cancer)

Go back to hospital Tuesday to be seen, but honestly never been so scared in my life!
Posted 8/4/2017 2:17 PM (GMT 0)
Colorectal cancer is extraordinarly unlikely if you are under the age of 50. It takes many years of uncontrolled UC inflammation for the colorectal cancer risk to even increase and even when it does, it's not like you're suddenly gonna wake up one day with cancer. It takes a long time to develop and colonoscopies (that you get as part of having UC) will spot the early precancerous cells.

If it's not UC causing your bleeding, the next most likely cause by miles is haemorrhoids. I'm not as confident as your doctor that your UC hasn't returned, since hemmies alone wouldn't cause all those symptoms. And blood test results alone simply aren't a trustworthy guide: you need a colonoscopy or flexible sigmoidoscopy to see what's going on.
Posted 8/4/2017 2:17 PM (GMT 0)
I was just diagnosed with colitis.

My symptoms were the same as yours. I had two blood tests while waiting for a colonoscopy, and there were no signs of inflammation. I don't have hemmoroids and I was bleeding too much for that anyway. I was also tested for e-coli, salmonella etc. And there was nothing. Colon cancer is common in my family. I could think of no other explaination, so was certain it was cancer for over a month.

Now I know that 'no signs of inflammation in blood tests' doesn't meant that there's no inflammation. I have lots of it! I saw it in the screen during my colonoscopy! Since then I've heard of other people whose blood tests did not point to IBD who were diagnosed with it.

So I think I know how you feel. It can be all-consuming.
Posted 8/4/2017 2:52 PM (GMT 0)
Colitis and UC are two very different medical conditions in terms of prognosis.

It is important to be clear which we are talking about.

Blood markers of inflammation can be wrong. Some sort of scope should look for inflammation.

Pred alone is not a good answer.

good luck
Posted 8/4/2017 3:33 PM (GMT 0)
Ditto DB,
q
Posted 8/4/2017 3:44 PM (GMT 0)
Ulcerative colitis i have, sorry guys i should be more informative.

Im currently on budesilone 9mg daily and pentasa 1g x2 every morning and night, enemas do not work, the struggle is real :-(

Guess i have real bad symptoms with this flare that i haven't had before (fatigue, lower back ache, chronic bleeding).

Could this be a flare up, even with my inflammatory levels showing that i am fine via blood tests??

Guess i am very nervous is rectal cancer, as my little girl is due in 2 weeks, and very worried the effect it would have on me and my family..

Sorry if i sound stupid, very new to all this Ulcerated colitis marlarkey. (Its all quite scary) as i used to be a fit an active young man :-/
Posted 8/4/2017 3:58 PM (GMT 0)
Being fit and having UC has no connection. The diagnosis hits like a ton of bricks.

Chronic bleeding needs to be checked out regardless.

Have you seen your GI, and has he/she taken a look-see with a rectoscope in-office?

Welcome to the forum.

q
Posted 8/4/2017 4:08 PM (GMT 0)
Yes going Tuesday, very nervous as last time they said there was too much blood then referred me to have a colonoscopy 🙈
Posted 8/4/2017 4:10 PM (GMT 0)
Let us know the outcome....hopefully, it will be a worthwhile one.

Rectal meds....what have you been on?
q
Posted 8/4/2017 6:46 PM (GMT 0)
Have used PREDSOL suppository and rectal foam, had no effect whatsoever and ended up coming straight out of my anus.

I don't know too much about this chronic disease, and every flare-up is giving me different symptoms.. (always having alot of bleeding and mucus, gas, fatigue and urgency to go to the toilet).

Anyone got any advice on what i can eat? should or shouldn't do?

Does stress cause the UC bleeding to be any worse?

I'll let you know how i get on Tuesday, i have everything crossed that it's just a flare up and not the dreaded C word.
Posted 8/4/2017 7:13 PM (GMT 0)
If you have UC then the blood is 99.9% likely to be a flareup of your UC.

To start off with only 3-5% of UC patients ultimately get Colorectal Cancer (CRC), and 96-95% of us never get CRC,

When it comes to CRC odds and UC there are two things that influence it:

1.) The longer you've been diagnosed with UC the greater the odds of CRC. We do not have increased CRC odds at all unless we've had a UC diagnosis for a minimum of 10 years. You're only 1-year into UC.

2.) The extent of your UC influences your CRC odds. Those with Ulcerative Pancolitis (whole large intestine involvement) have the highest odds of CRC, those with Ulcerative Proctosigmoiditis (rectum and sigmoid colon involvement) have raised odds, and those with Ulcerative Proctitis (rectum only involvement) do not have raised CRC odds at all and they're the same as the general population. I don't know the extent of your UC.
Posted 8/7/2017 8:36 AM (GMT 0)
Does anyone else suffer with pain in their lower part of their back whilst having a flare-up? Around the coccyx area..?
Posted 8/7/2017 11:18 AM (GMT 0)
pains associated with UC are way too common and come in all shapes, sizes, severity, and location - even the private parts as you mentioned are not immune -
Posted 8/7/2017 12:42 PM (GMT 0)

Dan93rowe said...
Does anyone else suffer with pain in their lower part of their back whilst having a flare-up? Around the coccyx area..?

We can get pains pretty down low on the spine where it first joins the hip.

