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Im new here, got some questions for u..

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Ulcerative Colitis
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Posted 5/22/2015 2:37 PM (GMT 0)
Hi

Im 33 years old from belgium and i have 2 months problems with my bowels.
chronic diarea.. cramps and the feeling i must go to the loo.

First weeks it was just some cramps, then there came more and more.
stomach gurgling and more urgency and looser stools.

I had campylobacter but killed it with anti biotics but symptoms are still there.
campylobacter is twice negative now in tests!
I also have bladder pain syndrome (another immune problem).
So im sure this is a beginning of UC or Mc or crohn.

I did a fecal calprotectin test and it showed 107 without bacteria!
Then i advocate on my own and i tried pentasa.
Symptoms improved after 4 days.

questions now:
1) U guys that have UC or MC or chron..how fast did u develop serious symptoms like blood in stool? after 6 weeks of onset already, or was this at 4 months?

2) Is the beginning of this onset of disease the worst part?
does it flare and develops to serieus inflammation the first 1 or 2 or 3 years and then goes milder?
Is the beginning the worst part??

3) do u guys have periods of pretty good periods so u can stop the asacol or pentasa or prednisone??
and have some mild symptoms for large periods?

greets ken
Posted 5/22/2015 3:19 PM (GMT 0)
Sorry you're dealing with this. As far as your questions- every flare varies per person and per instance. In my experience some are worse than others but there is just no telling. Meds- I've been on some medicine since my initially flare - that was over 15 years ago. Just part of my life and a way for me to prevent a bad flare. Hope this helps
Posted 5/22/2015 3:37 PM (GMT 0)
Symptoms depends where your inflamation is. If it is lower part of colon only, you may see only blood but stool can be formed. If your inflamation goes up more in left colon,transverse colon or right colon, you can have diarhea as colon can not absorb water from stool.

Best way to diagnose UC or Crohn's colitis, get colonoscopy with biopsy from each area. Sometimes colonoscopy visually looks ok but when they take biopsy, they can see colitis.

So rather than self diagnosing yourself, go get tested. First rule out any infecton with blood and stool test and then get colonscopy done.

And if it is UC or crohn's, like Doggiedo said each flare is different and you will be on some kind of medication. Hope this helps.

Posted 5/22/2015 3:41 PM (GMT 0)
1) Literally varies from person to person. It can take days, weeks, months or years for a severe flare-up to happen. In my case it took a few years and when it did, I didn't have any blood. Maybe it was 'cos I had Crohn's colitis which was worse on the right side of the colon and largely left the rectum alone.

2) Again, varies from person to person. For some people, their first flare may be the worst one, but for other people their disease gets worse over time: I was in the latter group. Patterns of flare-ups vary wildly too. Some people are in remission for years, even decades, at a time. Other people can only get into remission through having surgery. Boards like HW naturally tend to attract the more complicated, difficult-to-treat cases, so there is a danger of UC seeming like a more severe disease than it really is for most people.

3) It's recommended to stay on maintenance meds even if you're in remission. Please note that doesn't include Prednisone, which should never be taken for long periods of time. If you've got a doc who's happy to keep you on Pred, get out of there fast and find a new doc who understands the dangers of long-term steroid treatment.

Edit: Yes, PamSmith is right. I somehow skipped that part, but self-diagnosis is a terrible idea for many reasons. Go and get a colonoscopy ASAP, if you haven't had one already.
Posted 5/22/2015 3:44 PM (GMT 0)
1) Symptoms came gradually for me, but within a few months it was full on d with blood, stomach pains, nausea and unable to eat.
2) For me, my initial flare was by far the worst. For others, subsequent flares are sometimes worse.
3) I had 4 good years of remission so yes it is very possible to have symptom free periods without a flare, almost like you don't have UC other than the medication you have to take daily. If asacol or pentasa are working and you feel fine on them, then you usually don't stop them. Prednisone is short term, you are only on this for an average of 3 or so months at a time.
Posted 5/22/2015 3:48 PM (GMT 0)
1) symptoms vary from person to person and often flare to flare.

2) same as 1)

3) even when feeling well we are meant to stay on maintenance meds, pred being an exception though since it's more of a bandaid med to help kick start your maintenance meds and aren't meant to be on for long term (due to severe and permanent side effects that can come with being on pred) the longer you're on pred the higher the risk that you'll develop long term side effects from it. If you're having a hard time getting a flare(s) under control then you may have to either up your maintenance meds and/or go back on pred at some point. In general though, having IBD means long term/life long treatment with medications like Pentasa or Asacol, etc.
Posted 5/22/2015 8:03 PM (GMT 0)
Don't stop meds once you're feeling better because that's what makes you feel better.
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