CCFA said...
AXIAL ARTHRITIS
Also known as spondylitis or spondyloarthropathy, axial arthritis produces pain and stiffness in the lower spine and sacroiliac joints (at the bottom of the back). Interestingly, and especially in young people, these symptoms may come on months or even years before the symptoms of IBD appear. Unlike peripheral arthritis, axial arthritis may cause permanent damage if the bones of the vertebral column fuse together—thereby creating decreased range of motion in the back. In some cases, a restriction in rib motion may make it difficult for people to take deep breaths. Active spondylitis generally subsides by age 40. Therapy for people with axial arthritis is geared toward improving range of motion in the back. Stretching exercises are recommended, as is the application of moist heat to the back.
ANKYLOSING SPONDYLITIS
A more severe form of spinal arthritis, ankylosing spondylitis (AS) is a rare complication, affecting between 2% and 3% of people with IBD. It is seen more often in Crohn’s disease than in ulcerative colitis. In addition to causing arthritis of the spine and sacroiliac joints, ankylosing spondylitis can cause inflammation of the eyes, lungs, and heart valves. The cause of AS is not known, but most affected individuals share a common genetic marker. In some cases, the disease occurs in genetically predisposed people after exposure to bowel or urinary tract infections. Occasionally, AS foretells the development of IBD. AS typically strikes people under the age of 30, mainly adolescents and young adult males, appearing first as a dramatic loss of flexibility in the lower spine. Rehabilitation therapy is essential to help maintain joint flexibility. But even with optimal therapy, some people will develop a stiff or “ankylosed” spine. Symptoms of AS may continue to worsen even after surgical removal of the colon.

Source:www.crohnscolitisfoundation.org/resources/arthritis.html

Here's a visual on where the Sacroiliac joint is:
/en.wikipedia.org/wiki/Sacroiliac_joint#/media/File:Sacroiliac_Joint.png
Posted 8/8/2017 2:45 PM (GMT 0)
Been to see the gastro team today.. seemed reluctant to do another colonscopy as my UC has just been confirmed.

Been asked for a stool sample? Not too sure why, been placed on Pred 30mg , had more bloods taken and seemed concerned that my UC had spread from being limited to the rectum, as i have a real tederness in my lower stomache.

Said fatigue, bad back, blood and loose stool are all common symptoms of UC, and told me that rectum cancer isn't something that hes concered about at all. (So kind of positive for me).

On the flip side, they've booked me in for a CT scan in a couple of weeks 😓

Anyone know of any diets that help? As i am struggling ALOT last couple of days and the blood seems to be getting worse.

Post Edited (Dan93rowe) : 8/8/2017 8:56:24 AM (GMT-6)

Posted 8/8/2017 4:15 PM (GMT 0)
YES on the lower back / coccyx pain!!! That is my first sign something is going on even before D or bleeding. Most often it represents the beginning of bleeding.

Ditto on others who state the blood markers for inflammation do NOT correlate to a lack of inflammation in your colon. Blood tests could be fine but you can have inflammation visible on scope.

Follow those prednisone orders exactly and don't taper fast because you think you're "better" - you will be right back at the top. Coming out of 10 months on pred and into Humira now.

Good luck!
Posted 8/8/2017 5:20 PM (GMT 0)
"Been asked for a stool sample? Not too sure why"

Often stool tests are to check for pathogenic causes to your symptoms. There's Clostridium Difficile, a nasty infection that mirrors UC symptoms, doesn't respond to UC medications, but is caused by an infection which only responds to antibiotics. If you've been struggling and not responding then it is a good sanity-check to confirm/ruleout C Diff.

Stool tests can also check your Fecal Calprotectin levels, which are a good way to gauge how much active UC inflammation you have within your large intestine. It is a non-invasive way of telling how you are doing without using a colonoscopy.

Look at your lab test form and it should say what it is for.
Posted 8/11/2017 6:50 AM (GMT 0)
Im currently on day 3 of using pred 30mg, and still having alot of bleeding.. any idea when i will start seeing the effects from using this steroid?
Posted 8/11/2017 10:43 AM (GMT 0)
Prednisone can work within days, a week, or take several weeks. It all depends on how severe your flare is and whether you have a strong enough dose of pred to match said severity.

Hope for the bestcase, plan for the worstcase, and land somewhere in the middle. Contact your gasteroenterologist if you don't get a response within 2 weeks.
Posted 8/11/2017 5:41 PM (GMT 0)
I keep getiing pins in needles in my feet now aswell.. only 3rd day into taking pred 30mg surely this isnt a side effect??
Posted 8/13/2017 4:01 AM (GMT 0)
Hey Dan,

When it appears you're having a flare, the protocol for doctors is to do stool samples first. This is to rule out different sorts of infection. The reason for this is, if they give you a steroid and you actually have an infection, it could make the infection worse.

Diet-wise, there's some big ones to avoid, esp during a flare: alcohol, smoking, caffeine, refined sugar, high fiber, seeds, dairy, meats, spicy foods. Basically all the fun things in life! Ha.

What I eat during flares: plain plain foods like rice, no added sugar apple sauce, pedialyte, peanut butter, a banana. You can go round and round on the internet finding things people eat during flares but just be smart and trust your body.
Posted 8/13/2017 8:19 AM (GMT 0)
Wow!! With that much bleeding I am surprised your gastro doctor did not start you on a higher dose of Prednisone. When my bleeding was that intense as well as my urgency my doctor put me on 60 mg for 7 days tapering to 10mg. That was for six weeks. And yes I did get some side effects but it ultimately reduced the bleeding and urgency until he started me on Lialda 4 pills per day. I was so hesitant to take the 60 mg but it wound up being what I needed to get the bleeding under control.
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